After the Everolimus trial

Dutch1

I’m another new member here.  We keep showing up, don’t we?

With a CT scan in January of 2013, I was found to have a large tumor on my right kidney.  Shortly thereafter, surgeons removed the right kidney, the tumor, the neighboring adrenal gland and a number of nearby lymph nodes.   It was papillary renal cell carcinoma – Stage IV.

The primary surgeon is top-notch and care during recovery was excellent. 

I was told that the normal post-surgery treatment would be to “wait and see”.  That wasn’t agreeable to me; I wanted to get into some sort of treatment immediately.  I didn’t want to just wait for the cancer to come back.  Both my local oncologist and an oncologist associated with the surgery hospital came up with the same clinical trial:  the Everest study (“Everolimus for Renal Cancer Ensuing Surgical Therapy, a Phase III Study”).  We got into the trial, starting in late March 2013.  It lasts 54 weeks and will conclude in a matter of days.  I am all but certain that I am part of the Everolimus group.  I have had too many of the side effects to think that I am on the placebo.

In general, the clinical trial has gone well.  Side effects have been tolerable.  Scans have been every 4 months and all scans have been “clean” so far.  The concluding scan is coming up soon.  I am counting on another good scan.

I am unsure of what’s next from a treatment standpoint.  The clinical trial is being administered through my local oncologist and his regional health group.  I will be meeting with him shortly after the trial’s ending date to figure out what happens now.

This is when I have a few questions:

1.  Is it going to be an automatic "wait and see" approach now that the Everolimus trial is done?  There will be 3-month scans and exams after the trial, but I am not aware of any other course of treatment that will be undertaken.  Are there other possible courses of action that I should be investigating?  Such as?  We're going to have this discussion with my oncologist next week and I want to be prepared.

2.  I have a lot of confidence in my local oncologist.  No reason to doubt him at all.  However, he isn't a kidney cancer specialist.  I am thinking that it's a good time to get a second opinion of where I'm at.  is that what most of you would do?

3.  How do I find the good kidney cancer specialists?  I am in Wisconsin.  I will get my oncologist's recommendation of where to go for a second opinion, but I am interested in other suggestions as well.

I welcome the group’s input.  I appreciate the opportunity to share info with you.

 

Dutch 

 

 

todd121

Everest 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

todd121 said:

Everest 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

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

 

todd121

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

 

Second opinions

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

todd121 said:

Second opinions

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

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

 

 

todd121

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

 

 

Good news

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

Best wishes,

Todd

GSRon

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

 

 

Hope it does continue to give

Hope it does continue to give clear scans. Ron