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Need help in choosing a immunotherapy

Forums General Melanoma Community Need help in choosing a immunotherapy

  • Post
    danny201819
    Participant

      Hi , I am diagnosed with vaginal melanoma with lypmh node involvement. One nodule is positive for melanoma and the rest of the area is melanoma in situ. Surgery is not an option as getting the margins will mean taking out the bladder and rectum. Melanoma specialist presented mw with 3 options 

      1. Opdivo only 

      2. Ipi and Yerviy

      3. Ipi , Keytruda and aspirin. 

      He mentioned testing for mutation will not change anything for me and basically recommends option 3 which is clinical trial started in jan 2018 and has 75% response rates. 

      The side effects are also in the same order with option 3 having the most side effects. I am 58 and physically fit with no other medical conditions. 

      Please share your experiences and success stories. I am need help to decide if i should go for option 2 or jump straight into option 3 .  Also if you are a vaginal melanoma survivor please share your story I am in desperate need of hope.Looking forward to your success story.

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        Bubbles
        Participant

          Here is a primer that I put together regarding melanoma treatments that you may find helpful:

          https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

          Ipilimumab (ipi for short) is the same as Yervoy…an anti-CTLA-4 product.  Alone it has around a 15% response rate for advanced melanoma and side effects that are pretty consistent for immunotherapy generally – fatigue, rashes, joint pain, and various immune responses.  They are covered in the primer.

          Nivolumab (also known as OPDIVO) is an anti-PD-1 product, as is Pembrolizumab (also known as Keytruda).  Both have about at 40% response rate in advanced melanoma and similar side effects as ipi, though they are usually less frequent and less harsh than those associated with ipi.

          While studies have been done on the pembro/ipi combo, I don't think it is FDA approved yet, so you may have to participate in a clinical trial for that one.  Many of us here have participated in trials…but such participation does come with its own can of worms.

          Ipi/nivo is a combo that is FDA approved.  Side effects mostly come from the ipi component and are greater than when either anti-PD-1 product is taken alone.  Response rates are greater than 50% with this combo and studies report about the same with the ipi/pembro combo.

          Here are some reports on NSAID's (like aspirin) and melanoma (with links within):

          https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/aspirin-nsaids-and-melanoma.html  

          There is also a glossary to melanoma acronyms at the end of the primer.

          I hope these help.  And while these numbers may look a little dismal, have hope.  Many of us on this forum are still around after these treatments.  I had nivo alone after brain and lung mets in 2010 and remain melanoma free today with no treatment after my last nivo infusion in 2013.

          You can do this.  Hang tough.  There are many caring well informed melanoma peeps here.  Ask more questions as you have the need.  I wish you my best.  Celeste

           

          lkb
          Participant

            Danny, welcome. Sorry you have to be here, but glad you found us. I've had progression (neck tumors, brain met) on Nivo alone after 90 days. However, everyone is different and it's hard to predict how a body will respond. Celeste is right about finding lots of caring, informative melanoma peeps here; as you can see from her post, she's one of the most generous! Keep us posted.

            Lisa

              KarinaJ
              Participant

                Hi IKB quick question, how do your neck tumors feel??? how do you know they are tumors?? I have some swollen tissue and they did an ultrasound but it only showed muscle and nothing else.

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