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