Now it has really been a long time – over a year since my last post. Over this year, many followers of this blog correctly interpreted this silence as a sign that my health continued to improve, and that I have nothing essential to report. Basically, this is the right interpretation, which is really great news! I got my life back, I have been cancer-free since my transplant, I hardly need any treatments and don’t suffer from anything comparable to my life in the years before my transplant. Indeed, in many ways I am almost back to the way I was four years ago when my lymphoma was discovered.
So, what is this post about? Two main objectives of this blog, beyond updating people about my health in an efficient way, were (1) to remind myself in the future of what I went through, and (2) allow readers who were faced or will be faced with similar health problems to possibly learn from my story. Indeed, despite the first paragraph, there is plenty to tell about the past year since my last post that will serve these objectives.
At a high level, almost all problems stems from the simple fact the transplanted immune system, even if the match is perfect, is inherently limited. You get the stem cells from the donor, and in your body they generate blood and immune system cells. The stem cells have no history of past infections in the donor’s body, and so your new immune system has to learn on the go from infections you’ll experience, and so you are more likely to have infections, and when you do, what you do experience is likely to be more severe as your immune system doesn’t quite know how to handle them. The same is true for babies, except that they carry some immunity from the mother. The other issue, which I must have mentioned before, is GVHD – attacks of the transplanted immune system on various parts of the body. It can also simply malfunction. I was warned of all of these issues, and I experienced all kinds. I’ll relate them more or less chrolnologically.
For about 6 months or so after the transplant I was mainly getting better, both physically and according to my blood numbers. And then a routine blood test in May 2020 revealed that my neutrophils count, a key immune system cell, fell essentially to zero. This was just before our planned trip to Israel for the whole summer. Luckily, there is a remedy: a shot (called Nulasta or Nupogen) which boosts neutrophils production. It did, held up in July and August, until I returned to the US. In the next blood test the same thing happened, no neutrophils, a Nulasta shot and regeneration. After that, this particular problem stopped bothering me.
And then came a serious infection. After 2 weeks of getting weaker and weaker in September 2020 I had the brilliant idea of purchasing an oxygen saturation meter, even though I had no noticeable breathing issues. It revealed poor saturation, and in the next week I also started feeling shortness of breath. With COVID, it was naturally good to avoid hospitals, but I eventually went to the MSK hospital, just in time. It was pneumonia, and I really needed oxygen. As the cause was unknown, I was immediately drugged with numerous anti viral, anti fungal and anti bacterial medications. One of them must have worked, as after 3-4 days I started feeling better. These meds of course prevented a clear identification of the cause, but my doctors suspect it was almost surely PCP, a fungus which exists in many people’s lungs, and with a normal immune system hardly ever bothers them (indeed, almost all infections of the immune-suppressed are by microorganism which already exist in their bodies). I was a week in the hospital, and as in the transplant, experienced the amazing care provided by MSK. I stayed on lots of meds for a few weeks longer, and the whole episode put me out for about 2 months that fall. Since then I had several mild infections, basically simple colds, and found that instead of a few days, they take a few weeks for symptoms to disappear. But luckily all were mild and eventually passed without more drama.
After that episode I had a really good month, in November. But then, as I was warned, GVHD hit. I am classified as having a chronic, mild GVHD, and as it has been affecting various organs for over 6 months, I expect that as the word chronic suggests, it is here to stay. Persistent symptoms include various joints and muscle pains (which are noticeable mainly before sleep or early in the morning), and dryness of the mouth, bothersome mainly at night when can wake me up to sip some water). So luckily, they hardly bother me during the day. And then there are things one doesn’t notice as symptoms. A new shortage of an important immune system cell, called Immuno-globulins (mainly of the IgG-type) was discovered, again in a routine blood test. Now the only remedy is a transfusion of such cells. I have had four already, roughly every 6 weeks (their life-span), and at this point it is not known if I’ll need to continue this forever, or I’ll start generating them again, as happened with the neutrophils.
The worst symptom I experienced during the winter was fatigue. For a period of about 3 months, between November 2020 and February 2021, I was extremely tired and could not concentrate on any mental activity many hours of each day. My doctors are not even sure that it is related to my GVHD, or is something else altogether. I underwent many tests, with no clear indication of the origin. It started quite suddenly, and ended quite suddenly, without any external cause (like change in drugs, lifestyle, diet etc.) anyone knows of. That period was quite frustrating, and I was extremely happy when it was over. Since then I have has small bouts of fatigue, but far shorter and milder than that one. I expect this too will be something I’ll have to live with.
Perhaps the strangest symptom of what I believe to be part of the GVHD attack was a recent one on my skin. Probably starting as an allergic reaction to a mosquito bite, I developed local rashes and blisters in various parts of my skin, mainly on my arms and legs. This has lasted for several weeks, and was extremely itchy (and unpleasant to look at). Hopefully, as I am writing this, it is almost completely gone. During this whole period, since GVHD started, I am receiving Prednizsone, a steroid (which does lots of wonders and also suppresses somewhat the immune system). I started with a non-trivial dose, but in the past couple of months am taking a negligible amount of 5 mg/day.
I probably mentioned before that at around a year after a transplant one gets the same immunizations a baby gets at that age. As my immune system is still partially suppressed (and so is unlikely to react as efficiently to a vaccine as a normal one) this was delayed, and I am not sure when/if I’ll get them. On the other hand, once a COVID vaccine appeared, my doctor suggested I take it, as the risks for the immune-suppressed of contracting COVID is much higher than for most people. I know from several antibody tests I have taken (to be released from quarantine when visiting Israel) that the amount of antibodies I developed was far lower (by factors of 20 or 30) than people with a normal immune system, e.g. Edna. Debates continue if to give a 3rd booster shot for immune-suppressed people (with different conclusions in different countries), and I am sure my doctors will tell me if and when to get one.
Just to end on a cheerful note, let me repeat that while the totality of the summary above sounds quite grim (probably since I have waited so long before writing, and so poured it all in one go), I have managed to live and work normally quite a bit during this period. Most importantly, with the COVID vaccinations my doctor allowed air travel, and so we got to be in Israel (with our granddaughters, and more generally with family and friends) not only last summer, but also for the months of April and July 2021. So, all in all, I consider myself extremely lucky and grateful for that successful bone-marrow transplant!