This is the story of my finding out I had an incurable and lethal form of leukemia. It starts in early 2002. I've been lucky, as I've lived ten years with the disease, which is longer than the average longevity for a lot of folks. I never thought I'd live this long! This story starts out with a series of messages I sent to my family regarding my illness, before I even knew what I had. Then it goes through a lot of anguished and fearful messages as I realize what I'm dealing with. You see, my dad died of the same disease after having it for five years. These short messages start in February and go up to about July 2002, when I started my first round of chemotherapy.
When I finally started my first round of chemotherapy in July 2002, I began a journal, at the suggestion of a colleague, which I sent out to concerned friends and family. I included a lot of medical information about the disease and its treatments, my fears about my future and what was going to happen to my wife when I died, plus a lot of personal information that concerns things not generally discussed in public; my depression, references to sexual dysfunctions, side effects, diet and weight problems and, uh, excretory problems (all in good humor of course, without many clinical details). I'm a physician so I'm pretty open with these things. They're what I dealt with in caring for patients for decades, after all. There are many deep, thoughtful passages about death and dying, but there are also a lot of very humorous references about my treatments and my many misadventures (such as the time I accidentally pulled a central line out of my chest while in the shower--"Dumb ass!" I called myself) that I experienced during my therapy. There's rare bawdy humor, too, but I tried to restrain myself, not being sure exactly who was reading my stuff. You may find some of these things interesting, funny, sad, boring, too clinical, or whatever. It kinda reads like a book, and each "verse" (as I for some reason listed each passage) tends to build on the previous ones. Our daughter convinced me that e-mails were "so last-century" and she encouraged me to start this blog. So here ya go!
It presently consists roughly of five sections starting with the compiled messages to my family from early 2002. The divisions between are roughly as follows:
Prologue-- early 2002 up to about July 2002.
Book One-- The First Chemotherapy Experience, July 22, 2002 until October 2003
Book Two-- Relapse, and The Second Chemotherapy Experience, With Stem Cell Collection, October 2003 to about October 2004 with a few updates thereafter
Book Three-- Starting in February 2008, More Chemotherapy and Some Experimental Stuff, with introductory information in the letters leading up "Book Three."
Book Four--It's Baaack! Starting March 2010.
Book Five--(Coming Soon!)
I welcome e-mail questions and frequently have addressed them openly in my letters which have been sent out across the US, Germany and Scotland to many concerned friends and family. I can be reached at dreck@prodigy.net
I hope to use this blog to keep all you folks who are reading this updated from time to time as I progress into my adventure and experience more and different treatments.
Thursday, January 19, 2012
Wednesday, January 18, 2012
Arzerra and Beyond...But To Where?
Dave’s Great Adventure
Book 4, Chapter 1, Verse 6
January 13, 2012
[[[ “If you want to make God laugh, tell Him your plans.” --Anonymous
I’ve used this quote a couple of times over the years but it’s again appropriate. We only “think” we have our lives planned out. The following message was started in mid-November, but then I didn’t get back to it for quite a while. Meanwhile, things have changed again. Read on. ]]]
---November 14, 2011---
I think there are real signs of hope with this new stuff. I believe it’s working better than I thought it might.
When I last wrote about what was going on I had just finished Phase One of my Arzerra (ofatumumab) treatments. The treatments had begun rather abruptly in August. In mid-August, after waiting five weeks to hear the results of the cytogenetic tests which I described in excruciating detail in my last letter, my local doc got the details about the development of my worrisome p53 mutation and the plan for treatment, from my doc in Houston. With that information, we began the Arzerra almost immediately, within a week. In fact, we started the first dose of the Arzerra on August 23rd, our 42nd wedding anniversary. I try to make our anniversaries memorable for Kathy.
The Arzerra infusions have gone very well. The first phase of the treatment was eight weekly infusions. The side effects have been relatively minimal, all things considered, and that’s because I haven’t been getting any poisons this time. With all my previous treatments I had combinations of drugs which included poisons, as most chemotherapy targets fast growing cells, like cancer cells. The problem is, of course, that all fast-growing cells in one’s body are not cancer cells, so normal cells get affected as well. And that leads to side effects; the nausea, hair loss, mouth sores, etc. One of the drugs which I had in all three previous chemotherapy regimens is some stuff called cyclophosphamide, which advertises its role in chemotherapy by its trade name, Cytoxan. That’s a play on its activity within the body. “Cyto-” means cell; “toxin” means poison. Therefore, its trade name, Cytoxan, or “cyto-toxin” literally means “cell poison.”
But the Arzerra I’m now getting is not a poison, per se. It is pure antibody, an antibody directed against white blood cells with a protein called CD20, which is on the cell membrane of all CLL cells (CLL cells are actually abnormal B-lymphocytes, which are the kind that make your antibodies). It attaches to the CD20 protein and allows the body’s immune system to bore a hole in the leukemia cell’s membrane, popping it rather like a microscopic balloon. That’s the good or even great part about the antibody treatments. They target only a specific population of cells, ignoring the rest. But when they simultaneously pop billions of leukemia cells, all those dying cells spill their cell contents into your blood stream, and all those proteins, histamines, DNA and such, can clog your kidneys, cause severe allergic reactions, breathing problems, low blood pressure, and the like. Because of this possibility, before each treatment we are given antihistamines and steroids, to suppress the allergy-like reactions, and we are given the drug very, very slowly. The first treatment I got took us from 8:30 in the morning until 6:30 in the evening to complete. As I got used to the drug and as my white blood cell counts dropped (giving the Arzerra ever fewer “targets” to seek out), we were able to start giving the drug faster and faster and by the end of my eight consecutive weeks of treatments, we were able to complete the infusions by 3:00PM.
By the way, my clinic billed about $25,000 for each weekly treatment. These newer chemotherapy drugs are wonderful but they are also fantastically expensive.
But the Arzerra has worked extremely well, dropping my white blood cell counts from a pre-treatment level of just under 80,000 (normal is about 3,000 to about 9,000) to about 4,000 after the eight weeks of treatment. Now, that count is in the normal range, but the count still is not “normal,” as another test that looks for abnormal white cells in my blood, determined that 35% of my remaining white blood cells were still leukemia cells. But that’s not really a surprise. The Arzerra really wasn’t expected to put me into a complete remission anyway.
Despite that minor point, things are going very well, better than I’d hoped. When I started the Arzerra I was told that there was only about a 50% chance I would have a response to the drug because I now have the more aggressive leukemia mutation. Well, I’m obviously in the 50% of the population on whom the new drug works. Then, after we finished the eight consecutive weeks of infusions, and waited a full four weeks for the start of my monthly treatments, my white counts continued to drift down. In other words, despite stopping the drug for a month, my disease didn’t come charging back. I hope this trend continues. So far it has. I’ve had one of the monthly infusions and my white counts have remained around 3,000 or so. My next treatment will be in early December and will continue monthly through next February.
But just about any treatment will have side effects, and the major side effect that one gets with the Arzerra stems from its ability to seek out and kill only white blood cells with the CD20 marker on its cell wall. Unfortunately, all NORMAL B-lymphocytes (the ones we depend on to make our antibodies) ALSO have the CD20 antigen. So, that means that while the Arzerra is wiping out billions of leukemia cells, it’s also taking out a large number of my normal lymphocytes, too. That puts me at risk for infections as well as other tumors and so forth. But, that’s the chance I have to take to be able to hold my disease at bay long enough to try to find another, better, long term treatment and possibly a cure. In any case, the plan all along with the Arzerra has been to give me this drug over about six months, then wait perhaps six more months until it stopped working and then do…something. What, exactly, has been unclear.
I’ve been trying to re-evaluate my expected longevity based on the results of the Arzerra so far. When I first found out I had the p53 mutation, which I already knew was bad, I went back to my sources, one of which is an excellent CLL web based resource called “CLL Topics,” a well researched, critical review of all things related to CLL and its treatment. Here I found the article which noted that average longevity was just 13 to 15 months! Just over a year. But, it’s now been six months since I started the Arzerra and things seem to be going well. Since the CLL hasn’t stormed back between my monthly infusions so far, I’m guessing I may have more than a year left after all. Other sources I’ve checked suggest average longevity is perhaps 1 to 2 years and another source says 2 to 3 years. In any case, if these are accurate, those are AVERAGE numbers meaning half the patients will live longer, the other half less than that. And all of us cancer patients just KNOW we’re going to be in the longer-lived half. It’s unclear also, if these numbers are for treated or untreated patients, and if treated, what the treatment was. We shall see. In any case, I’m feeling much too normal to think that I’ll be dead within the year.
---January 11, 2012---
Things have changed. I wrote all the above about eight weeks ago but then couldn’t get back to it to finish the report. I had been very encouraged by the results of the Arzerra treatments since they seemed to be holding off the advancement of the disease. But, in the last several weeks, though my lab tests still show improvement, my lymph nodes are again enlarging in my armpits and some are now growing in my neck as well. Not good. My local oncologist here in Denton recently reported this to Dr. Keating, my doc in Houston at M. D. Anderson, and we got an unexpected phone call a few days ago.
Dr. Keating called back with some surprising and potentially very exciting news. He has cancelled the last of my four monthly infusions of Arzerra, since it hasn’t worked all that well in the last couple of months anyway and, after I’ve been off the drug for a month, which will be at the end of January, I am to get in contact with him again to talk about enrolling in a clinical study of some kind. What kind of clinical trial? I don’t yet know. When will it start? I don’t know. How long will it be? I don’t know. What are the risks involved? I don’t know.
He had been talking about possibly going to a stem cell transplant in the very near future. In fact, I have several appointments set up in late February to speak to the transplant team in Houston. That seems to be the new approach to treating folks with the p53 mutation. Rather than try multiple treatments of chemotherapy which will likely not work, they’re going to transplantion sooner in the course of treatment, as the transplant works better when done in patients who are not critically ill. Of course, with a 15 to 25% mortality rate associated with transplant, it’s a hard sell to folks who don’t feel or look critically ill, but that’s the current trend and I have been rather expecting to be going that direction in the near future.
But, now Dr. Keating is talking about enrolling me in a clinical trial which is just now opening. Unfortunately for me, the message I received did not mention what the trial would be, so I’m a bit in the dark. We have talked about the new, rather unfortunately named “btk inhibitors” like CAL 101 and PCI 32765 (this would be a good time to use Google!) which is what I am hoping he’s going to get me into. These seem to have great promise in destroying the disease and seem to have minimal side effects. The treatment consists of simply taking a pill daily, with most patients having minimal side effects. That sounds too good to be true. I mentioned the unfortunate naming…. The drugs are called “Bruton’s tyrosine kinase inhibitors,” hence the “btk” designation. But not too many years ago there was a serial killer in Wichita, Kansas who went by the name of the “BTK killer,” for “Bind, Torture, Kill.” Well, this stuff kills CLL cells, I suppose. Maybe it tortures them too!
Other possibilities for the clinical trial include a combination of drugs using lenolidamide, a derivative of the notorious birth defect causing drug Thalidomide. It is also a pill form of anti-CLL drug, but is frequently used in combination with other drugs such as Arzerra. And then there are the new CARs treatments. This stands for “Chimeric Antigen Receptors” and is the basis for the treatment that made a big splash in the press last summer, as having cured a few patients. It involves treating one’s own T-lymphocytes and training them to attack the leukemia cells. This has worked well in a very few patients, but thus far there is no long term follow-up, just a year or so. It may take the place of stem cell transplants some day, but is extremely labor intensive and expensive, since it involves taking a patient’s T-lymphocytes out, treating then, and reinjecting them into the same patient. Every patient will have to have a personalized treatment with his/her own T-lymphocytes. My cells wouldn’t work for someone else, and vice versa. More about T-lymphocytes later, if I end up in that kind of program.
Or, the clinical trial could be something else entirely. The message I got was third hand, having gone from Dr. Keating to my local doc’s message machine and then passed to my doc’s nurse, who called me. If there were more details in the message, I didn’t get them. I’ve sent a message to my team in Houston asking for more information but have yet to hear back from them. Wish me luck.
And so, that’s the latest. My disease is getting aggressive again, the Arzerra isn’t working as well, and now I’m off it entirely. And, some experimental medicine looms in my future, probably within a month or so.
But despite all this, I’m still doing pretty well. I don’t feel ill, I get to do most of the things I want to do if I don’t do too much of it and, really, the only consequence of my disease that I can discern is that I feel more tired than I‘d like and my muscles ache some. But hey, I’m 65 years old now. Maybe I should feel more tired that I used to.
And that’s all for now. I’ll be back when I learn more about what’s coming my way in the next few months or so.
Dave
***As I start yet another chapter in my battle against leukemia, I am reminded of this quote:
--“It is never too late to start. It is always too soon to quit.”—Norma R. Lineberger--
Norma worked for the Legal Defense and Education Foundation, and died of leukemia in September 2009.
www.adventureswithleukemia.blogspot.com
Book 4, Chapter 1, Verse 6
January 13, 2012
[[[ “If you want to make God laugh, tell Him your plans.” --Anonymous
I’ve used this quote a couple of times over the years but it’s again appropriate. We only “think” we have our lives planned out. The following message was started in mid-November, but then I didn’t get back to it for quite a while. Meanwhile, things have changed again. Read on. ]]]
---November 14, 2011---
I think there are real signs of hope with this new stuff. I believe it’s working better than I thought it might.
When I last wrote about what was going on I had just finished Phase One of my Arzerra (ofatumumab) treatments. The treatments had begun rather abruptly in August. In mid-August, after waiting five weeks to hear the results of the cytogenetic tests which I described in excruciating detail in my last letter, my local doc got the details about the development of my worrisome p53 mutation and the plan for treatment, from my doc in Houston. With that information, we began the Arzerra almost immediately, within a week. In fact, we started the first dose of the Arzerra on August 23rd, our 42nd wedding anniversary. I try to make our anniversaries memorable for Kathy.
The Arzerra infusions have gone very well. The first phase of the treatment was eight weekly infusions. The side effects have been relatively minimal, all things considered, and that’s because I haven’t been getting any poisons this time. With all my previous treatments I had combinations of drugs which included poisons, as most chemotherapy targets fast growing cells, like cancer cells. The problem is, of course, that all fast-growing cells in one’s body are not cancer cells, so normal cells get affected as well. And that leads to side effects; the nausea, hair loss, mouth sores, etc. One of the drugs which I had in all three previous chemotherapy regimens is some stuff called cyclophosphamide, which advertises its role in chemotherapy by its trade name, Cytoxan. That’s a play on its activity within the body. “Cyto-” means cell; “toxin” means poison. Therefore, its trade name, Cytoxan, or “cyto-toxin” literally means “cell poison.”
But the Arzerra I’m now getting is not a poison, per se. It is pure antibody, an antibody directed against white blood cells with a protein called CD20, which is on the cell membrane of all CLL cells (CLL cells are actually abnormal B-lymphocytes, which are the kind that make your antibodies). It attaches to the CD20 protein and allows the body’s immune system to bore a hole in the leukemia cell’s membrane, popping it rather like a microscopic balloon. That’s the good or even great part about the antibody treatments. They target only a specific population of cells, ignoring the rest. But when they simultaneously pop billions of leukemia cells, all those dying cells spill their cell contents into your blood stream, and all those proteins, histamines, DNA and such, can clog your kidneys, cause severe allergic reactions, breathing problems, low blood pressure, and the like. Because of this possibility, before each treatment we are given antihistamines and steroids, to suppress the allergy-like reactions, and we are given the drug very, very slowly. The first treatment I got took us from 8:30 in the morning until 6:30 in the evening to complete. As I got used to the drug and as my white blood cell counts dropped (giving the Arzerra ever fewer “targets” to seek out), we were able to start giving the drug faster and faster and by the end of my eight consecutive weeks of treatments, we were able to complete the infusions by 3:00PM.
By the way, my clinic billed about $25,000 for each weekly treatment. These newer chemotherapy drugs are wonderful but they are also fantastically expensive.
But the Arzerra has worked extremely well, dropping my white blood cell counts from a pre-treatment level of just under 80,000 (normal is about 3,000 to about 9,000) to about 4,000 after the eight weeks of treatment. Now, that count is in the normal range, but the count still is not “normal,” as another test that looks for abnormal white cells in my blood, determined that 35% of my remaining white blood cells were still leukemia cells. But that’s not really a surprise. The Arzerra really wasn’t expected to put me into a complete remission anyway.
Despite that minor point, things are going very well, better than I’d hoped. When I started the Arzerra I was told that there was only about a 50% chance I would have a response to the drug because I now have the more aggressive leukemia mutation. Well, I’m obviously in the 50% of the population on whom the new drug works. Then, after we finished the eight consecutive weeks of infusions, and waited a full four weeks for the start of my monthly treatments, my white counts continued to drift down. In other words, despite stopping the drug for a month, my disease didn’t come charging back. I hope this trend continues. So far it has. I’ve had one of the monthly infusions and my white counts have remained around 3,000 or so. My next treatment will be in early December and will continue monthly through next February.
But just about any treatment will have side effects, and the major side effect that one gets with the Arzerra stems from its ability to seek out and kill only white blood cells with the CD20 marker on its cell wall. Unfortunately, all NORMAL B-lymphocytes (the ones we depend on to make our antibodies) ALSO have the CD20 antigen. So, that means that while the Arzerra is wiping out billions of leukemia cells, it’s also taking out a large number of my normal lymphocytes, too. That puts me at risk for infections as well as other tumors and so forth. But, that’s the chance I have to take to be able to hold my disease at bay long enough to try to find another, better, long term treatment and possibly a cure. In any case, the plan all along with the Arzerra has been to give me this drug over about six months, then wait perhaps six more months until it stopped working and then do…something. What, exactly, has been unclear.
I’ve been trying to re-evaluate my expected longevity based on the results of the Arzerra so far. When I first found out I had the p53 mutation, which I already knew was bad, I went back to my sources, one of which is an excellent CLL web based resource called “CLL Topics,” a well researched, critical review of all things related to CLL and its treatment. Here I found the article which noted that average longevity was just 13 to 15 months! Just over a year. But, it’s now been six months since I started the Arzerra and things seem to be going well. Since the CLL hasn’t stormed back between my monthly infusions so far, I’m guessing I may have more than a year left after all. Other sources I’ve checked suggest average longevity is perhaps 1 to 2 years and another source says 2 to 3 years. In any case, if these are accurate, those are AVERAGE numbers meaning half the patients will live longer, the other half less than that. And all of us cancer patients just KNOW we’re going to be in the longer-lived half. It’s unclear also, if these numbers are for treated or untreated patients, and if treated, what the treatment was. We shall see. In any case, I’m feeling much too normal to think that I’ll be dead within the year.
---January 11, 2012---
Things have changed. I wrote all the above about eight weeks ago but then couldn’t get back to it to finish the report. I had been very encouraged by the results of the Arzerra treatments since they seemed to be holding off the advancement of the disease. But, in the last several weeks, though my lab tests still show improvement, my lymph nodes are again enlarging in my armpits and some are now growing in my neck as well. Not good. My local oncologist here in Denton recently reported this to Dr. Keating, my doc in Houston at M. D. Anderson, and we got an unexpected phone call a few days ago.
Dr. Keating called back with some surprising and potentially very exciting news. He has cancelled the last of my four monthly infusions of Arzerra, since it hasn’t worked all that well in the last couple of months anyway and, after I’ve been off the drug for a month, which will be at the end of January, I am to get in contact with him again to talk about enrolling in a clinical study of some kind. What kind of clinical trial? I don’t yet know. When will it start? I don’t know. How long will it be? I don’t know. What are the risks involved? I don’t know.
He had been talking about possibly going to a stem cell transplant in the very near future. In fact, I have several appointments set up in late February to speak to the transplant team in Houston. That seems to be the new approach to treating folks with the p53 mutation. Rather than try multiple treatments of chemotherapy which will likely not work, they’re going to transplantion sooner in the course of treatment, as the transplant works better when done in patients who are not critically ill. Of course, with a 15 to 25% mortality rate associated with transplant, it’s a hard sell to folks who don’t feel or look critically ill, but that’s the current trend and I have been rather expecting to be going that direction in the near future.
But, now Dr. Keating is talking about enrolling me in a clinical trial which is just now opening. Unfortunately for me, the message I received did not mention what the trial would be, so I’m a bit in the dark. We have talked about the new, rather unfortunately named “btk inhibitors” like CAL 101 and PCI 32765 (this would be a good time to use Google!) which is what I am hoping he’s going to get me into. These seem to have great promise in destroying the disease and seem to have minimal side effects. The treatment consists of simply taking a pill daily, with most patients having minimal side effects. That sounds too good to be true. I mentioned the unfortunate naming…. The drugs are called “Bruton’s tyrosine kinase inhibitors,” hence the “btk” designation. But not too many years ago there was a serial killer in Wichita, Kansas who went by the name of the “BTK killer,” for “Bind, Torture, Kill.” Well, this stuff kills CLL cells, I suppose. Maybe it tortures them too!
Other possibilities for the clinical trial include a combination of drugs using lenolidamide, a derivative of the notorious birth defect causing drug Thalidomide. It is also a pill form of anti-CLL drug, but is frequently used in combination with other drugs such as Arzerra. And then there are the new CARs treatments. This stands for “Chimeric Antigen Receptors” and is the basis for the treatment that made a big splash in the press last summer, as having cured a few patients. It involves treating one’s own T-lymphocytes and training them to attack the leukemia cells. This has worked well in a very few patients, but thus far there is no long term follow-up, just a year or so. It may take the place of stem cell transplants some day, but is extremely labor intensive and expensive, since it involves taking a patient’s T-lymphocytes out, treating then, and reinjecting them into the same patient. Every patient will have to have a personalized treatment with his/her own T-lymphocytes. My cells wouldn’t work for someone else, and vice versa. More about T-lymphocytes later, if I end up in that kind of program.
Or, the clinical trial could be something else entirely. The message I got was third hand, having gone from Dr. Keating to my local doc’s message machine and then passed to my doc’s nurse, who called me. If there were more details in the message, I didn’t get them. I’ve sent a message to my team in Houston asking for more information but have yet to hear back from them. Wish me luck.
And so, that’s the latest. My disease is getting aggressive again, the Arzerra isn’t working as well, and now I’m off it entirely. And, some experimental medicine looms in my future, probably within a month or so.
But despite all this, I’m still doing pretty well. I don’t feel ill, I get to do most of the things I want to do if I don’t do too much of it and, really, the only consequence of my disease that I can discern is that I feel more tired than I‘d like and my muscles ache some. But hey, I’m 65 years old now. Maybe I should feel more tired that I used to.
And that’s all for now. I’ll be back when I learn more about what’s coming my way in the next few months or so.
Dave
***As I start yet another chapter in my battle against leukemia, I am reminded of this quote:
--“It is never too late to start. It is always too soon to quit.”—Norma R. Lineberger--
Norma worked for the Legal Defense and Education Foundation, and died of leukemia in September 2009.
www.adventureswithleukemia.blogspot.com
Wednesday, November 2, 2011
...but the news was just horrible.
Dave’s Great Adventure
Book 4, Chapter 1, Verse 5
November 2, 2011
I didn’t expect this. I was doing so well. I felt good and was getting along just fine. I mean, I had done all those half-marathons, right? How could I be this sick?
We had a busy spring and early summer. My disease, which had relapsed the previous year, had been advancing faster with my white counts doubling every couple of months or so. I was expecting to have to do more chemotherapy by about mid-summer, so we packed our travel plans into the early part of the summer. We went to Oklahoma City for a marathon (in the rain and cold) in May, went to San Diego for one there in June. We went to a reunion of my Vietnam vet buddies in Tampa in late June, to a family reunion in North Carolina in July, and more. In the midst of all these trips we went to Houston in early July to see my doc there, who is one of the world’s foremost gurus in the management of chronic lymphocytic leukemia.
I was still feeling well; maybe a little more tired than I’d care to admit, but over all, I was doing okay except that my lab tests told another story. My disease was advancing rapidly. I talked things over with my doc, Dr. Michael Keating, and we went over some possible treatments. I say “possible,” because after you’ve been treated for this disease once or twice, there are no standard “best” treatments anymore, just lots of possibilities.
But he wanted to do a few more cytogenetic (chromosome) tests before we started anything, to help guide us to, hopefully, the best of our options. He said I’d hear something about the test results “in a couple of weeks.”
Now, to me, “a couple of weeks” mean exactly fourteen days. When I didn’t hear anything in those fourteen days, I made a series of calls to M. D. Anderson and played phone-tag for a few weeks, never getting any information about my lab tests. I was getting worried.
Meanwhile, a long-scheduled appointment with my local oncologist came up so I saw him and explained how things were going. We also talked over some possible options for treating my disease and then he said he’d call Houston and get the information for me. I was grateful, as I really wanted to hear the results of the cytogenetics.
Later that day I got a call from my local doc. He had heard from Houston. He had news, but the news was just horrible. He talked for a while but all I remember was something like “…blah, blah, blah…p53 mutation…blah, blah…Arzerra…blah, blah…50% chance of it working.”
What this means
When I got sick with this disease, chronic lymphocytic leukemia, almost ten years ago, it was only “one” disease. The doctors and researchers working with it knew that some folks with this disease died in two or three years while some folks lived, without needing treatment, for maybe twenty years or more. They knew that some patients responded well to treatments while others didn’t. They just didn’t know why. But about eight years ago they found that CLL is actually a group of diseases, differentiated by the chromosomes in the leukemia cells and several other protein “markers” exhibited by the disease. There are at least seven or eight major sub-groups of CLL and perhaps more, and survival and resistance to treatment varies greatly among the groups. By looking at the mutations of the chromosomes in your cells physicians can tell how long you’ll likely survive and what treatments might work best for you, and also how aggressive they should be with trying to treat your disease.
A couple of years after I got sick, they tested my chromosomes. They were 46XY, normal male chromosomes, as you’ll no doubt remember from your high school biology course. That was very good, as normal chromosomes were a marker of easier to treat disease and generally longer survival. Curiously, however, there is one mutation called 13q- (13q deletion) which is even better than normal chromosomes in terms of survival. But there are also several possible mutations of the disease that indicate a more aggressive and harder to treat disease. These can be ranked in order of increasing resistance to treatment and subsequently, shorter survival. And since patients with CLL tend to mutate to harder to treat forms of the disease over time, my doc in Houston was retesting my disease to see if I had mutated. And the tests in July at M. D. Anderson now showed that I had the p53 mutation, also called the 17p deletion (17p-), one of the very worst of the several variations.
Details
I’ll include a short description of what this genetic shorthand means for my friend Steve who lives in either Englewood, Colorado, or Centennial, Colorado, or maybe unincorporated Arapahoe County (I don’t remember which for sure), in the Denver suburbs. He likes details. Anyway, normally we all have 46 chromosomes per cell, 22 pairs of “somatic” chromosomes plus our sex chromosomes, the XX for females and XY for the guys. The other 22 pairs are numbered 1 though 22. Also, if you remember looking at pictures of chromosomes in textbooks, they look rather like stretched out X shaped figures, usually arranged with shorter arms at the top and longer arms at the bottom.
(By the way, our chromosomes don’t just stretch out and pose for the pictures that we see in books and magazines; they have to be manipulated with various chemicals to make them look this way. Normally they’re all balled up in a tangled mass in our cells’ nuclei.)
The short arms at the top of the chromosomes are called the “p” arms; the longer ones at the bottom are the “q” arms. If you took a part of the “q” arm off a 21 chromosome, it would be called a deletion and written as 21q-. Sometimes extraneous genetic material gets added onto chromosomes. These are additions, written as 21p+, for example.
The p53 mutation
So, now I have the dreaded p53 mutation, also called the 17p- mutation, the 17p deletion. Over the last few years my disease had changed, which is what it typically does for most patients with CLL. p53 is a gene, the “tumor suppressor gene,” which normally resides on the short, “p” arm of the 17 chromosome. Now it’s not there; in my case; it’s been “deleted” somehow. This is a very important gene which, as its name suggests, suppresses tumor growth and malignancy formation. Now I don’t have it anymore. When you read about the p53 mutation in CLL you see things like, “much more difficult to treat,” and “more aggressive disease” and “average survival of about 13-15 months.” Our friend Larry Love recently died here in Denton. Larry had an extremely rare case of metastatic basal cell skin cancer. Basal cell cancers are generally among most easily treated of all skin cancers yet in Larry’s case, this usually innocuous skin cancer spread throughout his body and despite three years of treatments, he died because the disease could not be controlled. Larry’s skin cancer had the p53 mutation. The p53 mutation is not good news.
Arzerra
This is the drug my doc picked to treat my disease this time around. Now, if you’ve been reading my stuff for any length of time at all, you’ve read about Rituxan, which has been a part of my three different previous chemotherapy regimens. Rituxan (rituximab) is a mouse-based antibody against leukemia cells. It targets a specific protein (called the CD20 receptor) that all CLL cells have. It works extremely well at doing this. The only problem is that being mouse-based (or “murine”), it itself is a foreign protein and humans can form antibodies against these murine antibodies, inactivating them.
Arzerra (ofatumumab) is similar to Rituxan in that it is also an antibody which attacks the CD20 protein receptor. It has been around in Europe for a few years but has only been approved for use in the US for about 18 months. In Europe it is called HuMax, which reflects the interesting fact that it is a humanized antibody against the CD20 site. In theory at least, it should be better for attacking the leukemia cells since humans shouldn’t create antibodies against it. In addition, it binds more tightly and for a longer time to the leukemic cells than does Rituxan, if you believe the manufacturer.
Interestingly, when reading the prescribing information that comes with this drug, the manufacturer states that it will not cure, put into remission or reduce the symptoms of any patient with CLL. This is an amazing thing to put in writing. It must either be something required by the FDA or perhaps it’s just their lawyers lowering expectations. Otherwise, it would be no more than a placebo drug!
I was very disappointed, at first, to be prescribed single-agent therapy with the Arzerra. My disease is now much more aggressive, yet I was being given a drug that would be very unlikely to put me back into remission. Studies of the drug in patients with my mutation showed only about a 50% rate of successful treatment. From the very beginning of my adventure I have wanted to be as aggressive as possible in treating the disease. Here it looked to me as if we weren’t doing as much as we could. I had found, on-line, several studies of Arzerra being used in combination with other drugs with apparent good success in short term studies. I wanted to use lots of drugs. I wanted to kill the leukemia. I want to rid my body of it. That’s always been my goal.
But in the larger picture, moderation may be better in treating my disease. Yes, it’s much more aggressive now. Yes, my survival seems to have been shortened by the mutation. Yes, it’s harder to treat. But, there are several, and I mean several as in four to six or so new therapies which are just over the horizon and at least some of these depend on a patient’s functioning immune system to be effective. In the past my chemotherapy regimens have included the use of several toxic medications which have vigorously attacked my disease with a “chemical machete,” clear-cutting my marrow, taking away good cells as well as bad, severely damaging my immunity. The use of these drugs now could jeopardize my ability to use some of the newer therapies which are still in the study phase and just on the verge of being more widely available. Three of these are in pill form and are taken daily, at home, much like the vaunted drug Gleevac, which has shown such remarkable success in treating (but not curing) another form of leukemia known as chronic myelogenous leukemia (CML). And there are studies using gene therapy to train one’s own T-lymphocytes (a topic for another day) to attack and kill the leukemia cells. This therapy has reportedly “cured” two people in a study recently released by the Abramson Cancer Center in Philadelphia, though the follow-up was a short ten months. And if nothing else works, there is a stem cell transplant, which is the ultimate treatment for my form of CLL with the p53 mutation. With the p53 mutation, some docs reportedly give you one course of chemotherapy and if you fail go directly to transplant. The problem is that there is somewhere between a 10% and 25% mortality (death) rate with stem cell transplants. You don’t go into them lightly. But, they are said to give “durable remissions” in patients with the p53 mutation. Notice that the word “cure” wasn’t used. It rarely is.
Anyway, I’ve been through “Phase One” of the Arzerra treatments and the short story is that it has worked well, dropping my white count from 80,000 to about 4,000 (normal) in just eight weekly treatments, with minimal side effects. “Phase Two” starts later this month. I’ll leave the details of all this for the next update, since this has gotten long enough. And I hope to have it to you before another six months goes by.
Dave
I read these words in a USA Today recently, while sitting in a chair in the waiting room of the Leukemia Clinic at M. D. Anderson.
“Have you come to the Red Sea place in life,
Where, in spite of all you can do,
There is no way out, there is no way back,
There is no other way but through?”
---Annie Johnson Flint
www.adventureswithleukemia.blogspot.com
Book 4, Chapter 1, Verse 5
November 2, 2011
I didn’t expect this. I was doing so well. I felt good and was getting along just fine. I mean, I had done all those half-marathons, right? How could I be this sick?
We had a busy spring and early summer. My disease, which had relapsed the previous year, had been advancing faster with my white counts doubling every couple of months or so. I was expecting to have to do more chemotherapy by about mid-summer, so we packed our travel plans into the early part of the summer. We went to Oklahoma City for a marathon (in the rain and cold) in May, went to San Diego for one there in June. We went to a reunion of my Vietnam vet buddies in Tampa in late June, to a family reunion in North Carolina in July, and more. In the midst of all these trips we went to Houston in early July to see my doc there, who is one of the world’s foremost gurus in the management of chronic lymphocytic leukemia.
I was still feeling well; maybe a little more tired than I’d care to admit, but over all, I was doing okay except that my lab tests told another story. My disease was advancing rapidly. I talked things over with my doc, Dr. Michael Keating, and we went over some possible treatments. I say “possible,” because after you’ve been treated for this disease once or twice, there are no standard “best” treatments anymore, just lots of possibilities.
But he wanted to do a few more cytogenetic (chromosome) tests before we started anything, to help guide us to, hopefully, the best of our options. He said I’d hear something about the test results “in a couple of weeks.”
Now, to me, “a couple of weeks” mean exactly fourteen days. When I didn’t hear anything in those fourteen days, I made a series of calls to M. D. Anderson and played phone-tag for a few weeks, never getting any information about my lab tests. I was getting worried.
Meanwhile, a long-scheduled appointment with my local oncologist came up so I saw him and explained how things were going. We also talked over some possible options for treating my disease and then he said he’d call Houston and get the information for me. I was grateful, as I really wanted to hear the results of the cytogenetics.
Later that day I got a call from my local doc. He had heard from Houston. He had news, but the news was just horrible. He talked for a while but all I remember was something like “…blah, blah, blah…p53 mutation…blah, blah…Arzerra…blah, blah…50% chance of it working.”
What this means
When I got sick with this disease, chronic lymphocytic leukemia, almost ten years ago, it was only “one” disease. The doctors and researchers working with it knew that some folks with this disease died in two or three years while some folks lived, without needing treatment, for maybe twenty years or more. They knew that some patients responded well to treatments while others didn’t. They just didn’t know why. But about eight years ago they found that CLL is actually a group of diseases, differentiated by the chromosomes in the leukemia cells and several other protein “markers” exhibited by the disease. There are at least seven or eight major sub-groups of CLL and perhaps more, and survival and resistance to treatment varies greatly among the groups. By looking at the mutations of the chromosomes in your cells physicians can tell how long you’ll likely survive and what treatments might work best for you, and also how aggressive they should be with trying to treat your disease.
A couple of years after I got sick, they tested my chromosomes. They were 46XY, normal male chromosomes, as you’ll no doubt remember from your high school biology course. That was very good, as normal chromosomes were a marker of easier to treat disease and generally longer survival. Curiously, however, there is one mutation called 13q- (13q deletion) which is even better than normal chromosomes in terms of survival. But there are also several possible mutations of the disease that indicate a more aggressive and harder to treat disease. These can be ranked in order of increasing resistance to treatment and subsequently, shorter survival. And since patients with CLL tend to mutate to harder to treat forms of the disease over time, my doc in Houston was retesting my disease to see if I had mutated. And the tests in July at M. D. Anderson now showed that I had the p53 mutation, also called the 17p deletion (17p-), one of the very worst of the several variations.
Details
I’ll include a short description of what this genetic shorthand means for my friend Steve who lives in either Englewood, Colorado, or Centennial, Colorado, or maybe unincorporated Arapahoe County (I don’t remember which for sure), in the Denver suburbs. He likes details. Anyway, normally we all have 46 chromosomes per cell, 22 pairs of “somatic” chromosomes plus our sex chromosomes, the XX for females and XY for the guys. The other 22 pairs are numbered 1 though 22. Also, if you remember looking at pictures of chromosomes in textbooks, they look rather like stretched out X shaped figures, usually arranged with shorter arms at the top and longer arms at the bottom.
(By the way, our chromosomes don’t just stretch out and pose for the pictures that we see in books and magazines; they have to be manipulated with various chemicals to make them look this way. Normally they’re all balled up in a tangled mass in our cells’ nuclei.)
The short arms at the top of the chromosomes are called the “p” arms; the longer ones at the bottom are the “q” arms. If you took a part of the “q” arm off a 21 chromosome, it would be called a deletion and written as 21q-. Sometimes extraneous genetic material gets added onto chromosomes. These are additions, written as 21p+, for example.
The p53 mutation
So, now I have the dreaded p53 mutation, also called the 17p- mutation, the 17p deletion. Over the last few years my disease had changed, which is what it typically does for most patients with CLL. p53 is a gene, the “tumor suppressor gene,” which normally resides on the short, “p” arm of the 17 chromosome. Now it’s not there; in my case; it’s been “deleted” somehow. This is a very important gene which, as its name suggests, suppresses tumor growth and malignancy formation. Now I don’t have it anymore. When you read about the p53 mutation in CLL you see things like, “much more difficult to treat,” and “more aggressive disease” and “average survival of about 13-15 months.” Our friend Larry Love recently died here in Denton. Larry had an extremely rare case of metastatic basal cell skin cancer. Basal cell cancers are generally among most easily treated of all skin cancers yet in Larry’s case, this usually innocuous skin cancer spread throughout his body and despite three years of treatments, he died because the disease could not be controlled. Larry’s skin cancer had the p53 mutation. The p53 mutation is not good news.
Arzerra
This is the drug my doc picked to treat my disease this time around. Now, if you’ve been reading my stuff for any length of time at all, you’ve read about Rituxan, which has been a part of my three different previous chemotherapy regimens. Rituxan (rituximab) is a mouse-based antibody against leukemia cells. It targets a specific protein (called the CD20 receptor) that all CLL cells have. It works extremely well at doing this. The only problem is that being mouse-based (or “murine”), it itself is a foreign protein and humans can form antibodies against these murine antibodies, inactivating them.
Arzerra (ofatumumab) is similar to Rituxan in that it is also an antibody which attacks the CD20 protein receptor. It has been around in Europe for a few years but has only been approved for use in the US for about 18 months. In Europe it is called HuMax, which reflects the interesting fact that it is a humanized antibody against the CD20 site. In theory at least, it should be better for attacking the leukemia cells since humans shouldn’t create antibodies against it. In addition, it binds more tightly and for a longer time to the leukemic cells than does Rituxan, if you believe the manufacturer.
Interestingly, when reading the prescribing information that comes with this drug, the manufacturer states that it will not cure, put into remission or reduce the symptoms of any patient with CLL. This is an amazing thing to put in writing. It must either be something required by the FDA or perhaps it’s just their lawyers lowering expectations. Otherwise, it would be no more than a placebo drug!
I was very disappointed, at first, to be prescribed single-agent therapy with the Arzerra. My disease is now much more aggressive, yet I was being given a drug that would be very unlikely to put me back into remission. Studies of the drug in patients with my mutation showed only about a 50% rate of successful treatment. From the very beginning of my adventure I have wanted to be as aggressive as possible in treating the disease. Here it looked to me as if we weren’t doing as much as we could. I had found, on-line, several studies of Arzerra being used in combination with other drugs with apparent good success in short term studies. I wanted to use lots of drugs. I wanted to kill the leukemia. I want to rid my body of it. That’s always been my goal.
But in the larger picture, moderation may be better in treating my disease. Yes, it’s much more aggressive now. Yes, my survival seems to have been shortened by the mutation. Yes, it’s harder to treat. But, there are several, and I mean several as in four to six or so new therapies which are just over the horizon and at least some of these depend on a patient’s functioning immune system to be effective. In the past my chemotherapy regimens have included the use of several toxic medications which have vigorously attacked my disease with a “chemical machete,” clear-cutting my marrow, taking away good cells as well as bad, severely damaging my immunity. The use of these drugs now could jeopardize my ability to use some of the newer therapies which are still in the study phase and just on the verge of being more widely available. Three of these are in pill form and are taken daily, at home, much like the vaunted drug Gleevac, which has shown such remarkable success in treating (but not curing) another form of leukemia known as chronic myelogenous leukemia (CML). And there are studies using gene therapy to train one’s own T-lymphocytes (a topic for another day) to attack and kill the leukemia cells. This therapy has reportedly “cured” two people in a study recently released by the Abramson Cancer Center in Philadelphia, though the follow-up was a short ten months. And if nothing else works, there is a stem cell transplant, which is the ultimate treatment for my form of CLL with the p53 mutation. With the p53 mutation, some docs reportedly give you one course of chemotherapy and if you fail go directly to transplant. The problem is that there is somewhere between a 10% and 25% mortality (death) rate with stem cell transplants. You don’t go into them lightly. But, they are said to give “durable remissions” in patients with the p53 mutation. Notice that the word “cure” wasn’t used. It rarely is.
Anyway, I’ve been through “Phase One” of the Arzerra treatments and the short story is that it has worked well, dropping my white count from 80,000 to about 4,000 (normal) in just eight weekly treatments, with minimal side effects. “Phase Two” starts later this month. I’ll leave the details of all this for the next update, since this has gotten long enough. And I hope to have it to you before another six months goes by.
Dave
I read these words in a USA Today recently, while sitting in a chair in the waiting room of the Leukemia Clinic at M. D. Anderson.
“Have you come to the Red Sea place in life,
Where, in spite of all you can do,
There is no way out, there is no way back,
There is no other way but through?”
---Annie Johnson Flint
www.adventureswithleukemia.blogspot.com
Sunday, May 29, 2011
It's Back!
Dave’s Great Adventure
Book 4, Chapter 1, Verse 4
May 29, 2011
“It’s back.”
When you have a malignancy of any kind, breast, colon, prostate, or whatever, and you’ve gone through a bunch of treatments with chemotherapy and surgery or radiation and all the other things that go along with these kinds of treatments, it’s a wonderful thing to be told you’re in remission. It makes all the torture and misery of the treatments worthwhile. You start to feel like things are back to normal, that you don’t need to worry about dying too soon or having to go through more treatments. But then, at some point, perhaps quite unexpectedly, you’re told, “It’s back.”
That’s probably one of the most economical ways to give really bad news. A couple of words, eight letters, that tell you the thing you’ve been fearing, that unseen disease in your body, wants to take over again. And wants to take you from everything and everyone you know.
I’ve known from the very beginning, from when I was first diagnosed with leukemia, that it was, and is, incurable. Yet, like every other person with any kind of cancer, I want to believe that I’m going to be the exception to that “incurable” rule and that I’m going to survive, I’m going to outlive this disease. After each of my courses of chemotherapy I’ve been told that I was in complete remission. I focus on the word “complete” and try to translate that into “cured.” I know, intellectually, that I’m not cured, but I want to believe that I am.
After each round of chemotherapy, after I get over the side effects and regain my strength, I start living a fairly normal life. It’s easy to forget that I have an incurable disease lurking in my body. I actually sort of forget about it, or think that it’s just been a bad dream, and that it’s not real. But at some point I get the news…
“It’s back.”
…and Kathy and I look at each other and are fairly roughly thrust back into the reality that I have an incurable, lethal disease. And we know that my future holds more treatments and that with each treatment I undergo, I have fewer and fewer options left for the “next time.”
I’ve had three different courses of chemotherapy in the last nine years. I’m very lucky, actually, that there have been these options for me as this wasn’t the case in the past. And with each course of chemotherapy, each of which was experimental, I’ve been put into a complete remission. And each time I’ve been thrilled with the news. But each time I’ve eventually heard the words, “It’s back.” It took a year the first time, eighteen months the second time.
My third course of chemotherapy was my longest and most intense, at six months long and including four different drugs. A year out from the completion of my chemotherapy I still was in complete remission. I had a bone marrow biopsy done about that time and they couldn’t any trace of the disease even with a “molecular probe.” Now, that was particularly good news as I’ve heard of folks like me who have gone through similar courses of chemotherapy and then been found to have a negative molecular probe, and some of them have been alive and free of disease many years, even a decade later. I thought that would be me, too. Later, my doc even told me that with this finding there were three chances out of four that I’d be in remission for up to ten years!
“It’s back.”
I heard those words again just days after I had been told I might be in remission for up to ten years, in a particularly cruel sequence of events. I suppose I was just that one person in four to whom the statistics were unkind. It has to happen to somebody or there wouldn’t be any odds to try to beat.
My disease actually reappeared over a year ago but I’ve felt so relatively normal during that time that I’ve continued to train with the wonderful folks from The Leukemia and Lymphoma Society’s Team In Training and, since I recovered from my last course of chemotherapy, I’ve completed eight half marathons, even as my disease slowly grew within my body. And soon, within a week, I’ll do my ninth. And then I’ll leave my training schedule behind and start another task and schedule, the schedule that our lives revolve around when I’m undergoing chemotherapy. And that schedule does, in fact, rule our lives.
I don’t know yet what that schedule will be. I have some appointments coming up in June to see my local oncologist and to get some more blood tests, but I won’t know with any certainty what the future holds until we see my doc at M. D. Anderson in Houston. I’ve gotten my appointment with him moved up to early July and that’s when we’ll hear what he thinks we should do. As one of the nation’s preeminent specialists, specifically in my form of leukemia, I have great respect for his opinions.
In the last year or so he has dropped hints about what we might consider doing if/when I relapsed. I believe he’s going to want to treat me with a combination of two new drugs, Revlimid and Hu-Max. (I won’t go into too much detail about these drugs until I know for sure that we’ll actually be using them, even though our friend Steve out in Englewood, Colorado loves technical details) but I will mention that if we use this particular combination, I’ll be taking a pill form of chemotherapy 21 days a month (the Revlimid) in combination with intermittent IV infusions of the Hu-Max, which is an artificial antibody against the leukemia cells. The course of therapy lasts up to forty weeks. Using a pill form of a drug will certainly be convenient, if we end up doing this particular protocol.
But I have to tell you, I’m as worried about the course of my disease and the side effects of the drugs as I have been in a long time. These drugs, and particularly the Revlimid, can induce some particularly nasty side effects. And the incidence of inducing complete remission really isn’t all that high. I’ve seen 9% reported in some early studies after forty weeks of treatment. And the logical question that comes to my mind is, “Well, if I’m not in complete remission after those forty weeks…well…, then what?”
But I’m getting way ahead of this. I tend to be a planner and a worrier and should learn to wait and see what actually happens, but that’s hard for me.
Since I don’t have any more details to pass on at this time I want to begin closing by thanking all of you for being so generous in helping me with my San Diego fund raising drive. I’m not looking for donations any more, as I’m well over my goal, but please take a moment to look again at my fund drive page and see what you guys did. You are all awesome. Thanks so much.
http://pages.teamintraining.org/ntxok/rnr11/deckberg
I have failed to thank each of you individually so far, but each of you WILL hear from me.
I’ll close by passing on a bit of good news. About a year and a half ago, or so, I had an echocardiogram which seemed to show that my heart was failing and that I would soon need open heart surgery to repair my mitral valve. I wondered how that could be, as I was feeling well and, in fact, had recently completed a couple of half marathons. Well, after having follow-up echocardiograms in three months, six months and then again in another six months, well…, everything is described as “stable” and there is no longer any talk of needing surgery any time soon. At least that part is doing well.
I’ll be back if there are any significant changes or after I go to Houston and find that we have a plan. Until then, thank you again for all your help with my fund drive and thanks for helping the researchers who are looking for better treatments for me and so very many people like me. As I’ve told many folks at many different meetings, my only hope of outliving this disease is for some researcher, somewhere, to find a cure in my lifetime.
Bye now,
Dave
www.adventureswithleukemia.blogspot.com
PS: After our armed forces recently “removed” the person responsible for the mass murder of 3,000 of our fellow citizens, I am reminded of the quote, usually attributed to George Orwell, which goes:
“We sleep soundly in our beds because rough men stand ready in the night to visit violence on those who would do us harm."
Please take a moment this Memorial Day to remember our fellow countrymen, these “rough men” (and women, too), the many, many thousands of them, who have died in the service of our country.
Book 4, Chapter 1, Verse 4
May 29, 2011
“It’s back.”
When you have a malignancy of any kind, breast, colon, prostate, or whatever, and you’ve gone through a bunch of treatments with chemotherapy and surgery or radiation and all the other things that go along with these kinds of treatments, it’s a wonderful thing to be told you’re in remission. It makes all the torture and misery of the treatments worthwhile. You start to feel like things are back to normal, that you don’t need to worry about dying too soon or having to go through more treatments. But then, at some point, perhaps quite unexpectedly, you’re told, “It’s back.”
That’s probably one of the most economical ways to give really bad news. A couple of words, eight letters, that tell you the thing you’ve been fearing, that unseen disease in your body, wants to take over again. And wants to take you from everything and everyone you know.
I’ve known from the very beginning, from when I was first diagnosed with leukemia, that it was, and is, incurable. Yet, like every other person with any kind of cancer, I want to believe that I’m going to be the exception to that “incurable” rule and that I’m going to survive, I’m going to outlive this disease. After each of my courses of chemotherapy I’ve been told that I was in complete remission. I focus on the word “complete” and try to translate that into “cured.” I know, intellectually, that I’m not cured, but I want to believe that I am.
After each round of chemotherapy, after I get over the side effects and regain my strength, I start living a fairly normal life. It’s easy to forget that I have an incurable disease lurking in my body. I actually sort of forget about it, or think that it’s just been a bad dream, and that it’s not real. But at some point I get the news…
“It’s back.”
…and Kathy and I look at each other and are fairly roughly thrust back into the reality that I have an incurable, lethal disease. And we know that my future holds more treatments and that with each treatment I undergo, I have fewer and fewer options left for the “next time.”
I’ve had three different courses of chemotherapy in the last nine years. I’m very lucky, actually, that there have been these options for me as this wasn’t the case in the past. And with each course of chemotherapy, each of which was experimental, I’ve been put into a complete remission. And each time I’ve been thrilled with the news. But each time I’ve eventually heard the words, “It’s back.” It took a year the first time, eighteen months the second time.
My third course of chemotherapy was my longest and most intense, at six months long and including four different drugs. A year out from the completion of my chemotherapy I still was in complete remission. I had a bone marrow biopsy done about that time and they couldn’t any trace of the disease even with a “molecular probe.” Now, that was particularly good news as I’ve heard of folks like me who have gone through similar courses of chemotherapy and then been found to have a negative molecular probe, and some of them have been alive and free of disease many years, even a decade later. I thought that would be me, too. Later, my doc even told me that with this finding there were three chances out of four that I’d be in remission for up to ten years!
“It’s back.”
I heard those words again just days after I had been told I might be in remission for up to ten years, in a particularly cruel sequence of events. I suppose I was just that one person in four to whom the statistics were unkind. It has to happen to somebody or there wouldn’t be any odds to try to beat.
My disease actually reappeared over a year ago but I’ve felt so relatively normal during that time that I’ve continued to train with the wonderful folks from The Leukemia and Lymphoma Society’s Team In Training and, since I recovered from my last course of chemotherapy, I’ve completed eight half marathons, even as my disease slowly grew within my body. And soon, within a week, I’ll do my ninth. And then I’ll leave my training schedule behind and start another task and schedule, the schedule that our lives revolve around when I’m undergoing chemotherapy. And that schedule does, in fact, rule our lives.
I don’t know yet what that schedule will be. I have some appointments coming up in June to see my local oncologist and to get some more blood tests, but I won’t know with any certainty what the future holds until we see my doc at M. D. Anderson in Houston. I’ve gotten my appointment with him moved up to early July and that’s when we’ll hear what he thinks we should do. As one of the nation’s preeminent specialists, specifically in my form of leukemia, I have great respect for his opinions.
In the last year or so he has dropped hints about what we might consider doing if/when I relapsed. I believe he’s going to want to treat me with a combination of two new drugs, Revlimid and Hu-Max. (I won’t go into too much detail about these drugs until I know for sure that we’ll actually be using them, even though our friend Steve out in Englewood, Colorado loves technical details) but I will mention that if we use this particular combination, I’ll be taking a pill form of chemotherapy 21 days a month (the Revlimid) in combination with intermittent IV infusions of the Hu-Max, which is an artificial antibody against the leukemia cells. The course of therapy lasts up to forty weeks. Using a pill form of a drug will certainly be convenient, if we end up doing this particular protocol.
But I have to tell you, I’m as worried about the course of my disease and the side effects of the drugs as I have been in a long time. These drugs, and particularly the Revlimid, can induce some particularly nasty side effects. And the incidence of inducing complete remission really isn’t all that high. I’ve seen 9% reported in some early studies after forty weeks of treatment. And the logical question that comes to my mind is, “Well, if I’m not in complete remission after those forty weeks…well…, then what?”
But I’m getting way ahead of this. I tend to be a planner and a worrier and should learn to wait and see what actually happens, but that’s hard for me.
Since I don’t have any more details to pass on at this time I want to begin closing by thanking all of you for being so generous in helping me with my San Diego fund raising drive. I’m not looking for donations any more, as I’m well over my goal, but please take a moment to look again at my fund drive page and see what you guys did. You are all awesome. Thanks so much.
http://pages.teamintraining.org/ntxok/rnr11/deckberg
I have failed to thank each of you individually so far, but each of you WILL hear from me.
I’ll close by passing on a bit of good news. About a year and a half ago, or so, I had an echocardiogram which seemed to show that my heart was failing and that I would soon need open heart surgery to repair my mitral valve. I wondered how that could be, as I was feeling well and, in fact, had recently completed a couple of half marathons. Well, after having follow-up echocardiograms in three months, six months and then again in another six months, well…, everything is described as “stable” and there is no longer any talk of needing surgery any time soon. At least that part is doing well.
I’ll be back if there are any significant changes or after I go to Houston and find that we have a plan. Until then, thank you again for all your help with my fund drive and thanks for helping the researchers who are looking for better treatments for me and so very many people like me. As I’ve told many folks at many different meetings, my only hope of outliving this disease is for some researcher, somewhere, to find a cure in my lifetime.
Bye now,
Dave
www.adventureswithleukemia.blogspot.com
PS: After our armed forces recently “removed” the person responsible for the mass murder of 3,000 of our fellow citizens, I am reminded of the quote, usually attributed to George Orwell, which goes:
“We sleep soundly in our beds because rough men stand ready in the night to visit violence on those who would do us harm."
Please take a moment this Memorial Day to remember our fellow countrymen, these “rough men” (and women, too), the many, many thousands of them, who have died in the service of our country.
Thursday, May 19, 2011
Dave's Great Adventure Returns
Dave's Great Adventure
Book 4, Chapter 1, Verse 3
I know it's been a long time since I've sent out an update to Dave's Great Adventure, to the great relief of many of you, I'm sure. But unfortunately I'm going to have to resurrect this long-running drama in the very near future as things are starting to change more rapidly than I'd hoped. More of "Book Four" looms in front of me.
Now, I have tried to get some updates out in the past 18 months or so, and have actually started composing a few but I just couldn't finish them. It wasn't that there was nothing to report, as many things of some import have happened, but the basis of the DGA series, my leukemia, though relapsing, was doing so very slowly and undramatically...until this week. So I'll have to get things going again, in many ways.
What has happened is that my white blood cell counts have more than doubled over the last three months. Typically, if a leukemia patient's white blood cell counts double in six months to a year, that's considered worrisome. My counts did so in a far shorter time. That may indicate a return of a more aggressive disease. We shall see. I am awaiting some calls from my doctors as to what we're going to be doing and when we might do it. I presume Kathy and I will be traveling back to Houston, to the M. D. Anderson Cancer Center and I suspect that more chemotherapy of some type will happen much sooner than later.
But that's not the immediate reason I've gotten in contact with you again. I don't have enough details on what's going to happen to really fill you in. What I really need from you right now is your assistance, if you can me reach a goal I need to reach very soon.
During my current remission I have been fortunate to be able to participate in the Leukemia and Lymphoma Society's Team In Training. Most of you know that I have gotten involved in several endurance events, which I'm very pleased to say I have been able to complete. In the last two years since I completed my most recent chemotherapy treatments, I have finished eight half marathon events. I find that quite amazing, as before I had chemotherapy, I had never done even one, and never thought I'd ever do even one. Many of you have helped me out with some fundraising which I've done in connection with a few of these events, as well.
I am going to try to complete ONE MORE half marathon before I start any therapy and am scheduled to participate in the Rock and Roll Marathon event in San Diego in just over three weeks. I have pledged to raise some more funds for the LLS and have just until May 24th to do so. I haven't been very aggressive in my fund raising this time as I have asked some of you for your help several times over the last few years, so I'm a bit late in getting this going (though I have reached out to some of you, and many of you have already helped out; thanks for your help!).
But, if you're able to do so, I would greatly appreciate your taking the time to read my story at the link below:
http://pages.teamintraining.org/ntxok/rnr11/deckberg
If you're able to make a donation to my fund drive, I'd be very grateful as well. This will be MY LAST fund raising event for quite some time, as I fully expect to be under treatment again before the end of the summer. That's going to put a stop to my distance event training.
As I find out what's awaiting me on the treatment front, I'll be back in touch with an update that doesn't include a request for a donation. I should know something fairly soon.
Thanks for any help you're able to provide. Any funds I collect on behalf of the Leukemia and Lymphoma Society will go to help patients with these diseases and to further research in to finding cure. I personally appreciate what you have done for me and so many folks like me in the past.
I'll be back soon with an update as to what sort of experimental chemotherapy I'll be doing this time. I know it'll have to be something experimental, as there is no standard therapy for someone like me who has now relapsed three times after being treated for chronic lymphocytic leukemia. Wish me luck! Prayers are appreciated as well.
Bye for now. I'll be back again soon.
Dave
Book 4, Chapter 1, Verse 3
I know it's been a long time since I've sent out an update to Dave's Great Adventure, to the great relief of many of you, I'm sure. But unfortunately I'm going to have to resurrect this long-running drama in the very near future as things are starting to change more rapidly than I'd hoped. More of "Book Four" looms in front of me.
Now, I have tried to get some updates out in the past 18 months or so, and have actually started composing a few but I just couldn't finish them. It wasn't that there was nothing to report, as many things of some import have happened, but the basis of the DGA series, my leukemia, though relapsing, was doing so very slowly and undramatically...until this week. So I'll have to get things going again, in many ways.
What has happened is that my white blood cell counts have more than doubled over the last three months. Typically, if a leukemia patient's white blood cell counts double in six months to a year, that's considered worrisome. My counts did so in a far shorter time. That may indicate a return of a more aggressive disease. We shall see. I am awaiting some calls from my doctors as to what we're going to be doing and when we might do it. I presume Kathy and I will be traveling back to Houston, to the M. D. Anderson Cancer Center and I suspect that more chemotherapy of some type will happen much sooner than later.
But that's not the immediate reason I've gotten in contact with you again. I don't have enough details on what's going to happen to really fill you in. What I really need from you right now is your assistance, if you can me reach a goal I need to reach very soon.
During my current remission I have been fortunate to be able to participate in the Leukemia and Lymphoma Society's Team In Training. Most of you know that I have gotten involved in several endurance events, which I'm very pleased to say I have been able to complete. In the last two years since I completed my most recent chemotherapy treatments, I have finished eight half marathon events. I find that quite amazing, as before I had chemotherapy, I had never done even one, and never thought I'd ever do even one. Many of you have helped me out with some fundraising which I've done in connection with a few of these events, as well.
I am going to try to complete ONE MORE half marathon before I start any therapy and am scheduled to participate in the Rock and Roll Marathon event in San Diego in just over three weeks. I have pledged to raise some more funds for the LLS and have just until May 24th to do so. I haven't been very aggressive in my fund raising this time as I have asked some of you for your help several times over the last few years, so I'm a bit late in getting this going (though I have reached out to some of you, and many of you have already helped out; thanks for your help!).
But, if you're able to do so, I would greatly appreciate your taking the time to read my story at the link below:
http://pages.teamintraining.org/ntxok/rnr11/deckberg
If you're able to make a donation to my fund drive, I'd be very grateful as well. This will be MY LAST fund raising event for quite some time, as I fully expect to be under treatment again before the end of the summer. That's going to put a stop to my distance event training.
As I find out what's awaiting me on the treatment front, I'll be back in touch with an update that doesn't include a request for a donation. I should know something fairly soon.
Thanks for any help you're able to provide. Any funds I collect on behalf of the Leukemia and Lymphoma Society will go to help patients with these diseases and to further research in to finding cure. I personally appreciate what you have done for me and so many folks like me in the past.
I'll be back soon with an update as to what sort of experimental chemotherapy I'll be doing this time. I know it'll have to be something experimental, as there is no standard therapy for someone like me who has now relapsed three times after being treated for chronic lymphocytic leukemia. Wish me luck! Prayers are appreciated as well.
Bye for now. I'll be back again soon.
Dave
Wednesday, July 21, 2010
What's Next? And Parking Issues Too!
Dave’s Great Adventure
Book Four, Chapter 1, Verse 2
I have often been asked in the last few months, “What are you doing now that your leukemia has relapsed?” Folks wonder if I’m on chemotherapy again, or taking some kind of pills to hold the disease off, or what. These are fair questions, as it would seem logical that now that my disease has come back yet again, we should be doing something.
In fact, we are doing nothing. At least, next to nothing. We are just doing blood tests periodically, about every two months, to see how fast my disease is coming back. This is called the “Watch and Wait” method and it’s used a lot in the management of chronic lymphocytic leukemia (CLL).
Now, if I had breast cancer or prostate cancer or some other solid tumor kind of cancer, the reappearance of the disease would spark an immediate plan to once again attack the disease with chemotherapy or radiation or something, in an attempt to destroy as much of the disease as possible before it had a chance to grow any more than it had already. With most solid tumors, the bigger the tumor, the harder it is to treat.
But my cancer is not a solid tumor, it’s a blood cancer. And the leukemia cells flowing in my bloodstream aren’t actually hurting me at all. That doesn’t sound possible, but it’s true. They are just abnormal white cells, lymphocytes, and all they’re doing is flowing around in my blood, not dying on time like they’re supposed to, and slowly increasing in numbers. But they aren’t really hurting anything. What will kill me is when enough of them accumulate in my bone marrow to prevent the formation of normal red and white blood cells and platelets.
So why don’t we treat my disease now, while there isn’t much of it around? That, too, is a great question. We could do that, but the treatments have their own risks, like damaging my immune system, causing lowered numbers of platelets in my blood, and in general, causing damage around the body. And since we can’t, apparently, cure the disease with the therapies we have been using, but can only knock the disease back a bit, it makes sense not to expose me to any more chemotherapy than I need to be exposed to. So, we wait until my leukemia again gets “bad” enough to need treatment.
And when is that? Another great question. It’s not completely arbitrary, but could be thought to be so. Basically, we will probably start treatments again when my white blood cell counts get to about 100,000, like they were in late 2007. Or if my platelet counts get too low, or if I start having lots of symptoms, large lymph nodes, night sweats or a host of other things. After my second round of chemotherapy I relapsed in about 18 months but didn’t need to be treated for two more years after the onset of the relapse. Five months have now elapsed since I found out I was relapsing yet again.
Let me digress just a bit and talk about my disease, chronic lymphocytic leukemia. Some folks used to call this disease the “good” leukemia, because it didn’t kill you as fast as many other leukemias out there, some of which can result in death in six months or so. In contrast, some folks with CLL live relatively normal lives for decades, never needing treatments, having what is called the “smoldering” CLL. But then there were the folks with CLL who died in a few years. Why should some folks die in a few years, like my dad who died in about five years, yet other folks live with their disease twenty years or more?
Well, when I got sick back in 2002, they didn’t know that CLL is actually a family of diseases, with at least seven or eight sub-types, and your survival depends in large part on which sub-group you belong to. The sub-types, which were discovered in about 2003, depend mostly on your blood’s chromosome types, as there are several common mutations found in patients with CLL. Some mutations are “good,” in terms of your survival, as you won’t die as quickly as some others. Some are very bad, and the disease in these circumstances progresses rapidly and is more resistant to treatments.
My chromosomes are normal, the usual 46XY that all normal males have. You’d think that normal chromosomes would be the “best” to have when you have a disease, but curiously, though normal chromosomes are one of the better types to have, they aren’t the best to have. There is a certain mutation of the chromosomes that is actually better in terms of longevity than normal chromosomes.
And there’s more. Long time readers of this never-ending story may remember that I’ve mentioned several “disease markers” that have been discovered in the years since I got sick. These markers also help predict how bad your disease will be. Some are good to have; some are bad. There’s the zeta associated protein, or ZAP-70 test. Having it is bad; my test is negative for ZAP-70, which is good. Then there’s the CD-38 antigen test, the higher the level the worse the disease tends to be. My levels are a bit high, not good. And there’s the beta-microglobulin test. Low levels are good; mine are slightly elevated. And there’s the antibody mutation; the IgVh test, which is, curiously, good when it’s mutated and bad when it’s not. Mine is mutated, which is good. So overall my disease markers are mixed.
The researchers have found that by measuring all your “markers” they can predict how aggressive your disease will be. The worse the markers are, the more aggressive your doctors will tend to be, both in terms of earlier treatments and strength of chemotherapy, since they know the disease will advance more rapidly.
So the reason for this lengthy explanation of disease markers and such is to help explain why I’m not being treated right now. My markers are not all bad. Indeed some, like the IgVh mutation, are considered very good. So even though my disease has relapsed and is slowly getting worse, my docs are fairly confident that we can safely wait at least a few more months before we begin treatments again as long as my white blood cell counts don’t go up too fast. But before all these markers were discovered, all they had to go by was a patient’s white blood cell count, lymph node sizes and symptoms.
In the meantime I have continued to work with the Leukemia and Lymphoma Society, hanging around with members of their Team In Training. I have been one of their Honored Heroes (as they call members who have or who have had leukemia or lymphoma) for a few years now, but after I recovered from my last chemotherapy I got more active in their programs. I started walking farther and farther with them, finally working up to doing a half marathon in May of last year. And since that time, I have finished five half marathons, all within the last fourteen months! Many of you have helped me do some fundraising for several of these events. I just completed my last half marathon in early June when I went to San Diego for a fantastic event with an incredible 30,000 runners doing either the half or full marathons. (The crowd was so large that, though the starting gun went off at 6:15 AM, I didn’t cross the START line until 7:05. I was toward the back of the crowd as it slowly shuffled toward the start.).
Anyway, all that talk about doing multiple half marathons makes my next bit of news hard to believe. I had just finished my fourth half marathon in May and was preparing for another in San Diego in early June when I had a follow up appointment with my cardiologist. I’ve been seeing a cardiologist regularly since I had an echo cardiogram done back in 2004, at which time they found my mitral heart valve was apparently deteriorating (see October 7, 2004 of my Adventures With Leukemia blog, link below, for the details). It was initially thought to be bad enough that I might need surgery soon. But subsequent testing showed it wasn’t quite so bad. Moderately bad, perhaps, but not seriously bad.
So I get my heart checked every six to twelve months. When I saw my doc in late May I told him I felt like I was doing, overall, better than I had in a while. Though I quickly get short of breath if I try to run, I can walk long distances without too much difficulty. So he ordered a routine echo cardiograph (an ultrasound of the heart). Now, usually, after he looks at the echo cardiogram, he says something like, “Looks good, see you in six months.” But, this time he said, “Hmm, let’s go in the other room and talk.” I didn’t like hearing that.
It turns out that my mitral valve is indeed deteriorating now, and it may be that I really am getting to the point that I need open heart surgery. That’s just so hard to believe, since I feel so relatively normal, frequent fatigue notwithstanding. But things have changed since my mother had her mitral valve replaced twelve years ago. First, they now try to repair the valve rather than replacing it. That’s wonderful when they can do that as then you don’t have a metal valve in your heart and don’t need to take a lifetime’s worth of blood thinners. Secondly, they now try to do any needed surgery before you absolutely “need” to have it done, as you’ll be healthier and the outcomes are generally better. So, they won’t want to wait until I’m in heart failure and sick from my cardiac disease before they do the surgery. The issue, then, is when am I about to go into heart failure and “need” the surgery? There’s a certain amount of guesswork involved in this and if any surgery needs to be done in the next year to eighteen months or so, it needs to be coordinated around my next chemotherapy. And when will that be? Well, we don’t know that either.
So, what will happen with both of these issues is that we’ll follow them and see what I need to do first. If it’s the chemotherapy, I’ll have to hope that my heart doesn’t get much worse during the months of chemo, because the cardiac surgeons won’t touch me if I’m doing chemotherapy. But if my heart does get worse during chemo, then we may miss the window of opportunity to have the surgery done before I go into heart failure. If I need the heart surgery first, I’ll have to hope the leukemia doesn’t relapse too fast and cause me to need chemotherapy while I’m recovering, as that really could impact my recovery. Anyone know a good fortune teller?
Anyway, while we’re waiting to see what happens, I’ve signed up for two more half marathons, one in Denver in October and another in Dallas in December. We’ll see if I actually get to compete in these events.
Let me end with some good news. Crazy news, actually. As I’ve already told some of you, whenever I see a charity or some other worthwhile organization selling raffle tickets, I buy a few. I have bought raffle tickets for trips to Germany, for handmade quilts, for vacation packages, for meals at fancy restaurants and so forth. I never win anything and that’s okay. I just feel like I’m supporting the charities with my raffle ticket purchases and I don’t mind doing so. So when the Ft. Worth Symphony Orchestra had a raffle recently I bought some tickets. I already support them as a season ticket holder and as a donor anyway, so why not buy some raffle tickets?
Well, on July 6th I got a call from the president of the Symphony. I wondered if I was behind in my pledge for the year or something. But, no! She called saying she had good news. At the annual 4th of July concert in the botanical gardens in Ft. Worth, they had drawn the name of the winner of the raffle, and the winner was me! And so, what did I win, you ask? I won a completely restored 1968 Cadillac convertible, black paint with black leather interior, chrome wheels and “power everything”. This thing is huge! It’s about 18 to 19 feet long and has a 7.7 liter V-8 engine that puts out about 340 horsepower. Now, that’s all well and good, but I have no place to put it. I’m currently looking around for a place to park it, as we only have a two car garage and we already have two cars. We can’t generally park cars on our driveways around here (home owners’ association rules, of course). So, it’s going to be interesting. Fun, but interesting.
And that’s all for this update. But there’s always more.
Dave
Book Four, Chapter 1, Verse 2
I have often been asked in the last few months, “What are you doing now that your leukemia has relapsed?” Folks wonder if I’m on chemotherapy again, or taking some kind of pills to hold the disease off, or what. These are fair questions, as it would seem logical that now that my disease has come back yet again, we should be doing something.
In fact, we are doing nothing. At least, next to nothing. We are just doing blood tests periodically, about every two months, to see how fast my disease is coming back. This is called the “Watch and Wait” method and it’s used a lot in the management of chronic lymphocytic leukemia (CLL).
Now, if I had breast cancer or prostate cancer or some other solid tumor kind of cancer, the reappearance of the disease would spark an immediate plan to once again attack the disease with chemotherapy or radiation or something, in an attempt to destroy as much of the disease as possible before it had a chance to grow any more than it had already. With most solid tumors, the bigger the tumor, the harder it is to treat.
But my cancer is not a solid tumor, it’s a blood cancer. And the leukemia cells flowing in my bloodstream aren’t actually hurting me at all. That doesn’t sound possible, but it’s true. They are just abnormal white cells, lymphocytes, and all they’re doing is flowing around in my blood, not dying on time like they’re supposed to, and slowly increasing in numbers. But they aren’t really hurting anything. What will kill me is when enough of them accumulate in my bone marrow to prevent the formation of normal red and white blood cells and platelets.
So why don’t we treat my disease now, while there isn’t much of it around? That, too, is a great question. We could do that, but the treatments have their own risks, like damaging my immune system, causing lowered numbers of platelets in my blood, and in general, causing damage around the body. And since we can’t, apparently, cure the disease with the therapies we have been using, but can only knock the disease back a bit, it makes sense not to expose me to any more chemotherapy than I need to be exposed to. So, we wait until my leukemia again gets “bad” enough to need treatment.
And when is that? Another great question. It’s not completely arbitrary, but could be thought to be so. Basically, we will probably start treatments again when my white blood cell counts get to about 100,000, like they were in late 2007. Or if my platelet counts get too low, or if I start having lots of symptoms, large lymph nodes, night sweats or a host of other things. After my second round of chemotherapy I relapsed in about 18 months but didn’t need to be treated for two more years after the onset of the relapse. Five months have now elapsed since I found out I was relapsing yet again.
Let me digress just a bit and talk about my disease, chronic lymphocytic leukemia. Some folks used to call this disease the “good” leukemia, because it didn’t kill you as fast as many other leukemias out there, some of which can result in death in six months or so. In contrast, some folks with CLL live relatively normal lives for decades, never needing treatments, having what is called the “smoldering” CLL. But then there were the folks with CLL who died in a few years. Why should some folks die in a few years, like my dad who died in about five years, yet other folks live with their disease twenty years or more?
Well, when I got sick back in 2002, they didn’t know that CLL is actually a family of diseases, with at least seven or eight sub-types, and your survival depends in large part on which sub-group you belong to. The sub-types, which were discovered in about 2003, depend mostly on your blood’s chromosome types, as there are several common mutations found in patients with CLL. Some mutations are “good,” in terms of your survival, as you won’t die as quickly as some others. Some are very bad, and the disease in these circumstances progresses rapidly and is more resistant to treatments.
My chromosomes are normal, the usual 46XY that all normal males have. You’d think that normal chromosomes would be the “best” to have when you have a disease, but curiously, though normal chromosomes are one of the better types to have, they aren’t the best to have. There is a certain mutation of the chromosomes that is actually better in terms of longevity than normal chromosomes.
And there’s more. Long time readers of this never-ending story may remember that I’ve mentioned several “disease markers” that have been discovered in the years since I got sick. These markers also help predict how bad your disease will be. Some are good to have; some are bad. There’s the zeta associated protein, or ZAP-70 test. Having it is bad; my test is negative for ZAP-70, which is good. Then there’s the CD-38 antigen test, the higher the level the worse the disease tends to be. My levels are a bit high, not good. And there’s the beta-microglobulin test. Low levels are good; mine are slightly elevated. And there’s the antibody mutation; the IgVh test, which is, curiously, good when it’s mutated and bad when it’s not. Mine is mutated, which is good. So overall my disease markers are mixed.
The researchers have found that by measuring all your “markers” they can predict how aggressive your disease will be. The worse the markers are, the more aggressive your doctors will tend to be, both in terms of earlier treatments and strength of chemotherapy, since they know the disease will advance more rapidly.
So the reason for this lengthy explanation of disease markers and such is to help explain why I’m not being treated right now. My markers are not all bad. Indeed some, like the IgVh mutation, are considered very good. So even though my disease has relapsed and is slowly getting worse, my docs are fairly confident that we can safely wait at least a few more months before we begin treatments again as long as my white blood cell counts don’t go up too fast. But before all these markers were discovered, all they had to go by was a patient’s white blood cell count, lymph node sizes and symptoms.
In the meantime I have continued to work with the Leukemia and Lymphoma Society, hanging around with members of their Team In Training. I have been one of their Honored Heroes (as they call members who have or who have had leukemia or lymphoma) for a few years now, but after I recovered from my last chemotherapy I got more active in their programs. I started walking farther and farther with them, finally working up to doing a half marathon in May of last year. And since that time, I have finished five half marathons, all within the last fourteen months! Many of you have helped me do some fundraising for several of these events. I just completed my last half marathon in early June when I went to San Diego for a fantastic event with an incredible 30,000 runners doing either the half or full marathons. (The crowd was so large that, though the starting gun went off at 6:15 AM, I didn’t cross the START line until 7:05. I was toward the back of the crowd as it slowly shuffled toward the start.).
Anyway, all that talk about doing multiple half marathons makes my next bit of news hard to believe. I had just finished my fourth half marathon in May and was preparing for another in San Diego in early June when I had a follow up appointment with my cardiologist. I’ve been seeing a cardiologist regularly since I had an echo cardiogram done back in 2004, at which time they found my mitral heart valve was apparently deteriorating (see October 7, 2004 of my Adventures With Leukemia blog, link below, for the details). It was initially thought to be bad enough that I might need surgery soon. But subsequent testing showed it wasn’t quite so bad. Moderately bad, perhaps, but not seriously bad.
So I get my heart checked every six to twelve months. When I saw my doc in late May I told him I felt like I was doing, overall, better than I had in a while. Though I quickly get short of breath if I try to run, I can walk long distances without too much difficulty. So he ordered a routine echo cardiograph (an ultrasound of the heart). Now, usually, after he looks at the echo cardiogram, he says something like, “Looks good, see you in six months.” But, this time he said, “Hmm, let’s go in the other room and talk.” I didn’t like hearing that.
It turns out that my mitral valve is indeed deteriorating now, and it may be that I really am getting to the point that I need open heart surgery. That’s just so hard to believe, since I feel so relatively normal, frequent fatigue notwithstanding. But things have changed since my mother had her mitral valve replaced twelve years ago. First, they now try to repair the valve rather than replacing it. That’s wonderful when they can do that as then you don’t have a metal valve in your heart and don’t need to take a lifetime’s worth of blood thinners. Secondly, they now try to do any needed surgery before you absolutely “need” to have it done, as you’ll be healthier and the outcomes are generally better. So, they won’t want to wait until I’m in heart failure and sick from my cardiac disease before they do the surgery. The issue, then, is when am I about to go into heart failure and “need” the surgery? There’s a certain amount of guesswork involved in this and if any surgery needs to be done in the next year to eighteen months or so, it needs to be coordinated around my next chemotherapy. And when will that be? Well, we don’t know that either.
So, what will happen with both of these issues is that we’ll follow them and see what I need to do first. If it’s the chemotherapy, I’ll have to hope that my heart doesn’t get much worse during the months of chemo, because the cardiac surgeons won’t touch me if I’m doing chemotherapy. But if my heart does get worse during chemo, then we may miss the window of opportunity to have the surgery done before I go into heart failure. If I need the heart surgery first, I’ll have to hope the leukemia doesn’t relapse too fast and cause me to need chemotherapy while I’m recovering, as that really could impact my recovery. Anyone know a good fortune teller?
Anyway, while we’re waiting to see what happens, I’ve signed up for two more half marathons, one in Denver in October and another in Dallas in December. We’ll see if I actually get to compete in these events.
Let me end with some good news. Crazy news, actually. As I’ve already told some of you, whenever I see a charity or some other worthwhile organization selling raffle tickets, I buy a few. I have bought raffle tickets for trips to Germany, for handmade quilts, for vacation packages, for meals at fancy restaurants and so forth. I never win anything and that’s okay. I just feel like I’m supporting the charities with my raffle ticket purchases and I don’t mind doing so. So when the Ft. Worth Symphony Orchestra had a raffle recently I bought some tickets. I already support them as a season ticket holder and as a donor anyway, so why not buy some raffle tickets?
Well, on July 6th I got a call from the president of the Symphony. I wondered if I was behind in my pledge for the year or something. But, no! She called saying she had good news. At the annual 4th of July concert in the botanical gardens in Ft. Worth, they had drawn the name of the winner of the raffle, and the winner was me! And so, what did I win, you ask? I won a completely restored 1968 Cadillac convertible, black paint with black leather interior, chrome wheels and “power everything”. This thing is huge! It’s about 18 to 19 feet long and has a 7.7 liter V-8 engine that puts out about 340 horsepower. Now, that’s all well and good, but I have no place to put it. I’m currently looking around for a place to park it, as we only have a two car garage and we already have two cars. We can’t generally park cars on our driveways around here (home owners’ association rules, of course). So, it’s going to be interesting. Fun, but interesting.
And that’s all for this update. But there’s always more.
Dave
Saturday, March 6, 2010
The Leukemia Roller Coaster
Dave’s Great Adventure, Book Four
Chapter 1, Verse 1
March 6, 2010
I had written a follow-up story to add to my DGA series. All I had to do was proof read it, polish it a bit and send it out. I mentioned all the good news we’d gotten. Then we got a phone call.
Our trip last month to M. D. Anderson in Houston was uneventful. I enjoy the trips out there as I like the “road trips” and the drive. Interstate 45 isn’t the most scenic highway in America but it’s a nice, open and fairly lightly traveled road, where you can “exercise” your car, if you care to do so. This prior autobahn driver likes to “exercise” his car when given the opportunity! Plus there’s some pretty good barbeque to be had along the way.
The visit in the Leukemia Clinic went very well indeed. I had some blood drawn the day before the actual visit and all the tests that had been completed were normal. That’s a nice thing when my blood tests have been abnormal for so long. My physical examination was normal, too. In fact, things were so normal that my doc, Dr. Keating, said I could wait for a year to come back! Whenever your cancer doc says you can come back in a year, that’s good news indeed. I did mention that I was still having somewhat of a mental fog, the “chemobrain” that I have mentioned on several occasions, which makes it hard to concentrate and multitask. It’s a bit like having ADHD, I suppose, as I have trouble reading a whole newspaper article before I want to skip to something else. And I can’t usually do the MENSA quizzes in the airline magazines anymore. Anyway, they offered me Ritalin to treat the problem, but I declined. I think that makes you rather hyper. Kathy doesn’t need to put up with me being hyper, too.
Things were so normal that after my physical exam was done, checking my lungs, heart, lymph nodes and such, they even canceled the bone marrow biopsy that was scheduled for later in the morning. Now, as much as I enjoy reading the clinical pathology reports on my bone marrow biopsies, I didn’t miss getting my hip bone “drilled” again. We decided to do a test called a “flow cytometry” instead, a blood test that examines the white cells looking for signs of leukemia.
While I was with Dr. Keating I asked him about the significance of the negative PCR test which had shown up on my bone marrow biopsy last August (which could find no evidence of leukemia at the molecular level). He told me that with the mutated gene I had (see my story entry [below] from September 13, 2006) and a negative PCR test, I had probably a 75% chance of being in remission in TEN YEARS! What incredible news that was. What a “high” you get when you hear things like that!
So, leaving the clinic in a great mood, we went by the lab to get my flow cytometry blood drawn and then headed back home.
But a few days later, I got a letter from the leukemia clinic saying I was to come back, not in a year, but in six months. I figured there had been a mistake and called the research nurse, who handles my case. I got her answering machine and so left a message asking about the six month visit and, additionally, if she could mail me a copy of the flow cytometry test results, as they never come back until I’m long gone from Houston . Later that day Kathy and I were out at her physical therapy appointment, since she’s still having those three times weekly following her second knee replacement surgery. During our absence my Houston nurse, Ana, called back and left me a message, saying that, yes, six months was the correct interval and that I should call her to talk about the “flow.”
Now, it’s not generally good news when you’re asked to call back to discuss a lab result from your leukemia doctor’s office. When things are normal, the message usually is, “We’ll put a copy of your labs in the mail.” So I called her back. Ana gave me the unexpected news that my flow cytometry test, after being absolutely negative for the last eighteen months, was again positive, and showed the presence of leukemia cells. This was completely, totally unexpected, as I’d been doing so well. I had the negative PCR test just six months previously and I had otherwise normal blood tests. But the flow cytometry test can detect a single leukemia cell among something like 10,000 normal white blood cells, and apparently now seems to be showing about 2% abnormal cells. Wow! From such a mental high with the good news of the previous week, to such a low, finding out that the disease is still stalking me. Looks like I beat the odds, in a way. I’m in the other 25% that won’t be in remission in ten years.
But these highs and lows are what this disease has been doing to me for years now. I was so very low when I found out I had leukemia; then high when I first went into complete remission, imagining that I might actually be cured. Then low again when it recurred a year later. Then high again, but not quite so high (because I’d been fooled once before), when I went into remission again after my second course of chemotherapy. Then low when it came back yet again in eighteen more months. But, then after this most recent aggressive, experimental course of novel chemotherapy which made me PCR negative, I was very high, again deluding myself into thinking I might either be cured or have a long, durable remission. And now…low again. But, there will be highs again; I just know it.
So, for now we wait. I’ll be getting blood tests every couple of months or so to see how rapidly my white blood cell counts go up. I’ll be seeing my local doc in about a month and seeing Dr. Keating again in Houston in six months, unless things change more rapidly than expected. It’ll be interesting to see what he thinks we should do the next time we need to treat me. We’ve pretty much used up the “easy” things, with the three experimental therapies we’ve tried. But, Dr. Keating mentioned to me in another conversation last year that his group expected to begin clinical trials on yet another experimental therapy sometime this year, one that they thought might lead to a cure. That should be interesting, and perhaps I’ll qualify for that new drug protocol. Plus, we can still try a bone marrow transplant when all else fails, though that entails some significant risks.
I previously mentioned that during my remission I had gotten more active in the Team In Training, and had done a few half marathons as fund raising events for the Leukemia and Lymphoma Society. And in January, I signed up for yet another event which I expect to do in June. But even though I’m now relapsing and the disease is returning, I still hope to be able to complete this event. I have pledged to raise over $3000 this time, and I would like to ask for your help in raising this amount. I plan to contact many of you individually, but if you’re able to help me with my task at this time, I’d like to ask you to go to my donation web page and help me by donating whatever you’re able. No amount is too small. Like I told my teammates recently, I hope the researchers can find a cure for this disease in my lifetime. But trying to find a cure will be very, very expensive. Please help me raise some of the funds that it will take to cure this disease.
http://pages.teamintraining.org/ntx/rnr10/deckberg
Thanks for any help you can give me and the Leukemia and Lymphoma Society. I am deeply and personally grateful for all the wonderful folks who have been helping me, praying for me and supporting my causes over the last several years. I hope I can count on your support in the future.
More to follow…there’s always more, isn’t there?
Dave Eckberg
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