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Experience with Yervoy / Keytruda Combo and w/ Crohns Disease
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Experience with Yervoy / Keytruda Combo and w/ Crohns Disease

› Forums › General Melanoma Community › Experience with Yervoy / Keytruda Combo and w/ Crohns Disease

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    • July 14, 2017 at 4:54 pm
    jazztubs
    Participant

      Hey All,

      I'm looking for anyone out there that has had the Yervoy / Keytruda experience who might also have Crohns disease.  I'm fairly healthy, in my early 40's, with Stage 4 disease.  Lived through IL-2 with 100% response, but then had brain mets a year later, plus a tumor in my intestine.  I"ve been approaching surgically, which has been good, but now time to be pro-active after colon surgery and 3 craniotomys.  Keytruda is recommended, but the docs think the combo with Yervoy is a best-bet.  Problem is I have a history with Crohns, and the doctors are very aprehensive about this one aspect: however, the Crohns as been "sleeping" for about 10 years.  No symptoms, and no treatment for it since surgery to remove strictured intestine in 2007.  So, Crohns doesn't seem to be active.  No adverse reaction to IL-2 or Interferon beyond normal side effects and didn't trigger Crohns

      This combo is the best bet, but the potential side effects of Yervoy could be detrimental… Keytruda alone may be fine, but we don't know long-term how fine it will be.

      Just looking for experiences with this combo, and especially if someone has Crohns and took the plunge (or had a doctor allowing the plunge).

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    • Replies
        • July 14, 2017 at 10:31 pm
        Bubbles
        Participant

          Hi Benjamin,

          Sounds like you've been through a good deal and while surgical cherry picking can be good….it can have its limitations.  I don't personally know of someone with Crohns taking immunotherapy, but I do have this:

          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/patients-with-preexisting-immune.html

          If you made it through IL2 you are one tough dude.  Plus, that's immunotherapy, too.  So…with close observation and self awareness….you can probably deal with this immunotherapy as well.  Ipi is the bad boy of side effects, and either anti-PD-1 product (Keytruda or Opdivo) are pretty dang good on their own, with researchers in the know predicting that responses to those with be as long or longer than those proven with ipi.  After all, we already know that response rates to ipi = about 15%, to anti-PD-1 about 40%, while the combo does offer about 50+%.   Hang in there!  I wish you my best!  Celeste

            • 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

              • July 15, 2017 at 5:02 pm
              Bubbles
              Participant

                Good eye!  Yes, back in the olden days of anti-PD-1 development they were pairing it with different mystery meats to see what would happen!!  Yes, I (along with my fellow ratties) got 6 (rather painful) different peptide vaccine injections to alternating thighs with our nivo infusions every 2 weeks for 6 months.  Then we were given nivo alone every 3 months for 2 more years.  And the short answer is yes…peptide vaccines were studied for their effect and the other short answer is NO!!!  They didn't help at all!!!

                Here's the report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/05/peptide-vaccines-do-not-trigger.html

                Oh, well.  Live and learn!!  Such is the life of a rattie.  At least we haven't done that precise thing to anybody since.  However, I do still hold out hope that SOMEDAY vaccines will provide a viable solution (or at least make up a part of it) for melanoma patients.  Yours, celeste

              • July 15, 2017 at 1:06 am
              betsyl
              Participant

                My husband was in a similar situation. Preexisting ulcerative colitis in remission for 15+ years. Doctors decided not to rick Yervoy. Went with Keytruda as single therapy. Seems to be working. Fingers crossed!

                Best of luck to you! 

                  • 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.

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