Sarcomatoid Rcc and Sorafenib or Sutent

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I'm wondering if anyone with sarcomatoid RCC has tried sorafenib or sutent. If so, what were the results? There are no clear cell features in my cancer - only chromophobe features. I've tried 3 different sets of chemo, if the current one doesn't work, I'll have to try something else...

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Caseymarie

Andrea, Hello. I wanted to tell you my sister is on sorafenib for Renal Cell Carcinoma. It is too soon to know if it is going to work. She just started on this drug 2-3 weeks ago. The cancer is in her lymph nodes, lungs, left hip bone, and many different vertebrae. She will go back for a check up in a week and a half. Are you are anyone you know thinking about using sorafenib for RCC? Casey

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Garyinkansas

Hi Andrea -- I have sarcomatoid rcc, but have not yet tried Sutent or Sorafenib. I first did Interleukin-2, 2 complete cylces. Half my tumors shrunk and half continued to grow. Now I am on Avastin and Tarceva, and after six weeks the results don't look too promising. I'll have another CatScan December 9th. I have kidney cancer tumors in a foot bone, the skin, and nine in the lungs, 4 of which are growing. You are the only person I've found who asks questions about sarcomatoid rcc. There isn't much info our there as near as I can tell. I would love to be in touch with you. My name is Gary Cox, I am a minister in Wichita, Kansas, and I was diagnosed in March of 2005. My oncologist expects to try Sorafenib or Sutent next. Best wishes to you. Gary Cox

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Andrea_From_dc

Since my RCCis Sarcomatoid, my oncologist advised against IL-2, and suggested, instead, I try chemo. I’ve been on 4 different chemo’s since my surgery in February. Six weeks ago, my oncologist suggested I tried Taxol and Carboplatim. I’ve had lots of side effects over the past months, but since the Taxol/Carb, I’ve been feeling very well. My only complaint is hand-foot sandfoot, which is pretty uncomfortable, and some fatigue. I’m getting the results of my latest PET scan tomorrow and will find out if the Tax/Carb is working (in 2 of the other chemos I was on were stable, one got worse). If my PET shows that the tumors got larger, I’ll be trying Sorafenib next. I’m in the DC area. My favorite oncologist is Dr. Nancy Dawson, of the University of Maryland. She has been advising my local oncologist on recommended treatments and I think she’s wonderful!.

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Garyinkansas

Hi Andrea -- It sounds like you are getting good care. My oncologist is Peter VanVeldhuizen at University of Kansas Medical Center in Kansas City. I think a lot of him, and drive 3-1/2 hours for each appointment (from Wichita.) It is really good to see you are hanging in there. This sarcomatoid element of RCC is so unusual, nobody seems to know what to do. OBviously the 4 types of chemo you've had have done some good. They tell me that all we can do is string together a series of treatments. My current Avastin/Tarceva chemo does not seem to be working. I'll know for sure December 9th. After that I expect to try Sorafenib or Sutent. Have you read any of the studies? It looks like the Sutent might be having slightly better outcomes, but it is too early to tell. By the way, I demanded they try Interleukin-2 on me. Half my tumors shrunk and half kept growing. But you didn't miss much by skipping the IL-2. I have never been so horribly sick in my life. It is as bad as they say! Blessings to you. Keep the faith, and please stay in touch! Gary Cox

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Andrea_From_dc

I have sarcomatoid RCC with chromophobe features -- I don't have any clear cell components. Do you have sarcomatoid with clear cell features or chromophobe features or something else? Let me know how your scan goes later in the week. Do you think the Avastin/Tarceva isn't working because you were feeling lousy? On one of my chemos, I had a fever for the entire 6 weeks. Sure enough, my tumors were getting bigger... Please keep me posted on the sutent and sarafenib. They are options for me in the future!

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Garyinkansas

When my kidney was removed they found both sarcomatoid and clear cell elements. However, when they removed a kidney cancer tumor from my shoulder, they diagnosed it as chromophobe. It is all a bit confusing! The reason I doubt my Avastin/Tarceva is working is because I have three visible tumors--chin, scalp and back. They shrunk after the first two weeks of treatment, and then stopped shrinking. The one on my scalp has grown quite a bit over the past few weeks. It is the tumors in and around my lungs that are posing the most danger, and I'll find out about those Friday. I'll keep you posted. AND THANKS FOR RESPONDING! It is nice just to have somebody else who has heard the words sarcomatoid and chromophobe. Even my kidney cancer support group does not speak THAT language! Blessings--Gary

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Garyinkansas

hi Andrea -- The Avastin/Tarceva slowed the growth of the tumors but did not stop or shrink them, so I will now try Sorafenib. I have to wait 28 days so the Avastin can work its way out of my system. I will start Sorafenib on January 6. I hope things are going well for you. Stay in touch! Gary

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Andrea_From_dc

Gary, Sorry to hear the Avastin/Tarceva stopped working, but hopefully the Sorafenib will! I'm getting another PET scan in early January, and if my chemo isn't responding, I'll be trying Sorafenib too. In May, I found out about a study that was being done on Sarcomatoid RCC (one of the co-chairs is Janice Dutcher, from NY). While I was not part of the study, I was given the same chemo treatements and the same dosages -- Gemzar & Adriamycin -- by my local oncologist, who was able to find the study. I was on it for 8 treatments, and my cancer was stable. That might be something you can try if the Sorafenib doesn't work, and maybe you'd have better than stable results! -Andrea

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Garyinkansas

Hi Andrea-- I have a dilemma! I got the written results of my CatScan, and they are troubling. I have some new tumors and some others are growing. I have several options and my oncologist is leaving it up to me. The Gemzar chemotherapy treatment is one option. The other option is Sorafenib. I can't start the Sorafenib for one month (January 6th). My oncologist is somewhat concerned about waiting that long to begin a new treatment. I could start the Gemzar treatment in the next 10 days and it lasts two months. I could then immediately afterward try the Sorafenib. However, the Gemzar treatment does not have quite the success rate of the initial Sorafenib trials. Your words about the Gemzar were encouraging. I just don't want the disease to take hold to the point where the Sorafenib will not be very effective. I know you understand this dilemma and I would welcome your thoughts on these options. By the way, you may correspond with me directly at my email: --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Blessings on you in your struggle with this disease -- Gary

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