Saturday, June 18, 2011

Here We Go Again

Regime change coming on Monday. The consensus recommendation of Rifkin and his colleagues at the last ASCO meeting (American Society of Clinical Oncology) is to put me on a regime of vorinostat and velcade along with my every other day prednisone. Vorinostat has been around for awhile but hasn't been used extensively in treating myeloma. The results from a few trials, however, are quite promising. It is an HDAC inhibitor which appears to enhance the efficacy of velcade, even in patients who have become resistant to velcade. Histone deacetylases are a class of enzymes that interfere with certain proteins. When given with velcade it has been shown to increase cancer cell death. The clinical trials in which it has been tested have generally included patients who have had extensive treatment, like me. So, this starts on Monday. I take vorinostat orally for 2 weeks and during that 2 weeks I go to the clinic twice a week for velcade shot. Then a week off and start the 2nd cycle. This will continue as long as I can tolerate the drugs and we are making some progress in reducing the myeloma. Rifkin decided to go on this course because it appears the final regulatory approval for open access to carfilzomib will take some time and I don't think he was comfortable delaying treatment for me. I agree.

I'm schedule for another bone marrow biopsy in a week to determine state of my disease. I doubt much has changed because I have difficulty holding my red cells and platelets. I attribute it to the bone marrow being packed with myeloma. I've had 2 transfusions in the last 2 1/2 weeks, the latest being yesterday. But that hasn't stopped me from riding my bike daily. I now log between 15 and 20 miles and have my sights on 30 miles (did 22 miles this morning--day after the transfusion. Blood doping works!).

I feel like I've finally recovered from the cytoxin onslaught and my days feel busy, even though they are quite slow in comparison to all of your busy lives. But it's nice to have the energy to get out and ride the bike or go out to lunch or even to an occasional baseball game. I've wanted to go out to NYC to visit Catherine but Rifkin still has me on the no fly list, so Catherine will be coming home in a few weeks for a short respite in the mountains with the family.

Best to all and Happy Fathers Day to all you Dads.

Wednesday, June 01, 2011

Diet, Drugs, and Herbs

The prisoner (me) has been given a temporary release from house arrest. Nine days without going to the hospital or clinic feels like a vacation. And I don't have to return until next Monday for lab work. Blood counts were good today. White count 3.1 (NORMAL, which is unheard of for me. Platelets up to 58--not near normal but clearly on the rise. Hematocrit and hemoglobin were 8.2 and 24, which would usually mean a transfusion. But today Rifkin gave me the option. Hmmmm. Spend a day at the clinic getting 2 units of blood or go home, go for a walk, etc. Not even close. The doc thinks the red cells will go up over the next week and I decided to make my bone marrow do a little work. We'll know on Monday. I'm still in line for the new drug, carfilzomib, to be given under "beneficial use." Rifkin estimates 30 days before the final paperwork is processed. We ended the exam with him accessing the internet to see what info he had on a new drug I asked him about: ACY-1215. For those in the now, this is an HDAC inhibitor. A new stage 1 and 2 clinical trial is beginning at Dana Farber in Boston. He promised me he would return from his latest conference this week with more info. Then he asked me to do a review of new convection ovens, given my apparent proficiency on the internet.

I am wondering whether my new diet has anything to do with my normal white count. I have drastically reduced my consumption of beef, pork and chicken (not totally eliminating it as I need some red meat for my red cells). I also am drinking a daily juice cocktail of carrot, apple and beet juice--recommended by my mother. And I'm taking a whole host of herbs and roots, which I compiled from a variety of resources I've acquired over the years: curcumin, Omega 3, 6 and 9, flaxseed and olive oil, selenium, red clover blossoms, yellow dock, burdock root, vitamins D, B-6 and B-12, and probiotics. Whoa! Susan wonders whether this is too little too late. I say it's just in the nick of time. Whatever. My energy and white count are up.

Had a nice weekend. Brother Mike (the donor) came for a short visit. We took in a Rockies game and had a relaxing weekend just catching up. So that's the status.
Best to all of you.