Everolimus (afinitor) Adjuvant Therapy Trial

todd121
todd121 Member Posts: 1,448 Member
in Kidney Cancer #1

So I'm leaning towards doing this study. I've signed the paperwork and have appointments next week to do all the preliminary labs and another CT scan of my chest, abdomen and pelvis. They are also doing a bone scan because I have one spot on my right femur that they aren't sure what it is. I feel better after the most experienced doc said it most definitely isn't an RCC met. He didn't even want to test it. Still, this is the most thorough scan I've had so far, and I'm nervous of what they might find. (We all know this...)

Honestly, until the pill is in front of me I'm not sure I'll swallow it. And even if I do, I am reserving the right to not take it the next day. And the day after, and so on...

Now that I've had 3 oncologists tell me my probability for recurrence is near 50%, I'd like to do something to try and reduce that. I'm sort of hoping I get the placebo and just get closer monitoring.

It was difficult to choose between this trial and the pazopanib (votrient) trial. In the end I chose the doctor I liked better at the hospital I liked better that is all closer to my home. I decided they really don't know which drug is more effective and certainly don't know for this situation (or for me). I'm hoping my doc is correct, and the side effects are mild/manageable.

Todd

Comments

  • Gordon Charles
    Gordon Charles Member Posts: 91
    #2
    It don't suck.....

    Greetings Todd:

     

    Just tip toeing through the tulips and saw your reference to Afinitor.  I've always been impressed by how everyone who posts here knows all the different names of the drugs... , generic and trade name.  I'm afraid I just read what it says on the package.  I have a few mets in my lungs from rcc and have tried various treatments.  I have now worked my way around to Afinitor and according to my oncologist, the mets seem to be stable at present.  My side effects are minimal... a few mouth tender spots... and temporary.  Not much wisdom here, just another guy who's dueling with the devil and has found that my current weapon seems to have produced a momentary truce.  I'll take it for now..... Good Luck !!!!! 

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #3
    Gordon Charles said:

    It don't suck.....

    Greetings Todd:

     

    Just tip toeing through the tulips and saw your reference to Afinitor.  I've always been impressed by how everyone who posts here knows all the different names of the drugs... , generic and trade name.  I'm afraid I just read what it says on the package.  I have a few mets in my lungs from rcc and have tried various treatments.  I have now worked my way around to Afinitor and according to my oncologist, the mets seem to be stable at present.  My side effects are minimal... a few mouth tender spots... and temporary.  Not much wisdom here, just another guy who's dueling with the devil and has found that my current weapon seems to have produced a momentary truce.  I'll take it for now..... Good Luck !!!!! 

    Adjuvant trial

    A quick question Todd - are all of the oncologists you consult RCC specialists?

  • todd121
    todd121 Member Posts: 1,448 Member
    #4
    Texas_wedge said:

    Adjuvant trial

    A quick question Todd - are all of the oncologists you consult RCC specialists?

    Oncologists

    Two of them are. The ones that are the PI's for the votrient and afinitor trial are both RCC specialists. Although, your question does bring up another question. What constitutes an RCC specialist? I'd say two of them are. One is the chief of oncology/hematology at Cedars-Sinai Cancer Center in Los Angeles. The other is the kidney cancer program co-director at the City of Hope Cancer Hospital in Duarte, Ca (which is near Los Angeles).

    Do we have a policy or practice of not naming names? I don't mind giving their names and see no reason not to, but I'll wait to hear back from others here if that's ok or not. I'm just aware I haven't seen specific doctors mentioned here, so I won't do that for now. 

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #5
    No Signs of Metastisis

    I had my bone scan and ct (non-contrast) of chest/abdomen/pelvis yesterday. The thing on my femur is unchanged and didn't show up on the bone scan. The doctor said "no obvious signs of metastisis". Funny, I was nervous and wanted to know, but honestly I'm not feeling as happy as I thought I might. I guess because it's a reprieve for today. Still, I think I should be grateful for that. They found 3 very small lung nodules (2-4 mm). Two were unchanged from late November and the third has never been seen because I wasn't scanned that high last time. Hopefully they stay small, whatever they are.

    The doctor's nurse that recommended the votrient study called me today to ask what I decided. He's the oldest, most experienced of the doctors I saw. It was a little difficult telling her I decided not to do what he recommended. Oh, well. It is my decision. So far I'm happy with it. While I was in the cafeteria at the hospital yesterday eating breakfast to let the radiation settle in my bones for my bone scan, I was standing at the register to pay. Up comes my doctor and says "Hey Todd. What are you here for?" We had a short conversation and finally he said "So shoot me an email tomorrow about the test results and I'll send them to you". I did that today, and 2-3 hours later came an email back with him saying no evidence of metastisis and he attached all the reports to the email so I could see them. This is one of the reasons I went with this doctor at this hospital. Getting in with a smart doctor that knows a lot about kidney cancer and is personable and responsive is one of my major goals in doing this study.

    Todd

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #6
    todd121 said:

    No Signs of Metastisis

    I had my bone scan and ct (non-contrast) of chest/abdomen/pelvis yesterday. The thing on my femur is unchanged and didn't show up on the bone scan. The doctor said "no obvious signs of metastisis". Funny, I was nervous and wanted to know, but honestly I'm not feeling as happy as I thought I might. I guess because it's a reprieve for today. Still, I think I should be grateful for that. They found 3 very small lung nodules (2-4 mm). Two were unchanged from late November and the third has never been seen because I wasn't scanned that high last time. Hopefully they stay small, whatever they are.

    The doctor's nurse that recommended the votrient study called me today to ask what I decided. He's the oldest, most experienced of the doctors I saw. It was a little difficult telling her I decided not to do what he recommended. Oh, well. It is my decision. So far I'm happy with it. While I was in the cafeteria at the hospital yesterday eating breakfast to let the radiation settle in my bones for my bone scan, I was standing at the register to pay. Up comes my doctor and says "Hey Todd. What are you here for?" We had a short conversation and finally he said "So shoot me an email tomorrow about the test results and I'll send them to you". I did that today, and 2-3 hours later came an email back with him saying no evidence of metastisis and he attached all the reports to the email so I could see them. This is one of the reasons I went with this doctor at this hospital. Getting in with a smart doctor that knows a lot about kidney cancer and is personable and responsive is one of my major goals in doing this study.

    Todd

    Current situation

    Sounds good so far Todd and you seem to have found just the right doctor.  Why no contrast?  (Apologies if I should know the answer to this question.)

  • todd121
    todd121 Member Posts: 1,448 Member
    #7
    Texas_wedge said:

    Current situation

    Sounds good so far Todd and you seem to have found just the right doctor.  Why no contrast?  (Apologies if I should know the answer to this question.)

    Contrast

    Hi Texas. It's because my creatnine level was 1.8 on my last blood test. The doc wanted to see it at 1.5-1.4 to use the contrast. I wish we could have used contrast. It would give me a warmer fuzzy if the better scan showed nothing in my other organs.

    My remaining kidney was smaller than the one they took out. Pre-surgery my creatnine was 1.2 and post-surgery it went to 1.9.

    Set to start drug therapy next Wednesday. Doing more research still. The data just isn't there to make a data-driven, informed decision. Prayer is called for at a time like this.

    Todd

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