b i r d d r o p p i n g s

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.

I went today for CT scans to measure the progress of things in my battle with kidney cancer. The last set of scans (from January) had shown tumor growth for the first time since starting the targeted chemotherapy in 2008, so we changed to a newer drug, Votrient, and after three months of almost continuous use (600 mg/day), I have learned that the tumors are again shrinking. I meet with my oncologist tomorrow to discuss this all, and will post a further update with more details then, but for now, I am quite happy and off to play some poker to extend my lucky streak.

I’m not taking this evening my daily dose of Votrient, the targeted chemotherapy drug that I have been taking for the last two months, in my battle with renal cell carcinoma, which I prefer to just call kidney cancer. The side effects, for me at least as this is always different from person to person, have been much easier than those with Sutent, the previous drug I was taking, but a new issue has popped up. A rash on my legs that has turned into pretty much open sores, has me visiting the Doctor tomorrow to figure out if this is a new side effect or something unrelated, and we are halting the chemo as a precaution.

I have not updated the blog in a while, so here is the latest on my cancer and the side effects of the targeted chemotherapy, Votrient. I do not have CT scans scheduled until late April, so we really don’t know where we are with tumor growth.

Fatigue: While I am not a bundle of energy, I have much more get-up-and-go than I did with Sutent, but still a mere shadow of my former self pre cancer. I spend most of my time sedentary, working/playing at a TV, iPhone or computer, and am excited to get my iPad in a week or so. The weather is getting warmer and I am looking forward to at least getting outside for an occasional walk and a ride in the convertible. I continue to get short of breath if I over exert though, and back to back trips up and down stairs forces a sit down.

Pain: I am in pretty constant pain if not taking drugs to control it, but when I take the prescribed dosage I am practically pain free. The pain is in my chest, and goes all 360 degrees around, feels similar to what I used to describe as low back pain, and it can get pretty bad. The consensus medical opinion seems to be that the pain is coming from three possible sources: as a drug side effect, as a cancer tumor growing, or as just plain old age, pinched nerve, pulled muscle kind of thing. I believe it is mostly cancer tumor related, but there is some pain from all of the issues. Some days when I know I have nothing better to do, I do not take any pain medication just to see just how bad it gets before I give up and take a pill. Time release morphine and Vicodan control this just fine for me, but the usage of these drugs brings major problems in to life, and I know that as my disease progresses I can look forward to even more pain control medications. I do not want to sleep my life away and sit all day slobbering on my remote control.

Appetite: The Votrient has really done a number on my appetite. Believe it or not I have to sometimes force myself to eat. Part of this is the taste-bud damage that has been going on for almost two years of these anti-angiogenesis drugs. Things just do not taste the same as they used to, not necessarily bad, but generally bland. My sugar addiction is one of the most powerful things in my life though, and so far, it at least keeps a few calories coming in to my body. I have lost 35 pounds over the last few months, and if I keep up at that rate, I will weigh the same as a normal person in 5 years.

Diarrhea: Sutent kept me afraid of being too far from a friendly bathroom, but the Votrient seems to be much easier, and I think I can now officially declare that it is no longer a side effect. The pain killer constipation effect may be the cause, but I am in balance so am happy.

High Blood Pressure: Daily Norvasc, Coreg, and Torsemide keep my blood pressure under control and I stay close to 125/90.

I have learned my way around the American healthcare system in the last few years. I have no problems with how my personal medical care is paid for, and how it all related to what they have been hashing out in Congress with what they call healthcare. I am working on a new rant about all of that and it is soon forthcoming.

After sixteen months fighting my kidney cancer with the targeted chemotherapy drug Sutent, I sit here this evening having just finished my first day on the new drug I will be now taking for the foreseeable future, Votrient. Votrient is GlaxoSmithKline’s trade name for pazopanib (paz OH pa nib), and is similar to Sutent in that it is a targeted anti-angiogenesis drug. There are differences in Sutent and Votrient, of course, and while I did on and off cycles with Sutent (because the side effects become pretty unbearable at the end of those 28 day on cycles), Votrient is just take the medicine twice a day (ramping up over the first few weeks from 400mg to 800mg a day) until it stops working… no scheduled breaks, but the side effects are supposed to be much milder. The operative words there are “supposed to be”.

At the time I started taking Sutent I found a very few resources online of patients detailing their side effects, and the doctors would only tell me that everyone is different, and they were correct. Today there are many more good folks out there detailing their battles with the side effects of the cumulative toxicity of the drugs we consume, as well as their problems with government and insurance plans with these very expensive drugs that are use to prolong my life.

Typically for me I am like the first real patient ever taking this drug outside of clinical trials. I am able to get all of the clinical trial data about side effects and things like mean times before failure, but they just started selling this stuff in December. As I have over the last year or so, I will continue to post my experiences in the hope that they might offer some other person some knowledge about what to expect.

If you happen to be reading this and have some firsthand knowledge, like you were in a trial, about what I am going to be looking at over the next few months, please comment to this post. At the present time I am feeling about as good as I have over the last few months, and would just love to have confirmation from someone who has been down this path that I have a shot at continuing to feel at least this good. Better would be nice, but I don’t want to sound greedy.

I am just starting my break after finishing ten cycles of Pfizer’s cancer drug, Sutent, it’s Thanksgiving Wednesday and I have an appetite, and am so very thankful to be sitting here writing this blog entry. This last cycle, with the additional week break between day 14 and 15, has been probably the easiest one so far. I remain too tired to get out of my own way, am retaining fluid and have feet too swollen to put on normal shoes, am in minor pain (only had to go to Morphine three times this cycle) but it is generally controllable with low dose Vicodin. The taste issues become less and less… I am not sure whether I am just adjusting but things don’t taste right, but I no longer find the taste so offensive. Late in the cycle my appetite goes completely away, but my long standing sugar addiction manages to still kick in, and I get plenty of nourishment, just not the kind conventional wisdom says I should be getting.

I go for another round of CT scans in mid December, and I’m pretty sure that my cancer is not progressing yet. I just have to believe that I will know when it starts spreading and growing, and it is just not there yet. I’ll post results here as soon as I get them.

Since my last posting I have upgraded my computer systems and am running a combined Windows 7 and Snow Leopard system that works for me. I have to say that Leopard to Snow Leopard was hands down easier and way cheaper than Vista to Windows 7, but both do the job just fine for me, and at the end of the day they are only tools.

We finally got cell service in St George (Port Clyde and Tenants Harbor), but not for us unfortunate iPhone AT&T users, but I have it on good authority that it is forthcoming, and that news gives me hope. My soul is going nowhere until I can go to my poker game in Port Clyde and use my iPhone, so my message to AT&T is: Take your time, I’m enjoying life just fine.

Seven cycles of Pfizer’s oncology drug, Sutent, later I can say that things are improving a bit. I don’t know why, but I seemed to have things a bit easier this round. The taste buds did not go as fast nor as far, and ice cream almost tasted good through the entire cycle. I even managed to get to Primo for dinner while Jay and Anne were here, and things actually tasted good. The hand foot problems were almost non-existent, but the fatigue and dyspnea were still there, and daily doses of Vicodan kept the pain in my back and chest bearable. I go for new scans in August and we just wait and hope they show that things are stable.

I am really irritated with the woman who went up to President Obama during his recent town hall meeting on healthcare issues and claimed she had all kinds of problems with her health insurance because of her kidney cancer, trying to get sympathy for the plan she wants. Her story is full of holes from beginning to end, and it infuriates me that people think they need to lie and make up stories to further their cause. What is so silly is I am for the same cause. All I had to do was ask Pfizer for help and they are giving me the drugs to fight my kidney cancer. Medicare takes care of my doctor’s visits, lab work, and scans, but I believe I actually pay more in premiums than I get in services.

Had a great 4th of July with friends down river in Cushing, and the sun actually was shining most of the day. Now that summer in Maine has ended we are looking forward to a mild autumn and a not so cold winter.