The First two years

As I am going now into a more elaborate and very long treatment (see below), and it may harder to answer individual e-mail queries about my health, we decided to put updates on the development of my illness in this blog form, which mostly Edna will write. Still, feel free to send us e-mails – it just may just be that we will take longer to respond. 

Let me start with a short summary of my illness in the past 2+ years since discovery, to put everyone on the same page. I was diagnosed with Marginal Zone Lymphoma (MZL) in July 2017, following severe anemia. MZL is an indolent, non-Hodgkin’s lymphoma, which sometimes is not even treated, when confined, as in my case, to the bone marrow. However, this cancer and other processes in my bone marrow had a major side effect of arresting my blood generation (first red blood cells, and later all bloodlines).

During these two years I had four different treatments (one biological, one immune therapy, and two different chemo therapies), lasting a few months each, to take care of this problem. Each was good only for a month or two, and then the problems repeated. So in between I needed either transfusions, or high doses of steroids, to keep my blood generation. Throughout, my doctors at Memorial Sloan Kettering and at Princeton, as well as other experts we consulted, all agreed on this sequence of actions. 

The failures  of the treatments led to evaluating me for a bone marrow transplant, and a matching donor was found a couple of months ago. A bone marrow transplant of course involves significant risks. As my last treatment was still ongoing, and we hoped for improvement (or of finding yet another treatment, although options were running out), it was not clear if or when it will get to a transplant.

A major change occurred in late July when my most recent bone marrow biopsy showed that my cancer seems to be transforming to another kind: Diffuse Large B Cell Lymphoma (DLBCL). This is a more aggressive, fast growing cancer, and clearly will not remain in the bone marrow for long. It has to be treated immediately, and the doctors are unanimous I should have a bone marrow transplant soon thereafter.

I will probably start a targeted chemotherapy at the DLBCL very soon, which will take a couple of months. Then the transplant, for which we will need to move to NY to be next to the hospital for about a year, much of it, at least in the first few months, in relative isolation. What will actually happen will appear in subsequent blog posts. As in the past two years, and probably much more so, lots of challenges await us, but we are ready, and optimistic!