Tough News But We Continue Onward

We saw Dr. Rifkin today and went through the results from the bone marrow biopsy and the bone scan. The transplant is categorized as causing a minimal response. In fact, the degree of cancer/plasma cells in my bone marrow is around 30%, which is what it was in early October, in late August, and early August. We started in late March at 65% so there has been some progress, albeit all prior to August. In essence, the transplant didn't work. So, I will be starting with a new drug: velcade. This chemo regime is part of a clinical trial for which Dr. Rifkin is the principal investigator. I will start in mid January. I receive it through a shot given IV every 1st, 4th, 7th and 11th day--which consitutues one cycle. then a week off. I will go through 4 cycles, which will take about 3 months. The potential side effects include neuropathy (tingling and shooting pains in feet, hands, legs), nausea (which can be dealt with with medication) and low platelets and/or white cells, which they can also deal with. They will monitor my response every 2 weeks. I will also continue with the zometa, and received an IV of that today. As a result of going on the velcade, however, I will have to postpone the prostate surgery as the velcade would intefere with the healing from that surgery. So, I got another shot of the lupron today (hormone). So far, that has been effective in holding back the spread or growth of the prostate cancer.

Dr. Rifkin also said that if my response to velcade is good, then we are probably looking at another transplant in 6 months or so. This time he would like to use stem cells from one of my siblings. So, Mike, Tom and Kathy, you can expect to receive in the next month or so a testing kit or directions or something like that, to ask you to get your blood tested to see if any of you are a match for me. This is called a mini allogeneic transplant and although not as risky as a transplant from a stranger it is still much harder on me than the autologous. But, so be it, if that is what is necessary. I'll just have to work out a little more at the health club before the transplant to get in better shape.

There is a small bit of good news in all this. First, the skeletal survey (bone scan) does not show any further lesions or invasion of the bone by the myeloma as compared to the survey done in August. That survey showed two small lesions in each humerus, which were of no concern to Rifkin. I also learned today that, although I have a genetic abnormality that is at least partially the cause of this myeloma, it is not an abnormality of chromosome 13. An abnormality in that chromosome results in a very poor prognosis. I have known about this for some time, but quite frankly have not wanted to ask my doctor, for fear of the news. But today I asked and got the right answer.

So, I have some work left to do. Susan is quite understandably upset, but doing OK. The girls are also upset but their positivity will return shortly I am sure. (they are both curled up napping on the sofa next to me--wanting to stay close I suspect--this is so hard on them; they are quite understandbly scared, but want so desparately to be strong and supportive for me. As I have said before, this is one of the most painful parts of this--seeing their Dad struggle with this disease) We all know that this is a long road, and sometimes our hopes blur that fact. It has been difficult and I think we would all like a break from the underlying stress of it all, but that does not seem to be in the offing at this point. But, I am still feeling fairly well and hope that I can continue with my health club regime and just being able to go about my life as best I can. Stick with us and someday we will look back, shake our heads at the ordeal we've been through, and tip a glass of wine to our endurance, stamina, perseverance, friendship, love and support. I love you all, and I have confidence that this new year will bring unexpected blessings to us all. Dan