Afinitor trial @ MD Anderson

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Gamecocks
Gamecocks Member Posts: 30
in Kidney Cancer #1

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.

Comments

  • Suekub
    Suekub CSN Member Posts: 137
    #2
    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

     

  • GSRon
    GSRon CSN Member Posts: 1,303 Member
    #3
    Suekub said:

    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

     

    Hi Sue.. My birthday is on

    Hi Sue.. My birthday is on the 5th. Hope you get great scan results. Ron

  • Darron
    Darron Member Posts: 310 Member
    #4
    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.

     

  • foxhd
    foxhd CSN Member Posts: 3,181 Member
    #5
    Darron said:

    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.

     

    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!

  • DMike
    DMike Member Posts: 259
    #6
    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

  • Suekub
    Suekub CSN Member Posts: 137
    #7
    Darron said:

    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.

     

    If only....

    .... I could get my hands on Nivolumab!

     

  • todd121
    todd121 CSN Member Posts: 1,448 Member
    #8
    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

  • Gamecocks
    Gamecocks Member Posts: 30
    #9
    todd121 said:

    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

    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...

  • foxhd
    foxhd CSN Member Posts: 3,181 Member
    #10
    Gamecocks said:

    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...

    Hang in there

    I remember being stage 4 with enough mets to play both sides of the ball in the Super Bowl.

  • texMD
    texMD Member Posts: 13
    #11
    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.

  • Gamecocks
    Gamecocks Member Posts: 30
    #12
    texMD said:

    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.

    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.

  • todd121
    todd121 CSN Member Posts: 1,448 Member
    #13
    Gamecocks said:

    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.

    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

  • Gamecocks
    Gamecocks Member Posts: 30
    #14
    todd121 said:

    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

    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....

  • texMD
    texMD Member Posts: 13
    #15
    Gamecocks said:

    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....

    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...)

     

  • todd121
    todd121 CSN Member Posts: 1,448 Member
    #16
    Gamecocks said:

    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....

    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

     

  • Eskimo lily
    Eskimo lily Member Posts: 43
    #17
    todd121 said:

    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

     

    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!

  • Gamecocks
    Gamecocks Member Posts: 30
    #18
    Eskimo lily said:

    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!

    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!!!

  • CommuterMom
    CommuterMom Member Posts: 120
    #19
    Gamecocks said:

    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!!!

    So Encouraging to hear news

    So Encouraging to hear news like this!

  • Darron
    Darron Member Posts: 310 Member
    #20
    Gamecocks said:

    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!!!

    Great news

    So glad to hear your good results. 

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