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
Saturday, February 16, 2008
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
Wednesday, September 12, 2007
Follow-Up at M. D. Anderson
Hello all,
We got safely to and from Houston and thought I ought to give you a report on what transpired. We went down there for a consultation because my white count had about quadrupled (from 11,000 to about 45,000) and my platelets were drifting downward over the last year and my local doc wanted to know what the "big boys" were going to suggest for the next step. A mere doubling of the white count is generally an indication to start treatments. He expects to need to start more chemotherapy by the end of the year.
We got to Houston Tuesday night and checked into the Rotary House Int'l Hotel right across the street from M. D. Anderson. The place is run by Marriott but is somehow connected to Anderson, both physically, by a skywalk onto the Anderson campus, and administratively. It was a wonderful place, not at all institutional as I expected, but nevertheless geared toward the patients who stay there. One early surprise was that, though I was scheduled for blood to be drawn at 6:30 AM before my 8:30 appointment, I was asked upon checking in, if I'd like to have my blood drawn there, that evening, rather than the next morning. Given the opportunity to sleep in an extra hour and a half, I took them up on the offer. They have a blood drawing room right in the hotel, with a great waiting room, with movies, popcorn, etc. The place also has several restaurants, lounges, giftshops, etc.
Anyway, we got my blood drawn and had dinner. The room was very nice and comfortable so we slept well. The next morning we got to the clinic for our appointment (all together now!) early and checked in. Well, they had us in the exam room before time for the appointment. How often does that happen when you go see a doc, huh? When I got checked in, they had my labs ready from the night before. I was pleased to find that my white count was stable at 45,000 and that my platelets had gone up quite a bit. I was examined by the nurse practitioner and found to be basically normal other than for small but slightly enlarged lymph nodes.
So, Dr. Keating came in, gave both of us bear hugs, and we talked. He didn't think I needed treatments right now, but suggested/offered me the opportunity to get a brand new drug in the near future, one based on gene therapy. This new therapy has been tested so far on nine, that's right, nine people. It hasn't killed anyone yet. It also hasn't cured anyone, but that's 'cause it has only gone through Phase 1 of the study,where a drug's safety is studied. In Phase 2, they study the maximum effective doses. So, that's what I'll likely be doing in the coming months.
The therapy involves harvesting leukemic cells from my blood and then processing them with the gene therapy to make them look "foreign" to my immune system, and freezing them. Then, over about five months, they infuse them back into me with the hope that I will start to produce antibodies to the leukemic cells. We don't know if it will work, but, in theory, it should....
So, interesting and a little scary too. And it will involve five or six trips to Anderson with stays of about a week or so each time. But, it won't likely start before the first of the year. So far, so good. And so that's what we've been up to.
Stay tuned,
Dave
We got safely to and from Houston and thought I ought to give you a report on what transpired. We went down there for a consultation because my white count had about quadrupled (from 11,000 to about 45,000) and my platelets were drifting downward over the last year and my local doc wanted to know what the "big boys" were going to suggest for the next step. A mere doubling of the white count is generally an indication to start treatments. He expects to need to start more chemotherapy by the end of the year.
We got to Houston Tuesday night and checked into the Rotary House Int'l Hotel right across the street from M. D. Anderson. The place is run by Marriott but is somehow connected to Anderson, both physically, by a skywalk onto the Anderson campus, and administratively. It was a wonderful place, not at all institutional as I expected, but nevertheless geared toward the patients who stay there. One early surprise was that, though I was scheduled for blood to be drawn at 6:30 AM before my 8:30 appointment, I was asked upon checking in, if I'd like to have my blood drawn there, that evening, rather than the next morning. Given the opportunity to sleep in an extra hour and a half, I took them up on the offer. They have a blood drawing room right in the hotel, with a great waiting room, with movies, popcorn, etc. The place also has several restaurants, lounges, giftshops, etc.
Anyway, we got my blood drawn and had dinner. The room was very nice and comfortable so we slept well. The next morning we got to the clinic for our appointment (all together now!) early and checked in. Well, they had us in the exam room before time for the appointment. How often does that happen when you go see a doc, huh? When I got checked in, they had my labs ready from the night before. I was pleased to find that my white count was stable at 45,000 and that my platelets had gone up quite a bit. I was examined by the nurse practitioner and found to be basically normal other than for small but slightly enlarged lymph nodes.
So, Dr. Keating came in, gave both of us bear hugs, and we talked. He didn't think I needed treatments right now, but suggested/offered me the opportunity to get a brand new drug in the near future, one based on gene therapy. This new therapy has been tested so far on nine, that's right, nine people. It hasn't killed anyone yet. It also hasn't cured anyone, but that's 'cause it has only gone through Phase 1 of the study,where a drug's safety is studied. In Phase 2, they study the maximum effective doses. So, that's what I'll likely be doing in the coming months.
The therapy involves harvesting leukemic cells from my blood and then processing them with the gene therapy to make them look "foreign" to my immune system, and freezing them. Then, over about five months, they infuse them back into me with the hope that I will start to produce antibodies to the leukemic cells. We don't know if it will work, but, in theory, it should....
So, interesting and a little scary too. And it will involve five or six trips to Anderson with stays of about a week or so each time. But, it won't likely start before the first of the year. So far, so good. And so that's what we've been up to.
Stay tuned,
Dave
Wednesday, September 13, 2006
I'm A Mutant!
Greetings from Denton!
Some of you know that I was referred to the famous M. D. Anderson Cancer Center in Houston this week after my white count started climbing again. It hasn't gotten very high yet (only about 10,000) but my doc wanted another opinion on what we should do and when we should do it. So, he sent me to Anderson to be seen by Dr. Michael Keating, probably one of the world's most respected and knowledgeable people as concerns leukemia. I was very pleased to be able to have the opportunity to be seen by him. We got back from there last night and I thought we ought to tell you all about it. A lot happened.
We drove down there, arrived there safely and checked in to an overpriced hotel in central downtown Houston, about 8 blocks from the Cancer Center. It didn't even have free breakfasts, parking or Internet access! Anyway, we spent most of our first evening checking out the place, driving over to the Cancer Center, finding the parking garage, and even going into the clinic building and up to the eighth floor to see where the clinic was. You can't be too prepared, you know.
I've been excited about going down there, and feel privileged to be appointed with Dr. Keating, who is world-renown for his expertise in leukemia. But I have been worried too, since every time I get treated there remain fewer options for the "next time."
So anyway, the next morning, promptly at 7:30 AM we were there. Actually (and you knew this) we were there early! But our first appointment was with the business office to make sure that our insurance was all lined up. No problem! At the last minute (last Friday morning) our insurance, TriCare, had finally approved all the necessary stuff.
My doctor's visit was to be at 8:30 so he could decide what tests I was going to have. Well, we didn't get out of the business stuff until after that, but that wasn't a problem for us. We're in no hurry, we're retired.
We got into the doctor's office at about 10AM, but first the nurse went over all our stuff, asked questions, etc. After Alfreda was finished with me, Dr. Keating's assistant, Dr. Tan, an oncology fellow came in. A "fellow" is an internist who is studying a sub-specialty, in this case, oncology. He was a nice guy, an Aussie with an accent I had a bit of trouble with, and he had a bit of trouble with my speech patterns too. But, we did eventually communicate. He went over my records, asked questions, did a physical exam, etc. During all this, Kathy was with me, sitting in a nearby chair. At some point, Dr. Tan said, "We got back your IgVh gene that you had done in Denton, and it's mutated." Kathy heard this.
Now, it's interesting that they even did this test. It didn't exist until very recently.
When I got sick 4 1/2 years ago, I was diagnosed with CLL, chronic lymphocytic leukemia. That's the same disease my dad had, and he died of it in about five years. And my white counts were rising very rapidly, which is a bad sign. But in the intervening time, they've discovered that there are about five or six different types of CLL, based on your chromosomal abnormalities. And each different sub-type seems to act differently depending on the abnormality. So, I was tested for chromosomal abnormalities in Denver, about two years ago, and was found to have normal chromosomes, which is better than some abnormalities but, curiously, not as good as one particular abnormality. But with the average longevity of patients with disease being 6 years, if you select out the folks with normal chromosomes, it's more like ten years!
Then researchers found that having a particular protein, called CD38, on your leukemia cells was a bad thing, indicating more aggressive disease. I was tested for this in Denver also and am positive for CD38. Bummer. They have also discovered a couple of other "markers" for the disease; the IgVh gene and a test called the zeta associated protein 70, or ZAP 70 test. Just recently they've also found something called a beta microglobulin. The markers can help predict how aggressive your disease is likely to be and what medications might work best, but that's still being sorted out. This is really emerging science, hot off the press.
So, since I've been in Denton we've just been watching my white counts, which have been slowly rising. My doc finally decided to send me to M. D. Anderson since there is no consensus on what the best treatments are nor when it's best to treat. Since I was feeling relatively normal, and the treatments can be hazardous, he was unwilling (I think) to make the call on what to do next.
So, when Dr. Tan was going over me and told me the result of the IgVh gene test, it having been found to be mutated. Kathy was very surprised to hear me respond with "Great!"
It turns out that, counterintuitively, if this particular gene is mutated, you do MUCH better in terms of longevity than if you have the normal gene. When I later explained this to Kathy (after Dr. Tan left the room), tears welled up in her eyes. My ZAP 70 test was negative also, which is also a very good sign. And the beta microglobulin was low, which is very good. And that CD38 test, though it is positive, they've found in the last couple of years that if the levels are low, it's not too bad. My levels are low.
It's interesting that my IgVh gene is mutated. In most men, it's not. In fact, women outnumber men eleven to one in having the mutated gene, and consequently women do much better with this disease than the average guy does, in terms of longevity. I told Kathy that it's my feminine side coming out, and that's why I'm so sensitive and romantic (can you see her eyes rolling?).
This IgVh gene stuff is certainly no guarantee of longevity, and this curious disease that I have can, itself, mutate with time, to more aggressive types, but we'll take the good news when we can get it!
So, we saw Dr. Keating. I've been reading his stuff and hearing him talk (on line) for years, and I liked what I'd seen and heard. He is famous for being a "bear-hugger!" I told Kathy about this and said that since I was seeing him for the first time I'd probably get a handshake, but maybe I'd get a hug next time. But no...he came in, I extended my hand, but he ignored it and rapidly enveloped me in a bear hug! Then he went to Kathy and hugged her too.
He's a nice guy; easy to talk to, soft spoken, knowledgeable. He ordered a few more tests and asked us to come back the next day. We did.
The next day we met with him again, got hugged again, and went over all the labs. He went over all the prognostic tests he'd ordered, said I didn't need a bone marrow biopsy at that time, and that he'd like to follow me for, oh... about twenty years! Wow!! And he said I only needed to get blood tests about every three months ("Relax, you don't need monthly tests!") and I should probably come back to see him in, oh maybe, a year or so!
He also would like to hold off on any more chemotherapy for now because they're in the process of developing what essentially is a vaccine against a patient's specific leukemia, so that your own immune system can destroy the gremlins! If the immune system is damaged by chemotherapy, then the new method of going after the bad guys won't work as well. He said it'll work much better than the "bombs away" approach of old style chemotherapy, which destroys pretty much everything in it's path.
So, after planning for my demise in the next few years, it looks like I may be able to live long enough to spend some of my retirement savings. We'll see how this goes. It's just an amazing turn of events that I'm happy to share with you.
So, I'm happy to tell you that I'm a mutant...though several of you have suspected this for many years!
Thanks to all of you for your constant support and your prayers. Please pass this wonderful news on to your prayer groups for me! I'll keep in touch with you as things develop, though I don't expect much to happen anytime soon.
Until later,
Dave
Some of you know that I was referred to the famous M. D. Anderson Cancer Center in Houston this week after my white count started climbing again. It hasn't gotten very high yet (only about 10,000) but my doc wanted another opinion on what we should do and when we should do it. So, he sent me to Anderson to be seen by Dr. Michael Keating, probably one of the world's most respected and knowledgeable people as concerns leukemia. I was very pleased to be able to have the opportunity to be seen by him. We got back from there last night and I thought we ought to tell you all about it. A lot happened.
We drove down there, arrived there safely and checked in to an overpriced hotel in central downtown Houston, about 8 blocks from the Cancer Center. It didn't even have free breakfasts, parking or Internet access! Anyway, we spent most of our first evening checking out the place, driving over to the Cancer Center, finding the parking garage, and even going into the clinic building and up to the eighth floor to see where the clinic was. You can't be too prepared, you know.
I've been excited about going down there, and feel privileged to be appointed with Dr. Keating, who is world-renown for his expertise in leukemia. But I have been worried too, since every time I get treated there remain fewer options for the "next time."
So anyway, the next morning, promptly at 7:30 AM we were there. Actually (and you knew this) we were there early! But our first appointment was with the business office to make sure that our insurance was all lined up. No problem! At the last minute (last Friday morning) our insurance, TriCare, had finally approved all the necessary stuff.
My doctor's visit was to be at 8:30 so he could decide what tests I was going to have. Well, we didn't get out of the business stuff until after that, but that wasn't a problem for us. We're in no hurry, we're retired.
We got into the doctor's office at about 10AM, but first the nurse went over all our stuff, asked questions, etc. After Alfreda was finished with me, Dr. Keating's assistant, Dr. Tan, an oncology fellow came in. A "fellow" is an internist who is studying a sub-specialty, in this case, oncology. He was a nice guy, an Aussie with an accent I had a bit of trouble with, and he had a bit of trouble with my speech patterns too. But, we did eventually communicate. He went over my records, asked questions, did a physical exam, etc. During all this, Kathy was with me, sitting in a nearby chair. At some point, Dr. Tan said, "We got back your IgVh gene that you had done in Denton, and it's mutated." Kathy heard this.
Now, it's interesting that they even did this test. It didn't exist until very recently.
When I got sick 4 1/2 years ago, I was diagnosed with CLL, chronic lymphocytic leukemia. That's the same disease my dad had, and he died of it in about five years. And my white counts were rising very rapidly, which is a bad sign. But in the intervening time, they've discovered that there are about five or six different types of CLL, based on your chromosomal abnormalities. And each different sub-type seems to act differently depending on the abnormality. So, I was tested for chromosomal abnormalities in Denver, about two years ago, and was found to have normal chromosomes, which is better than some abnormalities but, curiously, not as good as one particular abnormality. But with the average longevity of patients with disease being 6 years, if you select out the folks with normal chromosomes, it's more like ten years!
Then researchers found that having a particular protein, called CD38, on your leukemia cells was a bad thing, indicating more aggressive disease. I was tested for this in Denver also and am positive for CD38. Bummer. They have also discovered a couple of other "markers" for the disease; the IgVh gene and a test called the zeta associated protein 70, or ZAP 70 test. Just recently they've also found something called a beta microglobulin. The markers can help predict how aggressive your disease is likely to be and what medications might work best, but that's still being sorted out. This is really emerging science, hot off the press.
So, since I've been in Denton we've just been watching my white counts, which have been slowly rising. My doc finally decided to send me to M. D. Anderson since there is no consensus on what the best treatments are nor when it's best to treat. Since I was feeling relatively normal, and the treatments can be hazardous, he was unwilling (I think) to make the call on what to do next.
So, when Dr. Tan was going over me and told me the result of the IgVh gene test, it having been found to be mutated. Kathy was very surprised to hear me respond with "Great!"
It turns out that, counterintuitively, if this particular gene is mutated, you do MUCH better in terms of longevity than if you have the normal gene. When I later explained this to Kathy (after Dr. Tan left the room), tears welled up in her eyes. My ZAP 70 test was negative also, which is also a very good sign. And the beta microglobulin was low, which is very good. And that CD38 test, though it is positive, they've found in the last couple of years that if the levels are low, it's not too bad. My levels are low.
It's interesting that my IgVh gene is mutated. In most men, it's not. In fact, women outnumber men eleven to one in having the mutated gene, and consequently women do much better with this disease than the average guy does, in terms of longevity. I told Kathy that it's my feminine side coming out, and that's why I'm so sensitive and romantic (can you see her eyes rolling?).
This IgVh gene stuff is certainly no guarantee of longevity, and this curious disease that I have can, itself, mutate with time, to more aggressive types, but we'll take the good news when we can get it!
So, we saw Dr. Keating. I've been reading his stuff and hearing him talk (on line) for years, and I liked what I'd seen and heard. He is famous for being a "bear-hugger!" I told Kathy about this and said that since I was seeing him for the first time I'd probably get a handshake, but maybe I'd get a hug next time. But no...he came in, I extended my hand, but he ignored it and rapidly enveloped me in a bear hug! Then he went to Kathy and hugged her too.
He's a nice guy; easy to talk to, soft spoken, knowledgeable. He ordered a few more tests and asked us to come back the next day. We did.
The next day we met with him again, got hugged again, and went over all the labs. He went over all the prognostic tests he'd ordered, said I didn't need a bone marrow biopsy at that time, and that he'd like to follow me for, oh... about twenty years! Wow!! And he said I only needed to get blood tests about every three months ("Relax, you don't need monthly tests!") and I should probably come back to see him in, oh maybe, a year or so!
He also would like to hold off on any more chemotherapy for now because they're in the process of developing what essentially is a vaccine against a patient's specific leukemia, so that your own immune system can destroy the gremlins! If the immune system is damaged by chemotherapy, then the new method of going after the bad guys won't work as well. He said it'll work much better than the "bombs away" approach of old style chemotherapy, which destroys pretty much everything in it's path.
So, after planning for my demise in the next few years, it looks like I may be able to live long enough to spend some of my retirement savings. We'll see how this goes. It's just an amazing turn of events that I'm happy to share with you.
So, I'm happy to tell you that I'm a mutant...though several of you have suspected this for many years!
Thanks to all of you for your constant support and your prayers. Please pass this wonderful news on to your prayer groups for me! I'll keep in touch with you as things develop, though I don't expect much to happen anytime soon.
Until later,
Dave
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