MRF-Logo2019-Horizontal-RGB
Melanoma progress
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Melanoma progress

› Forums › Melanoma progress

  • Post
    • November 17, 2020 at 2:53 pm
    Lilara
    Participant
      Hi everybody . My mom was diagnosed with melanoma stage 2B in September 2017. She got a reoccurrence in June of 2020 in lymph nodes 2 of them ingroin righ side and a pelvic mass which is about 3cm . Doctor suggested to start on Pembrolizumab. And then maybe surgery if they shrink . My mom tried 4 doses of this drug and got the scan after 2.5 months . Her tumor progressed and got a little bit bigger on all of them . She is NRAS . I have suggested to the doctor why they don’t try combo pemobo and ipi or nivo and iPi and she said that has a lot of side effects which I understand but I think it worth the try. She is suggesting to try pemobo once more and if it does no work try ipi. I am looking for second option
      And your comments based on your experience . Also which doctor should o try to get a second opinion over the phone ? My mom is in Canada and is being treated at sunny brook. Please help .this forum is great
      Thanks
    Viewing 1 reply thread
    • Replies
        • November 17, 2020 at 8:16 pm
        Daisy2018
        Participant
          Hi there,
          I m no expert by any means.
          I m on Pembro too for last 2 months. Not sure if it’s working or not.
          I agree with your doctor. Sometimes what people are saying there is preudo progression before it starts shrinking. I would do it one more time and give it time to do it’s job.

          I read that people were saying that adding Leukine to ipi or nivo helps to manage side effects. I haven’t asked the doctor yet about it but it would be my next step.
          This is my next plan B actually.
          Best wishes.

          • November 21, 2020 at 11:22 pm
          Mark_DC
          Participant
            Dear Anonymous,

            Am sorry for your mum’s news but it may not be as bad as it seems. I am NRAS too and was put on pembro, like your mum, and was put on this neo-adjuvant treatment – immunotherapy and then surgery if needed. Ipi had caused side effects. I think there is no clear answer – you can keep going as immunotherapy can take time, or you could switch to ipi-nivo and risk the side effects (but then might mean stop treatment). Do you know how difficult the surgery would be if done now?

            In my case, pembro led to progression but very slow progression so maybe it was doing something. Side effects not too bad really. In the end they added tvec to the pembro and this worked.

            I like second opinions but i dont know the names of good specialists in canada. They may offer new ideas or just reasure you that the current plan makes sense. My doctor gave me the names of second opinion doctors, and second time around we adjusted our treatment in light of the second opinion suggestion. Which turned out to work!

            Good luck Mark

              • November 22, 2020 at 3:32 am
              Lilara
              Participant
                Thanks Mark for sharing this information. I think TVec and Pembrolizumab might work , but in Canada they don’t offer it . Do you mind sharing the doctor information for the second opinion for tvec even though he might be in USA
                Thanks
                • November 22, 2020 at 2:09 pm
                Mark_DC
                Participant
                  Hi Lilara – for my two second opinions my doctor at Georgetown referred me to Dr Evan Lipson of Johns Hopkins (who also works in DC). Both times he was really helpful.
                  First time we did not follow his advice but ran into problems when we didnt. His advice had also stressed the side effects of ipi, which made me more cautious (rightfully)
                  Second time around it was a consult on what to do with a tumour that was slowly progressing each quartlery scan (and then over a year this meant quite marked progression sadly), We were going to do surgery but he prompted us to reconsider TVEC (which we knew was an option). So we gave TVEC + pembro a chance, insurance hesitated but to the surprise of my doctor they approved (then changed their mind but we overcame that). And it seems to have worked.

                  Both times even hearing the same infor from him (he photocopied materials on staging and shared with me) just more clearly and in a less stressed setting really helped. I need to thank him – his idea and my current oncologist Dr Rapisuwon may have saved my life or at least given me a few more good years. I even kind of enjoyed the TVEC plus pembro as after a couple of months we got a hint from the ultrasounds it mighe be working, and then every two weeks ultrasounds (though really hard to interpret) showed slight improvement each time. Was worth the initial side effects (worst fever in my life maybe?!!)

                  Good luck Lilara. TVEC may only be for special cases but I did like Dr Lipson
                  Best wishes Mark

                  • November 24, 2020 at 3:28 am
                  Lilara
                  Participant
                    Hi Mark ,
                    Thanks for your advice and providing the doctor information:
                    Unfortunately, my mom has to be in USA to be seen by the doctor . In Canada the oncologist wants to try ipi by itself . Even though I think ipi and nivo will
                    Work better and according to dr Weber ipi1 mg and nivo 3mg might get rid of the side effects . I do not know what to do really . I have called john Hopkins and they told me they can’t see patient outside of Maryland .
                    Thank for your message
                    • November 24, 2020 at 3:32 am
                    Lilara
                    Participant
                      Hi Mark ,
                      Thanks for your advice and providing the doctor information:
                      Unfortunately, my mom has to be in USA to be seen by the doctor . In Canada the oncologist wants to try ipi by itself . Even though I think ipi and nivo will
                      Work better and according to dr Weber ipi1 mg and nivo 3mg might get rid of the side effects . I do not know what to do really . I have called john Hopkins and they told me they can’t see patient outside of Maryland .
                      Thank for your message
                Viewing 1 reply thread
                • You must be logged in to reply to this topic.
                About the MRF Patient Forum

                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                Popular Topics