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Yervoy medication helpful??

Forums General Melanoma Community Yervoy medication helpful??

  • Post
    Happygal
    Participant

      I am to decide to start Yervioy within the week.  I am scared if the side effects outweigh the benefits.  I live a crazy full life and am so very afraid of this treatment.  Have you done it?  Did it affect your daily life?

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    • Replies
        MovingOn
        Participant

          Your Oncologist should be aware of the new research which points to benefits of PD1/PDL1 immunotherapy over Ipilimumab in a stage 3 adjuvant setting. Ask them about this. Ipilimumab has saved many people so I’m not saying anything bad about it. 

            Newmanbell
            Participant

              From my understanding the new drug is not yet FDA approved is it?  My husband is Stage 3b and had to stop after 3 infusions due to toxicity.

              Donna

              Nashvillian
              Participant

                Hey newman I am starting Opdivo tommorow for stage 3b melanoma.

                obtu.bt
                Participant
                  Hi Nash villain, do you know how much would be the dose of Opdivo and with which frequency? I am currently on yervoy with 3mg per kg for 4 times to get every 3 weeks
                  Happygal
                  Participant

                    hello, how are you feeling with it so far?

                    obtu.bt
                    Participant
                      I have got 2nd infusion of nivo last Friday and at the same time radiotherapy is going on. Currently no side effect and no problem… I hope it will continue in that way. Today I had my 7th séance of RT. I will have 13 more.
                      obtu.bt
                      Participant
                        Sorry I am taking ipi and not nivo… Nivo treatment will start once I finish Ipi.
                        Happygal
                        Participant

                          very good news, hopefully this is a continuance for you!!! I chose not to do radiation, because of the location, but I know it does help many.

                          liberty04281
                          Participant
                            The same thing, 4 times, every 3 weeks one infusion of Yervoy 3mg per kg.
                            Nashvillian
                            Participant

                              From what I understand I am one of the first ones to get it for this application.

                              Happygal
                              Participant

                                yes, that is what I have heard is a common side effect and outcome.  Thank you

                                MovingOn
                                Participant

                                  To get Pembro/Keytruda or Nivo as a stage 3 patient you can decline surgery, or if you have had surgery then you would need to take two steps: #1 show your doctor that there is research supporting Pembro or Nivo as providing greater benefit than Ipi in a stage 3 adjuvant setting. #2 your doctor will then need to convince your insurance about the benefit of Pembro or Nivo compared to Ipi. This is not a certainty but it is an approach which has worked when the Oncologist jumped in and pushed for it with insurance.

                                Hukill
                                Participant

                                  I was stage 4 so the side effects were no concern for me. I had 5 yervoy/opdivo combos and 18 opdivo. There were side effects starting with the rash the second week. 16 months later I still have the rash but my rash never itched or burned as so many do. I went through multiple side effects with at least 5 or 6 at the same time since the 3rd dose of yervoy. I still have multiple side effects but my body has handled them well, I still go to work everyday and still get opdivo every 2 weeks. But my 7 melanoma tumors in my lungs are gone and I am NED. If you are worried about side effects ask yourself what happens if you don't take the drug?

                                    Happygal
                                    Participant

                                      I know, and it is a part of my thinking too, it is the 10% chance that it helps that is concerning and with Melanoma being such an invasive and highly recurring cancer, I am just trying to make sure I cover everything in my mind and heart before I make my decision. I send you my greatest well wishes and pray for a continued diagnosis for you and future outcome and am thankful for your response.

                                    Rocco
                                    Participant

                                      Hi Happygal –

                                      I was on a trial for Ipilimumab (now Yervoy) back in 2008 – 2009.  The dosage was 10MG/KG – unsure what your dosage might be.  I worked full time during all of it.  Had some side effects (eye issues – somewhat rare but treatable) but nothing that kept me from living life and working.  Ipilimumab worked for me as I was a responder and have been NED (no evidence of disease) ever since.  At Stage IV my decision to go with Ipi was simple – I wanted the chance to live so I jumped at the chance to get into the trial.  It worked for me – no regrets.

                                      Sharon93065
                                      Participant

                                        I had 3 of the 4 treatments of Yervoy/Opdivo combo due to raised liver levels.  Second Petscan has shown most of the 6 tumors you cannot see anymore!  I can now buy green bananas!  Bringing my ALT/AST down now with Prednisone.  And now on thryroid.  But "I'm Walking On Sunshine, Oh Yeah, Feelin Good!" Side effects, low thyrod, fatigue, rashes.  Yes it is worth it!

                                         

                                          Sharon93065
                                          Participant

                                            ow did it affect my daily life?  Being 70 I retired.  I was part time and I still go in and work maybe 4 hours a week or evry other week as a bookkeeper at sons computer store.  But don't rish  your life by not doing it.  Is it the combo or just Yervoy? 

                                            Happygal
                                            Participant
                                              It is just Yervoy, thank you for your information. This is all so helpful
                                              Happygal
                                              Participant
                                                Thank you and congratulations on your achievements with this. I feel a lot better about this as everything I had heard was negative before I came on here.
                                              Gene_S
                                              Participant

                                                Hello,  I know everyone reacts differently to Ipi but just wanted to tell you about my husbands experience but he was Stage IV.  He was on IPI/Yervoy at 10 mg/kg for the initial 4 infusions for 12 weeks and then went on maintenance doses for an infusion every 12 weeks for 2 and 1/2 years and also had GMCSF which were self injections every day for 14 days and 7 days off for the full time as the Ipi.  He had fatigue and some other things but he also was going through detached retina surgeries (5 of them in one eye).  If you would like to read his story it is in his profile.

                                                He was stage IV with lesions in the liver, lungs an unresectable one at the cervical spine and 4 sub q's up at the unresectable lesion.  He has been NED for over 5 years.

                                                Judy (loving wife of Gene Stage IV and thanks to Ipi/Yervoy and GMCSF NED for over 5 years)

                                                  Happygal
                                                  Participant

                                                    thank you for your story.  I understand everryone has a different story and all of tehm are inportant.  They have all helped me to confirm what I initially felt abut then 2nd guessing can really get you.

                                                    Thank you to everyone for their input, so appreciated and healthy healing blessings to all!!!!

                                                  liberty04281
                                                  Participant
                                                    I had Yervoy treatment at stage 4 melamoma. It worked for me, and I didn’t have side effects except rash on small area on my leg. Last infusion of Yervoy was beginning of April 2015.
                                                    Now I am on six month scan.
                                                    Go for it#
                                                      obtu.bt
                                                      Participant
                                                        Hi Liberty, how many times you got Yervoy? And what was the dose? 3mg/kg or 19mg/kg?
                                                        Happygal
                                                        Participant

                                                          such good feedback, thank you so much.  I will be going ahead with medication

                                                        liberty04281
                                                        Participant
                                                          I also had radiation.
                                                          Happygal
                                                          Participant

                                                            I received my first treatment yesterday, Yervoy full dosage. It really wasn't as bad as I thought it would be… I was very scared, today, just feeling extra tired and very thirsty… I can do this!

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