The fatigue has a way of blurring the days. I have to keep careful notes on my medications.
I've asked the docs if the Sutent could be diminishing my right eye, and they said, not that they know of.
It's also becoming obvious that Sutent affects the skin differently than Timsirolimus, so we are trying some new palliative ways, like gloves with lotion on the inside.
I've started to make contact with other patients with RCC or pRCC. I can't say that it is an exciting process, there is a lot of web style hoops to jump through, but it does feel like something I have to do. Siddhartha Mukherjee's book, The Emperor of all Maladies, made it so clear that the world of the patients and the world of the professional health care and research people are very different, and that patients have more freedom to speak their minds than do the professionals. I shouldn't hope too much, but I do hope to learn of some other avenues that patients have tried. And it is encouraging to see that some do survive for years.
I don't know what I have to offer except my experience and my company. Perhaps that will be enough.
