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Side effect?

Forums General Melanoma Community Side effect?

  • Post
    Eileensulliv
    Participant

      Things have been going pretty well for me on the ipi/nivo combo trial. I only got one dose of ipi because I didn't tolerate the combo much. So I have been on just nivo for a few months, and get my next scan August 6th.

      My biggest side effect has been diarrhea. It has become the "new normal" for me, but has been manageable. I also have some fatigue, aches and pains, peeling hands and feet, and my hair has thinned quite a bit.  Lately I am feeling increasingly forgetful. Maybe it's just stress, but I wonder if it can be attributed in part to the nivo. It has become astonishing just how much I am forgetting lately. I've been forgetting appointments, tasks I was working on, even words! I will be talking with someone and trying to get a simple everyday word out. I can think of it and picture it, but I just can't remember the word. I swear it feels like I'm losing my mind!  Has anybody else experienced this?

      I'm sure this is stress related and I'm just overreacting.  I will talk with my doctor about this, but I just thought I'd ask if anyone has experienced this while I remember to ask. ๐Ÿ™‚

       

       

    Viewing 14 reply threads
    • Replies
        jessica_f
        Participant

          I had that issue big time with Interferon. Short-term memory was shot to the point where I couldn't speak in long sentences because I'd forget the beginning. It slowly came back but I do lose my train of thought much more than I did years ago. I'm not that old either, can hardly blame it on old age ๐Ÿ˜‰ 

          The stress of my re-diagnosis a few weeks ago was causing forgetfullness too- going to the fridge and forgetting what I meant to get…

          Hope everything goes well with your trial. I'm starting on Ipi on the 27th, am curious about what lies ahead.

          Best of luck to you,

          Jessica

           

           

            Eileensulliv
            Participant

              Thank you for your reply, Jessica! I am so sorry you are going through this again! I wish you the best, and hope you will be NED again soon!

              I am getting increasingly frustrated with my mind. For lack of a better term, I just feel quite spacey much of the time. Enough that even my coworkers have noticed. I'm usually quite sharp and meticulous when it comes to my work, so this has become very frustrating to me.  Maybe I can research some sort of natural remedy!

              jessica_f
              Participant

                 If you hear of any natural remedies let me know!  I'm quite crunchy when it comes to that stuff ๐Ÿ˜‰

                jessica_f
                Participant

                   If you hear of any natural remedies let me know!  I'm quite crunchy when it comes to that stuff ๐Ÿ˜‰

                  jessica_f
                  Participant

                     If you hear of any natural remedies let me know!  I'm quite crunchy when it comes to that stuff ๐Ÿ˜‰

                    Eileensulliv
                    Participant

                      Thank you for your reply, Jessica! I am so sorry you are going through this again! I wish you the best, and hope you will be NED again soon!

                      I am getting increasingly frustrated with my mind. For lack of a better term, I just feel quite spacey much of the time. Enough that even my coworkers have noticed. I'm usually quite sharp and meticulous when it comes to my work, so this has become very frustrating to me.  Maybe I can research some sort of natural remedy!

                      Eileensulliv
                      Participant

                        Thank you for your reply, Jessica! I am so sorry you are going through this again! I wish you the best, and hope you will be NED again soon!

                        I am getting increasingly frustrated with my mind. For lack of a better term, I just feel quite spacey much of the time. Enough that even my coworkers have noticed. I'm usually quite sharp and meticulous when it comes to my work, so this has become very frustrating to me.  Maybe I can research some sort of natural remedy!

                        oceanwild
                        Participant

                          thx for the reply. have u use the supplements Huperzine A ?  Huperzine-a powder can improve memory, thinking, and behavioral function in people. Huperzine-a powder as a treatment of myasthenia gravis effective drugs, better than new Ming.

                          oceanwild
                          Participant

                            thx for the reply. have u use the supplements Huperzine A ?  Huperzine-a powder can improve memory, thinking, and behavioral function in people. Huperzine-a powder as a treatment of myasthenia gravis effective drugs, better than new Ming.

                            oceanwild
                            Participant

                              thx for the reply. have u use the supplements Huperzine A ?  Huperzine-a powder can improve memory, thinking, and behavioral function in people. Huperzine-a powder as a treatment of myasthenia gravis effective drugs, better than new Ming.

                            jessica_f
                            Participant

                              I had that issue big time with Interferon. Short-term memory was shot to the point where I couldn't speak in long sentences because I'd forget the beginning. It slowly came back but I do lose my train of thought much more than I did years ago. I'm not that old either, can hardly blame it on old age ๐Ÿ˜‰ 

                              The stress of my re-diagnosis a few weeks ago was causing forgetfullness too- going to the fridge and forgetting what I meant to get…

                              Hope everything goes well with your trial. I'm starting on Ipi on the 27th, am curious about what lies ahead.

                              Best of luck to you,

                              Jessica

                               

                               

                              jessica_f
                              Participant

                                I had that issue big time with Interferon. Short-term memory was shot to the point where I couldn't speak in long sentences because I'd forget the beginning. It slowly came back but I do lose my train of thought much more than I did years ago. I'm not that old either, can hardly blame it on old age ๐Ÿ˜‰ 

                                The stress of my re-diagnosis a few weeks ago was causing forgetfullness too- going to the fridge and forgetting what I meant to get…

                                Hope everything goes well with your trial. I'm starting on Ipi on the 27th, am curious about what lies ahead.

                                Best of luck to you,

                                Jessica

                                 

                                 

                                BrianP
                                Participant

                                  Eileen,

                                  Have you told your Oncologist about this yet?  If not you probably should right away.  I've signed about a dozen new side effect notifications over the course of my nearly two year trial.  I can't remember if what you are descibing is one I signed but there is something about it that sounds a little familiar about it.  I looked on the BMS site at their expanded side effects literature and I couldn't find anything like you are describing.

                                  Brian

                                  BrianP
                                  Participant

                                    Eileen,

                                    Have you told your Oncologist about this yet?  If not you probably should right away.  I've signed about a dozen new side effect notifications over the course of my nearly two year trial.  I can't remember if what you are descibing is one I signed but there is something about it that sounds a little familiar about it.  I looked on the BMS site at their expanded side effects literature and I couldn't find anything like you are describing.

                                    Brian

                                    BrianP
                                    Participant

                                      Eileen,

                                      Have you told your Oncologist about this yet?  If not you probably should right away.  I've signed about a dozen new side effect notifications over the course of my nearly two year trial.  I can't remember if what you are descibing is one I signed but there is something about it that sounds a little familiar about it.  I looked on the BMS site at their expanded side effects literature and I couldn't find anything like you are describing.

                                      Brian

                                      arthurjedi007
                                      Participant

                                        I had it pretty bad after they radiated a spot in my head. But it seems to have gotten better. Are you getting your regular head scan? Should be every 3 to 6 months I would think for a regular head scan.

                                        Artie

                                        arthurjedi007
                                        Participant

                                          I had it pretty bad after they radiated a spot in my head. But it seems to have gotten better. Are you getting your regular head scan? Should be every 3 to 6 months I would think for a regular head scan.

                                          Artie

                                          arthurjedi007
                                          Participant

                                            I had it pretty bad after they radiated a spot in my head. But it seems to have gotten better. Are you getting your regular head scan? Should be every 3 to 6 months I would think for a regular head scan.

                                            Artie

                                            AshleyS
                                            Participant

                                              Hey Eileen! You and I are kind of trial buddies since we started at the same time. I have the diarrhea, but I think it's improved since the ipi has been leaving my system. I also have mild fatigue. I've noticed my eyelashes have thinned and I don't have to shave the hair under my arms – which I'm not complaining about. I haven't noticed any memory issues. Like Artie said, be sure to mention it to your doc and get a brain scan in August, if not before. 

                                              Best wishes,

                                              Ashley

                                              AshleyS
                                              Participant

                                                Hey Eileen! You and I are kind of trial buddies since we started at the same time. I have the diarrhea, but I think it's improved since the ipi has been leaving my system. I also have mild fatigue. I've noticed my eyelashes have thinned and I don't have to shave the hair under my arms – which I'm not complaining about. I haven't noticed any memory issues. Like Artie said, be sure to mention it to your doc and get a brain scan in August, if not before. 

                                                Best wishes,

                                                Ashley

                                                AshleyS
                                                Participant

                                                  Hey Eileen! You and I are kind of trial buddies since we started at the same time. I have the diarrhea, but I think it's improved since the ipi has been leaving my system. I also have mild fatigue. I've noticed my eyelashes have thinned and I don't have to shave the hair under my arms – which I'm not complaining about. I haven't noticed any memory issues. Like Artie said, be sure to mention it to your doc and get a brain scan in August, if not before. 

                                                  Best wishes,

                                                  Ashley

                                                  _Paul_
                                                  Participant

                                                    Hi Eileen,

                                                    Ever since I started with the immunotherapy (ipi then pembro) I have had minor bouts of lightheadedness and fatigue. I have been getting pembro since early February, and I skipped one dose, but I think with my dose this Tuesday I will have had 8. I have noticed that the symptoms are getting more pronounced as I go on. So much so that I haven't been to work in the last couple of days because of an inability to concentrate.

                                                    Its kind of hard to isolate the side effects, though, since the immunotherapy caused swelling of my pituitary (hypophysitis), adrenal insufficiency, hypothryoidism, type 1 diabetes, and my production of testosterone to hit basically 0. I don't know why my ipi/pembro caused my immune system to target my endocrine system the way it did, but its something you might want to keep an eye out for. I assume you are getting tested for TSH (Thyroid Stimulating Hormone) on your blood tests, but it might be worth asking about the others (well, obviously not the low testosterone!).

                                                    Good luck! – Paul.

                                                    _Paul_
                                                    Participant

                                                      Hi Eileen,

                                                      Ever since I started with the immunotherapy (ipi then pembro) I have had minor bouts of lightheadedness and fatigue. I have been getting pembro since early February, and I skipped one dose, but I think with my dose this Tuesday I will have had 8. I have noticed that the symptoms are getting more pronounced as I go on. So much so that I haven't been to work in the last couple of days because of an inability to concentrate.

                                                      Its kind of hard to isolate the side effects, though, since the immunotherapy caused swelling of my pituitary (hypophysitis), adrenal insufficiency, hypothryoidism, type 1 diabetes, and my production of testosterone to hit basically 0. I don't know why my ipi/pembro caused my immune system to target my endocrine system the way it did, but its something you might want to keep an eye out for. I assume you are getting tested for TSH (Thyroid Stimulating Hormone) on your blood tests, but it might be worth asking about the others (well, obviously not the low testosterone!).

                                                      Good luck! – Paul.

                                                      _Paul_
                                                      Participant

                                                        Hi Eileen,

                                                        Ever since I started with the immunotherapy (ipi then pembro) I have had minor bouts of lightheadedness and fatigue. I have been getting pembro since early February, and I skipped one dose, but I think with my dose this Tuesday I will have had 8. I have noticed that the symptoms are getting more pronounced as I go on. So much so that I haven't been to work in the last couple of days because of an inability to concentrate.

                                                        Its kind of hard to isolate the side effects, though, since the immunotherapy caused swelling of my pituitary (hypophysitis), adrenal insufficiency, hypothryoidism, type 1 diabetes, and my production of testosterone to hit basically 0. I don't know why my ipi/pembro caused my immune system to target my endocrine system the way it did, but its something you might want to keep an eye out for. I assume you are getting tested for TSH (Thyroid Stimulating Hormone) on your blood tests, but it might be worth asking about the others (well, obviously not the low testosterone!).

                                                        Good luck! – Paul.

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