• has anyone used vemurafenib for melanoma or had any luck with cancer treatment centers of america -need direction

    Asked by sugarbear on Saturday, December 15, 2012

    has anyone used vemurafenib for melanoma or had any luck with cancer treatment centers of america -need direction

    just diagnosed stage 4 malignant melanoma -need a ray of hope

    11 Answers from the Community

    11 answers
    • Harry's Avatar

      Welcome to the WhatNext Forum. I'm sure someone with experience with vemurafenib will be around soon.

      I haven't used the Cancer Treatment Centers of America and I'm not sure that anyone here has. They advertise in certain markets and, I assume, that includes your area. I don't know of anything negative about them, but I don't know anything positive, either. If you are looking for cutting edge treatment, then you really should go to one of the major cancer research institutions. Here is a link to a US News and World Report listing of the best cancer hospitals in America: http://health.usnews.com/best-hospitals/rankings/cancer Hospitals in New York City, Boston, and Cleveland are among the top 10. Any of them can give you the brightest rays of hope. There are probably excellent hospitals farther down on the list that are closer to you. Any of those would also be good. Cancer Treatment Centers of America doesn't make the top 100.

      almost 4 years ago
    • Stevo's Avatar

      I agree with Harry. I know a man who went there (to Cancer Treatment Centers of America) and I don't think he liked it very much. The other hospitals he listed would be my route. Look also to God for hope and strength.

      almost 4 years ago
    • Dick_K's Avatar

      So very sorry you are here and having to ask about venurafenib. Venurafenib is marketed as Zelboraf; If you search on Zelboraf you will get more hits and you might try posting your question again using Zelboraf.

      That having been said, I am in my 34th month on Zelboraf (venurafenib) for stage IV unresectable tumors in my lung . I am more than willing to share any information with you either publicly on this forum or privately through e-mail. As to your questions about Cancer Treatment Centers of America, I also have no personal experience. Harry is right, you need to be looking at melanoma centers of excellence for treatment.

      Good luck to you.

      almost 4 years ago
    • jad's Avatar

      I have no experience with Cancer Centers of America. They market heavily on the radio (couldn't tell you about TV) in my area. But I do have a basic negative gut reaction to an entity that using their slick advertising technique. I think they mainly want your $$$s.

      I don't know how close to Syracuse you are, but there is a medical school there. Perhaps you can find a local oncologist or dermatologist who is associated with that school and you can get together a team that will work with you and each other.

      Same holds true for Cornell Univ medical school. - It's in NYC (Weill?).
      My "team" is associated with a major medical school - pretty local to me, and I've found that all the docs (private practice) are very up to date on current advances, ongoing studies etc.

      almost 4 years ago
    • Susan_Steel's Avatar

      Reality is that melanoma is an orphan disease with less than 15% chance of survival for late stage, therefore if you are going to seriously battle this disease get in front of the top melanoma research clinicians in the country. I have yet to see CCA presenting on the best melanoma research at the annual ASCO conference nor do I see them showing up sponsoring cutting edge research on clinicaltrials.gov. We have about 40 top melanoma research clinicians in country. That includes: Hodi at Dana Farber, Chapman and Wolcheck at Sloane Kettering, Rosenberg at NCI, Weber at Moffitt, Wu at MDA, Sossman at Vanderbilt/Cannon, Kirkwood at Univ of Pitt, Hamid at The Angeles Clinic & Ribas at UCLA. You most probably will need a sequence of trials so don't mess with local Oncs if you can afford to get to pros. I have survived stage 4 for almost 8 years (7 clinical trials. 4 traditional treatments, 7 brain surgeries) by taking responsibility for research, advocating carefully, cultivating the right support, being as tough as I am thankful.

      almost 4 years ago
    • StrongSteph's Avatar

      2 years ago I was in a very bad situation and ended up at the John Wayne Cancer in Santa Monica. Dr. Morton was going to to operate and then could not because the cancer had spread. He sent me to the Angeles Clinic. These doctors saved my life. I would reccomend going to someone that is a melanoma specialist. I thought of heading to the cancer treatment center...but I am not sure they know melanoma. Try finding info at the Melanoma Research Alliance ( http://www.curemelanoma.org/) or at AIM (http://www.aimatmelanoma.org/en/index.html). There is HOPE. I was stage IV and I am still here!

      almost 4 years ago
    • Cricket's Avatar

      I am in my sixth cycle ( month) of Vemurafenib I am having great results. My tumor started out as 12 mm by 16 mm and now it is slightly smaller than 6 mm by 6mm. The side effects were pretty bad for me initially, but I powered through. I am part of a clinical trial at the University of Colorado.

      almost 4 years ago
    • SunnyB's Avatar

      i am using venurafenib, since 2 months now, good results, my pain has gone, i am just waiting for the CT results to compere with the last one when i did not use the medicine. But i had huge pain all in my body. They say this is the best right now.-
      However many side effect i recognised, that is very dissapointing right now, hopefully will be better soon. How venurafenib can be bought in the US? is it a usual medicine, can be bough anywhere? In my country is only in "testing" period. So i am a tester and nobody knows what will happen. But better than nothing, many good results was recognized so i suggest to take it. How much is it there? Any other medicines that are available for melanoma?

      almost 3 years ago
    • Cricket's Avatar

      I get my zelboraf from a specialty pharmacy here in the states. It is called Diplomat Pharmacy. They keep track of how much they have sent and call each month to schedule a new drop off date.

      almost 3 years ago
    • SunnyB's Avatar

      Just got the CT results, most of my tumors in my body were getting smaller, some have gone totally!!:) Venurafenib did help me!
      ...I already got most of the treatments I could get for this desease before... so this is my last chance, I am under a very strict contorl by doctors as I said here in my country is in a testing phase, and we are just some that can take this medicine free.
      In one hand I feel very lucky I can have this medicine as big hope in other hand I am suffering every day from side effects doctors have not ever seen before, but I hope it will be better soon. I am under blood check, heart control, eye control, etc every 2 weeks! Pls contact me if anybody else has experience with this medicine too. Thanks!

      almost 3 years ago
    • JackieK's Avatar

      I just got done using vemurafenib and it saved my life. Even though I got most of the side effects like joint pain, skin rashes, nausea, constipation, etc. it was the most easy to get through. I highly recommend this treatment and would do it again and again if I needed to.

      almost 3 years ago

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