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Post stem cell transplant complication - medical mystery?
Hi! Posting on behalf of my dad who is dealing with a medical mystery according to his team of doctors.
Background:
65 male diagnosed with T-cell prolymphocytic leukemia in January 2026. He underwent 36 chemo treatments of campath which ended on April 22nd, 2026. He began conditioning chemo on May 2nd for 3 days in preparation for an allogenic stem cell transplant from his sibling which he received on May 8, 2026. He was recovering, spiked a fever approximately +10 days post SCT, and received antibiotics and recovered. +16 days post SCT he fell and hit his head, he received a ct scan which was cleared. He was also diagnosed with Graft vs host disease at about this time as well due to a full body rash. It’s currently being treated with prednisone and has been improving.
At about +20 days post SCT, he started to show signs of more severe depression and potentially something else. He has been on bupropion (anti depressant) since beginning of March 2026, but it was changed to cipralex very recently on June 13, 2026 as his transplant doctors didn’t feel the bupropion was working. On this date they also changed his anti fungal medication from Fluconazole to Posaconazole.
Since his diagnosis he has been dealing with depression, but still had interest in hobbies, still had an appetite and was still sleeping a normal amount. I recognize that these are not all the symptoms of depression, but I wanted to emphasize the difference between his depression previously and what’s happening now.
Current issue:
About the first week of June this year, (+24 days post SCT) he started to become a lot more withdrawn. He didn’t speak much, was sleeping a lot more than normal and was not interested in doing much outside of his recovery. It was around this time that his blood work showed that his bilirubin level has gotten quite high (48), so an ultrasound was ordered of his liver, which didn’t show anything of concern for the doctors. At about +35 days post SCT he worsened and started to become very non responsive, he will blankly stare into space when asked questions, sleeps 20+ hours a day and is not eating very much, as a result he is very weak and struggles to move by himself. On days 36-37, he barely spoke a single word and didn’t get out of bed. The transplant team advised us on day 38 to call an ambulance to bring him to the hospital, he’s since been admitted back to the stem cell transplant unit. Since day 38, he has been demonstrating extreme confusion and disorientation in addition to the non responsiveness and excessive sleeping. When asked what the date is, he repeatedly looks confused and then guesses January or February. He responds to about 20% of questions asked by his doctors and his family and just stares blankly into their eyes. When he does speak he asks the same question 3-4 times within a 10 minute span because he can’t remember either asking it or what the answer was. His transplant team is at a loss for what is causing this and what to do, but they have advised us that this does not just look like depression to them. They’ve ordered an MRI of his abdomen to look at his liver, and we are pushing for a brain MRI but haven’t gotten a response from the doctor yet. His team has put in a request for a neurology consult, but we haven’t heard back yet and don’t know how long it will be.
Medications:
ACYCLOVIR
PANTOPRAZOLE
POSACONAZOLE
ESCITALOPRAM
PREDNISONE
TACROLMUS
ATOVAQUONE
BETADERM - cream due to Gvhd rash
MUPIROCIN - cream due to rash behind ears
Guidance requested:
His team has acknowledged that they haven’t seen this before and don’t really know what to do next. If you’ve seen this before, heard similar stories, or have any idea as to what could potentially be causing this, it would be really appreciated. Also any recommendations on tests we should request from this team, or questions we can ask them would be very helpful.
Thank you so much!
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Welcome to Mayo Connect, @thelawstudent22 I’m so sorry to hear about your dad’s change in mental health since his bone marrow transplant. (BMT). While people can have some level of depression following a BMT, or any medical procedure where life has abruptly changed, what your dad is experiencing sounds more like it’s related to medication not depression.
As a personal anecdote, I had my BMT seven years ago. The switch from IV Fluconazole to Posaconazole in pill form (both antifungals) was a critical juncture for me resulting in some serious side effects.
Posaconazole can interfere with the rate tacrolimus is processed through the kidneys. It can cause the tacro trough (consistent level in the blood) to be much higher than it should be. My normal tacro rate, if I remember correctly was supposed to remain at 7.5-ish? When I switched to Posaconazole, within two days it skyrocketed to a trough of over 27) My kidneys failed and I went into some really strange mental issues. My team was on it right away and everything was corrected accordingly. They were aware of the potential of this happening and were ready for it.
Tacro levels, if running high can cause tremors, confusion, depression, delirium and a host of other issues.
Your dad is on both of those meds now. You mentioned the changes took place right around the time he was switched from fluconazole to Posaconazole. It might be worth exploration as a potential cause. His team may consider switching him back to IV fluconazole. There are also alternatives to Tacrolimus if needed.
You can start by asking what is the current trough level of Tacrolimus?
What are his kidney numbers?
Liver panel such as ALT, AST and ALP, Bilirubin and albumin
Can you tell me a little more about your dad’s BMT protocol? Was he treated as an outpatient for his procedure or was he in a clinical setting for a month or so and then dismissed? Is he in a larger medical facility?
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5 ReactionsAfter receiving Car t cell therapy on March 23, 2026, my husband, 71 yrs old, is still 30# underweight, severely fatigued, depressed and now had pneumonia with no immune system.
He's been hospitalized twice since his release after the therapy and is struggling ..
I feel like these patients are all experiments. Some have happy endings for awhile and some never do and their bodies are out through chemical hell. I know it's each individual's choice, but after what he's been through, no thank you.
He's been through 4 different chemo regimesn treatments the year previous to his transplant in March. The insurance company insisted that he fail 3 before he could be considered for the Car T.
They made him wait too long and flooded his body with chemicals that all failed to slow the lymphoma progression . We've been married 44 years and this is the saddest part of life we've ever gone through.
I hate to watch him suffer.
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5 Reactions@thelawstudent22, I just wanted to check in with you this morning to see if there have been any positive changes in your dad’s health. What he’s experiencing post SCT isn’t typical. I hope he’s doing better and that his doctors have found the cause for his complications. Have there been any improvements for him?
@nfoltz I am sorry to hear about your husband’s struggles with infections after CAR-T therapy. I have never had CAR-T myself, but I remember how challenging it was when my immune system was practically nonexistent after my stem cell transplant. I never developed pneumonia, but I was hospitalized a number of times with fevers. It’s a scary time when the immune system is so weak!
CAR-T is a pretty new treatment, so there is still some trial and error involved even now. Sometimes our diagnosis doesn’t give us many options for what therapy we can choose. And even a patient with a successful CAR-T or SCT can be thrown into a health crisis because of an infection. There are so many possible complications that can occur when the immune system is so severely compromised.
My recovery from SCT was also a turbulent time, I was bedridden for months and had numerous hospitalizations. I completely understand your fears and frustration!
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4 ReactionsThank you for sharing and for your insight.
I hope you're well now and enjoying life ♥️
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