• Has anyone had experience with temozolomide (Temodar) for metastastic malignant melanoma?

    Asked by happydad on Sunday, May 20, 2012

    Has anyone had experience with temozolomide (Temodar) for metastastic malignant melanoma?

    Ipilimumab did not have desired effective. Number and locations of new internal malignant melanoma has increased.

    7 Answers from the Community

    7 answers
    • gardensNcats' Avatar

      The Melanoma Research Foundation's website has some information (melanomaresearchfoundation.org), as well as Penn Medicine (http://www.pennmedicine.org/dermatology/hup/lesion.html). Search on Temodar.

      over 5 years ago
    • happydad's Avatar

      Thank you so much for this information. It has helped me and my wife feel much more comfortable about pursuing this option. Full-brain radiation had slowed down the increase of brain lesions. Unfortunately the Yervoy didn't have the same effect for the rest of my body and there has been an increase in tumors. Hopefully the temodar can do something about that. At this point fatigue is the least of my concerns. Thanks again!

      over 5 years ago
    • Seanamac's Avatar

      Hi happydad,

      Just wondering how you are getting along with the Temodar? My brother did Yervoy, with no response. He had brain lesions and chose not to do radiation based on the side effects far outweighing the benefits. He's going to try Temodar. Let us know how you are getting along.

      over 5 years ago
    • happydad's Avatar

      I took my first round of Temodar about a month ago. Five days of three capsules each night. I also took an anti-nausea medicine about an hour earlier. After taking the temodar, I went to bed. No nausea. Last week I had a blood work and a brain MRI. I also have brain lesions. An earlier diagnosis in December showed a lesion in the PONS of my brain and stereotactic radiosurgery was attempted. Later brain scan after starting Yervoy showed more brain lesions. Later PET=CT scan showed additional tumors throughout my body. After last MRI I did ten days of full brain radiation. Wasn't bad, people actually told me I looked liked I had nice tan! The radiation did reduce and eliminate some of the brain lesions including the one in the PONS. Will know better tomorrow if the Temodar is having any positive effect. I know that it has added to my fatigue. At this point, Temodar seems to my only option beyond waiting until the end and I am not ready to give up just yet! See what the oncologist has to say tomorrow.

      over 5 years ago
    • happydad's Avatar

      Saw the oncologist on Friday. Bloodwork looked good, platelets were a little lower, but nothing significant. The brain MRI showed no new brain lesions, some of the existing lesions were smaller or at least stable. Friday I started by second month or round of Temodar. My oncologist will be scheduling a PET-CT scan for September and we will see what effect the Temodar may be having on the rest of my body on the existing tumors scattered throughout. So far the only additional side effect is more fatigue. I bruise more easily, but that may also be the diabetes which was a gift of the steroids I am on since December.

      over 5 years ago
    • StrongSteph's Avatar

      yes...I took Temodar as a part of a bio-chemo attack on a stage IV diagnosis in Fall 2010. Unfortunately I was on 2 other chemo drugs and 2 immunotherapy drugs at the same time, so I was very sick. I do know that the combination of drugs shrunk my cancer! It resolved small lesions in other areas of my body. Good luck to you!

      about 5 years ago
    • Susan_Steel's Avatar

      I'm sure you've been told the efficacy rate of temodar on Stage IV. Rarely effective. That said, I was put on it in 2008 after I received adoptive Tcell therapy or TIL at NCI. I was thrown off trial for having only a 25% regression in tumor instead of required 30%. Sent home basically to die in 3 months with a temodar scrip. Wound up going 23 months with increasing tumor regression TIL I got hit with brain mets. To this day we don't know if it was the TIL delayed, the temodar or the sequencing that gave me those months. Check out my profile to see the sequence of 7 clinical trials I've been on since 2005.

      almost 5 years ago

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