MRF-Logo2019-Horizontal-RGB
Continue with Yervoy?
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Continue with Yervoy?

› Forums › General Melanoma Community › Continue with Yervoy?

  • Post
    • August 11, 2017 at 2:40 pm
    ryanbkyle
    Participant

      I'm Stage 3A and completed my 4th Yervoy (10 mg) infusion in June.  I got through all four pretty well until last month when I developed some side effects.  Come to find out, my pituitary gland stopped working and now I'm on thryroid medication and sterioids for the rest of my life.  I'm feeling great now, but am wondering if I should go through with the 3-month maintenance infusion that is coming up in September.  I'm worried about additional side effects developing.  Can anyone offer any advice? 

    Viewing 1 reply thread
    • Replies
        • August 11, 2017 at 3:09 pm
        jennunicorn
        Participant

          Typically with that kind of side effect, most do not continue with Ipi. You've gotten the main doses and that's quite a lot more than most people get through. I am not sure I would be comfortable continuing since it has already had a permanent effect on your body.

          • August 11, 2017 at 7:54 pm
          ed williams
          Participant

            Hi Ryan, I had a link to a pretty good panel talking about your question. At about the 4:00 min mark they talk about endocrine system and ipi. https://www.youtube.com/watch?v=VCOAk7i9kmU

              • August 13, 2017 at 3:45 am
              Sharon93065
              Participant

                Thank you for that link.  I've just watchedf it. Ryan, did you have Yervoy/Opdivo combo or just Yervoy? My liver panel is sky high so my 4th treatment that was next Wed is canceled.  I am very sad.  But I've read where that's not always so bad.   But i have read that we need to keep the maintenance doses.  Once my liver gets better that's what i will have.  And i believe it is Opvio.  I still don't know how to abbreviate ha!  I've also read the side effects aren't as bad with maintenance.  I also am on thyrod now, and prednisone.  But i believe the prednisone is just until my liver is more stable.  This just happend two days ago so i'm still upset and worried.  

                • August 13, 2017 at 3:46 am
                Sharon93065
                Participant

                  Did you get a new Petscan and how are your tumors?  Are they NED?

                  • August 13, 2017 at 4:25 pm
                  jennunicorn
                  Participant

                    At stage 3 he his NED after surgery and only qualifies for Yervoy alone, not the combo, it is called adjuvant treatment, means it is being taken to prevent melanoma from coming back. Just wanted to clarify that for you 🙂

                    • August 14, 2017 at 6:04 am
                    Sharon93065
                    Participant

                      Hi Jennifer, I've just read your history as well.  Thank you for such a detailed history.  I also enjoy the companionship of a dog.  My live in a studio on my daughters property, and her 2 year old Sadie is a brown labradoodle that spends as much time with me as with the family.  She has been my comfort.  

                       

                      • August 14, 2017 at 2:41 pm
                      jennunicorn
                      Participant

                        Dogs are the best therapy 🙂

                        • August 13, 2017 at 11:52 pm
                        Ridingaroundwith27Jennifers
                        Participant

                          I had the Yervoy/Opdivo combo and had liver numbers go through the roof.  Prednisone helped but I ended up needing CellCept in order to get the AST and ALT numbers low enough to get off the prednisone.  We waited two months and then I started the Opdivo maintenance (nivolumab or nivo).  Luckily my liver numbers have stayed stable.  Hopefully once yours stabilizes and AST and ALT come back down you can start nivo maintenance.  My oncologist said about 50% of people with liver issues on the combo are OK on the maintenance with no way to tell until you try it.  I only had two of the combo treatments and still saw positive results with over 20 tumors shrinking or disappearing to only 2.  Try not to worry too much.  Good wishes to you.  Hopefully you've had enough doses to see tumors shrinking.

                          Jennifer

                          • August 14, 2017 at 5:44 am
                          Sharon93065
                          Participant

                            Tthank you Jennifer.  That's why i love this Forum and people like you to help. 

                            • August 14, 2017 at 5:52 am
                            Sharon93065
                            Participant

                              I've just read your history, you have really been thru it.  My first did mri on brain before treatments and Praise God not in brain, but you were not so fortunate.  May our Lord keep his healng hands on you young lady and keep beeing helpful.  You are a blessing to me.

                              • August 13, 2017 at 11:56 pm
                              Ridingaroundwith27Jennifers
                              Participant

                                Hi Sharon – was trying to reply to your post and ended up posting in the wrong place.  Hope you catch it.  Good wishes to you.

                                Jennifer

                                • August 15, 2017 at 3:38 pm
                                ryanbkyle
                                Participant

                                  I only had Yervoy.

                                   

                            Viewing 1 reply thread
                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                            Popular Topics