I had an autologous stem cell transplant in May of 2017. It did not work, and I went on Pomalyst, Ninlaro, and dexamethasone in August 2017. Starting in November, I started noticing cognitive impairment / short term memory issues. I have difficulty focusing when someone talks to me and sometimes don't remember what I feel are significant chunks of the conversation. Sometimes when I go to say something it's like I talk in circles until I can finally get to my point. These things don't happen daily, but they definitely are a recent development.
Could it be the transplant? Possibly. I did not have these issues prior to the transplant, and I had been on other myeloma drugs with a little chemo brain / fog, but this is noticeably different. And I doubt I have dementia at 32 years old.
I talked to my local oncologist because I thought maybe it was the dexamethasone. He thought the Pomalyst could even be the culprit, basically saying that even though it's approved and being used, it's still relatively new, so unfortunately not all of the side effects are well known yet.
When I renewed my prescription for it this month, I mentioned it to the pharmacist. She said to start rating the level of impairment and keep daily notes to see if there are any trends that might link it to the Pomalyst dosing. I'll try to check back at the end of this cycle, or if I find out anything else.
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stefania888 - Name: Stephanie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2016
- Age at diagnosis: 30
Re: Cognitive impairment in multiple myeloma patients
There is no doubt for me that the treatments I have received to date have affected my mental capacity (I think).
I could not pinpoint which treatment could or would be responsible. But I can tell you that after my stem cell transplant. I could not read two lines before being lost in the text. Or purely not comprehending. I found it hard to give anyone or anything any length of concentration. I could not get names or words from in my head to my speech.
Whilst it has improved. I still (almost four years since my transplant) lack clarity at times, mix up words, and have a very short attention span. I mix up names and places. I know I am doing it. It's just sometimes its a jumble in my head. What I am thinking is different to what I say. The word is not wrong until it has volume, and then my head runs around looking for the right word / name. I am aware that it's happening. I must admit it seems to happen a little more lately. I am currently on no medication.
Which begs the question: Is it treatment-related, old age, stress of a terminal illness, or something unrelated entirely?
All I know before this multiple myeloma circus. I was quick witted and never short of the right words. Now not so much.
I on some level believe that my brain has a little damage since my diagnosis and subsequent treatments.
I guess we will never really know.
That's my two cents
Vic
I could not pinpoint which treatment could or would be responsible. But I can tell you that after my stem cell transplant. I could not read two lines before being lost in the text. Or purely not comprehending. I found it hard to give anyone or anything any length of concentration. I could not get names or words from in my head to my speech.
Whilst it has improved. I still (almost four years since my transplant) lack clarity at times, mix up words, and have a very short attention span. I mix up names and places. I know I am doing it. It's just sometimes its a jumble in my head. What I am thinking is different to what I say. The word is not wrong until it has volume, and then my head runs around looking for the right word / name. I am aware that it's happening. I must admit it seems to happen a little more lately. I am currently on no medication.
Which begs the question: Is it treatment-related, old age, stress of a terminal illness, or something unrelated entirely?
All I know before this multiple myeloma circus. I was quick witted and never short of the right words. Now not so much.
I on some level believe that my brain has a little damage since my diagnosis and subsequent treatments.
I guess we will never really know.
That's my two cents
Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Cognitive impairment in multiple myeloma patients
Vic:
I could not have said what I also have experienced more eloquently or precisely as you have. I also am not on any medication (treatment for my myeloma), almost 2 years post stem cell transplant, and have experienced all of the same mental challenges. I now also get quite intimidated and flustered when I am trying to explain situations to someone else. I was once very confident, and like you, quick witted. I am assuming that this is part of the "new normal" the doctors spoke of, while I was going through treatment.
Wish you all the best, and know that you are not alone. I also would find it hard to believe that in your case, at your age, it's "old age."
Kathleen
I could not have said what I also have experienced more eloquently or precisely as you have. I also am not on any medication (treatment for my myeloma), almost 2 years post stem cell transplant, and have experienced all of the same mental challenges. I now also get quite intimidated and flustered when I am trying to explain situations to someone else. I was once very confident, and like you, quick witted. I am assuming that this is part of the "new normal" the doctors spoke of, while I was going through treatment.
Wish you all the best, and know that you are not alone. I also would find it hard to believe that in your case, at your age, it's "old age."
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Cognitive impairment in multiple myeloma patients
I am reporting back after my most recent cycle. Not only did I track my cognitive function but also my fatigue level. The two were inversely proportional, and I had the highest cognitive function (no or few memory or recall issues) the last and first weeks of a cycle, when the levels of the drugs are at their lowest.
So, at least for me, based on the limited data I have collected, medication seems to be the culprit, not the transplant. I will continue to track and chart my fatigue and cognitive levels to see if similar patterns emerge.
So, at least for me, based on the limited data I have collected, medication seems to be the culprit, not the transplant. I will continue to track and chart my fatigue and cognitive levels to see if similar patterns emerge.
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stefania888 - Name: Stephanie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2016
- Age at diagnosis: 30
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