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Failed Yervoy
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Failed Yervoy

› Forums › Mucosal Melanoma Community › Failed Yervoy

  • Post
    • October 27, 2014 at 4:25 pm
    theresar
    Participant

      Quick review of history- I'm a 54 yo woman initially had vulvar lesion removed 3 years ago with clean margins and lymph nodes. Now Dx in early July 2014 with metastatic mucosal melanoma with lesions on my liver and lungs. Completed my 4th infusion of Yervoy 9/25 and on follow-up visit 10/23. My oncologist said he did not need a CT to determine that the Yervoy did not work. (i might agree with the status of my belly and my liver function tests are dangerously high, LDH soaring.)

      I am  seeing a melanoma specialist and he has recommended 2 options  1) I can move forward with the Keytruda which would be the next step and he would obtation a CT as a baseline but he would reccomend the Keytuda very cautiously because of my liver function-he is concerned that the side effects on my liver could put me into failure quite quickly. Or route 2) He could start me on steroids and that would temporarily make me feel much more comfortable but obviously would not treat the tumors. A palliative care and likely hospice referral would come with this option.

      I was told that once I started on steriods my option for the Keytruda would be off the table. Also told that Iwould not qualify for any clinical trials because  my liver function is so bad. I know that there are other treatments out there that have been approved. I do not have any of the genetic mutations ie BRAF, etc. identified.

      I know that there are other options out there beginning with a 2nd opinion and certainly alternative therapies but just looking for thoughts experiences and advice. I do live in Michigan…..

      Where there is Faith there is Hope!!

      Theresa

    Viewing 5 reply threads
    • Replies
        • October 27, 2014 at 5:34 pm
        BrianP
        Participant

          Oh Theresa.  I'm so sorry for your latest set back.  My initial thought is why wouldn't you try Keytruda?  Not everyone experiences liver toxicities with Keytruda, in fact most don't, so I wouldn't use that factor for ruling it out.  Keytruda has been shown to work fairly quickly and I think that is very important for you right now.  Other options may be available but probably at the cost of several weeks.  I just feel like you should go for it.  Hang in there Theresa.  Prayers coming your way.

          Brian

          • October 27, 2014 at 5:34 pm
          BrianP
          Participant

            Oh Theresa.  I'm so sorry for your latest set back.  My initial thought is why wouldn't you try Keytruda?  Not everyone experiences liver toxicities with Keytruda, in fact most don't, so I wouldn't use that factor for ruling it out.  Keytruda has been shown to work fairly quickly and I think that is very important for you right now.  Other options may be available but probably at the cost of several weeks.  I just feel like you should go for it.  Hang in there Theresa.  Prayers coming your way.

            Brian

            • October 27, 2014 at 5:34 pm
            BrianP
            Participant

              Oh Theresa.  I'm so sorry for your latest set back.  My initial thought is why wouldn't you try Keytruda?  Not everyone experiences liver toxicities with Keytruda, in fact most don't, so I wouldn't use that factor for ruling it out.  Keytruda has been shown to work fairly quickly and I think that is very important for you right now.  Other options may be available but probably at the cost of several weeks.  I just feel like you should go for it.  Hang in there Theresa.  Prayers coming your way.

              Brian

              • October 28, 2014 at 1:39 pm
              kalisama
              Participant

                I too am sorry to hear about these developments for you. I would lean towards the Keytruda if it is an option. In my experience, steroids are not a treatment per se, more of an adjunct. I have had the opposite experience with steroids, i have never felt better from being on them. In fact, they make me quite ill, and I was just 'joking' with my oncologist yesterday how I suffer every single side effect that one can from steroids. they make me miserable, and am finally on a taper plan after one month plus of extremely high doses. cannot wait to get them out of my system.

                I'm also in a similar situation where i am being guided towards paliative and hospice care during the next month, as things are not looking well for me, but there is a window now. these are such challenging times emotionally when added to the physical trials we are battling.

                I wish you the best and do suggest specialists for more perspectives. 

                Bless,
                kali

                • October 28, 2014 at 1:39 pm
                kalisama
                Participant

                  I too am sorry to hear about these developments for you. I would lean towards the Keytruda if it is an option. In my experience, steroids are not a treatment per se, more of an adjunct. I have had the opposite experience with steroids, i have never felt better from being on them. In fact, they make me quite ill, and I was just 'joking' with my oncologist yesterday how I suffer every single side effect that one can from steroids. they make me miserable, and am finally on a taper plan after one month plus of extremely high doses. cannot wait to get them out of my system.

                  I'm also in a similar situation where i am being guided towards paliative and hospice care during the next month, as things are not looking well for me, but there is a window now. these are such challenging times emotionally when added to the physical trials we are battling.

                  I wish you the best and do suggest specialists for more perspectives. 

                  Bless,
                  kali

                  • October 28, 2014 at 1:39 pm
                  kalisama
                  Participant

                    I too am sorry to hear about these developments for you. I would lean towards the Keytruda if it is an option. In my experience, steroids are not a treatment per se, more of an adjunct. I have had the opposite experience with steroids, i have never felt better from being on them. In fact, they make me quite ill, and I was just 'joking' with my oncologist yesterday how I suffer every single side effect that one can from steroids. they make me miserable, and am finally on a taper plan after one month plus of extremely high doses. cannot wait to get them out of my system.

                    I'm also in a similar situation where i am being guided towards paliative and hospice care during the next month, as things are not looking well for me, but there is a window now. these are such challenging times emotionally when added to the physical trials we are battling.

                    I wish you the best and do suggest specialists for more perspectives. 

                    Bless,
                    kali

                Viewing 5 reply threads

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