Home Forums Melanoma Diagnosis: Stage IV New & scared for my Dad with Stage IV Melanoma

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  • #22354
    shewinked
    Participant

    So glad to have found this site and have already read great information from you all. :)

    My Dad is now Stage IV, BRAF positive (V600E or something like that) and has mets in his neck, arm, liver and lungs. Was originally diagnosed two years ago, a spot on his back, that spread to his neck. Had a major neck dissection with radiation; it didn’t really help. He has cardiac issues, so they couldn’t do much else for him at the time.

    Fast forward to now and his Oncologist (Dr. Curti at Portland Providence in Oregon) gave him three options:

    – Combination of Dabrafenib and Trametinib to try and shrink tumors as much as possible

    – Ipilimumab alone to shrink tumors and hopefully gain a long-term response

    – His own clinical trial using Cavatak and Ipi together. Cavatak is a cold vaccine (Coxsaki virus) and the theory is to get his immune system to kill the Melanoma. Great response is mice – we shall see in men.

    My Dad has decided on the clinical study, which our family fully supports. I guess if it were me, I would try the MEK drugs first to see if tumors would rapidly shrink. Any thoughts or experiences with these drugs? I’ve seen others mention drugs I’ve not heard of, but wondered if there were for patients with brain mets or something else?

    He’s been given 6 months to live, give or take if he does nothing. It’s all so overwhelming.

    Anyone have any other advice/thoughts?

    Bless you and thank you in advance for responding.

    #66319
    Catherine Poole
    Keymaster

    Your father is most fortunate to have you looking out for him. With such a dire prognosis this doctor is giving him, I would think going with something approved by the FDA and proven to extend life by 2 years and more would be the best option, and that would be the BRAF/MEK option. I can’t find much on Cavatek except for some trials in Australia and it seems a long shot at this point. You might suggest he first get his tumor burden down with the BRAF/MEK and then go on the clinical trial for better effectiveness. I would certainly discuss the pros and cons. Remember the doctor could be slanted to the trial because of the needs for recruitment as well. Let us know how things go.

    #66320
    shewinked
    Participant

    Catherine –

    Thank you for your kind reply. He will also be getting the FDA approved drug Ipilimumab along with the study vaccine. However, it seems Ipilimumab could also be a long shot with 20% of patients seeing results…is that about right?

    This Oncologist is the leading Melanoma Researcher in the Pacific Northwest. When he presented everything to us, he didn’t push anything one way or another. I’m sure he’s happy Dad will participate, but he would be equally fine if he went with one of the other options.

    My Dad’s fear is that the clinical trial won’t be open if he waits after trying something else for a few months. I’m with you – I would rather decrease his tumor load/size and then go from there. There are so many clinical trials right now.

    #66321
    Catherine Poole
    Keymaster

    The article I published from Yale researcher Sznol stated that for immunotherapy we should have PD1 as first line and then follow with IPI if there is no response. IPI does have a lower response rate of 15% and more side effects. While the PD1 by Merck has 38% response. The Braf/MEk will have an almost immediate response for most patients and could be lasting. Is the BRAF/MEK a disqualifier for this trial? I wouldn’t think so. But if we are discussing quality and quantity of life (was it this doc who said your dad had 6 months?) the BRAF/MEK would be preferable as time is of the essence.

    But usually no one can make such a determination with melanoma.

    #66322
    shewinked
    Participant

    Catherine –

    What is PD1? We weren’t given this option. Is it an FDA approved medication? Sorry to be so ignorant.

    Thanks,

    Sheila

    #66323
    hass71
    Participant

    PD1 (pembro / nivolumab) is a new treatment for cancer and has a very good reputation, i started this treatment for my wife a few days ago after failing ipi and hoping to have a good response. i’m sure there’s a lot of experts who will explain the PD1 for you because a they say it’s the new generation of treatment. of course i’m too optimistic but i think i’ve no other choice.

    good luck

    #66324
    Catherine Poole
    Keymaster

    There are two FDA approved PD1s and they are very promising: Keytruda (Merck) 38% and Opdivo by BMS at 32%. The sides effect profile is also pretty remarkable. Unfortunately, it was approved as third line, so your father would need to do IPI and the BRAF/Mek combo before getting it, at least for now. I assume it will move to first line therapy soon, we hope!!! I also will post the latest overall survival data from the Braf/Mek combo here.

    #66325

    Hi Catherine…just a quick question that I’m sure you have stats for…the 70% response rates that I have read about (from various medical conference updates/articles, etc)…are based on those trials where patients are taking ipi and Nivo? or ipi/Keytruda? I know ipi alone is in the 20% range and as you have noted, keytruda and optivo in the 30% range…when you combine the two, what is happening in the trials? Assume we hoping the combo of ipi and a PD1/PDL will soon be the standard of care once these trials sort out but might be a while before this is a reality? My husband is on ipi and too early to tell (2 months) if he is a responder…if he fails ipi at some point, is it safe to assume they would move to targeted treatments first (i.e. BRAF drugs – we don’t know if he’s BRAF) and then PD1 after that? Is that what you are seeing with patients? No chance of getting combo of ipi and PD1 unless he is in a trial for that and has exhausted the MEK/Braf drugs? thanks for letting me know!

    #66326
    Catherine Poole
    Keymaster

    Yes, I’ve seen up to 80% response reported for the IPI/PD1 combined trials. BUT the numbers are still small and it is still early. Also, toxicity is immediate and greater than the therapies alone. So right now PD1 is approved for third line: must have IPI, then BRAF (if braf positive) and then you can have PD1. Everyone (except FDA for now) agrees PD1 should be first line! So hopefully that will change soon. The combination of IPI/PD1 is only in trial but wonder if some docs are getting around that since both are approved drugs. (see the article I posted by Mario Sznol from Yale)

    #66327
    shewinked
    Participant

    Thank you everyone for your kind replies.

    My Dad has decided to do the BRAF/MEK inhibitors to try and get his tumor load down and then go from there if we have to. After looking at everything, it seems like the best first line of treatment. Hoping PD1 becomes a first line of treatment soon.

    Will post how he’s doing.

    Thank you and bless you all!

    Sheila

    #66328

    Thanks Catherine…If you aren’t BRAF positive, then do patients typically go right from ipi to PD1? (in other words, patient isn’t required to try a targeted therapy if they are BRAF negative?)…

    #66329
    Catherine Poole
    Keymaster

    Sounds like a good plan. Hope all goes well and we’ll be here to support you and your father.

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