Jan 02, 2014 - 2:27 pm
I'm nearing the end of this study. Next week I have my blood tested (for the 9th or 10th time), then I have 1 more 6-week period on the drug, then the final CT and blood test and go off the drug. I'm pretty sure I was on the drug and not the placebo. At least I hope I was, since I haven't felt great this year. It hasn't been too bad, but it hasn't been a great year for me health-wise. I'm hoping I'll feel a lot better when I go off the drug. It's been so long since I was healthy, I'm not sure what that might feel like. In November, 2012 my tumor was found and the doctor dance started. My tumor was removed in early December. Recovery was going on into January, then I started this drug trial.
I'd like to hear from others who elected to do the Everest trial. This trial was for those who had clear cell RCC and had had a nephrectomy (I think partial was ok also), and would take 10mg Everolimus/Afinitor (or placebo) for 1 year.
When did you start the drug? How long were you on it? When did you stop/finish and why? What side effects did you have?
Did you feel better after you went off it? Do you have any long-term effects? What is your follow-up after you completed the trial?
My side effects haven't been too bad. I had a very few isolated mouth sores (just 1 now and then) towards the first few months. I had some nausea, but mild and not all the time, also mostly in the first few months. The only thing I can say that has been ongoing since the beginning, is just a feeling of not feeling well, not feeling "right", and not feeling good. Also, low energy. I'd say some very, very mild nausea, but just kind of there all the time. When I was busy or my mind was occupied, I'd forget about it, but when I paid attention to how I felt, I would notice it. My blood tests were all pretty normal (for a person with 1 kidney). My creatinine has been 1.6-1.7 all this time. My hemoglobin and RBC were just on the edge of low (often reading 1 number below normal), but my oncologist has said that's normal for a person with 1 kidney. The rest of my blood work has been fine.
I haven't seen many posts from those on the study. Please, if you could, update us by posting here. I'd love to hear from you.
I'm not sure what my next step is. I drive quite a distance to be seen at City of Hope by an RCC specialist, Dr. Pal. I'm not sure if I want to keep doing that after the study is over. Unfortunately, there's nothing in Orange County where I live with regards to RCC specialists. I could be followed by a general oncologist, or travel to San Diego, or Los Angeles (UCLA or Cedars Sinai). There are options, but they are all 1 hours drive away.
I think I'm going to throw a party the week after I finish the trial.