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Opdivo and Yervoy

Forums General Melanoma Community Opdivo and Yervoy

  • Post
    Coach2u
    Participant

      13 years ago I had a melanoma removed from my leg, 3 years ago a lump on my leg turned out to be metastatic melanoma.  I had been getting CT scans every 4 months and they were clear. In February I found another lump also melanoma and after surgery started Keydruda.  After 4 treatments it has not worked and now there is a spot on my spine and two tumors in my liver.  The plan is Opdivo and Yervoy as I am BRAF negative. Just got this news today and really scared, anyone have any success with this treatment? Had a vacation planned out of country bit not sure should go. Then I think I will never feel this good again but afraid of side effects.  

       

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    • Replies
        MelanomaMike
        Participant

          Im with you 100%! im Mike nice to meet you, i too didnt have any luck with Keytruda {Pembro} and after 7 infusions was taken off {last week to be exact} and like yerself, this Friday 5/11/18} will start the Opdivo & Yervoy combo. I had a few side effects with the Pembro, a TSH of 45.3 {Thyroid Hypo} leg swelling, and all my tattoos raised up like Braille for the blind. So, i look at it this way, iv already had experiances with "side effects" so, whats a few more if any? comes with the territory right? let each & every side effect remind you that your still alive..thats my approach…hang in there Brother! {or if your a Sister!}….Mike

          Johnjk04
          Participant

            Six years ago I had melanoma in the brain + many of my organs. 53 of us from Yale and Sloane were placed in the initial Yervoy and Opdivo clinical trial. It used to be 11% survival rate for two years when you became stage IV. Our group had an 80% survival rate after two years. Did I itch with a rash for two years? Yes. Did I lose function of my pituitary, adrenal and thyroid glands? Yes. But I've been NED for 5.5 years. Important, any side effects with this treatment must be reported to your oncologist, not the time to hide anything. Go on your vacation, enjoy your life, good times are coming.

              DoubleTT
              Participant
                you give me great hope….you are amazing!
                DoubleTT
                Participant
                  you give me great hope….you are amazing!
                Edwin
                Participant

                  I would postpone your trip.   I am also BRAF negative and my melanoma got much worse while receiving Keytruda.  The Opdivo and Yervoy combo caused my tumors to disappear or shrink.  I could not have travelled while receiving this combo treatment.  After I was on Opdivo only Ior a few months I vacationed 2 weeks in Australia and 2 weeks in Chile.

                  Edwin

                    Coach2u
                    Participant

                      Thanks for your reply’s. Maybe there is some hope. Hopefully I will get the treatment this Saturday. The staff is on strike until today so no none to schedule and get insurance approval.  I would have one session before vacation and a week to see effects which sound extensive. I had zero side effects with Keydruda, guess because it was not working.  Two different views on the vacation, appreciate both. I would be happy to continue living so will tolerate side effects as best I can.  Will try to cancel cruise but it’s non refundable so if side effects not too bad will probably go. The doctor said diarrhea is the worst. Will Imodium help and maybe probiotics? Thanks again for some hope.

                      Mike K

                      bjeans
                      Participant

                        Mike, my husband's oncologist recommended that he start taking a probiotic before he started treatment, and continue throughout. This doctor is known for managing side effects very well, so we listened. Some say it's better to use a probiotic with more than one strain. A dietician who helped me with gut issues suggested one that's stronger than mine for my husband. He's also drinking kefir every day and eating more prebiotics – that feed probiotics. (I make some "energy bites" with raw oats, for example.)

                        We can't know if this regimen has been the reason he's so far had no gut problems, but he was on an antibiotic and didn't have any stomach symptoms – a first. He's in a study and is either on 480 nivo every four weeks or 280 nivo every two weeks with a 1/3 dose of ipi every six. He's only had three infusions, and if he's in the nivo/ipi arm, he would have received that week #1. 

                        Good luck!

                        DoubleTT
                        Participant
                          Hello there bjeans…what was the probiotic and probiotic your husband started…I want to do same and consume an anti inflammatory diet. I suffer from joint pain as I was thrown into menopause last treatment and do suffer but problems when I was on a clinical trial. Starting Opdivo soon ! Thank you. Best to you and your hubby Tracey
                          bjeans
                          Participant

                            Tracey, she mentioned "Visbiome High Potency Probiotic" as a possibility. It's refrigerated. It was less expensive on the Visbiome site than elsewhere. But there are many good probiotics, some less expensive. Suggestion: read ingredients. For example, some probiotics contain inulin (from chicory root), which for some people with IBS/sensitivity to FODMAPs can cause problems. 

                            Prebiotics that feed good gut bacteria (probiotics) are nondigestible fiber from foods, like Jerusalem artichokes (sunchokes), onion, garlic, raw oats, asparagus, many more. Raw often provide more than cooked. Some of those foods cause gut problems for some people so know thy gut. 

                            DoubleTT
                            Participant
                              thank Bjeans for response! Yes I have IBS so this brand sounds good. I went dairy free as well as on drugs cant handle it. Onions and raw oats ouch! But I do know the oat bites recipe and just go for it as I know it benefits the gut. I will try the kefir as well. Been reading about it. Love my Almond milk but it lacks in some benefits for the tummy. Thanks again Tracey
                              bjeans
                              Participant

                                Visbiome has lactic acid, which can come from milk. There are lots of raw oat energy bite recipes – I can PM you a link to the one my dietician whipped up. Some kefirs and yogurts are lactose free. I can tolerate Green Valley Organics but not others, most likely because of something other than lactose. Good luck!

                                DoubleTT
                                Participant
                                  would love some new energy bite recipes
                                  thanks so much!
                                  Edwin
                                  Participant

                                    During your Yervoy and Opdivo comb treatment you should be able to contact your doctor and be near a hospital.   I planned to attend the October 2016 reunion of a high school class of 1976 in Australia.  I began Yervoy and Opdivo treatment on April 1, 2016.  I had very bad diarrhea even with taking Imodium.  Some days I could not read.  It was the middle of September, before I was well enough to travel far.  I did attend that class reunion.  I now have a 5.5 mm diameter tumor in my neck which will be treated by radiation.   Otherwise, no indication of cancer.  I continue to receive Opdivo.

                                    Edwin

                                    DoubleTT
                                    Participant
                                      I am also NRAS (BRAF negative) ..my doc is pushing insurance company for just Opdivo as adjuvant. He is holding my free govt medical card we have here in Canada for the combo( you received) when my mets return. I was 3b but after 20 months it showed up on my t12 vertebrae. Had mega dose radiation. Doc wants to try and buy me few years with just Opdivo before it comes back. It’s gone right now but melanoma is a sneaky b#$^#@…I am happy to have found this group. I been very depressed. I had Thyroid cancer in 2011 cured and never thought I get another completely different cancer 5 years later. Iam single as two years ago I asked my boyfriend to leave…he didn’t want to handle it with me. I have 2 great sons 18 and 20 but having a partner through all of this would have been great. Count your blessings for the support you have in your significant other. Hugs to all of you. Hope to stay in touch. Hopefully insurance is sorted out by the Friday and I start Opdivo in 2 weeks. My hospital is Princess Margaret Cancer Centre in Toronto Number 4 in he world for research.Tracey
                                      Coach2u
                                      Participant

                                        Tracey interesting one of my tumors is also in T-12, and you said radiation helped with what side effects? Although I also have 2 more on my liver. The doctor mentioned radiology but I think that’s  after the immunotherapy.  I am fortunate to have a loving wife, two sons and daughters in law and 4 grandchildren. One just born, a boy. Guess he is my replacement.  Anyway it’s difficult enough to do this with support I can’t imagine without. Wish you all the luck in the world. Mike

                                      ed williams
                                      Participant

                                        Hi Coach2U, do some reading then ask your Oncologist about going on a trip then make a decision. I will give you a link below to side effects and when they usually happen so you can read up on what to expect from a % or chance of things developing. Ipi/nivo has great results but also has high % of patients developing IRAE's that require treatment, usually with steriods. Most side effects can be managed but remember the golden rule "don't delay in telling your oncologist when something is changing like diarrhea, the earlier the oncology team catches the side effect the faster they can get things under control. Wishing you the best of luck with treatments!!!Ed https://www.uptodate.com/contents/toxicities-associated-with-checkpoint-inhibitor-immunotherapy

                                          Coach2u
                                          Participant

                                            Thanks Ed, I will review all this info. The doctor did say go, and that he would prescribe some steroids to take along, but after reading the side effects, they seem pretty severe and maybe being out of the country is not the place to be when stuff happens. Steroids have their own set of problems. Not to mention with this diagnosis just received yesterday the wind is pretty much out of my sails at least for now. River cruise in Germany with wine and cheese tasting May not be the thing to do with two tumors on my liver.  Then Again why not. I have an infusion Saturday and a week before departure. Not sure of anything right now, total shock and fear. Mike

                                            MelanomaMike
                                            Participant
                                              Oh just go already! Bring a pack of butt wipes, a small bucket to throw up in, bring the steroids, and anyother meds you may think helpfull & have some fun!you will regret it after a few weeks of being at home with treated/tolerable side effects…do it!
                                              obtu.bt
                                              Participant
                                                I had only yervoy but even with immodium diarrhea was not manageable… I even can not go to office to work…
                                                Diarrhea was decreasing just before taking the new dosée but then restarting…
                                                I had this EA after taking the 2th doses. So there was no problem during about 7 weeks
                                                ed williams
                                                Participant

                                                  I took it easy on Alcohol the first year of treatment, didn't want to be kicked out of the trial because the liver enzymes were out of wack. I was in a blinded trial so I didn't know if I got Ipi/Nivo or either as a monotherapy, ipi has a pretty bad reputation for developing diarrhea which leds to a lot of patients being removed from treatments!!!Tumors on the liver and alcohol plus ipi might not be the smartest combination, just saying!!!Best Wishes!!!Ed

                                                  Mark_DC
                                                  Participant

                                                    Mike – I hate to be a bore but when I was deciding whether or not to try adjuvant ipi two years ago, my second opinion doctor warned me of side effects and how one of his patients had to be evacuated from iceland. I went ahead with the ipi, i think i had bad diarrhea so they stopped a second dose, i could manage with immodium or steroids, then i managed to get a borderline level 4 adverse event AE. I felt totally fine at the time. So while on ipi i did no travel (even though my job has a fair bit of international travel). Later i was put onto keytruda and have been able to travel abroad a lot.

                                                    your doctor seems open minded, maybe you will be OK since you are travelling after your first ipi, but i would check with your doctor. I did not travel while on ipi, and that was a good (but painful since my family is overseas) decision. Once off the ipi i could travel. But check with your doctor, i would be cautious personally

                                                    sorry its such a difficult decision, as therre are benefits from going on holiday and affirming ones life

                                                    good luck Mark

                                                    Coach2u
                                                    Participant

                                                      They think it’s ok and claim that the effects are  cumulative so after first dose it takes a while for them  to kick in. Obviously not your experience. So for some no problems, one guy had no gastrointestinal issues and attributed that to probiotics. I should have about one week after infusion so maybe my body will answer for me.  Appreciate your input, BTW Keydruda did not work for me. I had no symptoms at all and was thrilled until latest scan showed growth. Hope you have much better luck, it worked well for my sis in law with lung cancer. She is now in remission. 

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