After the Everolimus trial

Hi Dutch,

I just finished that trial early last month. I'm also pretty sure I was taking the drug and not the placebo, but I'd feel more sure if I had had side effects in my blood work. I didn't appear to have any (although I haven't had blood work in over a year off the drug, so perhaps I'll see something when I get my next blood tests).

Differences between you and me: I was Stage 3a, Grade 3 and I was clear cell RCC.

I'm surprised. I didn't realize they allowed other types than clear cell, or Stage 4 patients in the study. You must have been NED to start the study, which is good news. Is that right?

I would definitely look for a specialist in RCC. The way I found mine, was I looked for the clinical trials like this one, and then found the contact points for the study in area hospitals/cancer centers close to me. In all cases, the doctors listed were doctors interested in/doing research on RCC. I think other places to look would be to ask people here and on smart patients for referrals in your area, or call the contacts from the studies that are further away and ask them for referrals for somebody closer. You could do google searches of papers/study results and look for doctors publishing in this area. I'd search for key words like kidney cancer, renal cell carcinoma, hematology, oncologist, internal medicine and add in the names of large hospitals/cancer centers and universities or medical schools near you. If you are in a more rural area, you could try contacting the oncology department at the nearest medical school and ask for referrals.

I've been off the drug for a month now. What I understand is that I'll get scans now every 6 months for 2 years, and then yearly for a few more years. I believe part of the study is going off the drug until I have a recurrence (hopefully never). I'm pretty sure there won't be any more treatment if I don't have a recurrence. Wait and see is the next phase of this trial (which is what I would have done before). If I do recur, there is the possibility that I might be unmasked to find out if I was getting the drug or not. Although I understand there's a committee that decides whether I can get unmasked or not, and that it's no guarantee and probably even unlikely that I'd find out if I got the drug or not.

Your local oncologist should have a good recommendation for another opinion. At least he/she should be able to help you find the nearest RCC specialist for another opinion. Does your local oncologist have some experience treating a few patients with RCC? Or is he at least willing to do the reading/research on what's going on to keep up-to-date? Personally, I'd trust anybody willing to do the research/reading and is open to getting another opinion either yourself or willing to call and get advice himself from a specialist.

Would you mind sharing the side effects you experienced? Did you have issues with your blood work? I ask, because I had other side effects like fatigue and nausea, but no abnormalities to speak of in my blood work (like lipids or glucose, etc. I had some slight anemia, but that may just be from my nephrectomy).

Best of luck to you.

Todd

Dutch1 said:

Everest trial

 

Todd;

Thanks for your information.

As to being Stage IV and still includable in the test, all I can say is that they took me.  Yes, I have been NED from date of the surgery to my last scan in November.

I'll take your advice about how one finds the kidney cancer specialists in my area.  Some internet digging is coming up, I can see that.

My oncologist will give me names of specialists to contact, I am sure.  He seems to be on top of what's going on in a number of the cancer fields (including RCC) and he does have experience with what I believe to be a small number of RCC patients.  If the stakes weren't so high, I wouldn't be considering a second opinion -- I am that comfortable with him.   I will ask him about the wisdom of getting a second opinion at this point in time.  He will be straight-up with me on that question.  Thanks for triggering that thought.

As to side effects, I am not aware of any issues in my blood work that can be attributed to the Everolimus.  Anemia was detected in my bloodwork 2 years ago and that's what led to the discovery of RCC.  In that aspect, my bloodwork is better, but it's still a sliver below the recommended range.

Other Everest side effects I have experienced:  mouth sores, fatigue, increased cholesterol, coughing, rash, difficulty swallowing, dry mouth, chills, pain in arms and legs, prickling/tingling skin, runny nose, brittle nails, and some skin redness.  I went down the list of the possible side effects which were disclosed to me when I agreed to participate and picked out what seemed to apply.  Sure, some of what I've experienced could be unrelated to the drug, but there's enough going on here that I feel confident that I have the real stuff.  My doctor is confident as well.

Good luck to you, also.

Dutch

 

My uncle, a retired oncologist, said something to me last year when I was considering other opinions. He said a good doctor will never mind you getting other opinions. Any doctor that discourages it, run. But it sounds like you have a good doctor. That's terrific.

I really felt better when I'd seen 3 oncologists and 2 basically agreed (the two knowledgable ones). To be fair, even the wrong one never discouraged me from seeing someone else for another opinion.

Just don't expect a doctor to criticize another doctor. That doesn't happen much. It's one of the refreshing things about having an uncle who's a pretty good doctor. He hasn't minded dishing up some criticism in cases where it warranted it when I described my treatment or what certain docs have said/done over the years.

Please let us know how it goes.

Todd

Dutch1 said:

Conclusion of Everolimus trial

Todd;

You asked about how things wrapped up with my Everolimus trial.

The final CT scan shows nothing.  Clean.  We are very thankful for that.

Now that the trial is completed for me (that is, no more Everolimus), the routine will be checkups with the oncologist once every three months and a CT scan every six months.  That satisfies the trial's requirement for follow up.

I am now on a "wait and see" path.  There doesn't seem to be anything else to do. At today's appointment, we established an understanding of how and when a kidney cancer specialist would be consulted.  Preliminary discussion included where we might go for such a specialist.  My oncologist is totally fine with the potential for collaboration.  Our conclusion is that we wait for any consultation with a specialist until the cancer shows up again .... maybe never, right?

So, things have been good since my surgery, due in at least some way to the Everolimus trial.

 

Dutch

 

 

Glad your scans turned out clean. Hope it stays that way!

Best wishes,

Todd