Rearranging deck chairs on the Titanic

I finished the workup of my leukemic relapse, having had a bone marrow biopsy and PET/CT over the last week and a half and in 2 days visit my oncologist to learn the results and find out what the next treatment regimen is. I had to have another RBC and platelet transfusion last week, less than a week after the last. These have become more frequent making me wonder if my anemia and thrombocytopenia are due to more than bone marrow failure, perhaps hypersplenia, which my oncologist has mentioned as a possibility in the past. Adding to this possibility is that I can now feel a very firm mass in my left upper quadrant that is probably spleen (confirmed by internist last week on routine followup visit, see below). I would think our first step would be to treat the leukemia and see how my counts respond to get a better idea about whether drug-induced marrow failure and/or hypersplenism are contributing to my significant and worsening transfusion dependence. My last count was Hgb 7.6, WBC 57K, and platelets a dangerously low 8K, see photo of my arm from a routine blood test, demonstrating how much we all need platelets.

So I also saw my internist this past week as routine follow-up, primarily on mild hypercholesterolemia and a previous slightly raised PSA. I was very worried about the latter since it could mean I had early prostate cancer, something I certainly did not want to deal with given my leukemia relapse. Thankfully the value this time was normal. My LDL (bad) cholesterol was low and I also had low testosterone (which is funny since one of my company's clients is the maker of a testosterone replacement product). I complained of my quite painful nighttime leg cramps and the doc said to either try CoQ10 (a borderline alternative product found in vitamin aisle that is not cheap) and/or stop my statin since my cholesterol never that high and have no significant or personal family history of heart problems. I asked about testosterone replacement but had to admit any symptoms of lack of energy, sexual interest, etc were more likely due to the leukemia. My doc actually had me laughing (?gallows humor) when he said these problems he was managing were like rearranging the deck chairs on the Titanic. I think that this is no doubt true and now can just focus on getting better with the next treatment, God willing.  

Here is what my internist meant, the leukemia is my main problem and I could be going down, but I am here to tell you, NOT WITHOUT A FIGHT!

T-Cell Chimeric Antigen Receptor pilot trial at Penn

Saw Dr Porter at Penn today, for a second opinion for the first time, thinking I may be interested in the chimeric antigen receptor in vitrio genetically modifying T-lymphocyte pilot trial (I know that is a mouthful, see here for explanation). I have been needing both platelet and RBC transfusions almost every 2 weeks since I finished my 6 cycles of bendamustine-rituximab at the end of March. My last WBC count showed a rising lymphocyte count and I have noticed that some of my lymph nodes have started to increase in size a bit. Dr Porter felt, as does my regular oncologist at Hahnemann/Drexel, that I need to have my bone marrow checked again as well as repeat CT scans, to better determine if my low counts are due only to the leukemia coming back or perhaps in part also bone marrow failure as a treatment-related adverse event, maybe even myelodysplasia.... He suggested that the next treatment could be ofatumumab (a monolclonal antibody supposedly more effective than rituximab) or either rituximab or alemtuzumab (Campath) with high dose methylprednisolone, stating that Campath is not so effective by itself. The response to this therapy would help to determine whether my marrow is showing just leukema or some underlying dysplasia. Stem cell transplant may be an option if it looks like my marrow is not performing well, but it would have to be from an unrelated donor (see prior post - unless I can get my brother to help me out), but If my marrow seems to be OK than an option would be this T cell tiral or perhaps one of the small molecule tryosine kinase inhbitors under development. Time will tell, but not having a good response to B-R after 3 prior treatments with fludarabine shows my disease is advancing.....