Paying for cancer treatment

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  • sedonaman
    sedonaman Member Posts: 21
    edited September 2018 #22
    todd121 said:

    RCC Oncologist

    Can you see an oncologist who has RCC-specific experience?

    I had Stage 3 Grade 3. I tried a trial for this but it used everolimus. 2 years after my kidney was removed I had a metastasis to my adrenal gland and had to have removed. They unblinded me from the study and found out I had had a placebo. They offered me another trial for adjuvant therapy (where you take a medicine even though you don't have any visible cancer to keep it from coming back) using votrient but I refused.

    These drugs have a lot of side effects. They are hard on your body. Sutent. Votrient. Look at the side effects. It's quite a few. They can mess up your liver, cause high blood pressure, turn your hair white, give you diarrhea, make you naseous, etc.

    I don't think the drug was that affective to keep the cancer from coming back. If it were me and mine came back again and they removed it again, I wouldn't take these drugs when I was otherwise healthy. That's my opinion. I don't think the effectiveness warrants the side effects and the expense. If the insurance company won't pay for it as this mode of treatment, I think that's another indication that it may not be a very worthwhile option.

    Stage 3 Grade 3 you need close followups. If it does come back, you want to catch it early. For me this is very important. After surgery I had a baseline MRI of my brain with contrast, a bone scan, and a CT of chest abdomen pelvis (with contrast if you can) all as a baseline and to make sure there no mets at the beginning. Then I got CT scan of chest/abdomen/pelvis every 4 months the first year and every 6 months the second year. I would have gone to yearly after 2-3 years. However, I had that met to my adrenal. So for the last 3 years I've been getting followups every 3 months (CT of chest/abdomen/pelvis) and some blood tests. You want to catch it early so it might be operable. The longer it goes undetectable, the more likely it will not be operable.

    Wishing you the best. Talk to your doctor about the tradeoffs. If it's somebody that you can't talk to, find somebody else/get another opinion. Try and find a medical oncologist who specializes in RCC. These are usually researchers at universities and cancer hospitals.

    Best to you,

    Todd

    Thank for your ideas

    Thank you feed back and opinion, i appreciate. I actually do not know if my current onocologist is a rcc specialist. I will need to check. thanks for the suggestion. I am due to have my first scan in november.  I have been told rcc can me  very unpredictable and they said the same thing about coming back later than five years, so i understand your suggestion to keep up the scans. thanks

  • sedonaman
    sedonaman Member Posts: 21
    #23
    a_oaklee said:

    Agree with Todd

    Wow.  Everything Todd said!  He's been around for awhile reading alot and so have I (for my husband).  I agree with his opinion.  I would not take these drugs as adjuvant therapy.  I think your body needs to be as healthy as it can be, for as long as it can be.  Sutent is a tough drug to take.  But it does work wonders for a number of people.  I'm glad it's part of the arsenal.  Another factor that you might want to think about is that clinical trials frequently want patients who have not had any previous medications.  If you take sutent, you could make yourself ineligible for some.  Please also join smart patients.

    Thanks again

    Thanks again for all your info. I realize now I need to stay on top of this and learn as much as I can. I appreciate all your experiences you have shared.

  • sedonaman
    sedonaman Member Posts: 21
    #24
    a_oaklee said:

    Agree with Todd

    Wow.  Everything Todd said!  He's been around for awhile reading alot and so have I (for my husband).  I agree with his opinion.  I would not take these drugs as adjuvant therapy.  I think your body needs to be as healthy as it can be, for as long as it can be.  Sutent is a tough drug to take.  But it does work wonders for a number of people.  I'm glad it's part of the arsenal.  Another factor that you might want to think about is that clinical trials frequently want patients who have not had any previous medications.  If you take sutent, you could make yourself ineligible for some.  Please also join smart patients.

    Thank you for your feedback

    I have learned so much on this forum and appreciate your advice and suggustions. The infor about taking sutent now may effect any future trials is great to know. Thank you so much for that thought and information,

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