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Thread: Hope after 5 years on Sutent

  1. #1
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    Hope after 5 years on Sutent

    When I had my kidney removed 5 years ago I was diagnosed with metastatic cancer or RCC. Like many others I was given 3 months to live and told to get my affairs in order. To give me a little more time I had surgery to remove the tumors that were a result of the RCC. Then I got a call from my Oncologist. He had just learned of a clinical trial on a drug from Pfizer called Sutent.

    Since starting Sutent, my cancer has been held in check and I endured the side effects as best I could. The side effects continued to worsen until about a year ago when my doctor reduced my treatment schedule from four weeks on followed by two weeks off to two weeks on and two weeks off, in order to give my body more of a chance to recover. In addition to high blood pressure and hypothyroidism, I had all of the usual problems; sores in my mouth, extreme fatigue, diarrhea, excruciating hand foot pain, and severe heart burn. My left heel was so bad that I had abandoned my walks and yoga long ago. I run my own business and so I felt obligated to show up every day, but there were many days I should have stayed home. My health was in real decline, but at least my cancer was stable. After five years of cancer and four and half on sutent, I was very thankful to still be alive.

    Then I met with a friend of mine who is an MD who has spent his career working on new medical products. He had been working on a new drug-free technology and was testing it on diabetics. He was having some success affecting the biochemistry of diabetes. I told him that I had been battling RCC for 4 Ĺ years and asked him if he thought his technology (which helps one relax) might work on cancer. He didnít know, but I wanted to give it a try. My Oncologist was familiar with my friendís work and felt that there wasnít any risk in trying it out.

    We were all very surprised when my side effects from Sutent were dramatically reduced (85%) almost immediately. It remained that way for the first 3 months. Since then my side effects have continued to lessen. I have resumed all of the activities (roller blading, skiing, biking, etc.) that I used to do before I was diagnosed. My wife even had me moving furniture around during what was supposed to be my sickest days of the month. The best news came a few weeks ago. After my recent tests my cancer is undetectable and my Oncologist has taken me off Sutent.

    I feel great and grateful. I know that many of the members of the clinical trial that I participated in five years ago have succumbed to RCC. I was told that most died when they stopped taking the drug. The side effects were so severe that they preferred to take their chances with RCC than to live with the side effects of Sutent. This is still true today for many patients who are on the drug. Pfizer and the doctors are very upfront about Sutentís side effects. However, there is a potential for relief.

    I live in the Twin Cities. The Doctor who is working on the technology that helped me is willing to test some additional Sutent users to see if their side effects will also be reduced and to see if their cancer regresses. If it works on other Sutent users his company will do a more formal clinical study and apply for FDA approval. He is a very ethical person and does not wish for me to disclose his company or technology because it is available on the market for other applications and he does not wish the technology be promoted for an application that is not yet proven or allowed to be marketed for this indication by the FDA. He has been in touch with Pfizer and although they would like to assist, they are prohibited from giving out any patient names. His name is Dr. Cohen. If you live in the Twin Cities of Minneapolis and St. Paul and you are taking Sutent he would be happy to take your call at 952-210-4500.

    One of the reasons I decided to take Sutent was that it would give me more time. With time more advancements can be made that can impact our lives. I hope I live long enough to see more forms of therapy come about to beat RCC and other cancers. I wish you all lots of luck and renewed hope for a healthier and cancer-free future.

  2. #2
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    This is great news. I have had my kidney removed a year ago and was told to take sutent. My oncologist tells me I need to take it for the rest of my life. It is good to hear there are alternatives. Do you do any acupuncture or herbal medicine? I have done that since I was diagnosed. The cancer did not show up for the last two CT scans, but two oncologists insist sutent is the only answer. Thanks again and God bless you. Gerard

  3. #3
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    non-chemo alternative to Sutent

    I've been on Sutent for 6 months and having accumulative side effects. Left kidney removed a year ago and mets to lungs. I'm very interested in your post re the innovative non chemo approach used by your doctor and would love to try it. However i live in Sydney Australia. Any ideas? thanking you, SilenaGig

  4. #4
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    Question

    Hi Nick,

    I am very pleased to hear this good news! Myself, I had my left kidney removed in may 2010. Initially, the cancer seemed to have disappeared but last december it was found out that the cancer had spread to my left hip ( illiac bone) were there's a hole of 2 inches, my left shoulder and my lungs. Here they found some 20 spots. Since december I have been on Sutent, now the fith, in a rythm of 4 weeks on 2 weeks off. The medication seems to have stopped the spreading of the desease, although there are no signs of regression yet. The side effects of Sutent are annoying (mouth, heels, fatigue etc.) but bearable untill now. I was wondering what medication yor friend MD gave you? Was this only helpfull in order to diminish the side effects, or did it attack on the cancer itself? Regards, Joost (Dutch)

  5. #5
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    This sounds wonderful. I see you posted a year ago. How are you now? Any progress?
    I have Non-small cell lung cancer....I've had Photodynamic therapy. Now oncologist wants me to try Sutent. Sounds horrible. However, if there is a way to reduce side effects, enjoy life, and live longer, I'm all for it. TY. Lynn

  6. #6
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    I realize this threat is very old. I just tried calling that number for Dr. Cohen and got somebody named Dan.

    Does anybody know if this was real or bogus? Or how to find out anything more?

    Thanks.

  7. #7
    Administrator Top User lisa1962's Avatar
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    Our only advise is to seek answers from your reputable Oncologist.

    Closing thread to avoid confusion.

 

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