Since my last posting it sure seems to me that there have been a lot of things going on in my world. I was taking Nexavar (sorafenib) in my ongoing battle with advanced renal cell carcinoma, and the side effects were becoming increasingly unbearable. Early on I had suffered with fairly severe hand-foot syndrome, and the fatigue and dyspnea (shortness of breath) that are typical to Nexavar, but lately I had pretty much beat back the worst of the hand-foot issues. My feet were still tender but the rash and pealing skin had stopped.
Friday, May 13th, on my way to poker, carrying and using O2, I stopped at the Harpoon for a bar burger, and right out of the blue had a shortness of breath attack that had me saying “get me to the hospital” but before we got there it had quieted down, so I just went home. Two similar attacks over the weekend had me seeing Dr. Ramdin and Dr. Pierce the next week, and they concluded that I was suffering from congestive heart failure. I stopped taking Nexavar after having taken 400mg twice a day for four months, and things very slowly started to get better.
The CHF problems and some blood lab tests ended up with a Friday evening call advising an immediate visit to the emergency room for CT scans looking for possible blood clots, and those scans were transmitted to Australia to be read by a service called Nighthawk. They came back in 30 minutes negative on the blood clots. My daughter, Wendy, and her husband, Charles, were here to help me through that episode, and it only delayed lobster dinner by a couple of hours.
The Australian radiologist pointed out a lesion on one of my ribs and it turns out he is correct. That rib lesion is in all probability more metastases from the kidney cancer, and was in fact evident on my earlier scans.
The next drug Dr. Ramdin is suggesting is Afinitor (everolimus). I applied for financial assistance from the plan set up by Norvatis, the manufacturer of Afinitor, and was told that inasmuch as I had drug insurance coverage, I would only get what my insurance covered and that is one third paid by me as a co pay, which is $3,000 or so for my part. I do not know why Novartis does not do what Pfizer and GlaxoSmithKline have been so generously doing for me.
Dr. Ramdin also has referred me to see Dr. Choueiri at the Dana Farber Cancer Center in Boston. I’m going down for an appointment with him to discuss all of this on July 5. I am excited to be able to meet with another one of the top doctors in the field of kidney cancer.
There is a new drug that Pfizer has in the pipeline, axitinib, that looks to be the one I would want to be taking, but it is currently only available in clinical trials, and generally they don’t want guys like me that have already taken all of the other anti-angiogenesis drugs. I am hoping that Dana Farber can get me on axitinib on some trial basis.
I continue to use the Fentanyl patch system (25mg/hr, every 72 hours) to control chronic pain and am fairly comfortable and only rarely have to use Vicodan to control breakthrough pain. Coreg and Norvasc keep my blood pressure in control, and Lasik and KCL work as a diuretic with the CHF. I use Oxygen 24/7. I am patient #1768 in the Maine Medical Marijuana program ($100/year and a bunch of paperwork later) and this year’s crop is looking very nice.
I have had a steady stream of family and friends visiting and am expecting more through the summer. I always seem to feel better when company is here. I am still driving short distances, walking even shorter ones, and do serious planning around the stairs. It is summer in Maine…the way life should be.