Home Forums Melanoma Diagnosis: Stage IV Need some suggestions…please

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  • #22125
    irisfrohman
    Participant

    My brother is stage 4 BRAF positive. Started on BRF/MEK trial and had a 16 month run on the pills with a tumor reduction of about 85%. Because he had a progression they stopped it because of the protocol of the drug trial although on the same scan a lung lesion disappeared. Then onto Yervoy which slowed the progression but not much regression. Then we got lucky enough to be on PD1 and his first scan after the first 6 infusions was stable so he went on to the next 6 infusions. Then that scan showed progression and one tumor regressed..so we are on to the next treatment. So after one year he is now back on BRAF/MEK pills . Has anyone ever heard of taking the BRAf/MEK pills for the second time. We are only waiting one month and then a scan… does anyone have ANY SUGGESTIONS as what we should do next. My brother feels great, looks great, works out, huge appetite and says he doesn’t even feel like he has cancer..labs are perfect and thyroid was out of whack, but then it corrected itself back to normal. Doctor is puzzled as well that he feels so great. Can anyone give me some advice or insight or suggestion. Anything would be greatly appreciated. Thank you..

    #65132
    Catherine Poole
    Keymaster

    Sounds great that he is feeling great. Yes, there have been instances, but not a lot of research on resuming the Braf/Mek after a break. It sounds like maybe the PD1 may still be kicking in too, it stays in the body a very long time. I hope he continues to do well!

    #65133
    bettin
    Participant

    You might want to search this forum for posts by Quentin in October 2011- he was the first patient who actually re-challenged himself with the BRAF/ MEK combo after a treatment break and also had an impressive response. His oncologist at one point mentioned that intermittent immunotherapy- which your brother had- might have played a role- but Quentin had an impressive second response.

    Is there any chance you could get on to the Nivo/ Ipi combo? The EAP for the Nivo/ Ipi is supposed to open shortly in the US, in the centers who have had experience with it during the trials as it does have side effects- together with the best response rate I’ve ever seen, comment here: http://mpneatasco.blogspot.se/2014/06/asco-best-ive-seen-nivo-plus-ipi.html

    Just in case there are problems with the inclusion but as your brother is doing so well, maybe you can convince his oncologist to make an effort for him to get it and to publish it as a case study??

    Wishing you all the best,

    Bettina

    #65134
    irisfrohman
    Participant

    First of all THANK YOU so much for taking the time to reply to my post. This is EXTREMELY hopeful and helpful. I can’t tell you what this means to us to have somewhere to turn. I will definitely look into everything you said. Again, thank you so much.

    #65135
    Catherine Poole
    Keymaster

    Unfortunately, you cannot get into the pd1/ipi trial if you’ve had prior PD1, and that is the case here. So that wouldn’t be an alternative. The Merck PD1 should be approved shortly, but I haven’t seen any trials combining that with IPI, but I’m sure it will happen. Keep in touch.

    #65136
    Lesli
    Participant

    Hi all,

    My time on a combo of Zelboraf and Mekinist lasted 9 months. During that time I met with the director of Seattle’s Melanoma Clinic at Seattle Cancer Care Alliance/University of Washington and his recommendation was to jump off the Braf inhibitors and start on Ipi before progression occurred. His logic was that you can always return to the Braf if the cancer hasn’t outsmarted it. My own oncologist referred to literature that suggests that the melanoma can “forget” and fail to recognize Braf after a period of time.

    I know I’ve read on this forum that people have returned to both Braf and Ipi.

    Some abstracts I found searching “intermittent dosing” of Zelboraf.

    http://www.medscape.com/viewarticle/782715

    http://cancer.unm.edu/intermittent-zelboraf-treatment-in-patients-with-melanoma-may-prevent-resistance-to-the-drug/

    Leslie

    #65137
    irisfrohman
    Participant

    Thanks so much for the additional responses. Catherine you have been so helpful thank you. Maybe when Merck PD1 is approved the doctors will be able to combine ipi/PD1 on their own as a treatment without waiting for a drug trial. I feel like I am much better equipped to have a conversation with the doctor as to treatments available, combining treatments and looking “outside of the box”. We hope, for my brother, as well for everyone fighting this battle to keep going strong until we get to that one treatment that works for us. Sharing information, experiences and others insight is definitely very helpful in this journey. Once again thank you and everyone for any additional thoughts, information or suggestions. They are greatly appreciated. G-D bless.

    #65138
    irisfrohman
    Participant

    I wanted to follow up and let everyone know that my brother’s first scan after starting BRAF/MEK for the second time after being off of it for one year, was very good. Significant tumor reduction! We are hopeful he will have another long run on these miracle pills. Thank you all for your positive words about trying the pills again. So if you know of anyone considering going back on them here is some good news. I would encourage anyone who might need this as an option to discuss this with their doctor.

    #65139
    Anonymous
    Guest

    This is great news for your brother! Keep knocking this disease back! You’re a great care giver. How does he feel?

    It’s also important news and data for the idea of taking a “BRAF break”. I hope the medical community is accumulating such data and reports.

    Feel proud that your brother and you are pioneers!

    Jeff

    #65140
    rick1981
    Participant

    Excellent news that the theory of a ‘drug holiday’ / intermittent usage seems to work for your brother! :P

    And Leslie, how are you doing? Are you on IPI – any reponse – or moving to Pembro already?

    Wishing good news for everyone :)

    #65141
    Lesli
    Participant

    Hi all,

    After 9 months on Zelboraf and Mekinist (and 1 craniotomy, 4 bouts of Gamma Knife and 6 consecutive daily treatments of cyberknife on a total of 14 brain metastasis), I started Ipi and within a month had a significant response (decrease in all pain, no more itchy subdermal spots and lots of energy) and I just had my third of four infusions. My side effects are mild itching after I eat, some numbness in my left hand and bloodshot eyes. I will have full scans in early October after my final infusion and hope they show what my hunch suggests, which is a positive response of some kind. I am still working 50 hours a week and happy for the distraction (but that is nothing compared to a 3 month old!). I’m so glad to hear everyone is doing well.

    Yesterday was the one year “anniversary” of my diagnosis and that diagnosis was extremely concerning–very heavy tumor burden in liver, bones, brain…What a year it has been! I am so grateful for all the treatment options and have a new appreciation for all that is possible. Remembering the names of all the oncology nurses is a test that my brain is still working. Oy.

    #65142
    Catherine Poole
    Keymaster

    Lesli, you are amazing!

    #65143
    irisfrohman
    Participant

    Hi Everyone,

    I wanted to give an update on my brother since his second go -round with the GSK BRAF/MEK combo ( my post of Aug ) . Well it’s been 5 months since he started the drug for the second time and doing well. Feels great, great appetite, works out and lives his daily life just fine!! Thank G-d for that. He is getting scans every two months and the first scans showed significant tumor reduction. I have one big concern that I was wondering if anyone could help me with. The largest tumor he has is in his liver(right lobe) Started at 9.9 x8.8cm, next scan 10.2×9.3cm and this most current scan, (yesterday) 10.7×10.1cm. Blood tests perfect. Some of the other smaller left lobe liver tumors have reduced slightly in size. The rest is stable. No brain mets or bone, some little one in lung holding in stable mode. They told him keep going on the drug and we will scan in 2 months. MY CONCERN: what about this large tumor ? is that considered a big progression in 4 months ?, what to do about that ? ANY IDEAS from anyone? How can someone with such a large tumor on his liver feel so great ?

    We are going to talk to the doctor but before we do we get a much better handle on things by the feedback from all of you and feel more prepared to discuss with doctor.

    THANKS SO MUCH – HAPPY HOLIDAYS TO ALL – ALL OF YOU ARE IN MY PRAYERS

    With great gratitude.. Iris

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