- Search CSN:
- Members: Login to search all areas
- Not a member? Click here to search public areas
You are here
Afinitor trial @ MD Anderson
 |
Jan 24, 2014 - 7:50 pm
Diagnosed now with stage 4 with mets everywhere. Only option is clinical trial using Afinitor. Return week after next for 8 week checkup. prayng for good result, but doc says he can only add months to my life, no surgery option, very aggressive and mets on outside kidney also in liver and maybe lung.. anyone ever do a trial using Afinitor..? thanks guys..kinda down tonight. |
Joined: Apr 2013
Meteor trial
I commenced the above trial in mid December and have been randomised to the Afinitor (everolimus) arm and gave been taking 10mg daily for 6 weeks. So far side effects have been minimal, major one is platelet count is going down but docotr is monitoring that. Most recent blood test done yesterday with OK results apart from platelets and some rise in liver enzymes.
Due to have scan on Feb 10, which happens to be my birthday, and hoping for good results. Unfortunately Votrient failed for me and am hoping this drug will do a better job.
Hope you do well on your trial. What trial are joining? I live in Australia which unfortunately limits the number of trials available to me.
Sue
Joined: Jan 2013
Hi Sue.. My birthday is on
Hi Sue.. My birthday is on the 5th. Hope you get great scan results. Ron
Joined: Jun 2013
Nivolumab trial in Charlotte
Levine Cancer institute in Charlotte is or will be accepting new patients to the Nivolumab trail. I was speaking with my trial nurse about it 3 weeks ago. There is a patient I have become good friends with that drives up from around Tipton Georgia (a 7 hour drive)
Read my bio, it is worth the trip. I started the trial in feb 2012 with lung mets and a 3.8 cm adrenal gland tumor on my one good kidney. My Jan 2 scan was no evidence of disease. MD Andersen is also participating in the trial. inquire with your Dr if you are a candidate.
Joined: Oct 2011
Once a week
Darron, you should post at least once a week that you are NED from the nivolumab trial. I enjoy reading it each time. As your picture shows, I could eat flies and be excited about it too!
Joined: Apr 2013
If only....
.... I could get my hands on Nivolumab!
Joined: Nov 2011
Trials
Gamecocks,
I know all SC fans don't live in SC but if you do, you should definitely look into the Nivolumab trial Darron mentioned in NC. I've gotta believe there are other options for you besides the Affinitor trial. Are you clear cell renal cell carcinoma?
There's a lot of experience here and you can also ask your question over at the smartpatients.com site in the kidney cancer forum. There are many helpful people there and a ton of knowledgeable people on advanced disease.
I wish you well.
David
Joined: Dec 2012
Afinitor Trial
Afinitor has been approved as a treatment after other treatments have failed in Stage 4 for awhile. So perhaps you could be more specific about what trial you are talking about? Is it Afinitor against some other treatment? (There are a couple of trials going on comparing Afinitor against other drugs as a second treatment).
There's a trial which I thought was about to close, but was still accepting new patients that's Afinitor against Nivolumab or PD-1 which I believe others in this thread are talking about.
Why is Afinitor the only option you've been given? What was tried already? They don't start with Afinitor. It's not approved or being tried as a first-line treatment even in trials, as far as I know. There are a few trials that are combining a couple of drugs around. I hope you're seeing a medical oncologist that is very up-to-date on advances in RCC, because this area has been changing rapidly in the past couple of years.
I've been in a clinical trial with Afinitor against placebo as an adjuvant therapy for about 1 year. Side effects have been mild (assuming I'm on Afinitor and not getting the placebo). I had Stage 3a 13 months ago. Am NED now.
Best wishes to you,
Todd
Joined: Jun 2013
Being treated, like I sais,
Being treated, like I sais, at MD Anderson in Houston. My oncologist was voted best RCC doc in USA by reputable sources. I trust his decision to put me on Afinitor first. He says he has a 2nd drug ready if Afinitor doesn't help me. After 2nd drug, he has a backup drug which I think is IV. My Afinitor trial is free and 56 pills cost over $12,000 if not for the free trial.
i really like and trust my doc, he is head of RCC at MDA, so I feel like he is at the top of the ladder for my care..he said my cancer is very, very aggressive now.
i am Stage 4 with 12 tumors out side my kidney and on liver now.
i had partial robotic surgery in May of last year and was clear until Sept. By Nov, all hell had broken lose...
Joined: Oct 2011
Hang in there
I remember being stage 4 with enough mets to play both sides of the ball in the Super Bowl.
Joined: Jun 2013
what trial?
Affintor versus what? You may be talkinga bout the Checkmate trial? (affintor vs nivolumab?). I'm assuming you got the affinitor arm?
Did you already fail an anti-VEGF (ie, sutent, votrient) agent?
It's OK to be down right now; but wake up tomorrow morning with your head held high, hands in the air, believing and visualizing that you will beat this thing. Best of luck.
Joined: Jun 2013
Afinitor ve. Nothing. First
Afinitor ve. Nothing. First drug offered me. No comparison trial. Return next week for 1st 8 week checkup to see if Afinitor is helping me. Fatigue is worst side effect, by 2 pm I'm toast...trying to work, self-employed, but kinda hard now.
Joined: Dec 2012
Trial
Hi. Your first post said you're only option is a "clinical trial". Hence all the questions about what trial and what the trial is studying, etc.
So it seems clear now from your other posts, that you are not on a clinical trial. You're being given Afinitor as a first line therapy. But I thought that Afinitor was not approved for that use. So could you (or anyone is welcome to jump in here) and explain how you're being prescribed Afinitor as a first treatment. Is this being done off-label?
Does anyone know if Afinitor has now been approved as a first therapy for mRCC?
Just to be clear, I'm not questioning your doctor, or how good he is, or his judgement. I'm just trying to understand what is going on. :) (If it's done off-label, usually insurance companies won't pay for it...)
Hang in there. I've been taking it for nearly a year, and the fatigue was bad especially at the beginning, but it got better after a few weeks. Things settled down, at least for me. My oncologist told me that the side effect peak in a couple of months, then subside over the following couple of months and kind of level off after that from his experience. So hopefully you'll get relief soon and the drug will work for you.
Thanks and best wishes for a good outcome,
Todd
Joined: Jun 2013
Maybe I'm confusing everyone,
Maybe I'm confusing everyone, but my doc called it a trial. It is technically a clinical research study due to metasatic kidney cancer. This is a 3 drug study, starting with Afinitor, if it helps, I continue on it. If not, I go to a second drug, probably pazopanib (don't know company name), then 3rd drug is Bevacizumba (again, don't know manufactor's name) which will be given IV every 2 weeks.
Plan, I think is start with Afinitor (Everolimus) and see next week how I'm doing. If not good, go to 2nd drug, then to 3rd if necessary.
again, this is a research study, so my use of "clinical trial" may have been a misnomer.
I trust MD Anderson and my oncologist 100%.
We will see next week, 8 weeks after starting Afinitor, what gives.
i simply was asking if anyone had ever taken Afinitor before and possible success rate.
Oncologist said I had 4-6 months or could do a "trial" so I obviously went for the drug study. Don't really care what it is called, but I'm simply following his recommendation.
Will report back next week from Houston....
Joined: Jun 2013
Got it
Yes, a quick review of ClinicalTrials.gov showed that there are indeed some trials looking at Everolimus as 1st line treatment so it is being used that way. I guess we were all confused because most patients with mRCC start with an anti-VEGF like pazopanib (Votrient) or Sutent. However, in poor-risk disease as determined by the pathology, the decision is less clear and is being studied in trials. Torisel, Votrient, and I guess Everolimus are all options. I suspect you fall into that category. However, when you meet your oncologist, it may be useful to ask about Votrient. It was worked well at keeping the disease at bay for lots of folks and is typically thought to be the "go-to" drug. I'm sure he has an excellent reason why that was not chosen (including the reason that there is no good reason to choose one vs the other...)
Joined: Dec 2012
Thanks! I understand.
You got it right. I was not aware there were any studies going on trying afinitor first. I'm glad to know there is. I had wondered why they had never tried afinitor first (but I think it was because there was already something else approved as a first drug and afinitor was late to the table).
Thank you for the explanation.
Best of luck with the trial. I hope the drugs work for you.
Todd
Joined: Aug 2013
Mom was just on affinitor
Mom was just on affinitor and her onc has stopped it because of a new met.
She actually had loads of side effects including high blood sugars which required her to take insulin, rashes, nose bleeds, fatigue, muscle pain, anemia, taste changes, and mouth sores.
The good news is, if you run into any of these side effects, I have lots of advice on how to make you feel better!
Joined: Jun 2013
Afinitor working..
Returned from last weeks's first 8 week check at MDA. NO progression! No new mets! Return in another 8 weeks do another check. Afinitor appears to be holding back the dike of cancer. I am very pleased. Side effects getting much better, too. I like this drug!!!
Joined: Jan 2014
So Encouraging to hear news
So Encouraging to hear news like this!
Joined: Jun 2013
Great news
So glad to hear your good results.