My husband had his stem cell transplant in September 2016 for multiple myeloma and since then also has had quite a few admissions for different medical problems, such as diarrhea, etc. Now, after all of the treatments are behind us, he is still weak (60 pounds of weight loss). He has no physical pain, but is suffering tremendously with a "strange sensation in his head", constantly agitated, moving from one room to another, wanting other members of the family to keep him company all the time, craving attention.
We thought that it was chemo brain or morphine withdrawal and have started him on Rivotril (clonazepam, Klonopin) He was also taking Celexa (citalopram), but the doctors stopped it, saying that it did not help.
My children and I are exhausted, trying to care for him with no relief. I don't know how long we can go on like this.
When I ask the medical staff if they have encountered this with other patients, they reply that they have not.
He is only 67 years-old. We thought that when this would be over our life will get a little better, but this has been a nightmare. I feel like I am in the twilight zone.
Any information about why this might be happening, and how it could be addressed, would be much appreciated.
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Re: Psychiatric problems after stem cell transplant
Hi malkais.
I am so sorry you have not gotten the respite that I was fortunate enough to get after my husband's stem cell transplant in June. Our summer felt like a vacation, even though we were dealing with our own post-traumatic issues during maintenance therapy.
I'm sure your doctors have mentioned depression and post-traumatic stress disorder (PTSD) (he was on an antidepressant), but you don't mention if he remains on others or all that were used and stopped. I'd ask your specialists for a thorough medical work-up to exclude other medical issues that can occur post stem cell transplantation, or in the immune-suppressed, before limiting this to depression. This is tedious medical detective work. Systems that need to be looked at include endocrine, neurological, infectious, and nutritional.
Has he been checked for adrenal insufficiency (Addison's disease)? With the steroid withdrawal and the chemotherapy and immune suppression, he is at risk. The symptoms include weakness, weight loss, diarrhea, irritability / depression among others. He might also have other endocrine abnormalities after his transplant – thyroid disfunction, pituitary issues.
Has he had additional brain imaging or an EEG? That strange sensation may be important. He was likely very platelet deficient in September and a subdural hematoma or bleed can result in some of these symptoms.
Have infectious causes – encephalitis or other infections – been excluded? Has he had a syphilis EIA and a quantiferon? Has he had a neurological consultation? Has his B12 level been checked?
The workup of depression vs. delirium vs. dementia is difficult even without the stressors you have all been through. Neuropsychological testing might be helpful to tease out these issues.
I know this must seem like a lot of additional testing and questions. I apologize, but what you are going through now is difficult for you but also difficult to sort out.
I am so sorry you have not gotten the respite that I was fortunate enough to get after my husband's stem cell transplant in June. Our summer felt like a vacation, even though we were dealing with our own post-traumatic issues during maintenance therapy.
I'm sure your doctors have mentioned depression and post-traumatic stress disorder (PTSD) (he was on an antidepressant), but you don't mention if he remains on others or all that were used and stopped. I'd ask your specialists for a thorough medical work-up to exclude other medical issues that can occur post stem cell transplantation, or in the immune-suppressed, before limiting this to depression. This is tedious medical detective work. Systems that need to be looked at include endocrine, neurological, infectious, and nutritional.
Has he been checked for adrenal insufficiency (Addison's disease)? With the steroid withdrawal and the chemotherapy and immune suppression, he is at risk. The symptoms include weakness, weight loss, diarrhea, irritability / depression among others. He might also have other endocrine abnormalities after his transplant – thyroid disfunction, pituitary issues.
Has he had additional brain imaging or an EEG? That strange sensation may be important. He was likely very platelet deficient in September and a subdural hematoma or bleed can result in some of these symptoms.
Have infectious causes – encephalitis or other infections – been excluded? Has he had a syphilis EIA and a quantiferon? Has he had a neurological consultation? Has his B12 level been checked?
The workup of depression vs. delirium vs. dementia is difficult even without the stressors you have all been through. Neuropsychological testing might be helpful to tease out these issues.
I know this must seem like a lot of additional testing and questions. I apologize, but what you are going through now is difficult for you but also difficult to sort out.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Psychiatric problems after stem cell transplant
Did you talk to your family doctor/GP about this? You say you asked the medical staff and that they had not heard about it before, was that the medical staff specializing in myeloma?
My personal experience is that the myeloma specialists are unsurpassed during active treatment, but when it comes to issues and side effects following treatment, my local doctors can often relate better to some of the problems. For example, I experienced pain/sensations that my myeloma specialists had never heard of, but my local doctor had met many patients with other cancer diagnoses who described their symptoms similarly after chemo treatment.
My personal experience is that the myeloma specialists are unsurpassed during active treatment, but when it comes to issues and side effects following treatment, my local doctors can often relate better to some of the problems. For example, I experienced pain/sensations that my myeloma specialists had never heard of, but my local doctor had met many patients with other cancer diagnoses who described their symptoms similarly after chemo treatment.
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Myosotis - Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 37
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