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jazztubs

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      • March 30, 2018 at 3:38 am
      jazztubs
      Participant

        Right on brother! I'm with ya…After 6 cycles of IL-2, by sideburns greyed out.  Fast forward to about 2 years after and around 6 months ago when I started Opdivo, in a matter of weeks my chin went grey.  My wife finally gave up on controlling my facial hair situation and I've grown a fat grey beard.  Dig it! Melanoma sucks, but at least I have my divine facial haircheeky  The grey has yet to go south…but who knows!

        • August 2, 2017 at 3:40 pm
        jazztubs
        Participant

          Hi Everyone,

          First, thank you for your insights.  

          I did fail to share some interesting things about my Gamma Knife experiences: I have had a number of lesions treated with the Gamma Knife.  The first time, I had seizures right after treatment on the way home–around 3 grand mals.  That lesion then "exploded" shortly after that, and required surgery to be removed.  Then, about 11 months later, the second lesion exploded as well, requiring an emergency procedure.  This go around, one of the lesions had been treated (the one that is not new) and did shrink, but now is growing again.  The radiation oncologist said there is something "weird" about my lesions and that they don't like the Gamma Knife.  So, there is a fear that more Gamma Knife could cause bleeding and risk of immediate death.  They are hesitant to do another procedure of this type and are now recommending the WBRT.  My oncologist only focuses on Melanoma (Dr. Branden Curti at Providence in Portland, OR) and is considered a top guy in the Melanoma field utilizing immunotherapy: while I don't like his recommendation (who wants WBRT?), I trust his expertise.  I agree that just doing Keytruda could cause some ill effects of swelling as well, and this is risky too.  I did respond very well to il-2, so I hope I would also respond well to Keytruda.  I am not BRAF +, so targeted therapy is out of the question for now.

          So, that's where it's at for now.  All kind of risky… 

          Ben

          • July 15, 2017 at 4:38 pm
          jazztubs
          Participant

            Thank you so much and I wish the best of luck to you and your husband.  Most doctors I've worked with, including some top immunotherapy experts are a strong "no" on Yervoy due to the risk.  My challenge is I can't really engage in immunosuppresents due to the fact that I was on them for the Crohn's and we believe that is what caused my primary spot of Melanoma… Sounds like Keytruda will be the main drug as I move forward.

            • July 15, 2017 at 4:34 pm
            jazztubs
            Participant

              Thank you so much Celeste: very helpful information. You also have had quite the journey.  I noticed the use of peptides with your PD-1.  What are the peptides? Part of a vaccine? Was there any measurement on the efficacy with this part of the treatment?  Congrats on NED, btw!!! Ben

              • March 27, 2017 at 6:47 pm
              jazztubs
              Participant

                Hi Jennifer,

                Cannabis is legal in the state that I live in both recreationally and medically.  I have a medical card and a grower.

                 

                 

                • July 30, 2016 at 4:13 pm
                jazztubs
                Participant

                  100% agree that a specialist is the way to go.  My general Oncologist knew immediately that my diagnosis was way out of his league, and sent me around 5 hours north to one of the leading Melanoma docs on the West Coast, who specializes in IL-2 treatment.  This saved my life, at least for now… 

                  Wishing you positive energy on the journey–it's life changing, but does not mean the end if you play your cards right.  Melanoma sucks, and while this sounds odd, it's the best time to have a Melanoma diagnosis–20 years ago, it was a death sentence. Not so anymore.

                  • July 30, 2016 at 4:13 pm
                  jazztubs
                  Participant

                    100% agree that a specialist is the way to go.  My general Oncologist knew immediately that my diagnosis was way out of his league, and sent me around 5 hours north to one of the leading Melanoma docs on the West Coast, who specializes in IL-2 treatment.  This saved my life, at least for now… 

                    Wishing you positive energy on the journey–it's life changing, but does not mean the end if you play your cards right.  Melanoma sucks, and while this sounds odd, it's the best time to have a Melanoma diagnosis–20 years ago, it was a death sentence. Not so anymore.

                    • July 30, 2016 at 4:13 pm
                    jazztubs
                    Participant

                      100% agree that a specialist is the way to go.  My general Oncologist knew immediately that my diagnosis was way out of his league, and sent me around 5 hours north to one of the leading Melanoma docs on the West Coast, who specializes in IL-2 treatment.  This saved my life, at least for now… 

                      Wishing you positive energy on the journey–it's life changing, but does not mean the end if you play your cards right.  Melanoma sucks, and while this sounds odd, it's the best time to have a Melanoma diagnosis–20 years ago, it was a death sentence. Not so anymore.

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