Keytruda+Yervoy+CyberKnife

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    • June 24, 2017 at 7:55 am
    Laurus
    Participant

      Hi everyone,

      I'm 35 years old and I was diagnosed with stage 3b melanoma in November 2016. I live in Japan and melanoma is very rare here. There is very little information about the treatment of melanoma. So I need your help.

      I had the surgery to remove the melanoma around the knee and two lymph mets around the groin/pelvis in December 2016.

      I had 4 infusions of Opdivo from January to April 2017 to treat one more lymph met around the pelvis. But PET scan showed old one(same size) and new lymph met(11mm) around the pelvis in April, so I had 2 infusions of Yervoy from April to May 2017. And I got side effects, which were severe diarrhea, headache and fever. I've been taking Prednisolone but sometimes I still have headache and fever.

      My latest PET scan showed the growing lymph met from 11mm to 19mm in June 2017.

      Next week, I'll start a infusion of Keytruda and have a CyberKnife for the growing met. In Japan, the Yervoy/Opdivo combo and Yervoy/Keytruda combo haven't been approved. After some infusions of Keytruda, I'll try some infusions of Yervoy again.

      My doctor is a specialist in cancer immunotherapy and he thinks the CyberKnife is the best way and the only option for me. I did some research and I've just found Keytruda might work after failing Yervoy/Opdivo, so there is a ray of hope of the Keytruda treatment in my case as well.

      And I've just found there is T-VEC clinical trial here. Currentry I've been searching for other ways.

      Are there any other solutions to this situation? I am very interested to know if anyone else has/had a similar experience to me. CyberKnife is the only option in my case?

      Thank you,

      Takuya

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    • Replies
        • June 24, 2017 at 9:16 am
        Laurus
        Participant

          And I'm BRAF negative!

            • June 24, 2017 at 3:18 pm
            Bubbles
            Participant

              Hi Laurus,

              I am sorry you are dealing with these things…but yes, many here have had cyber knife, SRS (stereotactic radiation), or gamma knife to good effect.  Additionally, there is a great deal of research demonstrating that the positive effects of immunotherapy whether it is Nivo (Opdivo), Pembro (Keytruda) or ipi (Yervoy), or any combination of those – when combined with radiation is more beneficial than radiation or the immunotherapy alone.  This link will allow to scroll through about a zillion articles about that if you are interested:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy

              Additionally, here is a link to some information about intralesional therapy, and T-VEC specifically, out of ASCO (a big cancer conference here in the states) that came out this month:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-all-things.html

              Hope that helps.  I wish you well.  Celeste

              • June 24, 2017 at 3:22 pm
              Bubbles
              Participant

                PS  Thought, given your situation and geographical situation, you might be interested in the origin of Nivolumab, now Opdivo!  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/love-potionor-patient9.html

                Hang in there!  You can do this!  Celeste

                • June 25, 2017 at 6:49 am
                Laurus
                Participant

                  Hi Celeste,

                  Thank you for your kind words and the summary on your blog! This is very helpful! I was worried about the side effects of CyberKnife, which decrease physical strength despite needing immune strength. But your informations helped me a lot. Two weeks ago, I had Head MRI and my doctor might be preparing for what's coming next too.

                  Opdivo is is well known to Japanese for ridiculously expensive medicine since it showed promise with other cancers. The Government of Japan made a demand for lower price to ONO and now ONO started to provide them at half the price in February this year.

                  I'll ask my doctor about T-VEC next week but after reading your informations, I'm prepared for CyberKnife.

                  Thank you for giving me the strength! And I appreciate the summary of ASCO 2017. I was wondering about the reports of melanoma. I'll update my result. I hope there is a light of this tunnel!

                  Takuya

                • June 24, 2017 at 7:30 pm
                UBContributor
                Participant

                  Sent you a private messsage. Sincere wishes for you to find a right treatment to fight this damn beast ! 

                    • June 25, 2017 at 6:51 am
                    Laurus
                    Participant

                      Hi UBContributor,
                      That's kind of you to say, thanks so much! I hope this beast finds Bella!!

                      Takuya

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