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Side Effects After Last Treatment????
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Side Effects After Last Treatment????

› Forums › General Melanoma Community › Side Effects After Last Treatment????

  • Post
    • November 18, 2018 at 9:15 pm
    BlessedForLife
    Participant

      Hi All,

      I completed my combo Ipi/Nivo treatment at the beginning of Oct. About 2.5 weeks later I started having the same type of gastrointestinal side effects I did when I first started treatment.  I hadnt had issues since going off Ipi 7 months ago.  

      My Dr. believes it’s related to treatment so has put me on a MedPack.  I know side effects can develop at any time, or even after treatment, but wondering if anyone has had an experience like this?  Or problems going off immunotherapy.

      Thanks!

       

    Viewing 6 reply threads
    • Replies
        • November 18, 2018 at 9:49 pm
        Threefitty
        Participant

          I had optivo only. Not a lot of side effects during treatment other than thyroid and some rashes. 

          For 2-3 months after treatment ended, the rashes got considerably worse. They leveled off at month 3 but still more than I had before treatment or even during most of it. I wonder if it will be a feature of life going forward, but it not so bad I am concerned.

          Gastro brings a lot more misery into play. Good luck.

            • November 18, 2018 at 10:53 pm
            BlessedForLife
            Participant

              Thank you for sharing. That rash is definitely no fun either. Hopefully it goes away and nothing new comes up.

            • November 18, 2018 at 10:05 pm
            Bubbles
            Participant

              As a person who did nivo for 2 1/2 years…yes, side effects were cumulative.  Meaning the ones I experienced did increase as time, and exposure to the drug, went on.  And no…the side effects did not magically stop once I stopped treatment.  They continued to wax and wane…disappear and reappear for years after treatment….though as time passed they became less acute with more time between events.  

              Sadly, a great deal of data has confirmed the possibility of side effects AFTER stopping immunotherapy as well.  Here is a link noting that one poor melanoma peep passed from side effects that occurred AFTER completion of treatment:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/do-melanoma-peeps-with-side-effects-to.html  

              Not trying to alarm you…but super glad you are being treated effectively.  Hopefully, your current treatment will take care of your problems and fewer and fewer problems will rear their ugly head as you go forward.  I wish you my best.  Celeste

                • November 18, 2018 at 10:50 pm
                BlessedForLife
                Participant

                  Thank you. I it took me a bit to connect the dots. I already have developed hypopituitarism, so thought for a while it was that.

                  I guess we must always be diligent!

                • November 19, 2018 at 11:25 pm
                Johnjk04
                Participant

                  First of all congratulations on completing the Ipi/Nivo combo. I had quite a bit of itching, rashes and loss of three glands as a side effect for my combo treatment. Up to two months after I still had the rash, itching and bone joint pain. Looking back, I'm quite happy that I had all of those side effects. Why? Because I am now 6.5 years NED. A great friend of mine fought the lung cancer, she had an Ipi/Nivo dose. She had absolutely no side effects, sadly I knew what the final result was going to be. We buried sweet Kathie two months ago. So going forward I hope that you have a marvelous response to this treatment.

                    • November 25, 2018 at 6:15 pm
                    BlessedForLife
                    Participant

                      Thank you. I know it sounds crazy to complian about side effects if you are currently NED. And I do know there is some corrrlation between the two.

                      I’m sorry to hear about your friend. It’s never easy to lose someone, especially when it hits so close to home.

                      Congratulations on your long NED status.

                    • November 20, 2018 at 5:04 am
                    MelanomaMike
                    Participant

                      Hi Blessed4Life! im Mike nice to meet you, its good to hear that ipi & nivo combo worked for you! NED! HipHip Hurray!.. i to passed the  ol" ipi "Rodeo" of sorts and now im nivo by itself {at #7 so far } have surgery coming up to rid my Right Lower Lobe {right lung} of a terrible 5.4cm Mel Monster that seems to chew on Keytruda, Yervoy & Opdivo and spit it back out so, hes going byby {assuming i stay strong that is}…But nevertheless Good for you, wish i could help on yer "late" side effects, i do know Immunal Therapies have a history of causing this & that WAY AFTER your last infusion…we hope you find a resolve!…

                      • November 20, 2018 at 6:58 am
                      happyfeet123
                      Participant

                        Hi Blessed for Life 

                        I was on keytruda for 14 months when colits happened.  My July and Oct petscan showed I was NED.   It also showed my pancreas and colon were inflammed and keytruda would be no more.  We were going to continue with keytruda passed the two clean petscans due to a new nodule showing up during treatment for extra measure.   I was on a steroid for 5 weeks but once the tapering started the systoms came back.  I had an infusion of rimcaid.  Still having a few issues after the rimcaid. Hoping I will not need another infusioin of it.  I guess I am thankful it came at the end.  Otherwise, I may not have been able to continue with the keytruda.  My oncologist stated I may have issues until the keytruda is out of my body.  Not much fun, but a small price overall to be NED and living my best life.  

                        Happyfeet123

                         

                        • November 20, 2018 at 6:59 am
                        happyfeet123
                        Participant

                          Hi Blessed for Life 

                          I was on keytruda for 14 months when colits happened.  My July and Oct petscan showed I was NED.   It also showed my pancreas and colon were inflammed and keytruda would be no more.  We were going to continue with keytruda passed the two clean petscans due to a new nodule showing up during treatment for extra measure.   I was on a steroid for 5 weeks but once the tapering started the systoms came back.  I had an infusion of rimcaid.  Still having a few issues after the rimcaid. Hoping I will not need another infusioin of it.  I guess I am thankful it came at the end.  Otherwise, I may not have been able to continue with the keytruda.  My oncologist stated I may have issues until the keytruda is out of my body.  Not much fun, but a small price overall to be NED and living my best life.  

                          Happyfeet123

                           

                          • November 20, 2018 at 5:13 pm
                          bjeans
                          Participant

                            Side effects can be cumulative and/or delayed. But terrific you completed the study – congrats! My husband just completed #13 which was probably nivo/ipi and gut side effects are just re-starting – third time.

                            May I ask what medicine the doctor prescribed in your MedPak – prednisone? And what dosage?

                            Beth the Wife

                              • November 25, 2018 at 6:09 pm
                              BlessedForLife
                              Participant

                                Sorry for the delay. I haven’t been on the site. It was methylprednisilone (i don’t think that’s spelt correctly). 4mg starting a 6 pills a day, going down to 1. I finished it last week and went back on the hydrocortisone I take for the Secondary Adrenal Insufficiency side effect I developed about 4 months into treatment. The steroids themselves did a number on me physically and mentally, but so far they have helped the gastro issue.  

                                When I was in treatment and had the same side effect, I was on budesonide. 6mcg a day. It worked really well.

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