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Memory Loss from Yervoy / IPI Treatments or Prednisone

Forums General Melanoma Community Memory Loss from Yervoy / IPI Treatments or Prednisone

  • This topic has 6 replies, 2 voices, and was last updated 11 years ago by POW.
  • Post
    ncdaniel
    Participant

      My wife is experiencing memory loss since she had one dose of Yervoy. She previously had IL2 and seemed okay with that maybe slight memory loss. But this time it is much worse. She many time cannot remember the name of something or how many pills to take and sometimes is just slightly confused. She has been on 80mg of prednisone ( now 30mg)  and has had only one dose of Yervoy before colitis started and was treated with 100 mg  prednisone. Also was treated with Remicade (one dose) in the last month. She is scheduled to have scans in three weeks and a brain MRI done.

      My wife is experiencing memory loss since she had one dose of Yervoy. She previously had IL2 and seemed okay with that maybe slight memory loss. But this time it is much worse. She many time cannot remember the name of something or how many pills to take and sometimes is just slightly confused. She has been on 80mg of prednisone ( now 30mg)  and has had only one dose of Yervoy before colitis started and was treated with 100 mg  prednisone. Also was treated with Remicade (one dose) in the last month. She is scheduled to have scans in three weeks and a brain MRI done. I am just wondering what other experienced did this clear up or is there concern of brain METS.

      Daniel 

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    • Replies
        Tina D
        Participant

          Hi Daniel,

          I completed 3 doses of yervoy before developing pituitary inflammation and being put on Prednisone. I started at 80 mg and am down currently to 10. I have not had the degree of memory issues it sounds like she is having, but have definitely had some changes. I would describe myself as scatterbrained. Just a hard time keeping track of what I am doing sometimes, forgetting things easily and sometimes having a hard time coming up with the right word. I am sure mine is in some way related to the treatment, whether it is the hormone fluctuations caused by the endocrinitis or if it is from the Prednisone or the yervoy itself, I dont know. Unfortunately brain mets are always a concern, but I did have recent scans. Is her Dr aware of the degree of memory loss she is having? I have had this issue to various degrees on other treatments, too & I would suspect this is the reason for her troubles – mine has always cleared up in the past… though when I forget something improtant, I always take the liberty to blame it on all the treatments, haha. To be safe, though, I would be sure the Dr understands just how siginificant of an issue she is having with this. Maybe he would want to move the brain MRI forward for peace of mind?

          Tina

          Tina D
          Participant

            Hi Daniel,

            I completed 3 doses of yervoy before developing pituitary inflammation and being put on Prednisone. I started at 80 mg and am down currently to 10. I have not had the degree of memory issues it sounds like she is having, but have definitely had some changes. I would describe myself as scatterbrained. Just a hard time keeping track of what I am doing sometimes, forgetting things easily and sometimes having a hard time coming up with the right word. I am sure mine is in some way related to the treatment, whether it is the hormone fluctuations caused by the endocrinitis or if it is from the Prednisone or the yervoy itself, I dont know. Unfortunately brain mets are always a concern, but I did have recent scans. Is her Dr aware of the degree of memory loss she is having? I have had this issue to various degrees on other treatments, too & I would suspect this is the reason for her troubles – mine has always cleared up in the past… though when I forget something improtant, I always take the liberty to blame it on all the treatments, haha. To be safe, though, I would be sure the Dr understands just how siginificant of an issue she is having with this. Maybe he would want to move the brain MRI forward for peace of mind?

            Tina

            Tina D
            Participant

              Hi Daniel,

              I completed 3 doses of yervoy before developing pituitary inflammation and being put on Prednisone. I started at 80 mg and am down currently to 10. I have not had the degree of memory issues it sounds like she is having, but have definitely had some changes. I would describe myself as scatterbrained. Just a hard time keeping track of what I am doing sometimes, forgetting things easily and sometimes having a hard time coming up with the right word. I am sure mine is in some way related to the treatment, whether it is the hormone fluctuations caused by the endocrinitis or if it is from the Prednisone or the yervoy itself, I dont know. Unfortunately brain mets are always a concern, but I did have recent scans. Is her Dr aware of the degree of memory loss she is having? I have had this issue to various degrees on other treatments, too & I would suspect this is the reason for her troubles – mine has always cleared up in the past… though when I forget something improtant, I always take the liberty to blame it on all the treatments, haha. To be safe, though, I would be sure the Dr understands just how siginificant of an issue she is having with this. Maybe he would want to move the brain MRI forward for peace of mind?

              Tina

              POW
              Participant

                Daniel, I think you are doing a GREAT job being the primary caretaker for your wife. She is a very lucky lady! The one little thing you might change is to learn to trust your instincts more. Melanoma is a crazy disease that can metastisize to all kinds of places and cause all kinds of weird symptoms. And as you point out, the treatments for melanoma can add their own weird side-effects. There is no way a layperson can look at a symptom and determine whether it is "nothing" or melanoma or drugs. Even most doctors can't determine that unless they do scans and/or other tests. 

                When your wife developed diarrhea after Yervoy, you instinctively wondered if it was serious. It was. Now you are instinctly wondering if this memory loss is serious. It might be. As Tina said, it MIGHT indicate a brain met, or it MIGHT indicate that the Yervoy is attacking the pituitary, or it MIGHT be "nothing". 

                I suggest that you do as Tina suggested– call your wife's oncologist and describe exactly what is going on. Insist that the doctor return your call and when he/she does, ask if your wife should get a brain MRI sooner than planned. Be your wife's warrior and champion!

                You're doing great with this. Just get used to the idea that nobody else loves your wife or is observing her as much as you are. Pushing for medical attention and clear answers is ALWAYS the right thing to do. Don't ever be embarassed about "bothering" the doctors– this is complex stuff and the issues are life-and-death. 

                POW
                Participant

                  Daniel, I think you are doing a GREAT job being the primary caretaker for your wife. She is a very lucky lady! The one little thing you might change is to learn to trust your instincts more. Melanoma is a crazy disease that can metastisize to all kinds of places and cause all kinds of weird symptoms. And as you point out, the treatments for melanoma can add their own weird side-effects. There is no way a layperson can look at a symptom and determine whether it is "nothing" or melanoma or drugs. Even most doctors can't determine that unless they do scans and/or other tests. 

                  When your wife developed diarrhea after Yervoy, you instinctively wondered if it was serious. It was. Now you are instinctly wondering if this memory loss is serious. It might be. As Tina said, it MIGHT indicate a brain met, or it MIGHT indicate that the Yervoy is attacking the pituitary, or it MIGHT be "nothing". 

                  I suggest that you do as Tina suggested– call your wife's oncologist and describe exactly what is going on. Insist that the doctor return your call and when he/she does, ask if your wife should get a brain MRI sooner than planned. Be your wife's warrior and champion!

                  You're doing great with this. Just get used to the idea that nobody else loves your wife or is observing her as much as you are. Pushing for medical attention and clear answers is ALWAYS the right thing to do. Don't ever be embarassed about "bothering" the doctors– this is complex stuff and the issues are life-and-death. 

                  POW
                  Participant

                    Daniel, I think you are doing a GREAT job being the primary caretaker for your wife. She is a very lucky lady! The one little thing you might change is to learn to trust your instincts more. Melanoma is a crazy disease that can metastisize to all kinds of places and cause all kinds of weird symptoms. And as you point out, the treatments for melanoma can add their own weird side-effects. There is no way a layperson can look at a symptom and determine whether it is "nothing" or melanoma or drugs. Even most doctors can't determine that unless they do scans and/or other tests. 

                    When your wife developed diarrhea after Yervoy, you instinctively wondered if it was serious. It was. Now you are instinctly wondering if this memory loss is serious. It might be. As Tina said, it MIGHT indicate a brain met, or it MIGHT indicate that the Yervoy is attacking the pituitary, or it MIGHT be "nothing". 

                    I suggest that you do as Tina suggested– call your wife's oncologist and describe exactly what is going on. Insist that the doctor return your call and when he/she does, ask if your wife should get a brain MRI sooner than planned. Be your wife's warrior and champion!

                    You're doing great with this. Just get used to the idea that nobody else loves your wife or is observing her as much as you are. Pushing for medical attention and clear answers is ALWAYS the right thing to do. Don't ever be embarassed about "bothering" the doctors– this is complex stuff and the issues are life-and-death. 

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