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Almost four years to the day, after a consultation with Dr. Healey, the radiation specialist at Maine General Cancer Center in Augusta, who could possibly stop the pain in my back, I have decided to call in Hospice. The cancer that has spread to my spine has broken my back, and radiation will take a month to stop the pain, and by the time the pain stops it will have spread to other locations.
Over the last few days we have moved things around and now am living on one floor. Hospice has provided me with a hospital bed, a power recliner that assists me in getting up and down, monitoring equipment that sends vital signs to the nurses on a daily basis, and very close monitoring of my pain control. It looks as though I will be quite comfortable over the next few weeks.
I have lived a wonderful life. I will be leaving behind four lovely children and four grandchildren as well as dozens of close friends and I hope they enjoy telling stories about me. Feel free to leave them in the comments.
Since my last post, I have been to Boston to visit the Dana Farber Center and have decided to stop all forms of chemotherapy… three years and four drugs were enough.
I have been struggling with pain control, and went on August 25 for an MRI that showed that the cancer has spread to my spine and I am in severe pain. I am heading up to Augusta, Maine, on Monday to start radiation treatments to try to help with the pain which is uncontrollable with normal amounts of opiate drugs. All I manage to do is to sleep it away.
After the radiation starts I will post the results. Thanks for prayers and good thoughts.
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.
While it will never play as a Scrabble word, it is my term for the feelings one suffering from advanced renal cell carcinoma experiences every three months as CT scans are done to check the progress of the disease. It really is quite simple… the cancer is either growing, shrinking, or stable. One hopes for shrinking or stable and fears growing.
My preliminary results, read to me over the phone by a nurse, was the wonderful news that my disease is stable. I would have never guessed that this would be the case as dyspnea (shortness of breath) has been getting worse and worse in my life, and I had convinced myself that the cancer was again growing, but, lucky me, the Nexavar is doing its thing. I am meeting with my Oncologist Monday to discuss things further and view the actual scans, but I know the plan will be to continue the Nexavar chemo like treatments for at least the next three months.
Dr. Motzer, who I met with three years ago in New York, speaks on the latest:
After two weeks on Nexavar I started getting Hand-Foot Syndrome (a special type of rash that messes with the palms of your hands and soles of your feet, and just to make it really bad, your scalp), so I went on a one week break. That week is now over, the rash is better, so I’m starting up the therapy again.
The other known side effect issues (pain, fatigue, loss of appetite, etc.) are yet to raise their ugly head, but then we’ve only been on half dosage.
Winter will soon be over, the snow will eventually melt, so plan your trips to Maine (it is called vacationland for a reason) to visit Richard. I do enjoy visitors.
Only those who seriously want to try to understand targeted anti-angiogenesis therapy for advanced renal cell carcinoma (Kidney Cancer) should try to read this: British Journal of Cancer RCC review
I spent the better part of the last few days in and out of PenBay Hospital doing lab tests and scans to get base line studies before I start my next therapy, Nexavar (sorafenib). Please keep all fingers and toes crossed for good luck and keep sending good thoughts my way.
I took the first pill last night (after getting thoroughly trounced in my weekly poker game) and so the saga continues.
The bad part of the story is the CT scans that were done to rule out blood clots in my lungs (trying to get a baseline and figure out the shortness of breath issues) show that the lesions in my lungs continue to grow… the largest has gone from 4.3 cm to 5.6 cm in just two weeks. But then, there are no blood clots, so all is not bad news.
I promise to do a better job of posting as things progress.
As usual, it has been far too long since I updated my blog, but here we go again. When I last posted, I was about to start a round of Torisel, which required weekly visits to PenBay Hospital’s Cancer Care Center for the IV treatments. The first few of these were total non events, but the cumulative effects soon kicked in and the nausea, diarrhea, and hand/foot syndrome started and by mid October became unbearable, so I stopped the treatments. I had CT scans done on October 26 which showed stable disease of the tumors in my lungs. I decided to give myself a break for the holidays and stop all therapy until the first of the year.
I went back for another CT scan on January 5, 2011, and it shows some serious growth on a couple of the tumors, but the other five remain stable. Dr. Ramdin, my Oncologist, and I have decided to try yet another of the anti-angiogenesis drugs that are approved to treat advanced renal cell carcinoma, the big words for kidney cancer. I will be beginning it in a week of so… as soon as we get the red tape surrounding the use of these cutting edge chemicals, Medicare part D drug plans, and specialty pharmacy issues handled, I’ll be starting a drug called Nexavar.
The worst parts of this battle I find myself in are the fatigue, and the pain, when not medicated. I have not found a way to handle the fatigue, but I have discovered that Fentanyl patches do a wonderful job of pain management, and now that I am out of the donut hole it is affordable. I have also managed to weave and bob my way through the bureaucracy surrounding Maine’s new medical marijuana law, and that helps with the nausea and appetite issues.
All in all, I think I am quite a lucky man. I am alive and enjoying life way past what was expected 42 months ago when first diagnosed with Kidney Cancer. Keep those good thoughts and prayers coming, they are working.
My apologies for the lack of postings recently, but I have been busy. I have had some wonderful adventures, some happy and some sad but all interesting, at least to me.
My July 26th scans brought me the bad news that the kidney cancer metastases in my lungs were growing, and at a rate that is almost doubling in size since the scans done three months previously. The one in my abdomen remains stable. This means that the drug, Votrient, that I had been taking is no longer working, and I decided today to try Torisel (Temsirolimus), a targeted antiangiogenisis drug that I will be taking weekly intravenously. This drug was developed by Wyeth and is similar in how it works to both the Sutent and Votrient that I have been using. My first dose will be next Monday, August 16th.
I have been therapy free for almost a month now, and have had some interesting side effect stories to tell. I did 180 doses of 600mg of Votrient daily, and I believe that it helped a bit, but with 20/20 hindsight, it was not really worth the trouble. Fatigue, pain, gastrointestinal issues (diarrhea, nausea, appetite loss), and minor hand foot problems made life not real happy, but heavy pain medication (morphine and Vicodan) kept me comfortable, an occasional puff of pot helped with the food and nausea issues, but the diarrhea was a literal pain in the ass.
I lost 65 pounds while on Votrient, but have gained back about 20 since stopping and am enjoying food again. I figure at this rate, in about three years I will be a normal sized person if we can just figure out a way to keep the cancer at bay for that long.
While on the break from chemo, I managed to make a wonderful trip to Georgia with old high school friends, and actually had my entire family gathered for a couple of days. The most amazing thing that I have learned is how powerful the comfort and relief that is gained from such relationships… works way better that opiates or chemo. I remain constantly fatigued and in pain if I do not take the Vicodan, but I am generally comfortable.
I’ll update further after a dose or two of the Torisel.