Not going in the preferred direction, but trying for a positive attitude

So this past weekend I had no energy, and left the residual fallen leaves alone. I just lounged around watching college and pro football, and eating. Found out Monday my Hemoglobin was only 5.7 so got 2 units of packed cells and felt somewhat better. Still with arm pain and am beginning to thnk it may be related to a recent increase (sadly not a decrease....) in the lymph nodes in both axillae (under-arms). I also have a newly enlarged node in my neck on the right. All of these changes have come in about a week, here when I was supposedly improving and on the maintenance phase of my second treatment course in a year. Although my total white blood cell count is still normal these nodes suggest yet another relapse.

Am to get a bone marrow biopsy next week and to see my new oncologist at Penn, Dr Porter the week after. He had mentioned trying another treatment since clearly not completely cleared of leukemia/lymphoma with the ofatumumab course, with high dose steroids and Campath (alemtuzumab) being high on the list. Campth is yet another story that makes pharma look bad, taking it off the market so can sell smaller quantities to patients with MS, but leaving it available for CLL patients on a free, compassionate basis. Hope the U Penn oncos can get the drug for me, even though it has major immunosuppression and is better for marrow disease than nodes, hopefully with high dose steroids I can get some response. I did another search for small molecule TKI clinical trials but they all want a functional marrow which clearly I don't have, being transfusion dependent now for almost a year.....We shall see...

I will be finding out soon I hope if I have a match on the unrelated donor search, for a stem cell transplant. Thing is have to be somewhat clear of disease to even contemplate a transplant.. I tried one last time to reach out to my brother (who matches me) but have had no response, giving up on him....see envelope screen shot below, tried to make it obvious I REALLY needed his help.

 

 



 

It may be getting time for me to get going on a living will and health care proxy stuff....