Home Forums Melanoma Diagnosis: Stage IV Bad news, and our options going forward

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  • #20469
    justinnv
    Participant

    1985: Had small melanoma spot on skin, right arm, surgically removed,

    then nothing until:

    March 2012: diagnosed stage IV:

    2 cm mass in brain

    2 cm mass in lung

    1 cm mass in lung

    BRAF positive

    March 8: surgery to remove brain mass

    May 1: Gamma Knife on resection site in brain

    May 24: Lung surgery to remove 2 lung mets

    We had to wait 4 weeks after the lung surgery to see if she was still disease free, in order to start a trial at Moffitt Cancer Center (Tampa, FL), an “adjuvant” trial, only for people with all disease resected, of BMS Anti-PD-1 plus peptide vaccines.

    She failed that screening.

    June 29: progression:

    1 new met in brain, 1 cm

    2 new mets in lung: 1 cm, 0.5 cm

    possible 7 mm spot in liver

    She has had no systemic therapy.

    Today, 13 days later, July 12:

    She was supposed to get Gamma Knife on the new 1 cm brain mass today.

    When they did the pre MRI, it showed progression near (I think it is near) the old 2 cm brain met. This was a web of tumors, only in the “lining” of the brain, right on the skull. About the size of a hand.

    So she did 4 hours of Gamma Knife today. On the 1 cm met and on the new web of tumors. They said the Gamma Knife will be able to get all the bigger stuff in that web, but there some spots in the interconnecting viens that it will not get.

    The radiation oncologist said that she is still against Whole Brain Radiation (WBRT), so that is good. She said she’d have to wait 3 days after Gamma Knife to start drug treatment.

    >QUESTION: WBRT (Whole Brain) would probably mean no zelboraf, for instance, for 4 weeks (the 3 weeks of treatment and another 5-7 days afterwards too)?

    We will be seeing her oncologist, Dr. Daud, here at UCSF (San Francisco) tomorrow hopefully.

    When we saw him last week, he said they have the Roche Zelboraf + Mek combo trial, and they will have slots for an Anti-PD-1 trial in about 5 weeks, I think BMS. There will be about 60 slots nationwide.

    Then we also went and saw Dr. Ribas at UCLA last week, about his Zelboraf + Yervoy combo trial.


    1. Our first prefernece is: Zelboraf (Vemurafenib) plus Yervoy (Ipilimumab) combo

    However, there is a 30 day washout after a brain met is treated with radiosurgery, and then the brain disease has to be stable/no progression at the 30 day mark.

    Also, there is a very limited number of slots, he said something like only 1 slot per month.

    Therefore, Dr. Ribas is against the trial for Cinthia.

    However, Dr. Ribas said some doctors prescribe the Zelboraf and Yervoy combo for their patients, outside of a clinical trial. In which case she would not have to wait because of the washout period after radiosurgery, or risk failing screening because of progression of brain disease.

    I know a patient on this forum is being prescribed Zelboraf and Yervoy together by Dr. Greg Daniels at the VA Hospital in San Diego. The VA there is in a relationship with the UC San Diego School of Medicine.


    2. If she cannot get prescibed Zelboraf and Yervoy together, our second preference would be the Zelboraf plus MEK combo clinical trial (Hoffmann-La Roche) [ClinicalTrials.gov Identifier: NCT01271803]

    Exclusion Criteria:

    -History of prior significant toxicity from another BRAF or MEK pathway inhibitor requiring discontinuation of treatment

    -Palliative radiotherapy within 4 weeks prior to first dose of study drug treatment

    -Experimental therapy within 4 weeks prior to first dose of study drug treatment except RO5185426

    We will have to get the following questions answered about that option:

    >How soon could she start that trial?

    >I do not quite understand the exlusions listed above. Would her SRS radiosurgery (Gamma Knife) for her brain met, which she got today, July 12, be an exclusion with a washout period?


    3. Our third preference would be the Anti-PD-1 trial (BMS I think) opening in about 5 weeks. I think Dr. Daud said she would be able to do Zelboraf until the start of that trial.

    That’s the ONLY way we would want to do that trial, if we could do something now like Zelboraf. We can’t afford to wait 5 weeks without doing anything systemic.


    Dr. Ribas said that there should be more and more Anti-PD-1 trials in October, November, etc. Which might be perfect for Cinthia if she tries Braf+Yervoy or Braf+Mek and they don’t work, then she can try Anti-PD-1.

    #55446
    justinnv
    Participant

    Info about our choice number 2 up above:

    [Zelboraf plus MEK combo clinical trial (Hoffmann-La Roche) [ClinicalTrials.gov Identifier: NCT01271803] http://clinicaltrials.gov/ct2/show/NCT01271803” class=”bbcode_url”>http://clinicaltrials.gov/ct2/show/NCT01271803]

    The “RO5185426” excepted in the exclusion below is Zelboraf. So at the least, if Dr. Daud wants to do this option, she could start Zelboraf right away even if it takes a bit of time to get on the trial.

    Experimental therapy within 4 weeks prior to first dose of study drug treatment except RO5185426

    #55447
    jamesa
    Participant

    Hi Justin,

    It is unbelievable what your family is going through with your mother-in-law & father. Your family is very lucky that you are researching all alternative treatments.

    I am so sorry to hear about your mother-in-law. It certainly is not good news dealing with brain mets. How is your mother-in-law feeling? Has she finished all the radiation on her brain?

    How was your meeting with Dr. Daud??? Have you made any finally decision on your mother-in-laws treatment? I hope that she can start treatment very soon.

    All of the treatments that you are considering can be difficult when it comes to side effects. It would great if you could get her treatment near your home just in case she needs to be taken care of.

    Good Luck with your decisions. I will keep you all in my prayers.

    James

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