Dave’s Great Adventure, Book 3
Chapter 1, Verse 5
February 25, 2008
Honored Heroes and Small Worlds
You know, we had really never thought about going to Kauai. I didn’t even really know where it was. Yeah, it was out in Hawaii somewhere, but with all those islands, who could keep track of them? I didn’t even know how to say it. It wasn’t until we were landing at the airport in Kauai that I found it had three syllables. I thought it was pronounced sort of like “cow-WHY” but as we landed, the flight crew welcomed us to “kuh-WHY-ee.” Just like “Hawaii,” but with a “K” instead of the “H.” And a “U” instead of the “W.” Okay, and only one “I” on the end. Other than that, just like “Hawaii.”
So just what were we doing in Kauai.
I went to college at the University of Texas at El Paso. When I started classes out there in 1966 it was called Texas Western College. That year, the basketball team won the national championship when our coach played five black players against Adolph Rupp’s white guys from Kentucky and beat them. Hollywood likes these kinds of stories and made a highly fictionalized version of the story into the movie “Glory Road” a couple of years ago. Good story, but not a lot of truth in it, just like in most movies that are “based on a true story.” Texas Western College/UTEP is still the only school from Texas ever to win the national championship in basketball.
Out in El Paso I met Kathleen Doyle. She was kinda quiet and shy, like me. We hit it off pretty well after I finally got up my courage to ask her out on a date…to a basketball game. I had thought for months that she was dating a guy named “Johnny” but when I found out that she wasn’t I gathered up all the courage I could find and nervously called her one evening: “Hi, this is Dave. Would you like to go to the basketball game on Saturday? You would? Great! Bye!” Later I was able to talk to her at greater length. And as it developed, things did indeed go pretty well.
Kathy and I were married a few years later and our marriage produced three kids. We also spent a lot of time in El Paso after we graduated from college, as I trained in and worked at the Army hospital there after medical school. Our kids loved El Paso too, and ultimately all three would also go to UTEP for varying lengths of time. So now we had five UTEP alums in the family. And then two of them married UTEP alums too, so we’re kinda inbred.
We’re members of the UTEP alumni association, have been for years. When we moved from Colorado to Texas, we joined the Dallas Chapter. We had to. Our daughter was vice-president and chief “cheerleader” and organizer for the group, keeping lots of the activities going. The other family members were in the group too, and we’d often get together to watch basketball or football games, at local venues when UTEP was playing in town, or at local sports bars when they were on TV. We’d get frequent e-mail messages from the alumni group about things that were going on. One day in late 2006 we got a message from another alum named Jessica out in El Paso.
We didn’t know Jessica, but Jessica was raising money to run in a marathon in Vancouver, I believe, in memory of her mom, who had recently died of leukemia. On her web page she had pictures of her bald mom, sitting with various members of the family, shortly before her death. Her story struck a chord with me for the obvious reasons and I sent her a significant donation. A few weeks later, she e-mailed me to ask about my donation and if I had any connection with this disease, since I’d sent more than the average she’d been getting. So I told her my story about my dad having died of CLL and that I too had it too. I found out that she was a member of the Leukemia and Lymphoma Society and was running with a part of the LLS called the Team In Training. She asked if I was a member and I wasn’t. She suggested that I might want to become an “Honored Hero” with the group and I said I might, not really knowing what the heck that meant. Next thing I knew, she had contacted someone in Dallas and an application to join the LLS as an “Honored Hero” appeared in my electronic in-box. I filled it out and sent it in.
A week or so later I got a call from a young lady in the LLS who asked me if I wanted to join them as an Honored Hero. We talked it over and it sounded like an easy enough job, involving meeting with people who were working out with the teams and not requiring too much in the way of public speaking, which can still scare me, even at my age and after all I’ve been through.
What this was all about was being an image, a real-live person, for the folks in the Team In Training (TNT) to see and identify with. The TNT folks are a fund-raising and training arm of the LLS. The TNT recruits regular folks like you and me and helps them train for events while they raise money from sponsors, friends and family. The athletes train for running and walking marathons and half-marathons, 100 mile bike rides and triathlons. Many of those in training have a personal connection with the disease, with a parent, sibling, nephew or niece or friend who has been affected by the disease. But many are doing it for the training, the adventure or just to be with friends who are doing the training. In any case, the Honored Hero program takes folks like me who are or have been affected by leukemia or lymphoma and makes them a part of the teams. That way the folks doing the events can see who they’re helping with their fundraising efforts, so it won’t be just an anonymous organization that’s getting the money they work so hard to collect.
Kelly called me a few days later. She’s one of our Honored Hero coordinators and has a personal connection, as her son, Ethan, had leukemia when he was three years old. He’s now almost six years into his remission and considered a cure. When he was ill his dad ran a marathon with TNT and as he finished the race, he gathered up Ethan and carried him across the finish line, in a wonderful metaphor. The image gives me chills it’s so beautiful. Kelly now runs marathons with TNT and has done so for years. Kelly invited me to “Kickoff,” which was coming up in a few weeks, when they would start a new season with a new crew of folks training for their events. Kickoff was going to be held at one of the larger hotels in Dallas, and Kathy and I made plans to go.
I expected that I’d meet up with twenty or thirty folks who were gathered to talk about the upcoming season. Instead I was amazed to find many hundreds of people, perhaps a couple thousand or more, and what was a huge pep rally, with lots of cheering, noise and noisemakers, music pouring out of the speakers around the room and videos going on huge screens. Introductions eventually followed, and we heard inspirational talks, including one by another Honored Hero who had beaten her disease, a lymphoma of some kind, and was herself now going into training for an event. This went on for about an hour and then we broke up into smaller groups. Kathy and I joined our team, called the DFW (Dallas-Ft. Worth) Metro Team, and this was the group I had been expecting to see, a group of about sixty or so folks. I was introduced as one of the Honored Heroes, was given a T-shirt with the TNT logo on the front and “Honored Hero” on the back, and thus began my new job.
Now, I have felt from the beginning, a little uncomfortable about being called “Honored Hero.” One of my first tasks after joining TNT was to write up a little bio for the team. In it I told them about myself and about my struggles with leukemia but suggested that “Honored Hero” was way too much title for me, that I’d done nothing particularly heroic nor honorable to deserve that name. I did the things I needed to do in fighting my disease not because I was a hero of any kind, but rather because I really had no choice in the matter. On the other hand I kind of felt that the folks on the team, the ones that were working out and raising money on behalf of folks like me should be my honored heroes. I asked them just to call me their mascot. So I became probably one of the most elderly team mascots in sports history.
The team meets a couple of times a week to get training tips, to receive a little information about leukemia and lymphomas, and to train in their event. The typical meeting times are 7AM on Saturdays and 7PM on Wednesdays. I thought that if these guys and gals were doing this for me, the very least I could do was to get up early on Saturdays and go out on Wednesday evenings to be with them from time to time. Even if I couldn’t run the miles with them, I could be out there and walk while they ran, and get to know them. It’s my new job as mascot; I bring Kathy with me and we go out to be with the team once or twice a week, and we’ve been able to meet a bunch of great people by doing so.
Neil is our running coach. He’s a lawyer who teaches at SMU and has been with the LLS for years. He’s trained at least a couple dozen teams for TNT completely on his own time. He does it for no pay, and is dedicated to the team. And remember Martin? He’s Neil’s brother and is on our team as a mentor, one of several folks on the team who shepherd new trainees along as they prepare for their events.
Last summer Martin, Kelly and several other of our teammates went to Anchorage to run in the Midnight Sun Marathon (I think it was called) at the time of the solstice. They had a great time but Martin came back from Alaska with a bunch of mosquito bites on his ankles. Martin kept scratching them and they were getting worse and worse so he saw a doc while he was in San Antonio (Martin travels a lot) to see what needed to be done. The doc saw that Martin had an infection and prescribed some topical antibiotic and steroid ointments. But the next week at training, he was talking about the scabs on his ankles that wouldn’t get better, and they were spreading. Hmm…sounds like impetigo to me, I said. I offered to prescribe some systemic antibiotics for him to treat the problem and so off we went to the nearby Walgreens to get him a prescription for cephalexin, my favorite antibiotic for lots of things.
Problem was, it didn’t help. After taking the oral antibiotics for a few days without any improvement he went to see a real doc, a dermatologist, who apparently could tell from across the room that Martin’s problem was not impetigo or any kind of infection but poison ivy! Poison ivy?! And he prescribed the appropriate meds. I told Martin that was why God invented dermatologists—to take care of things simple gynecologists couldn’t figure out. But ever since then I’ve been known to the team as Martin’s gynecologist!
The TNT has a number of differing fund raising activities. It sponsors dinners, garage sales, sells TNT items, and then has a couple of major activities each year. One of them last year was a wine tasting at a local winery in Grapevine, Texas. I know that name sounds very pastoral to the non-locals, but please don’t get images of valleys with neat rows of grape vines up and down the slopes for the town of Grapevine. It’s a neat town, but is completely surrounded by interstate highways, and if fact the grapevines of the winery we went to grow right along a freeway. But the winery graciously sponsored our party and about four hundred folks paid $25 each to attend, helping our cause. At the wine tasting we also held a silent auction, selling several hundred items which had been donated to the LLS or solicited by our members. There were meals, plane and boat rides, small electronics, beauty items and a lot more. Among the items was a certificate donated by American Airlines for a three night stay in a luxury resort on Kauai, worth $1500, travel not included.
One thing Kathy and I really like to do is travel. It’s our greatest extravagance, so that particular item got our attention. We’d never been to Kauai. So I bid and bid again and eventually won the coupon, paying about $560 or something for it. What a deal! But then we got home with the coupon and I started looking up fares, and I found that it was going to cost us in the neighborhood of $2,000 to get there and back! Not such a deal, maybe. But you know, as I’ve been asked several times by my family, “What are you saving your money for?” Indeed. We scheduled the trip to Kauai for early February as you well know by now. And there we had the spectacularly good time that I’ve described to you already, but we also had one of those “small world” experiences too.
I’ve told you all about the Marriott Resort and beach club and the fact that nothing was included in the $500 a day rates, not even breakfast. So on our first full day on the island we went across the street to look for breakfast, trying to find a little local place we’d seen an ad for. Since the cruise ships that come to Kauai dock not too awfully far from the area of the Marriott Resort, there are a lot of places in the vicinity which cater to tourists, with travel agents, tour guides, souvenir shops, helicopter rides and lots of little, or not so little, restaurants. The place Kathy wanted to go to was in a small two-story cluster of buildings with a small courtyard in the center which housed a number of these tourist oriented activities. Kathy walked in, looking intently at all the signage along the walls and above the doors, searching for the place she’d read about. A man and a woman were sitting on a bench near the entry way and Kathy passed by them as she walked in. I looked at them…and looked at them. They were engrossed in a pamphlet as they sat outside a helicopter tour agency. Finally the woman looked up, saw me and said, “Dave Eckberg?”
Man, we hadn’t laid eyes on each other in many years, and had no idea whatever that they’d be there, but there were Sheri and Bill. Sheri was a long time friend and a nurse I had worked with in the OB clinic in Denver for several years. We had gone to the wedding of one of their daughters and just missed the wedding of the other, when I couldn’t attend because of my first course of chemotherapy in the summer of 2002. Sheri had moved up in the organization and left our clinic to go into the medical computer business of the company several years ago. She and Bill were in Kauai on vacation (February is a GREAT time to get out of Denver for warmer climes) and we were there because we’d bought the coupon at the silent auction. What an amazing coincidence! They had to hurry along to catch their ride to the helicopters but we made plans to meet up again later. “Later” was that evening when we joined them at an unbelievable restaurant at the water’s edge not too far from the Marriott, a place called the Beach House which has a completely unobstructed view of the Pacific Ocean to the west. From its location the patrons in the restaurant and lots of other folks too, can watch the sunset. Apparently there were lots of sun worshippers among the crowd, as a number of the people huddling along the very narrow beach were doing Tai Chi or yoga or something as they watched the sun god Ra drop behind the edge of the Pacific Ocean. Meanwhile Kathy and I and Bill and Sheri were able to take in nicely prepared local cuisine as we watched the onset of the evening. We were able to have a wonderful time together talking about all the usual things old friends want to catch up on; family, friends, work, and how they were doing with their jobs and how we were doing with retirement. Bill and I also tried in vain to see the almost mythical “green flash” at sunset but were thwarted by some distant clouds on the horizon.
So, you see, that's what we were doing in Kauai. If I hadn’t gone to UTEP I wouldn’t have married Kathy and wouldn’t have had those three kids who also went to UTEP. Then I wouldn’t have joined the UTEP Alumni group in Dallas and wouldn’t have gotten the message from Jessica, so I wouldn’t have joined the LLS and the TNT. And I wouldn’t have attended the silent auction at the wine tasting and wouldn’t have bought the coupon for the vacation in Kauai, and wouldn’t have met up with Sheri and Bill there. Is this a logical connection? Man, the drugs are already taking over the synapses that hold my brain together.
There was a box waiting for me when we got home from Kauai, a box from my friends at the TNT. They know how chilly those infusion rooms always seem to be, and how cool the fluids are that patients have put in their veins, and how cold all that makes us during our treatments. Thinking ahead, they made up a “blankie” for me with “Mascot Dave” embroidered on one corner and “Go Team” on the other. It’s a nice plush blanket and I used it to keep warm every day of my infusions and I’ll be using it for the rest of my treatments too. These guys are great and I’m fortunate to have them, and so many other good friends, on my side. Thanks bunches guys, and we’ll see you again soon.
I just got back from the doc’s office this afternoon. My white count is still dropping and it’s getting into worrisomely low territory already. I’ll tell you the details in the next installment so don’t let your subscription lapse!
Mascot Dave
dreck@prodigy.net
http://www.adventureswithleukemia.blogspot.com/
Monday, February 25, 2008
Thursday, February 21, 2008
Houston...we have a (minor) problem.
Dave’s Great Adventure, Book 3
Chapter 1, Verse 4
February 20, 2008
Houston…we have a (minor) problem
Well, you know, the problem with chemotherapy is that it whacks your immune system and so you have to be real careful to avoid crowds and sick people. And, you know, the problem with chemotherapy is that it’s given in hospitals and clinics. And that’s where crowds OF sick people tend to congregate. Heck of a deal.
When I’m doing this stuff, Kathy always runs interference for me, handling the money, opening the doors (so I don’t touch doorknobs), steering me away from any coughing she hears, giving me the hand sanitizer before I eat and stuff like that. But we still have to sit in waiting rooms. M. D. Anderson is a very popular place, but for that perverse reason just about all the folks that are there are sick, many of them desperately so. The halls and elevators are crowded with people huddled under blankets, wearing masks, wearing knit hats over their chemically balded heads, and with tubes emerging from under their sleeves or over their collars. It makes you sad to see so many very, very ill folks. In the best of circumstances, hospitals harbor many of the worst bacteria around. Having lots of sick folks there mean that lots of bad bugs congregate in hospitals. You don’t want to be in a hospital any longer than you absolutely have to be.
So my last day of this round’s chemotherapy, on Valentine’s Day, went well, but because I was not unexpectedly feeling tired, we spent an extra night in Houston (without a massage!). But by the time we got home Kathy was sick. Nothing too serious, mind you, but she had a scratchy throat, runny nose, a little cough developing, and the usual signs of a cold coming on. She was becoming the person she tries to keep me away from.
So she bought lots of the alcohol hand stuff, got some masks, made me start using a different phone from the one she used, and even tried to move into the guest bedroom. But I wouldn’t let her. She wears masks whenever she’s preparing food, wipes down the TV remote before she hands it to me and is even spraying the tub down with Lysol after she gets out! She won’t get close to me. Man… tough love!
Meanwhile, the drugs really hit me. This weekend I was pretty much down for the count. I had the “fuzzies” bad and couldn’t read the paper. I spent most of my time horizontal, either in bed or on the couch. I expected that, but what I didn’t expect was splitting headaches. I hadn’t experienced them before, but I had been getting them each day since the Rituxan infusion last Monday, and they were getting worse each day. I went through a lot of Fioricet and Imitrex (drugs for migraine headaches) but was able to get only temporary relief. I finally broke the headaches with a combination of four drugs that I’m not going to spell out for fear that someone else might take it as “doctor-recommended.”
A few other things happened too. I’ve been slightly hoarse since about day two of the infusions, but that tends to happen after the steroids and all the fluids I get. But it just hasn’t disappeared yet. Maybe a touch of Kathy’s cold? And whereas I generally gained about 12-15 pounds with each infusion in the past (between all the steroids and fluids), and even needed special jeans for my “fat” days, this time I’ve lost about six pounds, at least partially because the miserable headaches put a damper on my appetite for several days. But I can stand to lose a few pounds.
Folks often ask about the side effects when I’m undergoing the infusions. Let me mention a couple more, one of which I don’t have. First, I’m not losing my hair this time. I may lose some with time, but the last time I did the FCR regimen in 2002 (without the Avastin) my hair thinned a bit but I didn’t go bald.
And the Zofran, the miracle drug I told you about that is so great for nausea that I was able to eat my Ruggle’s burger and follow it with crème brulee…well, it does indeed work great. It quiets the gastrointestinal system so very effectively that nausea is eliminated. But it works so well that, uh, elimination is eliminated too. Food doesn’t come up, but it doesn’t make progress toward the, the…nether aperture either. I guess when my pregnant patients, to whom I gave Zofran, complained of constipation, I blamed it on the pregnancy and Denver’s dry climate, which were certainly factors in the problem. But I’m guessing that the Zofran didn’t help at all. It’s not a problem that commonly affects guys, seemingly being more of an issue for with the gentler sex. Seems many women get it when they travel…don’t know why, but they do. Anyway, it’s not a problem I’m generally familiar with, but one that I resorted to a little milk of magnesia to take care of after I started to get pretty uncomfortable. Good old MOM.
For all my whining, though, the side effects of my chemotherapy cycles have been far less than those folks getting drugs for breast cancer, most lymphomas, and many gastrointestinal cancers. Those folks can be just deathly ill with nausea and vomiting, weakness, mouth ulcers, diarrhea, extremely depressed immune systems and white blood cell counts and so much more. I have much to be thankful for.
I went in to our local clinic on Monday to get my first post-infusion complete blood count (CBC). I was blown away to hear that my white count, which had been about 88,000 before we started, was down to 3,100! My gosh, after only one of the six planned infusions we have destroyed 97% of the white cells that had been flowing in my veins. And what is more amazing, really, is that of the 3,100 white cells left, most of them were bacteria fighters, the neutrophils. In other words, the chemotherapy had effectively targeted the bad guys but spared most of the good guys. That’s because of the Rituxan.
[WARNING: TECHNICAL STUFF FOLLOWS] Rituxan is one of a whole new category of drugs. It’s not even chemotherapy, in some ways, because it’s an antibody; a murine (or mouse) antibody, believe it or not. (Many of my friends who have followed my adventures for years have heard this before, but there are many new folks out there now whom I’m just dying to bore with the details.) It’s an antibody against what’s called the CD20 antigen, a protein that appears on the cell membrane of all CLL lymphocytes. Now, when you get a flu shot or a tetanus shot, you’re getting a bit of the foreign protein (the antigen) of the tetanus or flu and so your body produces antibodies to the germ, virus or toxin. Then, when your body encounters those things in your blood stream, the antibodies glom onto it and allow your white cells to destroy it. So that’s what Rituxan (and Avastin, too) do and why they work so well. The Rituxan antibodies coat the leukemic cells (but not the bacteria fighting neutrophils) and then my immune system destroys them. Cool!
A couple of problems present themselves, however. First, most normal lymphocytes have some, but not as much, of the CD20 antigen, too, and they may get taken down with the CLL cells. And secondly, the other drugs that are given with the Rituxan, the Fludara and Cytoxan… well, they work well, but they damage my immune system, the same immune system that’s supposed to be taking out the CLL cells after the Rituxan coats them.
Most chemotherapy works by attacking rapidly dividing cells, on the theory that cancerous cells are dividing more rapidly than normal cells. Cytoxan is a great example of that; it’s the old fashioned “bombs away” drug that clear cuts through the body, slashing and burning all rapidly dividing cells. But it also gets rapidly dividing cells in the stomach, mouth, intestines, etc. And it kills off lots of the cells from the immune system which are also trying to multiply rapidly. And Fludara is just about as bad. It’s derived from a chemical that was found in the bloodstream of the “bubble boy” who had a complete immune deficiency. He had this chemical which was destroying his white cells, and hence his immune system. They’ve synthesized it and now it’s used to kill off abnormal white cells, but it, too, takes out many of the good guys.
But by balancing the amounts of the Cytoxan, Fludara and Rituxan, they’ve found that they work very, very well together, better even than they work individually, and don’t completely destroy the patient’s immune system. But, my immune system will be compromised for many months, or even years, after we complete my therapy.
[END OF TECHNICAL STUFF]
I am very happy with our experiences at MDA. They have a very competent and extremely knowledgeable staff. Before each infusion they showed me the drug they were giving, told me the dosage and compared the name on the IV bag with my armband. And they’re quick! Since they use so much less in terms of fluids during the infusions, the infusions go by much faster. Our last day there the drugs only took 90 minutes to flow in. Not even enough time to read much of the material we’d brought with us. We brought a lot, because in the past we’d spend hours and hours getting the drugs. Didn’t need it! And because we’d been getting up (and by “we” I mean “Kathy”) at 5:30 AM (I’d make it out of bed about thirty to forty minutes later) because I had 7:15 appointments to get blood drawn, we slept through most of the procedures anyway.
Plus, the staff at MDA is finely tuned to their patient’s needs. While I was getting my infusions and couldn’t get out, staff members came around taking orders for meals, at no additional cost. And another person, likely a volunteer, came around offering hats to us and the other “soon to be bald” patients; knit caps, baseball caps and more. Another volunteer walked in one day and just asked if there was anything she could do for us. Like many of the volunteers, she had a personal connection, her husband having been treated there as well. She brought us something to drink as we hadn’t had much yet that morning.
It’s not a perfect place, but it’s good. I think they could do a better job of coordinating blood draws to minimize the number of needle sticks folks get (I got five one morning alone) and their staff varies a little in competence and diligence, as it will anywhere. One morning, when I was getting my Rituxan, my blood pressure and other “vital signs” weren’t checked for three hours, when I know they were supposed to be checked every fifteen minutes for the first couple of hours. But I was feeling okay and didn’t raise the issue with the nurse. I suppose I should have.
But we’re finished with MDA for a while. If all goes as expected we’ll get at least the next two courses of chemotherapy here in Denton, following instructions provided by Dr. Keating and his crew. I’m due back in Houston no later than May, however, for a follow-up visit and another bone marrow biopsy.
This has gotten longer that I had intended, and I haven’t gotten around the Kauai story yet. Next time…I promise. And some more feedback about this stuff too, okay?
I’m feeling much better and my appetite has returned. Our friends Bonnie and Quinn brought me some hot wings, so my post-chemo need for spicy foods has been assuaged for now. And it was a great day on Thursday with temperatures in the low 70s so I was able to sit out on the patio and enjoy the sun. Except for my wife warning me not to get too much sun. You see, I’m photosensitive while undergoing chemo and can burn more easily. Not only that, but I’m more prone to get skin cancer because I have leukemia. Kathy watches out for these things when I don’t. All in all, I’m doing very well and hope to get out of the house in the next couple of days.
That’ll do it for now. Thanks for all your messages and feedback.
Dave
dreck@prodigy.net
Chapter 1, Verse 4
February 20, 2008
Houston…we have a (minor) problem
Well, you know, the problem with chemotherapy is that it whacks your immune system and so you have to be real careful to avoid crowds and sick people. And, you know, the problem with chemotherapy is that it’s given in hospitals and clinics. And that’s where crowds OF sick people tend to congregate. Heck of a deal.
When I’m doing this stuff, Kathy always runs interference for me, handling the money, opening the doors (so I don’t touch doorknobs), steering me away from any coughing she hears, giving me the hand sanitizer before I eat and stuff like that. But we still have to sit in waiting rooms. M. D. Anderson is a very popular place, but for that perverse reason just about all the folks that are there are sick, many of them desperately so. The halls and elevators are crowded with people huddled under blankets, wearing masks, wearing knit hats over their chemically balded heads, and with tubes emerging from under their sleeves or over their collars. It makes you sad to see so many very, very ill folks. In the best of circumstances, hospitals harbor many of the worst bacteria around. Having lots of sick folks there mean that lots of bad bugs congregate in hospitals. You don’t want to be in a hospital any longer than you absolutely have to be.
So my last day of this round’s chemotherapy, on Valentine’s Day, went well, but because I was not unexpectedly feeling tired, we spent an extra night in Houston (without a massage!). But by the time we got home Kathy was sick. Nothing too serious, mind you, but she had a scratchy throat, runny nose, a little cough developing, and the usual signs of a cold coming on. She was becoming the person she tries to keep me away from.
So she bought lots of the alcohol hand stuff, got some masks, made me start using a different phone from the one she used, and even tried to move into the guest bedroom. But I wouldn’t let her. She wears masks whenever she’s preparing food, wipes down the TV remote before she hands it to me and is even spraying the tub down with Lysol after she gets out! She won’t get close to me. Man… tough love!
Meanwhile, the drugs really hit me. This weekend I was pretty much down for the count. I had the “fuzzies” bad and couldn’t read the paper. I spent most of my time horizontal, either in bed or on the couch. I expected that, but what I didn’t expect was splitting headaches. I hadn’t experienced them before, but I had been getting them each day since the Rituxan infusion last Monday, and they were getting worse each day. I went through a lot of Fioricet and Imitrex (drugs for migraine headaches) but was able to get only temporary relief. I finally broke the headaches with a combination of four drugs that I’m not going to spell out for fear that someone else might take it as “doctor-recommended.”
A few other things happened too. I’ve been slightly hoarse since about day two of the infusions, but that tends to happen after the steroids and all the fluids I get. But it just hasn’t disappeared yet. Maybe a touch of Kathy’s cold? And whereas I generally gained about 12-15 pounds with each infusion in the past (between all the steroids and fluids), and even needed special jeans for my “fat” days, this time I’ve lost about six pounds, at least partially because the miserable headaches put a damper on my appetite for several days. But I can stand to lose a few pounds.
Folks often ask about the side effects when I’m undergoing the infusions. Let me mention a couple more, one of which I don’t have. First, I’m not losing my hair this time. I may lose some with time, but the last time I did the FCR regimen in 2002 (without the Avastin) my hair thinned a bit but I didn’t go bald.
And the Zofran, the miracle drug I told you about that is so great for nausea that I was able to eat my Ruggle’s burger and follow it with crème brulee…well, it does indeed work great. It quiets the gastrointestinal system so very effectively that nausea is eliminated. But it works so well that, uh, elimination is eliminated too. Food doesn’t come up, but it doesn’t make progress toward the, the…nether aperture either. I guess when my pregnant patients, to whom I gave Zofran, complained of constipation, I blamed it on the pregnancy and Denver’s dry climate, which were certainly factors in the problem. But I’m guessing that the Zofran didn’t help at all. It’s not a problem that commonly affects guys, seemingly being more of an issue for with the gentler sex. Seems many women get it when they travel…don’t know why, but they do. Anyway, it’s not a problem I’m generally familiar with, but one that I resorted to a little milk of magnesia to take care of after I started to get pretty uncomfortable. Good old MOM.
For all my whining, though, the side effects of my chemotherapy cycles have been far less than those folks getting drugs for breast cancer, most lymphomas, and many gastrointestinal cancers. Those folks can be just deathly ill with nausea and vomiting, weakness, mouth ulcers, diarrhea, extremely depressed immune systems and white blood cell counts and so much more. I have much to be thankful for.
I went in to our local clinic on Monday to get my first post-infusion complete blood count (CBC). I was blown away to hear that my white count, which had been about 88,000 before we started, was down to 3,100! My gosh, after only one of the six planned infusions we have destroyed 97% of the white cells that had been flowing in my veins. And what is more amazing, really, is that of the 3,100 white cells left, most of them were bacteria fighters, the neutrophils. In other words, the chemotherapy had effectively targeted the bad guys but spared most of the good guys. That’s because of the Rituxan.
[WARNING: TECHNICAL STUFF FOLLOWS] Rituxan is one of a whole new category of drugs. It’s not even chemotherapy, in some ways, because it’s an antibody; a murine (or mouse) antibody, believe it or not. (Many of my friends who have followed my adventures for years have heard this before, but there are many new folks out there now whom I’m just dying to bore with the details.) It’s an antibody against what’s called the CD20 antigen, a protein that appears on the cell membrane of all CLL lymphocytes. Now, when you get a flu shot or a tetanus shot, you’re getting a bit of the foreign protein (the antigen) of the tetanus or flu and so your body produces antibodies to the germ, virus or toxin. Then, when your body encounters those things in your blood stream, the antibodies glom onto it and allow your white cells to destroy it. So that’s what Rituxan (and Avastin, too) do and why they work so well. The Rituxan antibodies coat the leukemic cells (but not the bacteria fighting neutrophils) and then my immune system destroys them. Cool!
A couple of problems present themselves, however. First, most normal lymphocytes have some, but not as much, of the CD20 antigen, too, and they may get taken down with the CLL cells. And secondly, the other drugs that are given with the Rituxan, the Fludara and Cytoxan… well, they work well, but they damage my immune system, the same immune system that’s supposed to be taking out the CLL cells after the Rituxan coats them.
Most chemotherapy works by attacking rapidly dividing cells, on the theory that cancerous cells are dividing more rapidly than normal cells. Cytoxan is a great example of that; it’s the old fashioned “bombs away” drug that clear cuts through the body, slashing and burning all rapidly dividing cells. But it also gets rapidly dividing cells in the stomach, mouth, intestines, etc. And it kills off lots of the cells from the immune system which are also trying to multiply rapidly. And Fludara is just about as bad. It’s derived from a chemical that was found in the bloodstream of the “bubble boy” who had a complete immune deficiency. He had this chemical which was destroying his white cells, and hence his immune system. They’ve synthesized it and now it’s used to kill off abnormal white cells, but it, too, takes out many of the good guys.
But by balancing the amounts of the Cytoxan, Fludara and Rituxan, they’ve found that they work very, very well together, better even than they work individually, and don’t completely destroy the patient’s immune system. But, my immune system will be compromised for many months, or even years, after we complete my therapy.
[END OF TECHNICAL STUFF]
I am very happy with our experiences at MDA. They have a very competent and extremely knowledgeable staff. Before each infusion they showed me the drug they were giving, told me the dosage and compared the name on the IV bag with my armband. And they’re quick! Since they use so much less in terms of fluids during the infusions, the infusions go by much faster. Our last day there the drugs only took 90 minutes to flow in. Not even enough time to read much of the material we’d brought with us. We brought a lot, because in the past we’d spend hours and hours getting the drugs. Didn’t need it! And because we’d been getting up (and by “we” I mean “Kathy”) at 5:30 AM (I’d make it out of bed about thirty to forty minutes later) because I had 7:15 appointments to get blood drawn, we slept through most of the procedures anyway.
Plus, the staff at MDA is finely tuned to their patient’s needs. While I was getting my infusions and couldn’t get out, staff members came around taking orders for meals, at no additional cost. And another person, likely a volunteer, came around offering hats to us and the other “soon to be bald” patients; knit caps, baseball caps and more. Another volunteer walked in one day and just asked if there was anything she could do for us. Like many of the volunteers, she had a personal connection, her husband having been treated there as well. She brought us something to drink as we hadn’t had much yet that morning.
It’s not a perfect place, but it’s good. I think they could do a better job of coordinating blood draws to minimize the number of needle sticks folks get (I got five one morning alone) and their staff varies a little in competence and diligence, as it will anywhere. One morning, when I was getting my Rituxan, my blood pressure and other “vital signs” weren’t checked for three hours, when I know they were supposed to be checked every fifteen minutes for the first couple of hours. But I was feeling okay and didn’t raise the issue with the nurse. I suppose I should have.
But we’re finished with MDA for a while. If all goes as expected we’ll get at least the next two courses of chemotherapy here in Denton, following instructions provided by Dr. Keating and his crew. I’m due back in Houston no later than May, however, for a follow-up visit and another bone marrow biopsy.
This has gotten longer that I had intended, and I haven’t gotten around the Kauai story yet. Next time…I promise. And some more feedback about this stuff too, okay?
I’m feeling much better and my appetite has returned. Our friends Bonnie and Quinn brought me some hot wings, so my post-chemo need for spicy foods has been assuaged for now. And it was a great day on Thursday with temperatures in the low 70s so I was able to sit out on the patio and enjoy the sun. Except for my wife warning me not to get too much sun. You see, I’m photosensitive while undergoing chemo and can burn more easily. Not only that, but I’m more prone to get skin cancer because I have leukemia. Kathy watches out for these things when I don’t. All in all, I’m doing very well and hope to get out of the house in the next couple of days.
That’ll do it for now. Thanks for all your messages and feedback.
Dave
dreck@prodigy.net
Saturday, February 16, 2008
Lucky Number Seven
Dave’s Great Adventure, Book 3
Chapter 1, Verse 3
February 16, 2008
Lucky Number Seven
You know, I didn’t really plan on being an experimental model, a “lab rat” if you will, as I was explaining to Martin recently. Martin is a friend from the Leukemia and Lymphoma Society (LLS). He’s a marathoner and also trains others to run marathons to raise money for the LLS. I’m his gynecologist.
It appears that I'm to be a guinea pig for new treatments for chronic lymphocytic leukemia. I'm not sure how I got this role, but it has come to me. I suppose someone has to be among the first to try new things or there wouldn’t be any progress in anything, would there? When I first became ill back in early 2002, there was no agreed upon “best” treatment for CLL nor any general agreement even on if or when to start treatments, since survival wasn’t generally extended even with many of the available treatments. As most of you know, my dad died after having this disease for about five years.
But I was “lucky” enough to get sick at the right time. I got sick while living in Colorado, in late February 2002 and met my oncologist, a great guy named Brian Koester, a month later. He had just read an article about some new treatments which had been tried down in Texas at a place called M. D. Anderson, and they were reporting fantastic results. The lead investigator for these studies was a doctor named Michael Keating. The experimental trials had been performed on, I think about 130 people down in Houston, and the results looked so promising that Brian said we ought to try them on me too. The new combination of drugs used Fludara (fludarabine) and Cytoxan (cyclophosphamide), which had been around for many years, with a new and unapproved (at least for its use in leukemia) drug called Rituxan (rituximab). Rituxan had been approved only for use in patients with lymphomas. This combination of drugs has come to be known as FCR.
So, Brian photocopied off the regimen that Dr. Keating and his crew had brewed up and he gave the orders to his nurses. And for the first time in Brian’s experience and for probably the first time in Denver, the FCR treatments were used. On me. And the results were just great. Within four months I was in complete remission. I was ecstatic at that, but the joy was relatively short lived, as we found the disease was slowly returning about a year later. We probably didn’t use the regimen long enough, as it turned out.
So Brian sent me to a colleague named Jeff Matous, down the street, who is a “transplanter.” We decided that while the disease was at a relatively low level we’d try to collect some of my own stem cells to use in the future when I had otherwise run out of chemotherapy options and might need a stem cell transplant. Jeff used a much higher dose of Rituxan, given several times over a couple of weeks, combined with a very large dose of the Cytoxan, to “clean out” my bone marrow before we collected a bunch of my own stem cells. One day during the process, which took us a few weeks, I asked Jeff if things were going as expected. He said, “I don’t know…I’ve never done this before.” But it did go well, and I now have seven million of my own stem cells in a freezer in Denver, awaiting the day that I might need them (the use of one’s own stem cells is a bit controversial, and in fact does not generally work as well as using a donor stem cell transplant, but it’s an option that I can consider, and is a topic for another day).
Now, six years after Brian tried Dr. Keating’s regimen and four years after Jeff tried his new combination of drugs on me, I find myself at M. D. Anderson Medical Center, the very place at which the FCR combination was perfected, and being cared for by the doc who led the group who designed it! Talk about being in the right place at the right time. Now it’s time to try something new again, and Dr. Keating is the one trying the new stuff.
I’ve told you about the new stuff, the Avastin (bevacizumab—“beh-vah-SIZZ-oo-mab”) and all of its possible side effects. I’ve even been a bit uneasy about trying it because of all I’ve read about the “severe and sometimes fatal” complications. I was talking about this with Martin, whose dad had pancreatic cancer and was treated at M. D. Anderson with Avastin. His dad developed appendicitis after his Avastin therapy and died shortly thereafter. But pancreatic cancer is an extremely aggressive tumor and survival is generally measured in a few months even in the best cases. It appears that Avastin is reasonably well tolerated by otherwise healthy folks, and it’s hoped that its addition to the FCR regimen will keep me going for a few more years. This combination has been tried on six other folks recently and so far, in the short term, they’re doing well. I’m number seven.
This is extremely expensive therapy. To me, it’s outrageously and embarrassingly expensive. The Rituxan (rituximab) alone costs several thousand dollars a dose (you might want to buy some stock in its maker, Genentech). The single four day course of therapy I’m getting, including everything, will cost in the range of $80,000 to $120,000, according to my nurses, though I haven’t seen any bills yet. And (this is an important “and”) that’s before the cost of the Avastin is added in. Right now, since this is an investigational study, the drug company is paying for the drug, which costs about $30,000 PER DOSE! (That’s another reason to invest in Genentech!) By the time I hopefully complete the six months of the study protocol it will have cost way over half a million dollars. I just find that to be incredible. Now, I’m not paying that out of MY pocket, but someone is, and in my case, it’s all of you! Between my military retirement benefits and Medicare (which I suddenly found I was going to be included in, starting in March) the taxpayers of America will be picking up my bill. Think about that on April 15th when you file your income tax return. Your tax dollars hard at work! And thank you very much.
But it seems to be working well. Before we started the therapy, Dr. Keating said, to his team, with his New Zealand accented English, “Okay, let’s get him into remission and then we’ll work on the cure!” And off we went, to the infusion room. Before I started the first day’s infusion, my white cell count was about 88,000 (remember that a normal count is somewhere between 3,000 and 10,000). Monday, on the first day of therapy, I got only the Rituxan. The infusion went well, and by the next morning, my white count was only 34,000! So the second day I received the Fludara and Cytoxan infusions and the next morning the count was 17,000.
Well, on day three I was going to receive the Avastin. It was given along with more Fludara and Cytoxan. They hung the IV bag with the Avastin in it and ran it into my vein. I felt…nothing. It could have been a placebo for all I could tell.
I was feeling a little spacey, but not sick, after the drugs so Kathy and I went out for lunch. We found a little place not too far from M. D. Anderson called Ruggles, sort of an upscale burger and sandwich shop and we each had a burger that was way too big, but tasted great. We can recommend Ruggles. I’ve never yet gotten nauseated from the infusions of the drugs I’ve had, probably because of the wonderful anti-nausea drugs that are routinely given in recent years. In Denver I was given Anzemet and “tested” it frequently. Long time readers will remember my frequent stops at Mexican food places on the way home from my infusions. At M. D. Anderson I was given Zofran, a drug I often prescribed to my pregnant patients who had intractable nausea and vomiting with their pregnancies. Both drugs work extremely well.
So, thanks at least in part to the Zofran, I was able to enjoy my burger, and Kathy surprised me with a crème brulee for dessert. When was the last time you got crème brulee at a burger place?
The next day was the last day of my infusions for this cycle. It was also February 14th. Kathy had a Valentine for me. I didn’t have one for her. Now guys, you know it’s never going to be a good day when your wife remembers a birthday, anniversary or Valentine’s Day, and you don’t; am I wrong? I felt bad about it, but Kathy was very understanding, given the circumstances. We HAVE had other things on our minds, recently (though she was still able to plan ahead and my male brain couldn’t!).
We went in for my pre-infusion labs and found that my white count was now down to 10,000. Amazing, isn’t it? We had the infusions over about 90 minutes and were done for the day. I was feeling crappy though, a feeling that had been slowly building over the four days. And the headache that started on day one, after the Rituxan really had never gone away. But these feelings are caused by the destruction of millions of white cells, and each one is pouring out its contents into my bloodstream, just as they do when they’re trying to fight off the flu or something, and that’s exactly how I felt. We went back to the motel and I slept for most of the afternoon. That night I was still achy and couldn’t sleep well, but I know it’s because things are going as they should. End of Round One.
We heard from lots of friends and family recently after I resurrected my “adventure” series. Our long time friend, Kathy, out in Hotlanta (or is it Drylanta now?) opined that even though I didn’t have the restrictions placed on me that I had in the past, maybe it would be safer to go ahead and follow the old guidelines. She said, “Although they said no restrictions, think I would go back to what I did before. NO fruits, (lots of) water, etc. Okay, maybe some SEX.” Hey, Kathy has her priorities right!
And we got a very nice message from our former neighbor, Tom, in Colorado. Tom and his wife were just fantastic folks to live next to. When I was doing my chemotherapy infusions, he’d come over and mow my lawn and take care of things for me. One time, during a round of therapy, I started feeling reasonably well, so I went in to our clinic to see a few patients. I was embarrassed when I came home to find out that Tom’s wife, April, was mowing my lawn while I was out gallivanting around!
I heard, too, from a good friend, Shara, also in Colorado. Shara was a patient of mine for many years, and famously (or notoriously) said at one point, “We need to find some time to get together outside the clinic so I can talk to you with my clothes on.”
Bonnie wrote to say that it was a good thing that things had changed in the last six or so years, and that I was getting less in the way of drugs than before. Bonnie is quite a gal. She’s a neighbor and friend, but she’s also an artist, sculptor and a writer. And, in “retirement” she has become a professional photographer. She’s also the only person I know of who has read through my whole story, from start to finish, other than my long- time friends and such relatives who have been subjected to it, piecemeal, since the beginning of this “adventure.” Bonnie said, “Like a great book, I couldn’t put it down!” Bonnie says I should write a book. No, actually Bonnie INSISTS I write a book. But, that sounds like a lot of work!
Our dear friends Lou and Joan, up in Golden, Colorado, are also staying in touch. We got daily e-cards from them during our time in Houston. That’s just so much like them. When I was out of work for about seven months back in 2002, getting and recovering from my first rounds of chemotherapy, they sent a card in the mail, every single day for the whole seven months! Get well cards, friendship cards, funny cards, etc. Really, really nice folks.
One last thing before I close this “verse.” While we were in Houston we stayed at a very nice Holiday Inn Express near the hospital, a very well-kept and modern facility. There was, in our room, a brochure. It advertised “Emergency Massage.” Yeah, “emergency massage.” “Call Veronica at 713-591-xxxx for your stress management.” You can get Therapeutic Massage in 30 minute blocks, a dollar a minute; “A magnificent blend of soothing bodywork techniques specific for your needs to help increase circulation, promote relaxation and improve sleep patterns.” Now, guys…what kind of "bodywork" techniques “specific for your needs” best increases your circulation, promotes relaxation and puts you immediately to sleep? Yeah, I thought so. (This all reminds me about what happened when we were in El Paso for our son’s wedding and I was having horrible neck and back pain. We saw that a massage therapist was on-call and so I went for a massage in the motel! If you care to, you can read all about in the entry from September 1, 2004. It had my daughter and my female friends and patients rolling with laughter.)
Enough for now. Next time I’ll tell you how we came to be in Kauai recently and how I became Martin’s gynecologist. There is actually a long and convoluted story tied into my disease that accounts for both. And I'll tell you about my blankie, too.
Dave
dreck@prodigy.net
Chapter 1, Verse 3
February 16, 2008
Lucky Number Seven
You know, I didn’t really plan on being an experimental model, a “lab rat” if you will, as I was explaining to Martin recently. Martin is a friend from the Leukemia and Lymphoma Society (LLS). He’s a marathoner and also trains others to run marathons to raise money for the LLS. I’m his gynecologist.
It appears that I'm to be a guinea pig for new treatments for chronic lymphocytic leukemia. I'm not sure how I got this role, but it has come to me. I suppose someone has to be among the first to try new things or there wouldn’t be any progress in anything, would there? When I first became ill back in early 2002, there was no agreed upon “best” treatment for CLL nor any general agreement even on if or when to start treatments, since survival wasn’t generally extended even with many of the available treatments. As most of you know, my dad died after having this disease for about five years.
But I was “lucky” enough to get sick at the right time. I got sick while living in Colorado, in late February 2002 and met my oncologist, a great guy named Brian Koester, a month later. He had just read an article about some new treatments which had been tried down in Texas at a place called M. D. Anderson, and they were reporting fantastic results. The lead investigator for these studies was a doctor named Michael Keating. The experimental trials had been performed on, I think about 130 people down in Houston, and the results looked so promising that Brian said we ought to try them on me too. The new combination of drugs used Fludara (fludarabine) and Cytoxan (cyclophosphamide), which had been around for many years, with a new and unapproved (at least for its use in leukemia) drug called Rituxan (rituximab). Rituxan had been approved only for use in patients with lymphomas. This combination of drugs has come to be known as FCR.
So, Brian photocopied off the regimen that Dr. Keating and his crew had brewed up and he gave the orders to his nurses. And for the first time in Brian’s experience and for probably the first time in Denver, the FCR treatments were used. On me. And the results were just great. Within four months I was in complete remission. I was ecstatic at that, but the joy was relatively short lived, as we found the disease was slowly returning about a year later. We probably didn’t use the regimen long enough, as it turned out.
So Brian sent me to a colleague named Jeff Matous, down the street, who is a “transplanter.” We decided that while the disease was at a relatively low level we’d try to collect some of my own stem cells to use in the future when I had otherwise run out of chemotherapy options and might need a stem cell transplant. Jeff used a much higher dose of Rituxan, given several times over a couple of weeks, combined with a very large dose of the Cytoxan, to “clean out” my bone marrow before we collected a bunch of my own stem cells. One day during the process, which took us a few weeks, I asked Jeff if things were going as expected. He said, “I don’t know…I’ve never done this before.” But it did go well, and I now have seven million of my own stem cells in a freezer in Denver, awaiting the day that I might need them (the use of one’s own stem cells is a bit controversial, and in fact does not generally work as well as using a donor stem cell transplant, but it’s an option that I can consider, and is a topic for another day).
Now, six years after Brian tried Dr. Keating’s regimen and four years after Jeff tried his new combination of drugs on me, I find myself at M. D. Anderson Medical Center, the very place at which the FCR combination was perfected, and being cared for by the doc who led the group who designed it! Talk about being in the right place at the right time. Now it’s time to try something new again, and Dr. Keating is the one trying the new stuff.
I’ve told you about the new stuff, the Avastin (bevacizumab—“beh-vah-SIZZ-oo-mab”) and all of its possible side effects. I’ve even been a bit uneasy about trying it because of all I’ve read about the “severe and sometimes fatal” complications. I was talking about this with Martin, whose dad had pancreatic cancer and was treated at M. D. Anderson with Avastin. His dad developed appendicitis after his Avastin therapy and died shortly thereafter. But pancreatic cancer is an extremely aggressive tumor and survival is generally measured in a few months even in the best cases. It appears that Avastin is reasonably well tolerated by otherwise healthy folks, and it’s hoped that its addition to the FCR regimen will keep me going for a few more years. This combination has been tried on six other folks recently and so far, in the short term, they’re doing well. I’m number seven.
This is extremely expensive therapy. To me, it’s outrageously and embarrassingly expensive. The Rituxan (rituximab) alone costs several thousand dollars a dose (you might want to buy some stock in its maker, Genentech). The single four day course of therapy I’m getting, including everything, will cost in the range of $80,000 to $120,000, according to my nurses, though I haven’t seen any bills yet. And (this is an important “and”) that’s before the cost of the Avastin is added in. Right now, since this is an investigational study, the drug company is paying for the drug, which costs about $30,000 PER DOSE! (That’s another reason to invest in Genentech!) By the time I hopefully complete the six months of the study protocol it will have cost way over half a million dollars. I just find that to be incredible. Now, I’m not paying that out of MY pocket, but someone is, and in my case, it’s all of you! Between my military retirement benefits and Medicare (which I suddenly found I was going to be included in, starting in March) the taxpayers of America will be picking up my bill. Think about that on April 15th when you file your income tax return. Your tax dollars hard at work! And thank you very much.
But it seems to be working well. Before we started the therapy, Dr. Keating said, to his team, with his New Zealand accented English, “Okay, let’s get him into remission and then we’ll work on the cure!” And off we went, to the infusion room. Before I started the first day’s infusion, my white cell count was about 88,000 (remember that a normal count is somewhere between 3,000 and 10,000). Monday, on the first day of therapy, I got only the Rituxan. The infusion went well, and by the next morning, my white count was only 34,000! So the second day I received the Fludara and Cytoxan infusions and the next morning the count was 17,000.
Well, on day three I was going to receive the Avastin. It was given along with more Fludara and Cytoxan. They hung the IV bag with the Avastin in it and ran it into my vein. I felt…nothing. It could have been a placebo for all I could tell.
I was feeling a little spacey, but not sick, after the drugs so Kathy and I went out for lunch. We found a little place not too far from M. D. Anderson called Ruggles, sort of an upscale burger and sandwich shop and we each had a burger that was way too big, but tasted great. We can recommend Ruggles. I’ve never yet gotten nauseated from the infusions of the drugs I’ve had, probably because of the wonderful anti-nausea drugs that are routinely given in recent years. In Denver I was given Anzemet and “tested” it frequently. Long time readers will remember my frequent stops at Mexican food places on the way home from my infusions. At M. D. Anderson I was given Zofran, a drug I often prescribed to my pregnant patients who had intractable nausea and vomiting with their pregnancies. Both drugs work extremely well.
So, thanks at least in part to the Zofran, I was able to enjoy my burger, and Kathy surprised me with a crème brulee for dessert. When was the last time you got crème brulee at a burger place?
The next day was the last day of my infusions for this cycle. It was also February 14th. Kathy had a Valentine for me. I didn’t have one for her. Now guys, you know it’s never going to be a good day when your wife remembers a birthday, anniversary or Valentine’s Day, and you don’t; am I wrong? I felt bad about it, but Kathy was very understanding, given the circumstances. We HAVE had other things on our minds, recently (though she was still able to plan ahead and my male brain couldn’t!).
We went in for my pre-infusion labs and found that my white count was now down to 10,000. Amazing, isn’t it? We had the infusions over about 90 minutes and were done for the day. I was feeling crappy though, a feeling that had been slowly building over the four days. And the headache that started on day one, after the Rituxan really had never gone away. But these feelings are caused by the destruction of millions of white cells, and each one is pouring out its contents into my bloodstream, just as they do when they’re trying to fight off the flu or something, and that’s exactly how I felt. We went back to the motel and I slept for most of the afternoon. That night I was still achy and couldn’t sleep well, but I know it’s because things are going as they should. End of Round One.
We heard from lots of friends and family recently after I resurrected my “adventure” series. Our long time friend, Kathy, out in Hotlanta (or is it Drylanta now?) opined that even though I didn’t have the restrictions placed on me that I had in the past, maybe it would be safer to go ahead and follow the old guidelines. She said, “Although they said no restrictions, think I would go back to what I did before. NO fruits, (lots of) water, etc. Okay, maybe some SEX.” Hey, Kathy has her priorities right!
And we got a very nice message from our former neighbor, Tom, in Colorado. Tom and his wife were just fantastic folks to live next to. When I was doing my chemotherapy infusions, he’d come over and mow my lawn and take care of things for me. One time, during a round of therapy, I started feeling reasonably well, so I went in to our clinic to see a few patients. I was embarrassed when I came home to find out that Tom’s wife, April, was mowing my lawn while I was out gallivanting around!
I heard, too, from a good friend, Shara, also in Colorado. Shara was a patient of mine for many years, and famously (or notoriously) said at one point, “We need to find some time to get together outside the clinic so I can talk to you with my clothes on.”
Bonnie wrote to say that it was a good thing that things had changed in the last six or so years, and that I was getting less in the way of drugs than before. Bonnie is quite a gal. She’s a neighbor and friend, but she’s also an artist, sculptor and a writer. And, in “retirement” she has become a professional photographer. She’s also the only person I know of who has read through my whole story, from start to finish, other than my long- time friends and such relatives who have been subjected to it, piecemeal, since the beginning of this “adventure.” Bonnie said, “Like a great book, I couldn’t put it down!” Bonnie says I should write a book. No, actually Bonnie INSISTS I write a book. But, that sounds like a lot of work!
Our dear friends Lou and Joan, up in Golden, Colorado, are also staying in touch. We got daily e-cards from them during our time in Houston. That’s just so much like them. When I was out of work for about seven months back in 2002, getting and recovering from my first rounds of chemotherapy, they sent a card in the mail, every single day for the whole seven months! Get well cards, friendship cards, funny cards, etc. Really, really nice folks.
One last thing before I close this “verse.” While we were in Houston we stayed at a very nice Holiday Inn Express near the hospital, a very well-kept and modern facility. There was, in our room, a brochure. It advertised “Emergency Massage.” Yeah, “emergency massage.” “Call Veronica at 713-591-xxxx for your stress management.” You can get Therapeutic Massage in 30 minute blocks, a dollar a minute; “A magnificent blend of soothing bodywork techniques specific for your needs to help increase circulation, promote relaxation and improve sleep patterns.” Now, guys…what kind of "bodywork" techniques “specific for your needs” best increases your circulation, promotes relaxation and puts you immediately to sleep? Yeah, I thought so. (This all reminds me about what happened when we were in El Paso for our son’s wedding and I was having horrible neck and back pain. We saw that a massage therapist was on-call and so I went for a massage in the motel! If you care to, you can read all about in the entry from September 1, 2004. It had my daughter and my female friends and patients rolling with laughter.)
Enough for now. Next time I’ll tell you how we came to be in Kauai recently and how I became Martin’s gynecologist. There is actually a long and convoluted story tied into my disease that accounts for both. And I'll tell you about my blankie, too.
Dave
dreck@prodigy.net
Tuesday, February 12, 2008
From Paradise to Poison
[Please look at and, if you care to, bookmark my journal at http://adventureswithleukemia.blogspot.com/ You can also subscribe to the updates with the “Subscribe to: Posts” at the bottom of each page so as to automatically receive any new “adventures” that I add on]
Dave’s Great Adventure, Book Three
Chapter 1, Verse 2
February 12, 2008
From Paradise to Poison
Yeah, Kathy and I went from Paradise to Poison in 2.6 days this week. We spent most of five days in Kauai last week and got home just in time to repack and get back to M. D. Anderson in Houston for the start of my chemotherapy. We were in Kauai because…well, it’s a long story and I’ll have to come back to that later.
Part I: Paradise
We left Denton for Kauai last Monday, with my doctor’s blessing. I told him that we’d cancel our previously made travel plans if he thought we ought to start the chemotherapy right away, but he insisted we go ahead with our plans. He mused that maybe we’d need an assistant to go along with us. Don’t know WHOM he could have had in mind. We had planned the trip to start the day after the Super Bowl, foolishly thinking that the Cowboys would be playing in that game. We didn’t count on the Giants beating the ‘Pokes on the third try (for non-football fans, the Cowboys beat the Giants twice during the regular season, only to have the Giants beat them in the playoffs and go on to the Super Bowl!).
We also planned on using our frequent flyer miles with United Airlines to get a first class upgrade on the very long flight to the island. So we booked with a partner airline, U. S. Airways, only to find that they wouldn’t grant us an upgrade with UA miles. Live and learn. The flight was fairly uneventful except for the takeoff after we changed planes in Phoenix. It was snowing as we were landing there, raining as we took off, and a bit rough once we got into the air. And, as we took off, bouncing around a bit, we saw and felt a sudden “FLASH-THUD.” Nothing too bad, though. Moments later the captain came on the speaker and announced “You probably noticed that we were hit by lightning back there, but everything looks good and all the instruments appear normal.” He further noted that sometimes lightning can cause pinhole burns in the fuselage, but there was no indication that our fuselage had been damaged. I guess this happens more often that we think, and generally causes no problems. The rest of the flight was uneventful and we got to Kauai on time. We gathered our luggage and headed for the rental car area. The chickens were a surprise, though. We heard a rooster crowing as we traversed the short distance to the rental car counter and I wondered why someone would have a farm near the airport.
So we claimed our car and drove the short distance to the Marriott Resort and Beach Club, a very nice place to spend time in Kauai. The resort was right on the beach, on a calm bay with gentle surf and soft sand. It was magnificently and immaculately maintained, with palm trees, multiple koi ponds, tropical flowers and bushes, grass that looked like putting greens, and marble and tile walkways. Just getting into the resort was impressive. You descended a three story escalator which takes you to the courtyard, a large 50 meter square park/garden surrounded with huge Romanesque columns that one might see around an ancient temple. Our room had an ocean view, too. It was a neat place, as well it should be. Did I mention that the place cost pretty near $500 a night?
Now, I’ve paid less than that for a month’s rent or a house payment in years past. But, it was after all, a very nice place on a very expensive island. But wouldn’t you think that for $500 a day there would be a lot included? I would have. But, think again. Want to park your car? $7 a day, unless you let the valet do it for $10 (plus a tip, of course). Want breakfast? About $10 for a continental breakfast, about $20 for a full breakfast. Internet access? A mere $13 a day. There were lots of activities you could take part in as well. Pilates was $5 a day, surfing lessons were $75, scuba lessons were $35, and so on. Bring lots of money!
But it was beautiful there, and we kept hearing those roosters crowing! It was rainy and cool when we arrived, but we wanted to see the island despite the weather. Our first full day we went to Waimea Canyon on the leeward side of Kauai. Now, Kauai has areas which average 440 inches (really!) of rain annually which makes it a wonderful place to grow things. They call their island The Garden Island. “Lush” doesn’t begin to describe the appearance. And it’s the area described in “Puff The Magic Dragon,” the song of decades ago (remember the references to “the land of honah lee” which was “by the sea“). Hanalei is a bay on the northeast part of Kauai. Cool. It has also been the setting for at least parts of several movies and TV shows, like “Jurassic Park,” “Raiders of the Lost Ark” and “Fantasy Island” (“The plane, boss, the plane!”) among many others.
Anyway, we went to Waimea Canyon. The weather was not beautiful, being intermittently rainy and windy and cool, but it was nevertheless, wonderful. The drive was up narrow, twisting roads, surrounded and enclosed by forests or jungle. We got to one of the first overlooks and had a magical moment.
We walked among several chickens (there they were again!) and reached the railing, looking at the vista before us. The wind was rushing by quickly and it was cool but not really cold. Waimea Canyon is a beautiful, smaller, red/brown /green version of the Grand Canyon and is about ten miles long. The wind was blowing bands of rain and mist through the area with the sun breaking through intermittently. We were standing in the misting rain and below us, below us (!), was a rainbow. I don’t believe I’ve ever looked down on a rainbow in all of my sixty-one years. It was a complete 180 degree rainbow, beautiful to behold. I got out my camera. The batteries were dead.
Across the canyon was a waterfall, actually a two part waterfall. A large stream emerged from the forest atop the canyon walls and began its journey to the bottom to join its friends which were flowing from other areas of the canyon walls. It fell about fifty feet or so, but was stopped by an unseen pool, a water hideaway behind the green growth along an invisible ledge. But it escaped the pool and tried again to flow to the canyon bottom. But it couldn’t. The stream dropped another fifty feet or so down the side of the reddish slopes, but then was foiled again and again in its attempt to reach its goal. The wind repeatedly whipped the white stream of water to the right, dissolving it into a faint mist. The stream couldn’t achieve its goal because of forces beyond its control, though it tried and tried. Sometimes, despite our best intentions and attempts, we can’t make things work out the way we think they should. Life’s little lessons from nature.
One more thing before I stop this too-long travelogue; we took a helicopter ride, like so many tourists. Our copter flew around the island but at one point flew, our pilot said, “into the volcano.” To us it looked like a large, deep valley. But what was wonderful about the place was that there was an incredible, uncountable number of waterfalls, in all directions. I’ve never seen so many falls in one place at the same time. It was fantastic, beautiful and stunning.
The next day we left Kauai at 11:30 PM for a long, miserable overnight flight back to Texas (which is why I wanted to be in first class seats) and got back only to have to get ready to leave again. Tired is not the way you want to start out a trip for chemotherapy.
Oh yeah, about the chickens. Just like Colorado is overrun with rabbits, and Texas is overrun with coyotes and armadillos, Kauai is overrun with chickens. The unsubstantiated rumor is that they got loose from a chicken farm during a hurricane, and now are free-range and live all over the place. They are beautiful, for chickens, with the roosters having golden mantles over brown bodies with black/green iridescent tails, and the hens are various spotted shades of brown and reddish brown. And they are just about everywhere you go on the island. Kinda like island mascots.
Part II: The Poison
My, my, my, how things have changed. Long -time readers of my journal with its descriptions of my treatments (and so many other related or completely unrelated topics) may remember some of the many restrictions and warnings that I have been given before my chemotherapy infusions in the past. (For the full stories look at the entries for July 2002). A few of them are:
--We can’t give the Rituxan until your white count is below 50,000.
--You have to avoid fresh fruits and vegetables while your white count is depressed by the chemotherapy.
--You have to drink liters of fluids and we have to infuse at least two liters of fluids after each chemotherapy infusion to flush the drugs out of you system.
--You have to take allopurinol for the duration of your chemotherapy.
--You should avoid sexual contact while your white count is low.
--Increase your intake of rich foods in order to maintain your weight.
--No dental work will be allowed during your chemotherapy.
--Et cetera.
Before we began “our” first round of chemotherapy in 2002, we certainly felt like it was a REALLY BIG DEAL. I mean, they’re putting very toxic substances into your veins which have any number of dangerous side effects. This was reinforced by our pre-chemo briefing. Kathy and I watched a thirty minute film on chemotherapy and its possible side effects and were given a bunch of pamphlets to read to make sure we knew what to look out for in terms of problems and complications, which included all the above and much more.
So, this time we met with Dr. Keating before we started our treatments here in Houston and his briefing was exactly this:
“Everything in moderation, no restrictions.” Quote and unquote.
I just couldn’t believe that, having expected another long talk about the do’s and don’ts of chemotherapy. I told him that before my earlier rounds of chemotherapy I’d been warned about eating fresh vegetables and fruits, which might be contaminated with bacteria, and that sexual contact had been proscribed during my times of very low white counts. He smiled a bit and said, “Well, was that because she’s a vegetable…or are you a fruit?” (Insert rim shot here.)
The approach to chemotherapy here is almost casual, I suppose because they do so much of it. And it’s not just in the “everything in moderation” advice. It applies to the drugs they use as well. They use a lot less, overall. You may remember that when I was first scheduled to begin my therapy in July 2002, we couldn’t use the Rituxan at first because my white cell count was 67,000. There was the fear of severe reactions if too many white cells were destroyed at one time, each of them releasing cytokines, lymphokines and histamine releasers, substances that are very useful in fighting infection by causing inflammation, but potentially dangerous if released into the blood stream in large quantities. They can cause severe low blood pressure, difficulty breathing and severe allergic type reactions (called anaphylaxis).
Well, now…. When I got here my white cell count was 88,000 (down a bit from two weeks ago) but despite that elevated count, not only were we going to give the Rituxan in the first cycle, we were going to give it as the first drug and in larger quantities than I’d had several years ago. Nobody had any reservations about it at all. And you know what? These guys in general, and Dr. Keating in particular, invented this regimen and they probably know best what works and what is safe.
And they use far lower doses of less powerful steroids in conjunction with the drugs. The steroids were the drugs I took several years ago which caused me to gain fifteen pounds or so with each infusion, and grow my little “man boobs.” This time, rather than taking the powerful steroid Decadron everyday I was getting the infusions of the various drugs, I’m taking the much less potent steroid hydrocortisone, and I’m only taking it on the days I get the Rituxan, not every day of the chemo infusions. And I’m only going to take the allopurinol for five days total, not for four months. (It’s a drug that prevent all the debris from the millions of white blood cells that are being destroyed from clogging up my kidneys.) They do add one more drug I didn’t have before, an anti-viral drug called Valtrex. This is a drug commonly used for herpes, but has activity against many other viral infections. It’s used to prevent reactivation of any latent viruses that might do me harm while I’m severely immunocompromised or weakened. I will be taking this as long as I’m undergoing the chemotherapy.
And back to the “consume mass quantities” of fluids program that previously had me strolling back and forth to the bathroom during my infusions and for the day following it, since I had been instructed to keep drinking large quantities of water for 24 hours following the completion of the infusions…. Well, whereas in Denver they infused two liter of fluids with the chemo drugs, here they put in about 250cc, about one tenth as much. And I have been given no particular instructions about forcing fluids after the completion, though I am drinking more than I usually do in the evenings.
This has gone on too long, but before I close this “verse” I’d like to tell you how my first two days of the chemotherapy have gone. The first day I had the Rituxan (which I’ll explain later). They go slowly with the infusions because of the possibilities of the reactions I mentioned earlier, so the infusion took about six hours. But the only problem I had was with the Benedryl (diphenhydramine) which I was given as a pre-med to help prevent reactions caused by the rapid dissolution of millions of leukemia cells. It made me loopy for a couple of hours, but once it wore off, I was fine, except for a bad headache. Then today, I got the more toxic drugs, Fludara and Cytoxan. They went in without any problems whatever, but within a few hours of getting “home” to our motel, I was starting to feel weak and fatigued. And that was only after the first doses. We’ll see how I’m doing after I get the next two day’s worth of drugs. Plus, tomorrow I get the Avastin, the drug that has only been used in combination with the FCR drugs in six other people. Wish me luck!
Until the next overly long verse….
Dave
Dave’s Great Adventure, Book Three
Chapter 1, Verse 2
February 12, 2008
From Paradise to Poison
Yeah, Kathy and I went from Paradise to Poison in 2.6 days this week. We spent most of five days in Kauai last week and got home just in time to repack and get back to M. D. Anderson in Houston for the start of my chemotherapy. We were in Kauai because…well, it’s a long story and I’ll have to come back to that later.
Part I: Paradise
We left Denton for Kauai last Monday, with my doctor’s blessing. I told him that we’d cancel our previously made travel plans if he thought we ought to start the chemotherapy right away, but he insisted we go ahead with our plans. He mused that maybe we’d need an assistant to go along with us. Don’t know WHOM he could have had in mind. We had planned the trip to start the day after the Super Bowl, foolishly thinking that the Cowboys would be playing in that game. We didn’t count on the Giants beating the ‘Pokes on the third try (for non-football fans, the Cowboys beat the Giants twice during the regular season, only to have the Giants beat them in the playoffs and go on to the Super Bowl!).
We also planned on using our frequent flyer miles with United Airlines to get a first class upgrade on the very long flight to the island. So we booked with a partner airline, U. S. Airways, only to find that they wouldn’t grant us an upgrade with UA miles. Live and learn. The flight was fairly uneventful except for the takeoff after we changed planes in Phoenix. It was snowing as we were landing there, raining as we took off, and a bit rough once we got into the air. And, as we took off, bouncing around a bit, we saw and felt a sudden “FLASH-THUD.” Nothing too bad, though. Moments later the captain came on the speaker and announced “You probably noticed that we were hit by lightning back there, but everything looks good and all the instruments appear normal.” He further noted that sometimes lightning can cause pinhole burns in the fuselage, but there was no indication that our fuselage had been damaged. I guess this happens more often that we think, and generally causes no problems. The rest of the flight was uneventful and we got to Kauai on time. We gathered our luggage and headed for the rental car area. The chickens were a surprise, though. We heard a rooster crowing as we traversed the short distance to the rental car counter and I wondered why someone would have a farm near the airport.
So we claimed our car and drove the short distance to the Marriott Resort and Beach Club, a very nice place to spend time in Kauai. The resort was right on the beach, on a calm bay with gentle surf and soft sand. It was magnificently and immaculately maintained, with palm trees, multiple koi ponds, tropical flowers and bushes, grass that looked like putting greens, and marble and tile walkways. Just getting into the resort was impressive. You descended a three story escalator which takes you to the courtyard, a large 50 meter square park/garden surrounded with huge Romanesque columns that one might see around an ancient temple. Our room had an ocean view, too. It was a neat place, as well it should be. Did I mention that the place cost pretty near $500 a night?
Now, I’ve paid less than that for a month’s rent or a house payment in years past. But, it was after all, a very nice place on a very expensive island. But wouldn’t you think that for $500 a day there would be a lot included? I would have. But, think again. Want to park your car? $7 a day, unless you let the valet do it for $10 (plus a tip, of course). Want breakfast? About $10 for a continental breakfast, about $20 for a full breakfast. Internet access? A mere $13 a day. There were lots of activities you could take part in as well. Pilates was $5 a day, surfing lessons were $75, scuba lessons were $35, and so on. Bring lots of money!
But it was beautiful there, and we kept hearing those roosters crowing! It was rainy and cool when we arrived, but we wanted to see the island despite the weather. Our first full day we went to Waimea Canyon on the leeward side of Kauai. Now, Kauai has areas which average 440 inches (really!) of rain annually which makes it a wonderful place to grow things. They call their island The Garden Island. “Lush” doesn’t begin to describe the appearance. And it’s the area described in “Puff The Magic Dragon,” the song of decades ago (remember the references to “the land of honah lee” which was “by the sea“). Hanalei is a bay on the northeast part of Kauai. Cool. It has also been the setting for at least parts of several movies and TV shows, like “Jurassic Park,” “Raiders of the Lost Ark” and “Fantasy Island” (“The plane, boss, the plane!”) among many others.
Anyway, we went to Waimea Canyon. The weather was not beautiful, being intermittently rainy and windy and cool, but it was nevertheless, wonderful. The drive was up narrow, twisting roads, surrounded and enclosed by forests or jungle. We got to one of the first overlooks and had a magical moment.
We walked among several chickens (there they were again!) and reached the railing, looking at the vista before us. The wind was rushing by quickly and it was cool but not really cold. Waimea Canyon is a beautiful, smaller, red/brown /green version of the Grand Canyon and is about ten miles long. The wind was blowing bands of rain and mist through the area with the sun breaking through intermittently. We were standing in the misting rain and below us, below us (!), was a rainbow. I don’t believe I’ve ever looked down on a rainbow in all of my sixty-one years. It was a complete 180 degree rainbow, beautiful to behold. I got out my camera. The batteries were dead.
Across the canyon was a waterfall, actually a two part waterfall. A large stream emerged from the forest atop the canyon walls and began its journey to the bottom to join its friends which were flowing from other areas of the canyon walls. It fell about fifty feet or so, but was stopped by an unseen pool, a water hideaway behind the green growth along an invisible ledge. But it escaped the pool and tried again to flow to the canyon bottom. But it couldn’t. The stream dropped another fifty feet or so down the side of the reddish slopes, but then was foiled again and again in its attempt to reach its goal. The wind repeatedly whipped the white stream of water to the right, dissolving it into a faint mist. The stream couldn’t achieve its goal because of forces beyond its control, though it tried and tried. Sometimes, despite our best intentions and attempts, we can’t make things work out the way we think they should. Life’s little lessons from nature.
One more thing before I stop this too-long travelogue; we took a helicopter ride, like so many tourists. Our copter flew around the island but at one point flew, our pilot said, “into the volcano.” To us it looked like a large, deep valley. But what was wonderful about the place was that there was an incredible, uncountable number of waterfalls, in all directions. I’ve never seen so many falls in one place at the same time. It was fantastic, beautiful and stunning.
The next day we left Kauai at 11:30 PM for a long, miserable overnight flight back to Texas (which is why I wanted to be in first class seats) and got back only to have to get ready to leave again. Tired is not the way you want to start out a trip for chemotherapy.
Oh yeah, about the chickens. Just like Colorado is overrun with rabbits, and Texas is overrun with coyotes and armadillos, Kauai is overrun with chickens. The unsubstantiated rumor is that they got loose from a chicken farm during a hurricane, and now are free-range and live all over the place. They are beautiful, for chickens, with the roosters having golden mantles over brown bodies with black/green iridescent tails, and the hens are various spotted shades of brown and reddish brown. And they are just about everywhere you go on the island. Kinda like island mascots.
Part II: The Poison
My, my, my, how things have changed. Long -time readers of my journal with its descriptions of my treatments (and so many other related or completely unrelated topics) may remember some of the many restrictions and warnings that I have been given before my chemotherapy infusions in the past. (For the full stories look at the entries for July 2002). A few of them are:
--We can’t give the Rituxan until your white count is below 50,000.
--You have to avoid fresh fruits and vegetables while your white count is depressed by the chemotherapy.
--You have to drink liters of fluids and we have to infuse at least two liters of fluids after each chemotherapy infusion to flush the drugs out of you system.
--You have to take allopurinol for the duration of your chemotherapy.
--You should avoid sexual contact while your white count is low.
--Increase your intake of rich foods in order to maintain your weight.
--No dental work will be allowed during your chemotherapy.
--Et cetera.
Before we began “our” first round of chemotherapy in 2002, we certainly felt like it was a REALLY BIG DEAL. I mean, they’re putting very toxic substances into your veins which have any number of dangerous side effects. This was reinforced by our pre-chemo briefing. Kathy and I watched a thirty minute film on chemotherapy and its possible side effects and were given a bunch of pamphlets to read to make sure we knew what to look out for in terms of problems and complications, which included all the above and much more.
So, this time we met with Dr. Keating before we started our treatments here in Houston and his briefing was exactly this:
“Everything in moderation, no restrictions.” Quote and unquote.
I just couldn’t believe that, having expected another long talk about the do’s and don’ts of chemotherapy. I told him that before my earlier rounds of chemotherapy I’d been warned about eating fresh vegetables and fruits, which might be contaminated with bacteria, and that sexual contact had been proscribed during my times of very low white counts. He smiled a bit and said, “Well, was that because she’s a vegetable…or are you a fruit?” (Insert rim shot here.)
The approach to chemotherapy here is almost casual, I suppose because they do so much of it. And it’s not just in the “everything in moderation” advice. It applies to the drugs they use as well. They use a lot less, overall. You may remember that when I was first scheduled to begin my therapy in July 2002, we couldn’t use the Rituxan at first because my white cell count was 67,000. There was the fear of severe reactions if too many white cells were destroyed at one time, each of them releasing cytokines, lymphokines and histamine releasers, substances that are very useful in fighting infection by causing inflammation, but potentially dangerous if released into the blood stream in large quantities. They can cause severe low blood pressure, difficulty breathing and severe allergic type reactions (called anaphylaxis).
Well, now…. When I got here my white cell count was 88,000 (down a bit from two weeks ago) but despite that elevated count, not only were we going to give the Rituxan in the first cycle, we were going to give it as the first drug and in larger quantities than I’d had several years ago. Nobody had any reservations about it at all. And you know what? These guys in general, and Dr. Keating in particular, invented this regimen and they probably know best what works and what is safe.
And they use far lower doses of less powerful steroids in conjunction with the drugs. The steroids were the drugs I took several years ago which caused me to gain fifteen pounds or so with each infusion, and grow my little “man boobs.” This time, rather than taking the powerful steroid Decadron everyday I was getting the infusions of the various drugs, I’m taking the much less potent steroid hydrocortisone, and I’m only taking it on the days I get the Rituxan, not every day of the chemo infusions. And I’m only going to take the allopurinol for five days total, not for four months. (It’s a drug that prevent all the debris from the millions of white blood cells that are being destroyed from clogging up my kidneys.) They do add one more drug I didn’t have before, an anti-viral drug called Valtrex. This is a drug commonly used for herpes, but has activity against many other viral infections. It’s used to prevent reactivation of any latent viruses that might do me harm while I’m severely immunocompromised or weakened. I will be taking this as long as I’m undergoing the chemotherapy.
And back to the “consume mass quantities” of fluids program that previously had me strolling back and forth to the bathroom during my infusions and for the day following it, since I had been instructed to keep drinking large quantities of water for 24 hours following the completion of the infusions…. Well, whereas in Denver they infused two liter of fluids with the chemo drugs, here they put in about 250cc, about one tenth as much. And I have been given no particular instructions about forcing fluids after the completion, though I am drinking more than I usually do in the evenings.
This has gone on too long, but before I close this “verse” I’d like to tell you how my first two days of the chemotherapy have gone. The first day I had the Rituxan (which I’ll explain later). They go slowly with the infusions because of the possibilities of the reactions I mentioned earlier, so the infusion took about six hours. But the only problem I had was with the Benedryl (diphenhydramine) which I was given as a pre-med to help prevent reactions caused by the rapid dissolution of millions of leukemia cells. It made me loopy for a couple of hours, but once it wore off, I was fine, except for a bad headache. Then today, I got the more toxic drugs, Fludara and Cytoxan. They went in without any problems whatever, but within a few hours of getting “home” to our motel, I was starting to feel weak and fatigued. And that was only after the first doses. We’ll see how I’m doing after I get the next two day’s worth of drugs. Plus, tomorrow I get the Avastin, the drug that has only been used in combination with the FCR drugs in six other people. Wish me luck!
Until the next overly long verse….
Dave
Sunday, February 3, 2008
Book Three, The Adventure Starts Again
Dave’s Great Adventure, Book Three
Chapter 1, Verse 1
February 3, 2008
We Have A Plan!
Well, I guess we have a plan as to what to do next.
It’s been almost four full years since I had my last chemotherapy, in the Spring of 2004. That’s the time that I lost my hair, pulled the tube out of my chest and had the RSV infection, among many interesting missteps in getting the drugs at that time. Some of you long time “subscribers” to these never-ending messages may remember the trials I went through with that treatment regimen. But it has worked well. I never expected to be able to go so long between rounds of treatment, and am very glad that it has been as long as it has. I guess my “mutant” status can be credited with the slow progress of my leukemia and the length of time I’ve been able to go between infusions of poisons.
It’s been so long that Kathy and I have been able to put this dread disease out of our minds sometimes. We kinda forget about it and think that everything is normal and as it should be, and that we can live our lives like everyone else. But then I get a blood test, as I have had to do every two to three months, which shows my white count getting greater and greater and we’re reminded that everything is decidedly not normal.
My white count at the first of this year was about 17,000 or so, higher than normal (which is about 3,000 to 9,000 or so), but not too bad for a leukemic. And that was almost three years after my last infusions of Rituxan and Cytoxan. As I’ve mentioned to many of you over the last couple of years, we’ve been watching things but not treating anything because my white cell counts have not been worrisomely high, and because there STILL is no agreed upon standard as to what treatments are most appropriate or “best” for a patient with previously treated and relapsing CLL.
We’ve been talking for over a year about trying gene therapy, but I guess that’s not going to be an option. I don’t know details yet, but it looks like the protocol we had planned on trying, to “immunize” me against my own leukemic cells, isn’t panning out. Not sure about that yet, but if I get more details, I’ll pass them on. Anyway, in the last year my white count has gone up to 100,000. That’s much higher than any count I’ve ever had in the past, but still not all THAT high for a leukemic. Some patients walk around with counts of 200,000 to 300,000 or so.
But in addition to the increasing white cell count, I also now have enlarging lymph nodes, mostly under my arms, where I have a couple of one inch (2 ½ cm) nodes. I never had any of those before. But other than that, I still feel relatively normal for me. Just some lingering fatigue to remind me that I’m sick.
But at a count of 100,000 white cells, most folks agree it’s time to begin treatment of some kind. So we went back down to M. D. Anderson, Houston, to see my doc again to see what he’d recommend.
M. D. Anderson’s a great place for a person with leukemia to go, because, whereas most patients with my disease see a doc who specializes in hematology and oncology (blood diseases and all cancers), when I go to MDA, I’m seen in the Leukemia Clinic by a Leukemologist, a specialist who treats nothing but leukemias. The clinic I go to doesn’t deal with breast cancers, bowel cancers, brain tumors or anything else except leukemia. I find that amazing and reassuring. In fact, the folks down there(including my doctor there) developed the Fludara/Cytoxan/Rituxan (FCR) therapy which I originally had back in 2002, when it was hot off the press and my doc in Denver decided to give it a try with me.
Anyway, they have a lab that is open seven days a week so that their patients can get blood drawn on weekends, which is great, because if you don’t get your labs drawn on the weekend before you see your doc, you have to get up early on the day of your appointment to get them drawn. I’m getting too accustomed to sleeping in to want to get up at 6AM to get a needle poked into my arm. So I got my blood drawn on a Sunday evening after we got to Houston.
We got into the clinic right on time, of course. No, really, we got there early. When I’m with Kathy we NEVER get anywhere on time. We’re always early. Anyway, that got us into the doc’s office on time or a little early. His nurse went over all the usual questions, and then his nurse practitioner did an exam and asked more questions. She noted the enlarged lymph nodes and my greatly elevated white count. She said, “I guess we’ll need to start treatment now, but I guess it won’t be gene therapy.” I knew that already, from conversations with my doc here in Denton, but still didn’t know why.
She stepped out and shortly thereafter Dr. Keating came in. We got the now-familiar bear hugs and sat down. His first words were, “Are you ready to get back into remission?” He told me that he’d like to put me on a study protocol of the FCR (which his team had developed back in 2001/2002 time frame) plus add the new drug, Avastin, which I mentioned in the previous message. Avastin is “vascular endothelial growth factor inhibitor” or VEG-F. VEG-F is a factor in the blood that promotes the growth of blood vessels. Its inhibitor, Avastin, is used in the treatment of many malignancies because most malignant tumors require lots of new blood vessels to support their rapid and abnormal growth. By blocking the formation of all the new blood vessels to the tumors, Avastin slows tumor growth and facilitates and augments the use of other chemotherapeutic agents.
(Man, this is my first “DGA” in a few years and I’m already deep into medical stuff! Sorry.)
Anyway, though it is widely used in bowel cancers, lung cancers, pancreatic cancers, and more, it has a significant incidence of side effects and complications. I also mentioned these in my previous message, which many of you seeing this have not yet received (more about that in a bit). Among the potential complications are things like, “…serious and sometimes fatal hemorrhage…” and “serious and sometimes fatal bowel perforations have been reported…,” And more! I’ll refer you to the previous message for all the myriad details of what can go wrong. So, I was concerned, firstly, with the serious complications that have been noted, each one with an incidence of 1-2% or so. Those add up to serious numbers in a hurry when there are several of them that can happen.
And secondly, I wondered why a drug designed to inhibit the growth of abnormal blood vessels in tumors was even suspected to be of any utility in leukemia, which is not a solid tumor. Well, the answers are that, regarding the many complications, they are seen primarily in patients with the solid tumors which are eroding into lungs, bowel, etc., or who have active diverticular disease of the large colon. In these conditions there can be a lot of inflammation and if the lesions can’t heal, because the Avastin prevents the growth of blood vessels to the area, then bowel perforations and bleeding can result.
However, though leukemia is not a solid tumor, being mostly a collection of abnormal white blood cells (lymphocytes) in the marrow, spleen, liver, etc.), it turns out that for leukemic cells to survive in the body they require the presence of “nurse-like” cells in order to survive. In the absence of the nurse-like cells, the leukemic cells die within about three days. So the theory is that the Avastin will prevent blood from reaching the nurse-like cells in the marrow, spleen, etc., and thereby hasten the demise of the CLL cells gathering in these organs.
So, recently a study showed that the FCR regimen, which I mentioned above, is probably the best thing going for relapsed CLL, and that there is reason to believe that Avastin might make the results even better. You need to know, however, that this new trial combination of drugs has been tried on only six other patients so far. I’m Lucky Number Seven in the new list of patients!
Now, my doc here in Denton was not at all in favor of me doing the gene therapy, which I really wanted to do, but he is conversely very much in favor of the Avastin. “It’s a wonderful drug.” he said to me. So I have to believe that I should give it a try and hope that I don’t have any major accidents or require any surgery while I’m on the stuff, ‘cause if I do, I won’t heal very well. Remember that the Avastin, which hangs around for about three weeks after each infusion, inhibits the growth of new blood vessels, which are, of course, required for healing.
Dr. Keating feels that as well as I did with the first rounds of chemotherapy in 2002 and 2004, I should do well for several more years after this regimen of medications. And then he said that he predicted that they’d have a cure for the disease in about five years, about the time I might need more therapy. “That would be nice,” I replied. “No,” he said, “that WILL be nice.”
So, I got signed up for the new trial medication, signed the “informed consent” agreeing that I knew what I was getting into, and thought I was done.
But no. The research nurse, Susan, said I hadn’t had a bone marrow biopsy in a while and I needed one before we started. Man, I’d hoped they’d forgotten about those. They are done by drilling into your hip with a needle about the size of a ball-point pen refill, and suctioning out some marrow before going deeper to get a “core” of marrow. They aren’t fun, but I’ve had five of them and, well, have gotten used to them, I guess. In Denver, however, they would typically put in an IV with “feel good” drugs for the procedures. I had heard that at MDA they didn’t take the time for such niceties, instead depending upon local anesthetics to do the job, but that they did a good job at it.
And that turned out to be absolutely correct. The bone marrow aspiration clinic at MDA does about 70 of these procedures a day! Where I was in Denver, they did perhaps two or three daily. The folks at MDA have become very, very skilled at what they do. In fact, they don’t even have doctors doing them. They have nurses or technicians (I’m not sure yet what they were) doing them. I was a bit worried, but it turned out that the procedure itself was not our problem that day; the schedule was.
I was scheduled for 2:30 that same afternoon. As you know, we ALWAYS get to our appointments early. So, after we had lunch at MDA (they have a whole food court in the hospital, not just a typical hospital cafeteria: a burger grill, sushi, BBQ, Chinese, home cookin,’ deli sandwiches, etc.) we went to the clinic. We thought that if we got there early we just might get in for the procedure early too. So we showed up at 12:30 for our 2:30 appointment. Man, the place was packed! The chances of getting in early didn’t look good, and in fact they weren’t. I got in for the biopsy at about 5:10PM after sitting in the waiting area for almost five hours. But that’s not a problem…we’re retired and had nowhere else to go.
The biopsy was just great, if I can use that term for an invasive procedure that no one looks forward to and most folks fear. Despite the lack of any IV drugs, the biopsy was the least painful of all my biopsies. It turns out that they use lots of local anesthetic (they told me they use 10cc of the stuff) and wait until it’s working well. They did a good job. It hurt less than your average flu shot,…really!
So, we’ll be going back down there on the 11th to start Round Three of chemotherapy. If it goes well, we’ll be doing four days of infusions every four weeks for six months. However, I can get the last five infusions here in Denton at my local clinic. I have much more to tell you…but I’m sure you have read enough for now.
Speaking of having enough to read, I’m going to start doing the DGA letters in blog form this time, and have uploaded all my archives for those of you who haven’t yet been subjected to my many rambling thoughts about my disease, about death and dying, and the many humorous stories that made their way into my letters.
I’m not totally happy with the layout of the blog yet, because the entries read from bottom to top in each section, and am still working on it, but if you have absolutely nothing else to do, Books One and Two are at: http://adventureswithleukemia.blogspot.com/
You may feel free to pass this along to any family or friends that may be at all interested.
The first 20 or so entries in 2002 are e-mails I was sending to my family before I even knew I had leukemia and discuss the possibilities of what I was facing show my fear and anger at finding out what I had, and then mention the many treatment possibilities including dealing with trying to find a matching donor for me. The journal entries actually start with the entry of July 22, 2002 and record how the treatments went, the funny things that happened along the way and many depressing and deep ramblings about what it feels like when you think you’re dying. You can “subscribe,” if you’d care to, by clicking on the link at the bottom of each page. Or if you’d rather, you can bookmark the site and just check in from time to time. Note that I’ve found that when I get my recent entries sent to my own mailbox they show up (appropriately, perhaps) in my Bulk Mail or “spam” box.
That’s it for now. Much more later….
Dave
Chapter 1, Verse 1
February 3, 2008
We Have A Plan!
Well, I guess we have a plan as to what to do next.
It’s been almost four full years since I had my last chemotherapy, in the Spring of 2004. That’s the time that I lost my hair, pulled the tube out of my chest and had the RSV infection, among many interesting missteps in getting the drugs at that time. Some of you long time “subscribers” to these never-ending messages may remember the trials I went through with that treatment regimen. But it has worked well. I never expected to be able to go so long between rounds of treatment, and am very glad that it has been as long as it has. I guess my “mutant” status can be credited with the slow progress of my leukemia and the length of time I’ve been able to go between infusions of poisons.
It’s been so long that Kathy and I have been able to put this dread disease out of our minds sometimes. We kinda forget about it and think that everything is normal and as it should be, and that we can live our lives like everyone else. But then I get a blood test, as I have had to do every two to three months, which shows my white count getting greater and greater and we’re reminded that everything is decidedly not normal.
My white count at the first of this year was about 17,000 or so, higher than normal (which is about 3,000 to 9,000 or so), but not too bad for a leukemic. And that was almost three years after my last infusions of Rituxan and Cytoxan. As I’ve mentioned to many of you over the last couple of years, we’ve been watching things but not treating anything because my white cell counts have not been worrisomely high, and because there STILL is no agreed upon standard as to what treatments are most appropriate or “best” for a patient with previously treated and relapsing CLL.
We’ve been talking for over a year about trying gene therapy, but I guess that’s not going to be an option. I don’t know details yet, but it looks like the protocol we had planned on trying, to “immunize” me against my own leukemic cells, isn’t panning out. Not sure about that yet, but if I get more details, I’ll pass them on. Anyway, in the last year my white count has gone up to 100,000. That’s much higher than any count I’ve ever had in the past, but still not all THAT high for a leukemic. Some patients walk around with counts of 200,000 to 300,000 or so.
But in addition to the increasing white cell count, I also now have enlarging lymph nodes, mostly under my arms, where I have a couple of one inch (2 ½ cm) nodes. I never had any of those before. But other than that, I still feel relatively normal for me. Just some lingering fatigue to remind me that I’m sick.
But at a count of 100,000 white cells, most folks agree it’s time to begin treatment of some kind. So we went back down to M. D. Anderson, Houston, to see my doc again to see what he’d recommend.
M. D. Anderson’s a great place for a person with leukemia to go, because, whereas most patients with my disease see a doc who specializes in hematology and oncology (blood diseases and all cancers), when I go to MDA, I’m seen in the Leukemia Clinic by a Leukemologist, a specialist who treats nothing but leukemias. The clinic I go to doesn’t deal with breast cancers, bowel cancers, brain tumors or anything else except leukemia. I find that amazing and reassuring. In fact, the folks down there(including my doctor there) developed the Fludara/Cytoxan/Rituxan (FCR) therapy which I originally had back in 2002, when it was hot off the press and my doc in Denver decided to give it a try with me.
Anyway, they have a lab that is open seven days a week so that their patients can get blood drawn on weekends, which is great, because if you don’t get your labs drawn on the weekend before you see your doc, you have to get up early on the day of your appointment to get them drawn. I’m getting too accustomed to sleeping in to want to get up at 6AM to get a needle poked into my arm. So I got my blood drawn on a Sunday evening after we got to Houston.
We got into the clinic right on time, of course. No, really, we got there early. When I’m with Kathy we NEVER get anywhere on time. We’re always early. Anyway, that got us into the doc’s office on time or a little early. His nurse went over all the usual questions, and then his nurse practitioner did an exam and asked more questions. She noted the enlarged lymph nodes and my greatly elevated white count. She said, “I guess we’ll need to start treatment now, but I guess it won’t be gene therapy.” I knew that already, from conversations with my doc here in Denton, but still didn’t know why.
She stepped out and shortly thereafter Dr. Keating came in. We got the now-familiar bear hugs and sat down. His first words were, “Are you ready to get back into remission?” He told me that he’d like to put me on a study protocol of the FCR (which his team had developed back in 2001/2002 time frame) plus add the new drug, Avastin, which I mentioned in the previous message. Avastin is “vascular endothelial growth factor inhibitor” or VEG-F. VEG-F is a factor in the blood that promotes the growth of blood vessels. Its inhibitor, Avastin, is used in the treatment of many malignancies because most malignant tumors require lots of new blood vessels to support their rapid and abnormal growth. By blocking the formation of all the new blood vessels to the tumors, Avastin slows tumor growth and facilitates and augments the use of other chemotherapeutic agents.
(Man, this is my first “DGA” in a few years and I’m already deep into medical stuff! Sorry.)
Anyway, though it is widely used in bowel cancers, lung cancers, pancreatic cancers, and more, it has a significant incidence of side effects and complications. I also mentioned these in my previous message, which many of you seeing this have not yet received (more about that in a bit). Among the potential complications are things like, “…serious and sometimes fatal hemorrhage…” and “serious and sometimes fatal bowel perforations have been reported…,” And more! I’ll refer you to the previous message for all the myriad details of what can go wrong. So, I was concerned, firstly, with the serious complications that have been noted, each one with an incidence of 1-2% or so. Those add up to serious numbers in a hurry when there are several of them that can happen.
And secondly, I wondered why a drug designed to inhibit the growth of abnormal blood vessels in tumors was even suspected to be of any utility in leukemia, which is not a solid tumor. Well, the answers are that, regarding the many complications, they are seen primarily in patients with the solid tumors which are eroding into lungs, bowel, etc., or who have active diverticular disease of the large colon. In these conditions there can be a lot of inflammation and if the lesions can’t heal, because the Avastin prevents the growth of blood vessels to the area, then bowel perforations and bleeding can result.
However, though leukemia is not a solid tumor, being mostly a collection of abnormal white blood cells (lymphocytes) in the marrow, spleen, liver, etc.), it turns out that for leukemic cells to survive in the body they require the presence of “nurse-like” cells in order to survive. In the absence of the nurse-like cells, the leukemic cells die within about three days. So the theory is that the Avastin will prevent blood from reaching the nurse-like cells in the marrow, spleen, etc., and thereby hasten the demise of the CLL cells gathering in these organs.
So, recently a study showed that the FCR regimen, which I mentioned above, is probably the best thing going for relapsed CLL, and that there is reason to believe that Avastin might make the results even better. You need to know, however, that this new trial combination of drugs has been tried on only six other patients so far. I’m Lucky Number Seven in the new list of patients!
Now, my doc here in Denton was not at all in favor of me doing the gene therapy, which I really wanted to do, but he is conversely very much in favor of the Avastin. “It’s a wonderful drug.” he said to me. So I have to believe that I should give it a try and hope that I don’t have any major accidents or require any surgery while I’m on the stuff, ‘cause if I do, I won’t heal very well. Remember that the Avastin, which hangs around for about three weeks after each infusion, inhibits the growth of new blood vessels, which are, of course, required for healing.
Dr. Keating feels that as well as I did with the first rounds of chemotherapy in 2002 and 2004, I should do well for several more years after this regimen of medications. And then he said that he predicted that they’d have a cure for the disease in about five years, about the time I might need more therapy. “That would be nice,” I replied. “No,” he said, “that WILL be nice.”
So, I got signed up for the new trial medication, signed the “informed consent” agreeing that I knew what I was getting into, and thought I was done.
But no. The research nurse, Susan, said I hadn’t had a bone marrow biopsy in a while and I needed one before we started. Man, I’d hoped they’d forgotten about those. They are done by drilling into your hip with a needle about the size of a ball-point pen refill, and suctioning out some marrow before going deeper to get a “core” of marrow. They aren’t fun, but I’ve had five of them and, well, have gotten used to them, I guess. In Denver, however, they would typically put in an IV with “feel good” drugs for the procedures. I had heard that at MDA they didn’t take the time for such niceties, instead depending upon local anesthetics to do the job, but that they did a good job at it.
And that turned out to be absolutely correct. The bone marrow aspiration clinic at MDA does about 70 of these procedures a day! Where I was in Denver, they did perhaps two or three daily. The folks at MDA have become very, very skilled at what they do. In fact, they don’t even have doctors doing them. They have nurses or technicians (I’m not sure yet what they were) doing them. I was a bit worried, but it turned out that the procedure itself was not our problem that day; the schedule was.
I was scheduled for 2:30 that same afternoon. As you know, we ALWAYS get to our appointments early. So, after we had lunch at MDA (they have a whole food court in the hospital, not just a typical hospital cafeteria: a burger grill, sushi, BBQ, Chinese, home cookin,’ deli sandwiches, etc.) we went to the clinic. We thought that if we got there early we just might get in for the procedure early too. So we showed up at 12:30 for our 2:30 appointment. Man, the place was packed! The chances of getting in early didn’t look good, and in fact they weren’t. I got in for the biopsy at about 5:10PM after sitting in the waiting area for almost five hours. But that’s not a problem…we’re retired and had nowhere else to go.
The biopsy was just great, if I can use that term for an invasive procedure that no one looks forward to and most folks fear. Despite the lack of any IV drugs, the biopsy was the least painful of all my biopsies. It turns out that they use lots of local anesthetic (they told me they use 10cc of the stuff) and wait until it’s working well. They did a good job. It hurt less than your average flu shot,…really!
So, we’ll be going back down there on the 11th to start Round Three of chemotherapy. If it goes well, we’ll be doing four days of infusions every four weeks for six months. However, I can get the last five infusions here in Denton at my local clinic. I have much more to tell you…but I’m sure you have read enough for now.
Speaking of having enough to read, I’m going to start doing the DGA letters in blog form this time, and have uploaded all my archives for those of you who haven’t yet been subjected to my many rambling thoughts about my disease, about death and dying, and the many humorous stories that made their way into my letters.
I’m not totally happy with the layout of the blog yet, because the entries read from bottom to top in each section, and am still working on it, but if you have absolutely nothing else to do, Books One and Two are at: http://adventureswithleukemia.blogspot.com/
You may feel free to pass this along to any family or friends that may be at all interested.
The first 20 or so entries in 2002 are e-mails I was sending to my family before I even knew I had leukemia and discuss the possibilities of what I was facing show my fear and anger at finding out what I had, and then mention the many treatment possibilities including dealing with trying to find a matching donor for me. The journal entries actually start with the entry of July 22, 2002 and record how the treatments went, the funny things that happened along the way and many depressing and deep ramblings about what it feels like when you think you’re dying. You can “subscribe,” if you’d care to, by clicking on the link at the bottom of each page. Or if you’d rather, you can bookmark the site and just check in from time to time. Note that I’ve found that when I get my recent entries sent to my own mailbox they show up (appropriately, perhaps) in my Bulk Mail or “spam” box.
That’s it for now. Much more later….
Dave
Saturday, January 19, 2008
Update of the Update
Hello again,
Not too long after I sent out my update, I heard back from my local doc. He had already talked with Dr. Keating at M. D. Anderson about what they thought I should do next. I didn't expect a reply so fast. I thought it would at least be next week. Anyway, they were going to discuss the two opposing plans for my next therapy, standard chemotherapy (which is not curative but can "buy" more time), or the new, unproven procedure, which has yet to cure or even really help anyone. Plan A or Plan B. Well, I wish I had been privy to the conversation they had, because when they finished their discussion they decided on neither plan. Instead, we're going to consider "Plan C!" Now, "Plan C" is yet another experimental protocol, but using some standard anti-cancer drugs in a new way. If you want the gory details, the protocol is:
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2005-0992
Now, this protocol starts with a combination of Fludara, Cytoxan and Rituxan (or "FCR") which is the combination of drugs I was given back in 2002. It worked quite well. In fact, it worked so well, that we had to stop the regimen early because my white count went too low and I was at risk for infections. What's different about the protocol is that now they want to add a drug called Avastin to the mix to see how it works. Avastin is a monoclonal antibody (like Rituxan) but it inhibits vascular endothelial growth factor (the endothelium is the lining of the blood vessels), which causes abnormal blood vessels to grow in tumors, and accelerates the tumor's growth. Avastin has been around for a while and is used a lot, but as far a I can tell, it's just been used in solid tumors like bowel cancer, lung cancer, pancreatic cancer and kidney cancer. But, like so many anti-cancer drugs, Avastin has some potentially significant side effects:
http://www.fda.gov/cder/foi/label/2004/125085lbl.pdf
(I don't expect even one of you to read through all that stuff, but just a glance will tell you it's a serious drug)
The side effects and complications include bowel perforations, kidney damage leading to dialysis, bleeding into your lungs, severe hypertension, some rare form of brain damage, and a lot more. Wow! But I'm puzzled about why they're wanting to consider this drug in my case, and in the case of any patient with leukemia. Avastin works by controlling the growth of aberrant blood vessels in tumors. But I don't even understand, yet, why Avastin should work in leukemia, 'cause as far as I know, there aren't any aberrant blood vessels to control. Anyway, at this point I'm waiting for a call back from MDA to get an appointment, hopefully soon, to get in to discuss the new protocol and get set up for the treatments. Apparently what they'll want to do is schedule the first series of infusions down there in Houston and then I can have the next several month's infusions back here in Denton.
Stay tuned.
Dave
Not too long after I sent out my update, I heard back from my local doc. He had already talked with Dr. Keating at M. D. Anderson about what they thought I should do next. I didn't expect a reply so fast. I thought it would at least be next week. Anyway, they were going to discuss the two opposing plans for my next therapy, standard chemotherapy (which is not curative but can "buy" more time), or the new, unproven procedure, which has yet to cure or even really help anyone. Plan A or Plan B. Well, I wish I had been privy to the conversation they had, because when they finished their discussion they decided on neither plan. Instead, we're going to consider "Plan C!" Now, "Plan C" is yet another experimental protocol, but using some standard anti-cancer drugs in a new way. If you want the gory details, the protocol is:
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2005-0992
Now, this protocol starts with a combination of Fludara, Cytoxan and Rituxan (or "FCR") which is the combination of drugs I was given back in 2002. It worked quite well. In fact, it worked so well, that we had to stop the regimen early because my white count went too low and I was at risk for infections. What's different about the protocol is that now they want to add a drug called Avastin to the mix to see how it works. Avastin is a monoclonal antibody (like Rituxan) but it inhibits vascular endothelial growth factor (the endothelium is the lining of the blood vessels), which causes abnormal blood vessels to grow in tumors, and accelerates the tumor's growth. Avastin has been around for a while and is used a lot, but as far a I can tell, it's just been used in solid tumors like bowel cancer, lung cancer, pancreatic cancer and kidney cancer. But, like so many anti-cancer drugs, Avastin has some potentially significant side effects:
http://www.fda.gov/cder/foi/label/2004/125085lbl.pdf
(I don't expect even one of you to read through all that stuff, but just a glance will tell you it's a serious drug)
The side effects and complications include bowel perforations, kidney damage leading to dialysis, bleeding into your lungs, severe hypertension, some rare form of brain damage, and a lot more. Wow! But I'm puzzled about why they're wanting to consider this drug in my case, and in the case of any patient with leukemia. Avastin works by controlling the growth of aberrant blood vessels in tumors. But I don't even understand, yet, why Avastin should work in leukemia, 'cause as far as I know, there aren't any aberrant blood vessels to control. Anyway, at this point I'm waiting for a call back from MDA to get an appointment, hopefully soon, to get in to discuss the new protocol and get set up for the treatments. Apparently what they'll want to do is schedule the first series of infusions down there in Houston and then I can have the next several month's infusions back here in Denton.
Stay tuned.
Dave
Thursday, January 17, 2008
Update
Hi everyone,
Ever since I finished my last chemo treatments in the early spring of 2004, I've been asking my docs, "What's next, and when?" And I've never gotten really good answers because, as one of my docs in Denver put it, the "best treatment" is a moving target. In other words, there is really no best treatment, just varying perceptions as what might be okay, since none of the available treatments is a actually a cure. I've also gotten varying opinions about the "when" question, because there are no hard and fast guidelines about even when a treatment should start. Survival apparently is not enhanced by early treatment, even if it results in a complete remission. Some folks treat when your white count doubles within a year; some when your platelet counts drop; others when you're feeling badly or are having night sweats. I still don't have any precise answers to any of these questions, but we're getting closer to the "when"part.
My white count is now 87,000, the highest it's ever been. Even when I started my first course of chemo back in 2002, it was "only" 65,000. (Normal is between 3,000 and about 10,000.) At the start of last year my count was about 15,000 or so. My white count,therefore, has gone up six times what is was a year ago. We haven't treated yet because I've been feeling relatively normal, but finally, my local doc thinks we should probably start something and do it within the next few weeks or a month or so.
Now, most of you know that the docs at M. D. Anderson have offered me the opportunity to take part in an experimental study that hopes to use my own immune system to attack the abnormal leukemic cells. They hope to do this by collecting my leukemic cells and treating them with viral DNA, then putting them back in me so my T-lymphocytes (the other kind; my leukemic cells are abnormal B-lymphocytes) will learn to recognize them as "foreign" and attack and kill them off. The second phase of that study, which I've been invited to join, should be starting soon, maybe just in time. So far the study has neither killed nor cured anyone, after preliminary trials on ten brave souls. My local doc has been a bit hesitant for me to take part, thinking that this cure might, indeed, be worse than my disease (people have randomly, unexpectedly died during gene therapy trials). He's thinking that we should consider more mainstream chemotherapy, like that I've already done or similar regimens. But, like my other docs, it's not clear which, if any, of these other regimens might be "best." But, he's going to call my doc in Houston and they're going to decide on what they think I ought to do. That'll be nice, 'cause for several months now I've been caught between the two schools of thought; that I should do the study regimen and that I shouldn't. Hopefully they'll talk it over and come to a conclusion that they both agree on, so we can proceed. I'm kinda wanting to do the new study, but will be a royal pain because we'll have to spend a lot of time in Houston, at our own expense, and that will also involve a lot of travel back and forth between home and Houston, about a 600 mile round trip. But, bottom line, we'll start something again within weeks, and it may or may not be the new protocol. I'll keep you posted.
Any questions?
Dave
Ever since I finished my last chemo treatments in the early spring of 2004, I've been asking my docs, "What's next, and when?" And I've never gotten really good answers because, as one of my docs in Denver put it, the "best treatment" is a moving target. In other words, there is really no best treatment, just varying perceptions as what might be okay, since none of the available treatments is a actually a cure. I've also gotten varying opinions about the "when" question, because there are no hard and fast guidelines about even when a treatment should start. Survival apparently is not enhanced by early treatment, even if it results in a complete remission. Some folks treat when your white count doubles within a year; some when your platelet counts drop; others when you're feeling badly or are having night sweats. I still don't have any precise answers to any of these questions, but we're getting closer to the "when"part.
My white count is now 87,000, the highest it's ever been. Even when I started my first course of chemo back in 2002, it was "only" 65,000. (Normal is between 3,000 and about 10,000.) At the start of last year my count was about 15,000 or so. My white count,therefore, has gone up six times what is was a year ago. We haven't treated yet because I've been feeling relatively normal, but finally, my local doc thinks we should probably start something and do it within the next few weeks or a month or so.
Now, most of you know that the docs at M. D. Anderson have offered me the opportunity to take part in an experimental study that hopes to use my own immune system to attack the abnormal leukemic cells. They hope to do this by collecting my leukemic cells and treating them with viral DNA, then putting them back in me so my T-lymphocytes (the other kind; my leukemic cells are abnormal B-lymphocytes) will learn to recognize them as "foreign" and attack and kill them off. The second phase of that study, which I've been invited to join, should be starting soon, maybe just in time. So far the study has neither killed nor cured anyone, after preliminary trials on ten brave souls. My local doc has been a bit hesitant for me to take part, thinking that this cure might, indeed, be worse than my disease (people have randomly, unexpectedly died during gene therapy trials). He's thinking that we should consider more mainstream chemotherapy, like that I've already done or similar regimens. But, like my other docs, it's not clear which, if any, of these other regimens might be "best." But, he's going to call my doc in Houston and they're going to decide on what they think I ought to do. That'll be nice, 'cause for several months now I've been caught between the two schools of thought; that I should do the study regimen and that I shouldn't. Hopefully they'll talk it over and come to a conclusion that they both agree on, so we can proceed. I'm kinda wanting to do the new study, but will be a royal pain because we'll have to spend a lot of time in Houston, at our own expense, and that will also involve a lot of travel back and forth between home and Houston, about a 600 mile round trip. But, bottom line, we'll start something again within weeks, and it may or may not be the new protocol. I'll keep you posted.
Any questions?
Dave
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