Home Forums Melanoma Diagnosis: Stage IV ipi + temodar

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  • #21029
    AnaSof
    Participant

    It’s been a while since I wrote. My husband is about to start a treatment with ipi + temodar. He was on ipi alone last year but no results, it stopped his tumors but now all mets (lungs, liver, brain, nodes) are increasing in size. What worries now its his brain mets wich were controlled with radiation and gamma knife, but one started to grow after 14 months of “succesful” treatment, and his speech was affected. Has anyone been on this treatment? Does it proven to be effective? He is BRAF negative and we can’t try PD1 because it is unavailable in our country.

    Thanks in advance for your input.

    Ana

    #59224
    Catherine Poole
    Keymaster

    Where are you located? There are PD1 trials opening all over right now. You may have one in your country. Temodar is a type of dacarbazine, but in pill form and a little different than the IV dacarbazine. No real studies have shown it’s response rate, but dacarbazine has about a 15% or less response rate. IPI has a 15% to 20% response rate.

    I would be happy to look for a PD1 trial for you as well.

    #59225
    AnaSof
    Participant

    Thanks Catherine, I’ve been reading some studies that showed better response to temodar vs dacarbazine, I’ll post them as soon as I find them again. Anyway we are in Mexico City, if you know of some Pd1 trials over here please let me know. We haven’t been able to find one.

    Best regards,

    Ana

    #59226
    Catherine Poole
    Keymaster

    I would like to see the studies because it is widely prescribed but my scientific board tells me there really isn’t a huge amount of difference between temodar and dacarbazine except one is oral. You are right there are no trials in Mexico for PD1 that I can find. You would have to travel to Southern California, where there are many! Are you residents of Mexico?

    #59227
    marlee425
    Participant

    The first treatment offered to my significant other was ipi plus dacarbazine (April 2012), with little or no response. He tolerated the treatment well. The next treatment offered was temodar. Here again, after four cycles, brain mets still progressed with additional lesions. After SRS, WBR, and Gamma Knife (December), he started to have some speech/memory issues. After the neurosurgeon prescribed dexamethasone, his speech and memory were back to normal.

    Here’s hoping the treatment is successful for you!

    Catherine . . . are there any PD-1 trials that are open to those with brain mets?

    Marlee

    #59228
    AnaSof
    Participant

    Marlee thank you for sharing your experience, I hope that your significant other is doing well right now. My husband also is taking dexamethasone, started in 50 mg and now down to 10 mg since his speech is improving. We are keeping our fingers crossed for this treatment… And we’ll keep them for you too.

    Catherine, we can’t afford to travel right now, we are paying for yervoy, well insurance is but we have to pay 10% but I’m sure that you know it is a lot! If you happen to know a way to get discount or something please tell me…And to answer your question we both are born and raised here in Mexico City.

    Thanks for all your help,

    Ana

    #59229
    AnaSof
    Participant

    Marlee thank you for sharing your experience, I hope that your significant other is doing well right now. My husband also is taking dexamethasone, started in 50 mg and now down to 10 mg since his speech is improving. We are keeping our fingers crossed for this treatment… And we’ll keep them for you too.

    Catherine, we can’t afford to travel right now, we are paying for yervoy, well insurance is but we have to pay 10% but I’m sure that you know it is a lot! If you happen to know a way to get discount or something please tell me…And to answer your question we both are born and raised here in Mexico City.

    Thanks for all your help,

    Ana

    #59230
    Catherine Poole
    Keymaster

    Marlee: yes you can enter the PD1 with previous brain mets: 8 weeks after radiation and the mets must be stable.

    For co-pay assistance go to http://www.yervoy.com

    and then you also might check out our resource page for other organizations that help with drug costs.

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