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

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 Votirent, 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.