Avi's Lymphoma

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 las...

Sorry for the long silence, but as promised, I planned to write only when there is real news to tell. The two months since the last post continued to be uneventful (that is, if you ignore the COVID- 19 epidemic and its drastic effects on most of the world's population, which are beyond the scope to this blog). I continued to feel better, with various minor symptoms I discussed as bothering me subsiding further. I am physically well, and moreover, mentally well - being able to work again more or less full time.   So, the next question, for which we had to wait this long, is what is happening inside my bone marrow. The next major milestone, my 6-months bone-marrow biopsy, happened on April 24, and today, after all reports from the biopsy arrived I had a conversation with my doctor. Basically, all the news continue to be good. Main one — no signs of cancer! Otherwise, it looks like the donor cells took over completely and are working just fine. Several of the meds I am on were taken o...

As news gets better, the rate of posts in this blog will naturally go down. Please feel free to send us e-mails whenever you feel like.   So, what’s new? We had another day of visits to MSK in Manhattan yesterday. As usual we went on Thursday evening to feast and stay with other friends of ours, this time in Long Island City (hence the Manhattan view from the East in the picture). So, for the first time we took the East River Ferry (in one direction), and walked to Queensboro bridge (in the other). Even though the main purpose is medical, these bi-weekly trips are certainly great social events. One visit was with my dermatologist. Since my skin improved so much (the various creams, possibly also correlated with the reduction of swelling in my feet and improvement in my neuropathic issues) , she “fired” me as well. It seems that I am done with all specialists, for now at least! Which brings us to my transplant doctor, who I will continue seeing for a while. This mee...

Well, it will not be quite like the Beatles famous song, but I will describe our day in the life at MSK last Friday. And, as I just got a new permission, one more translation. We knew it would be a hectic day - appointments started at 7:30am and ended at at 5pm, with hardly a breathing (or eating) space in the middle. Further, they were at several different MSK buildings in the upper east side of Manhattan, some 20 blocks and 5 avenues apart, to add more spice. So, we spent Thursday night with a friend, and left really early to be on time. Naturally, we went to the 74th and York Ave. location, only to discover that we should be at 53rd and 3rd Av.e But this was our only mistake that day. Plenty of cabs and walks between them. First was the neurologist. This appointment was set up a few weeks ago, when my neuropathy symptoms were much worse. I hoped to get more treatment ideas regarding my neuropathy, or at least prediction of the future. But as Edna predicted, we gained nothing –...

I have probably mentioned already that the first “milestone” (whatever it means) after transplant is the +100 day. I guess most serious problems (including death) happen in that period. Also,   around that time they perform the 2nd bone marrow biopsy, mainly to look for signs of the cancer returning, and of course for the performance of the new marrow. I had mine last week. Well, the major news, which we got yesterday (I was waiting for it before writing this post) is the preliminary report, which says that they found no sign of cancer. The next bone marrow biopsy is 6 months after transplant, and the one after it is a year after transplant.  Otherwise, the skin and neuropathic problems I wrote about last time continue to disturb my sleep (and waking) hours. But it seems that the new lotions and medications, partly through experimentation with doses and combinations, are starting to help. We'll see how far it gets. The picture today demonstrates one record broken ...

It is probably impossible to predict what will become “routine” for us, but clearly, we are not there yet. It seems that now our number of MSK visits increased, with the symptoms I described last time (neuropathy, rashes and swelling in my feet and ankles). This coming week we will spend 3 days, visiting various MSK facilities to see a physiotherapist, lymphedema expert (both for the swelling), and dermatologist (for the rash). Also, I’ll have the 3-months post-transplant bone-marrow biopsy, to search again for any sign of cancer, and more generally see how the new immune system is doing. We spend a lot of time on the road, and while being excellent quality time, we sure hope that we’ll need to drive for far less for such purposes relatively soon. If you are wondering, I can drive perfectly by myself, but Edna prefers to come to all these meetings and hear herself what all these experts are saying, plus is still worried something might to me which will require her presence – the i...

Another week at home passed by. And just as it started, we got a taste of what my doctor predicted, namely that GVHD will start to manifest itself one way or another. He was even more specific, saying that rejection symptoms typically start around the 3 rd   month after transplant, and that usually the new immune system attacks the skin, the mouth or the digestion system. For me, it was the first two. I have developed some sores on my gums and tongue, and over the past weekend developed a rash in many parts, especially hands and feet. The combination of these, some quite painful, with the neuropathic pains, gave me a few sleep deprived nights. Describing these in e-mail to my doctor (they are very good with reading and responding to messages!) caused him to call me for inspection in NY.   Well, medicine does have solutions to some problems (certainly the transplant itself is a huge example): a combination of a new neuropathic medication prescribed by a pain doctor (MSK has...

A week at home passed quickly, and we are getting back into the old routine. Edna is back to work (she never stopped working in NY, but now she is actually going to work). I went to IAS only one day this week, just in time to see the geese who visit every year to poop all over the Institute’s lawns. Then I realized (and this was stressed in an IAS-wide e-mail) that the flu virus is very active there (as everywhere else), quite a few people were sick and I had better stay away. Some of my group members came to visit me at home, one at a time, and sitting at safe distance. I plan to continue going, but not too often, mainly on seminar days, until it is safer. Edna and I had friends at home, went to a restaurant once, and of course visited our favorite Small World Coffee in town, which we missed dearly, a few times when it is not too crowded. The balance between avoiding infection and just living has to be maintained somehow – I hope I don’t catch anything! The medical visits natu...

Thanks to Tal and Yaeli who carried, drove, carried some more! Thanks for all the balloons, welcome home decorations, and good wishes. It's good to be home!

Another week flew by. All visitors left a week ago, and so did Edna who went for a week to Israel (as I write this she reported landing back at Newark, and will soon be back here!). I stayed at home with Yuval for the week. This quality time was spent on walks, biking, museums, movies, and long chats on everything, including math! We went a few times to restaurants, something I started gently about 2 weeks ago. Like movies we try to go to places at times that are relatively sparsely populated, although we don't always succeed. And like museums, I wear my mask, except when eating... Of course I eat only cooked food, but there is plenty to choose from. Yuval also cooked most evenings. Unlike his siblings who were always into cooking, for him this is a relatively new hobby, but he is a quick study and it was all yummy! My blood numbers are improving, and I am keep getting stronger physically. Even my fatigue is getting better slowly, and I can concentrate for longer periods. I re...

Happy holidays This is certainly happening here. Most of the family is visiting again for a week — here is some of what we did: https://photos.google.com/share/AF1QipM4rpBa1m72cCTMbJUbQ1PGl4fjiyeu5cljj9acz8I2U3N-FOleVDctP-mWVC1ahg?key=SkRmNS10M1U1NWRTZ1J5VkxuWm92RXlZeWdBQnlR  One highlight for me was riding bicycles again after a very long time - we went for an hour around Central Park. Pics are better than many words... Happy New Year!

Things here continue to move along nicely. Here are a few more milestones from the past week.   Yesterday I got the last scheduled treatment at the hospital!     From now on, if all goes well, it will be only blood tests.   The results of these continue to be very good. For example, my hemoglobin level went above 10 for the first time since the beginning of this illness (there was a blip during one of the early treatments when this happened, and soon fell again, but mostly I was hovering between 7-8). I have no idea where above 10 this level will stabilize (normal for adult males is between 13 and 16), but being very anemic for so long I can feel and appreciate this increase in the ability of my blood to carry oxygen (e.g. my heart rate is going appropriately down, which affects any physical activity).   Another piece of good news came from the pathology report of my bone marrow biopsy 2 weeks ago. Recall I explained the notion of chimerism – basically what...

A quick post as there is nothing much to report. Avi is doing well and is getting stronger. He even started growing back some facial hair! The last ten days were very uneventful – we took some walks, saw many friends, had our first movie outing (on Tuesday afternoon, the theater was almost completely empty). We saw Knives Out which we both enjoyed a lot and highly recommend. And of course Avi had blood tests every 3-4 days, and the numbers are all steadily improving. He also got his weekly Rituxan infusions – will get the last one on Friday. Yuval and Vivian will arrive on Thursday morning and stay with us. Einat, Sahar, Tamar and Nuri will arrive Friday. They won't stay with us but we plan to hang out together as much as possible. Tamar will surely love the Christmas decorations and festivities —it will be a novel experience for her.

It is getting hard to find “news” as the past week has shown, and so the rate of our posts may go down. Be assured that this is a good sign! As some of you may know, transplant teams at hospitals like to name the transplant date as a “second birthday’’. My transplant was on November 5, so I am officially one month old! And I got a very nice gift for it. On Tuesday, on day +28, I had my first bone marrow biopsy after transplant. While most results will take a week or two to arrive, my doctor (who is at a conference in Florida) asked his nurse to call me with preliminary results that excited him: no lymphoma cells were found! It is the first time in 2.5 years that my marrow seems cancer-free!   This disappearance of cancer cells may be due to the EPOCH chemo I got just before transplant (a biopsy before the last round of EPOCH showed the cancerous cells decreased to 0.36% of all white cells, and perhaps the last round killed the rest).    Or perhaps the new immune ...