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
Wednesday, November 2, 2011
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
Friday, February 12, 2010
Overdue Update; Things Look Good
Dave’s Great Adventure
Book Three, PS3
February 12, 2010
Recently my mother received a very late Christmas card and letter from some elderly friends of many years ago. The letter started out, “I better get a letter out to my friends or else everyone will think we’re dead.”
That’s rather where I am right now. I have planned an update, have started composing an update in my head, and have promised many friends that an update was coming…for many months now. As I’ve said in other delayed reports in the past, when I am silent for too long, some folks have to fear for what is going on, and so I have received a few tentative “How are you doing?” type messages, to which I have apologized for being so tardy and promised to get a message out. I have been busy, but not so busy that I couldn’t have gotten at least a short message out if I had just sat down and done it.
Anyway, the short answer to the question about how I’m doing since I completed my last round of chemotherapy is, “Just fine!” I have been in complete remission now for almost 19 months. That’s significant, as I’ve now been in remission for a longer period of time than ever before, my previous long remission having been 18 months after my course of intense therapy in March 2004. And although I have had a return of some of the “chemo brain” effects, with problems remembering things and in trying to multitask, my strength is as good as it’s been in many years, as I’ll tell you in some following paragraphs.
And the remission is even better than “just” an eighteen month remission! I had a bone marrow biopsy last August 2009 and at that time my docs at M. D. Anderson couldn’t find leukemia in my blood, or in my bone marrow, and couldn’t even find any evidence of disease at the MOLECULAR level with a test called a PCR probe (polymerase chain reaction)! I know of another CLL patient, a journalist who also sees Dr. Keating (my doc at M. D. Anderson), who achieved PCR negativity ten years ago and still is in remission. That’s not to say he’s cured, but that’s an amazing stretch of remission. In fact, he says in his writing that he is, for all intents and purposes, cured. But, I imagine that he still gets tested periodically. Maybe I’ll ask Dr. Keating about him the next time I see him and see if our doc thinks he’s cured.
Now, I’m very, very happy to be PCR negative, but I still have to go back and be tested periodically. In fact, I have to go back to Houston next week for yet another bone marrow biopsy, to see if there’s any evidence that the disease has returned. Wish me luck!
Several things have happened over the past year since I last sent out an update, things that many of you may find of interest. The first concerns my wife Kathy, whom many of you know. Now, Kathy has cared for me through every day of every course of the therapy I’ve had since I got sick back in 2002. Well, it has been my turn to care for her recently. Kathy has an inherited trait for degenerative arthritis and has had increasing pain in her knees in recent years, just as her mother and sisters have had. One sister and her mother ended up with joint replacements and so, in the last few months, Kathy has had both knees replaced, one in September and the second one last month. She is recovering very well and things are on track for a complete recovery soon, but her surgeries have given me the opportunity to care for her as she has done for me for so long. She’s currently going to outpatient physical therapy and is doing just great, less than four weeks after her second surgery. She rarely even uses a cane anymore. I’m not much of a househusband but I’ve been able to be trained to do laundry, clean up the kitchen and warm up some food while Kathy’s been laid up.
Back to my chemotherapy; I did very well during the time I was getting the drugs and in the months thereafter, except for a bad bronchitis/pneumonia I had about a year ago, but my immune system has taken quite a hit. One of the drugs I took, called Fludara, specifically targets white cells, which of course are the cells which help protect me from infections. Well…. Last year Kathy and I went to Antarctica on an “expedition,” which was just wonderful. I recommend such an adventure to all of you. But, during the course of our trip, we were in daily contact with penguins and their, uh… guano… or excrement. The shores around their colonies were often coated in the stuff. Now, we had rubber boots and were protected from the stuff (unless we slipped and fell in it, as some folks did) but at the end of each trip to the shore, we had to take our boots off. And even after the boots had been cleaned upon our return to our ship, they had some remaining “stuff” on them. We inevitably must have gotten some on our hands as we removed our boots, at least on a microscopic level. Anyway, Kathy probably got some penguin poop on her hands, and then into her eyes, because she developed a bad eye infection. The ship’s doc had some simple antibiotic eye drops which slowly seemed to take care of the problem, until we got home, when it seemed to recur. So we went to a doc here in town to have her re-evaluated and get some different antibiotics, which worked quite well.
So, just as she was getting over her infection, I got it. I treated myself with the same stuff that had worked so well on her, and it did work well. But now, it recurred in Kathy. And then when I finished my antibiotics, I got it again, too! We ping-ponged the infection back and forth for about ten weeks, despite cleaning the whole house, washing all the bed linens, washing down sinks, light switches, counter tops, etc. Then, during the time all that was happening, my ophthalmologist took a look inside my eyes and discovered that I also have a fungal infection called histoplasmosis in/on my retinas! Now, there is no good treatment for this. If it starts to spread, as it can, they can use lasers on the spots (destroying the retina with the infection) or inject the spots of histoplasmosis with drugs, like the Avastin I was getting during my most recent chemotherapy. So far, in the months since this new infection has been discovered, it has not seemed to spread at all.
And, during this time, I started having clusters of growths on my hands and right forearm. That was curious, so I went to a dermatologist to have a biopsy done, which showed that I was developing warts on my hands and arm. I’ve had some problems with warts on my hands since I first found I had leukemia, and getting warts is not uncommon for chemotherapy patients since our immunity is compromised, but I was getting them in places I’d never had them before. So, I’ve been going to my dermatologist for months now and have had probably a dozen treatments to destroy over 20 warts, and we still have a few persistent ones to deal with.
And then, as if the eye problems and the warts weren’t enough, the irregular heart beat I’ve had for years got much worse about this time. I was having irregular beats throughout the day, predominantly a rhythm called “bigeminy,” where you repetitively have a normal heartbeat immediately followed by an abnormal heartbeat. This led to several consultations, prolonged heart monitoring and eventually starting more medications, along with talk of possibly going into my heart to “ablate” the abnormal part of my heart that is causing the problem. I’m doing much better now, and my heart rhythm is more normal than when this problem first developed, but I still have frequent problems with the bigeminy. I’ll be seeing my “arrhythmologist” again in a couple of weeks to see what our next step is.
Last year, just before I stopped writing, I had mentioned that I was doing more and more with the kind folks from the Leukemia and Lymphoma Society’s Team in Training. I had started doing some of their events and had even signed up for a half marathon. I’m extremely pleased to tell you that I was strong enough to be able to complete that half marathon last May, and then in a fit of irrational exuberance, I went and signed up for half marathons in Denver in October and again in Dallas in December. I’ve been raising funds when doing these events and have been pleased to have completed both the half marathon walks without great difficulty, but also have been able to raise more money for the society. And, I’ve been doing something even tougher (for me)…I’ve been doing a bit of public speaking at some LLS events, at recruiting meetings and at pre-marathon dinners. It’s tougher for me, probably, because I’m prone to terrible stage fright when in front of crowds, but I’m happy to say that I’ve done reasonably well in my attempts at public speaking.
And, I’ve gotten so “into” these events that I’ve signed up for yet another half marathon for later this year. In June I plan to do the San Diego Rock and Roll Half Marathon as yet another fund raiser for the LLS. I think that I’ll take Kathy out there and I’ll do the event and then we’ll have a little vacation out there as well.
And one last thing; my mom, whom many of you know, just celebrated her 90th birthday last week. Happy birthday, Mom!
And I think that’s enough of an update for now. I’ll be back when I have more news. In fact, I may be back rather soon to report on the results of my upcoming bone marrow biopsy.
Bye now,
Dave
Tuesday, February 17, 2009
Setbacks
Dave’s Great Adventure
Book Three, PS2
February 17, 2009
You know, things had been going so well. Probably too well. I couldn’t expect things to go perfectly forever, could I? I got through six months of a new, experimental chemotherapy without any real complications. Sure, I had some side effects of the drugs, with headaches, weakness, body aches and the like, but no complications, really. I’ve seen folks around me, in the chemo rooms, have complications with their blood pressure dropping to dangerous levels, I’ve seen chemo failures, I’ve seen dangerously low blood counts as a result of chemo, but I’ve managed to either escape these problems or, in the case of very low blood counts, have escaped any problems resulting from them. And I haven’t bled into my lungs, had a bowel perforation or developed any brain damage, as can happen with the Avastin. I’ve done well.
The last time I wrote I had just completed (walked, really) a five mile leg on a marathon relay team and was feeling just great. In fact, the very next morning I went out and walked seven miles. That same day I also saw a flyer about an upcoming 15K (about nine miles) run/walk and figured I should be able to do that, and signed up for it. I was perhaps a bit too confident. A couple of things have happened recently that are results of the chemotherapy and/or my disease that have really slowed me down and set me back in my training and recovery. The first takes a bit of explanation and a little history.
After my early chemotherapy, and especially after my second round in 2004, my marrow was severely damaged, intentionally to be sure, but nevertheless, severely damaged. As it reconstituted itself, my immune system was similar to that of a baby, “seeing” things as if I was encountering them for the first time; germs, protein, allergens, etc. As a result, a strange thing happened to me. After drinking milk all my life, I became allergic to it, and fairly seriously so.
I didn’t realize it at first, because I was taking antihistamines every day just because I was congested from pollens and dust in the Denver air. I noticed occasionally that I had some tingling in my lips after eating frozen custard, which I loved because it was 10% butterfat (!) but I didn’t pay any attention to the tingling because it went away shortly after I enjoyed my dessert.
But I was very tired just about every day, and I didn’t know if it was because of the leukemia, a lingering effect of the chemotherapy, or perhaps a side effect of some of the drugs I was taking, like the Claritin and Sudafed. So, I stopped all these drugs just to see if I would feel any better. And about that time I ate some cheesecake and drank some whole milk. I started feeling strange.
I first began wheezing and breathing very hard, and then I developed welts all over my body. Kathy was worried about what was going on, because at the time I was also being treated for bronchitis, and suddenly I wasn’t breathing very well. I gave her my usual “I’m fine!” routine but at some point she said that if I didn’t get in to the clinic to be seen she was going to call 911! I guess she was serious.
So I went to the clinic that Sunday morning where they diagnosed my condition as an allergic reaction. Because I’d been taking erythromycin for the bronchitis, my docs decided I was probably reacting to it. It didn’t seem likely that it was the cheesecake or milk because, after all, I’d been eating and drinking milk products all my life. On the other hand, I’d had e-mycin multiple times over the course of my life and hadn’t had any problems. In any case they stopped the e-mycin, gave me injections of Benedryl, shots of steroids and a steroid dose-pack to take home with me, and away I went.
Meanwhile I went back on the Claritin because I felt worse off it than on. I didn’t notice any change in my fatigue while off the drug so I didn’t see any reason to suffer from the congestion too. And things went along okay for a while, but I still had the occasional tingling, and a little swelling of my lips, after frozen custard at our favorite little shop, CJs Frozen Custard in Lone Tree, Colorado. Great little place and wonderful people that run it too. If you live in Colorado, give it a try some time. Anyway, nothing else happened after the slight tingling I sometimes felt. [This story is getting too long…which is not an uncommon phenomenon when I write. I’ll try to “cut to the chase].
At some point I again stopped my Claritin, don’t remember why, and within a short time had some bad reactions after eating more frozen custard again after eating some creamed beef made with whole milk. I had swollen lips, swelling in the back of my mouth and in the soft palate and hives all over my body. This time I wasn’t on erythromycin so we couldn’t blame it on the antibiotic. I was sent to the allergist for testing and was laid on my belly while they injected my back with 99 shots of various proteins, checking to see what I would react to. One injection stung like a bee sting…it was milk! That was amazing to me (though I already suspected it) because I’ve drunk milk, eaten cheese, butter and ice cream and put cream in my coffee all my life.
My allergist said he had seen similar problems in folks with HIV who developed AIDS, which wiped out their immune systems, and who then were recovering after using the anti-retroviral medications. I have a similar situation as my immune system has been severely compromised by the drugs I’ve taken to wipe out my abnormal white cells, the leukemic cells, but which also take out just about any white cells they come across. My new lymphocytes didn’t recognize milk proteins as “okay” and developed abnormal antibodies to them, resulting in the allergic ractions.
So, knowing that I was allergic to milk (but not cheeses, sour cream, ice cream, for some reason), and knowing that the very weak antihistamine Claritin was somehow protecting me from these bad reactions, for the most part, I went back on Claritin daily, for years. I did well.
Skip to late 2008. I was having chronic sinus infections, which goes with the leukemia. I saw an ENT doc about it here in Denton and he wasn’t happy that I was taking Claritin (and some other antihistamine, too) on a daily basis. “Thickens your mucus,” he says, and he wants it thinner so it’ll drain better. “Cool,” say I, because I haven’t had any problems with milk in years now and I think that I’m “over” the allergic reactions by now and it’ll be one less pill for me to take every day.
On Christmas day we were at our daughter and son-in-law’s home for a Christmas brunch. She made a pluck-it cake, a family favorite, for the brunch. I decided to have a glass of milk with it, just a little glass of milk. Man, within minutes my lips had started swelling, followed closely by swelling in the back of my throat. Then the hives started. I started taking Benedryl, which Kathy carries with her everywhere, and did pretty well, though the swelling in my mouth, as usual, didn’t totally resolve for about 36 hours. Fortunately I continued to breathe well so we didn’t have to use the epinephrine injector pen, which Kathy also carries with her everywhere, but I now know that I’m still allergic to milk and will likely have to be on antihistamines (for life?) or avoid milk. I can’t (don’t want to) avoid milk! Or frozen custard! Hell of a deal…. I remain mystified that such a weak antihistamine as Claritin is all it apparently takes to prevent, for the most part, any serious reactions to my exposure to milk proteins. I do, uhh…, test it from time to time by going to the local Culver’s Frozen Custard shop in nearby Flower Mound, Texas. So far the Claritin is still protecting me.
And that, in just three pages, is the first problem that cropped up.
Part II: Since I’ve been sick and have had chemotherapy, and have been immuno-compromised, Kathy and I do everything we can to avoid sick folks. We avoid crowds, known sick folks, anyone who is coughing, I don’t touch doorknobs if I can avoid it, and I wash my hands obsessively. But sometimes you just can’t do these things.
Over Christmas we had a family reunion here in Denton. Most of the extended family was able to gather here and visit with Mom, who was spending her first Christmas in Texas in many, many years. Now, you can’t really avoid crowds when you’re hosting a family reunion. And on top of that crowd, we had a couple of holiday functions in the neighborhood that we wanted to attend, because it’s nice to be with the neighbors from time to time. Some folks were coughing. Normally we’d have stayed away from them, but I figured I must be doing better; I hadn’t had a cough or cold in a couple of years. Well, as it turned out, I really wasn’t doing any better (just like I wasn’t over my milk allergies), it was just that Kathy had been watching over me and keeping me out of trouble by avoiding crowds. So, after being around lots of folks, I got sick. I really got sick.
A few days after I signed up for the 15K walk, I started feeling sick and the “feeling sick” progressed to “being sick.” I was as sick as I’ve been in years, with the cough that has been going around so many parts of the US. After being short of breath for about ten days (I don’t give in easily!) I went to see a real doctor. My doc listened to my chest and gave me a diagnosis of pneumonia! He prescribed a very powerful oral antibiotic, Avalox (moxifloxacin), and sent me on my way. The next day, my mom, who had also gotten the illness, was coughing up so much stuff she was gagging on the phlegm. I took her in too. My doc gave her a simpler antibiotic (doxycycline) because she is on blood thinners which are affected greatly by most antibiotics. Mom was better in about three days.
A week later, I was worse. I went back; my doc listened to my chest again, mentioned a possible hospital admission, and gave me a shot of steroids for my wheezing, a steroid and bronchodilator inhaler and the same antibiotic he had given my Mom the week before, but at a higher dose. I was feeling, not well, but better within a few days, and so, because I had now infected Kathy with the cough too, I wrote her a prescription for the same antibiotic. She got better within days. [The fact that the disease responded to doxycycline and not the Avalox probably means it was not a “regular” pneumonia, caused by pneumococcus, but more likely a mycoplasma infection, or maybe even something like Legionnaire’s disease.] I slowly got a lot better, but after I finished the ten days of antibiotics, I started relapsing. Man, I didn’t want to go to the hospital, so I wrote myself a prescription for the same antibiotic, the doxycycline, again, but for a longer time. Over time, another week or so, I finally recovered. But the pneumonia/ bronchitis, or whatever it was, took the month of January from us. I’ve just proven to myself that I can’t break our rules about avoiding sick folks, whether they are friends or family. My body can’t tolerate it and is still just too weak to take chances. I just don’t have enough effective white cells.
And that’s how I spent my Christmas vacation. And all of January, too. In other leukemia related developments, my blood counts are either staying stable or getting slightly better. I’m still just a little anemic but not enough to bother me too much and my platelets are slowly, very, very slowly, increasing, up to 84,000 at last count earlier this month (from 40,000 just after we finished chemo in July, normal being greater than 150,000). My white count is still sub-normal at about 2,800 (normal being over 3,000). That’s both the good news and bad. It’s good as when my counts start climbing again, the disease is probably recurring once again. It’s also the bad news because I need white cells so as not to get as sick as I was in January!
I’ve started walking again and have been inspired by my early successes in the short 5K and 5 mile runs, to sign up for a TNT fund-raising half marathon in May (check out the link below; if you can spare $25 or so, I’d very much appreciate it, and so would many other folks with leukemia). We’ll see if I can actually do it. I’m walking pretty well with good tolerances to the distances (back up to five miles or so thus far) but I notice that after the walks, I frequently develop general body aches, not in muscles actually, but all over my body and sometimes I feel sick for a day or two afterwards. I’m wondering if this is some prolonged chemo effect and if it’ll wear off. I’ll be asking my oncologist when I see him again.
I have to wrap this up and get it into the electronic mail, as we’re leaving on a long-planned trip to Antarctica later today. Typically of me in my retirement years, I haven’t even finished packing so I have a lot to do today. In former times I’d have had multiple lists made and things out and organized days ahead of time, but no longer. Hopefully I’ll have everything I need ‘cause once we get down to Antarctica, there are no drug stores, no shops, and nothing where one can pick up the things you left behind.
Thanks to so many of you who wrote messages to me after my last letter; my cousin Curtis in San Francisco, Jane in Iowa, Amber in Houston, Liz and Steve in Englewood, CO, Brad and Ann in Iowa, and many more. I love hearing from you guys, and my failure to respond was a function of Christmas closely following my last chapter and then the month of illness that followed, which allowed all your messages to get buried in the e-mail queue. It wasn’t for lack of appreciation of your messages, which I really love to get, but for lack of discipline on my part.
And that’s just about all for now. There’s always more later. Perhaps a report on Antarctica in the coming months….
Dave
http://pages.teamintraining.org/ntx/ntrails09/deckberg
www.adventureswithleukemia.blogspot.com
“The whole aim of practical politics is to keep the populace alarmed and hence clamorous to be led to safety, by menacing it with an endless series of hobgoblins, all of them imaginary.” H. L. Mencken
Book Three, PS2
February 17, 2009
You know, things had been going so well. Probably too well. I couldn’t expect things to go perfectly forever, could I? I got through six months of a new, experimental chemotherapy without any real complications. Sure, I had some side effects of the drugs, with headaches, weakness, body aches and the like, but no complications, really. I’ve seen folks around me, in the chemo rooms, have complications with their blood pressure dropping to dangerous levels, I’ve seen chemo failures, I’ve seen dangerously low blood counts as a result of chemo, but I’ve managed to either escape these problems or, in the case of very low blood counts, have escaped any problems resulting from them. And I haven’t bled into my lungs, had a bowel perforation or developed any brain damage, as can happen with the Avastin. I’ve done well.
The last time I wrote I had just completed (walked, really) a five mile leg on a marathon relay team and was feeling just great. In fact, the very next morning I went out and walked seven miles. That same day I also saw a flyer about an upcoming 15K (about nine miles) run/walk and figured I should be able to do that, and signed up for it. I was perhaps a bit too confident. A couple of things have happened recently that are results of the chemotherapy and/or my disease that have really slowed me down and set me back in my training and recovery. The first takes a bit of explanation and a little history.
After my early chemotherapy, and especially after my second round in 2004, my marrow was severely damaged, intentionally to be sure, but nevertheless, severely damaged. As it reconstituted itself, my immune system was similar to that of a baby, “seeing” things as if I was encountering them for the first time; germs, protein, allergens, etc. As a result, a strange thing happened to me. After drinking milk all my life, I became allergic to it, and fairly seriously so.
I didn’t realize it at first, because I was taking antihistamines every day just because I was congested from pollens and dust in the Denver air. I noticed occasionally that I had some tingling in my lips after eating frozen custard, which I loved because it was 10% butterfat (!) but I didn’t pay any attention to the tingling because it went away shortly after I enjoyed my dessert.
But I was very tired just about every day, and I didn’t know if it was because of the leukemia, a lingering effect of the chemotherapy, or perhaps a side effect of some of the drugs I was taking, like the Claritin and Sudafed. So, I stopped all these drugs just to see if I would feel any better. And about that time I ate some cheesecake and drank some whole milk. I started feeling strange.
I first began wheezing and breathing very hard, and then I developed welts all over my body. Kathy was worried about what was going on, because at the time I was also being treated for bronchitis, and suddenly I wasn’t breathing very well. I gave her my usual “I’m fine!” routine but at some point she said that if I didn’t get in to the clinic to be seen she was going to call 911! I guess she was serious.
So I went to the clinic that Sunday morning where they diagnosed my condition as an allergic reaction. Because I’d been taking erythromycin for the bronchitis, my docs decided I was probably reacting to it. It didn’t seem likely that it was the cheesecake or milk because, after all, I’d been eating and drinking milk products all my life. On the other hand, I’d had e-mycin multiple times over the course of my life and hadn’t had any problems. In any case they stopped the e-mycin, gave me injections of Benedryl, shots of steroids and a steroid dose-pack to take home with me, and away I went.
Meanwhile I went back on the Claritin because I felt worse off it than on. I didn’t notice any change in my fatigue while off the drug so I didn’t see any reason to suffer from the congestion too. And things went along okay for a while, but I still had the occasional tingling, and a little swelling of my lips, after frozen custard at our favorite little shop, CJs Frozen Custard in Lone Tree, Colorado. Great little place and wonderful people that run it too. If you live in Colorado, give it a try some time. Anyway, nothing else happened after the slight tingling I sometimes felt. [This story is getting too long…which is not an uncommon phenomenon when I write. I’ll try to “cut to the chase].
At some point I again stopped my Claritin, don’t remember why, and within a short time had some bad reactions after eating more frozen custard again after eating some creamed beef made with whole milk. I had swollen lips, swelling in the back of my mouth and in the soft palate and hives all over my body. This time I wasn’t on erythromycin so we couldn’t blame it on the antibiotic. I was sent to the allergist for testing and was laid on my belly while they injected my back with 99 shots of various proteins, checking to see what I would react to. One injection stung like a bee sting…it was milk! That was amazing to me (though I already suspected it) because I’ve drunk milk, eaten cheese, butter and ice cream and put cream in my coffee all my life.
My allergist said he had seen similar problems in folks with HIV who developed AIDS, which wiped out their immune systems, and who then were recovering after using the anti-retroviral medications. I have a similar situation as my immune system has been severely compromised by the drugs I’ve taken to wipe out my abnormal white cells, the leukemic cells, but which also take out just about any white cells they come across. My new lymphocytes didn’t recognize milk proteins as “okay” and developed abnormal antibodies to them, resulting in the allergic ractions.
So, knowing that I was allergic to milk (but not cheeses, sour cream, ice cream, for some reason), and knowing that the very weak antihistamine Claritin was somehow protecting me from these bad reactions, for the most part, I went back on Claritin daily, for years. I did well.
Skip to late 2008. I was having chronic sinus infections, which goes with the leukemia. I saw an ENT doc about it here in Denton and he wasn’t happy that I was taking Claritin (and some other antihistamine, too) on a daily basis. “Thickens your mucus,” he says, and he wants it thinner so it’ll drain better. “Cool,” say I, because I haven’t had any problems with milk in years now and I think that I’m “over” the allergic reactions by now and it’ll be one less pill for me to take every day.
On Christmas day we were at our daughter and son-in-law’s home for a Christmas brunch. She made a pluck-it cake, a family favorite, for the brunch. I decided to have a glass of milk with it, just a little glass of milk. Man, within minutes my lips had started swelling, followed closely by swelling in the back of my throat. Then the hives started. I started taking Benedryl, which Kathy carries with her everywhere, and did pretty well, though the swelling in my mouth, as usual, didn’t totally resolve for about 36 hours. Fortunately I continued to breathe well so we didn’t have to use the epinephrine injector pen, which Kathy also carries with her everywhere, but I now know that I’m still allergic to milk and will likely have to be on antihistamines (for life?) or avoid milk. I can’t (don’t want to) avoid milk! Or frozen custard! Hell of a deal…. I remain mystified that such a weak antihistamine as Claritin is all it apparently takes to prevent, for the most part, any serious reactions to my exposure to milk proteins. I do, uhh…, test it from time to time by going to the local Culver’s Frozen Custard shop in nearby Flower Mound, Texas. So far the Claritin is still protecting me.
And that, in just three pages, is the first problem that cropped up.
Part II: Since I’ve been sick and have had chemotherapy, and have been immuno-compromised, Kathy and I do everything we can to avoid sick folks. We avoid crowds, known sick folks, anyone who is coughing, I don’t touch doorknobs if I can avoid it, and I wash my hands obsessively. But sometimes you just can’t do these things.
Over Christmas we had a family reunion here in Denton. Most of the extended family was able to gather here and visit with Mom, who was spending her first Christmas in Texas in many, many years. Now, you can’t really avoid crowds when you’re hosting a family reunion. And on top of that crowd, we had a couple of holiday functions in the neighborhood that we wanted to attend, because it’s nice to be with the neighbors from time to time. Some folks were coughing. Normally we’d have stayed away from them, but I figured I must be doing better; I hadn’t had a cough or cold in a couple of years. Well, as it turned out, I really wasn’t doing any better (just like I wasn’t over my milk allergies), it was just that Kathy had been watching over me and keeping me out of trouble by avoiding crowds. So, after being around lots of folks, I got sick. I really got sick.
A few days after I signed up for the 15K walk, I started feeling sick and the “feeling sick” progressed to “being sick.” I was as sick as I’ve been in years, with the cough that has been going around so many parts of the US. After being short of breath for about ten days (I don’t give in easily!) I went to see a real doctor. My doc listened to my chest and gave me a diagnosis of pneumonia! He prescribed a very powerful oral antibiotic, Avalox (moxifloxacin), and sent me on my way. The next day, my mom, who had also gotten the illness, was coughing up so much stuff she was gagging on the phlegm. I took her in too. My doc gave her a simpler antibiotic (doxycycline) because she is on blood thinners which are affected greatly by most antibiotics. Mom was better in about three days.
A week later, I was worse. I went back; my doc listened to my chest again, mentioned a possible hospital admission, and gave me a shot of steroids for my wheezing, a steroid and bronchodilator inhaler and the same antibiotic he had given my Mom the week before, but at a higher dose. I was feeling, not well, but better within a few days, and so, because I had now infected Kathy with the cough too, I wrote her a prescription for the same antibiotic. She got better within days. [The fact that the disease responded to doxycycline and not the Avalox probably means it was not a “regular” pneumonia, caused by pneumococcus, but more likely a mycoplasma infection, or maybe even something like Legionnaire’s disease.] I slowly got a lot better, but after I finished the ten days of antibiotics, I started relapsing. Man, I didn’t want to go to the hospital, so I wrote myself a prescription for the same antibiotic, the doxycycline, again, but for a longer time. Over time, another week or so, I finally recovered. But the pneumonia/ bronchitis, or whatever it was, took the month of January from us. I’ve just proven to myself that I can’t break our rules about avoiding sick folks, whether they are friends or family. My body can’t tolerate it and is still just too weak to take chances. I just don’t have enough effective white cells.
And that’s how I spent my Christmas vacation. And all of January, too. In other leukemia related developments, my blood counts are either staying stable or getting slightly better. I’m still just a little anemic but not enough to bother me too much and my platelets are slowly, very, very slowly, increasing, up to 84,000 at last count earlier this month (from 40,000 just after we finished chemo in July, normal being greater than 150,000). My white count is still sub-normal at about 2,800 (normal being over 3,000). That’s both the good news and bad. It’s good as when my counts start climbing again, the disease is probably recurring once again. It’s also the bad news because I need white cells so as not to get as sick as I was in January!
I’ve started walking again and have been inspired by my early successes in the short 5K and 5 mile runs, to sign up for a TNT fund-raising half marathon in May (check out the link below; if you can spare $25 or so, I’d very much appreciate it, and so would many other folks with leukemia). We’ll see if I can actually do it. I’m walking pretty well with good tolerances to the distances (back up to five miles or so thus far) but I notice that after the walks, I frequently develop general body aches, not in muscles actually, but all over my body and sometimes I feel sick for a day or two afterwards. I’m wondering if this is some prolonged chemo effect and if it’ll wear off. I’ll be asking my oncologist when I see him again.
I have to wrap this up and get it into the electronic mail, as we’re leaving on a long-planned trip to Antarctica later today. Typically of me in my retirement years, I haven’t even finished packing so I have a lot to do today. In former times I’d have had multiple lists made and things out and organized days ahead of time, but no longer. Hopefully I’ll have everything I need ‘cause once we get down to Antarctica, there are no drug stores, no shops, and nothing where one can pick up the things you left behind.
Thanks to so many of you who wrote messages to me after my last letter; my cousin Curtis in San Francisco, Jane in Iowa, Amber in Houston, Liz and Steve in Englewood, CO, Brad and Ann in Iowa, and many more. I love hearing from you guys, and my failure to respond was a function of Christmas closely following my last chapter and then the month of illness that followed, which allowed all your messages to get buried in the e-mail queue. It wasn’t for lack of appreciation of your messages, which I really love to get, but for lack of discipline on my part.
And that’s just about all for now. There’s always more later. Perhaps a report on Antarctica in the coming months….
Dave
http://pages.teamintraining.org/ntx/ntrails09/deckberg
www.adventureswithleukemia.blogspot.com
“The whole aim of practical politics is to keep the populace alarmed and hence clamorous to be led to safety, by menacing it with an endless series of hobgoblins, all of them imaginary.” H. L. Mencken
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