1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Slow decrease of neutrophil count 5 years after BMT

Posted by welshmark @welshmark, May 2 10:02am

Hi everyone
I had my bone marrow transplant almost 5 years ago. Since last October 2023 my neutrophil count has been slowly declining , currently at 1.1 ( mild neutropenia) All other levels platelets, red blood cells etc are normal Chimerism 100% also.. My consultant says if they go below 1 I will have a bone marrow biopsy to see what’s going on. She doesn’t think it’s relapse, possibly the bone marrow has been affected by all the chemotherapy. Then possible a top up or stem cell boost.
Has anyone else had this happen so far out of transplant?
Thank you
Mark from Wales UK

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Mentor
Lori, Volunteer Mentor | @loribmt | May 3 9:15am

Hi Mark, welcome to Connect. Congrats on hitting 5 years post transplant! I’m almost there, my 5 year Celliversary is the end of June.

There are a number of us in the forum who have had Allogenic SCT. I’m not aware of any decreases in neutrophils but hopefully others will pop into the conversation if they’ve seen any decrease or changes after period of stability.
I’m sure you’re a little antsy to know the cause. I was going to suggest a bone marrow biopsy to see if there’s any issue with the marrow but I see your doctor is already considering that if your numbers drop further. Is there any indication of underlying infection?

It’s really encouraging that your chimerisms remains at 100% You mentioned a top up or stem cell boost to increase your WBC. A friend of mine, who is 2 years post transplant, recently had a boost to increase her chimerism numbers. It worked very well. Were some cells frozen from your donor?
If you don’t mind sharing, what was the reason you required a transplant?

REPLY
welshmark | @welshmark | May 3 10:23am

Hi Lori
Thank you for replying. My transplant was for AML ,I was diagnosed exactly 6 years ago ,had chemo only but relapsed after 5 months so went onto transplant inMay2019. My donor was a 31 year old American and he donated bone marrow rather than stem cells. I assume they have stored some just in case.
I had an nasty viral infection over Christmas but other than that I have been feeling well, running regularly etc.
Mark

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | May 3 1:12pm
In reply to @welshmark "Hi Lori Thank you for replying. My transplant was for AML ,I was diagnosed exactly 6..." + (show)
@welshmark

Hi Lori
Thank you for replying. My transplant was for AML ,I was diagnosed exactly 6 years ago ,had chemo only but relapsed after 5 months so went onto transplant inMay2019. My donor was a 31 year old American and he donated bone marrow rather than stem cells. I assume they have stored some just in case.
I had an nasty viral infection over Christmas but other than that I have been feeling well, running regularly etc.
Mark

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Hi Mark, Same diagnosis for me, though I went immediately to transplant after 3 months of chemo. I was in a high risk category so there wasn’t an option of waiting to see if chemo was sufficient.

Has your neutrophil level been steadily falling or just since the viral infection? There are viral infections that can cause neutropenia such as Epstein-Barr virus, cytomegalovirus (CMV) HIV and viral hepatitis, I know CMV was always on the radar of my transplant team because my donor had it though I didn’t. Has your doctor checked for evidence of a virus? Easier than a biopsy. 😉.

REPLY
welshmark | @welshmark | May 3 2:25pm

Hi Lori
It’s been a steady decline since October, 1.4 in October 1.4 end of December and now 1.1.
They do test me for cmv and ebv as I had both at low levels for a year or so after transplant.
Maybe I’m worrying too much but they have been very stable for a few years . My doctor seems happy to wait for 3 months for the next blood tests so I suppose I must trust the doctors .
Mark

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | May 4 8:27am
In reply to @welshmark "Hi Lori It’s been a steady decline since October, 1.4 in October 1.4 end of December..." + (show)
@welshmark

Hi Lori
It’s been a steady decline since October, 1.4 in October 1.4 end of December and now 1.1.
They do test me for cmv and ebv as I had both at low levels for a year or so after transplant.
Maybe I’m worrying too much but they have been very stable for a few years . My doctor seems happy to wait for 3 months for the next blood tests so I suppose I must trust the doctors .
Mark

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Hi Mark, After what we go through with AML and the bone marrow transplant, I think it’s pretty normal to feel that twinge of unease when we see our blood numbers fluctuate or trend in a wrong direction for a bit. About 3 years ago I had a similar event that went on for a few months, to the point of requiring a bmbx. There was nothing amiss with bone marrow or blood. Seemed to be an anomaly that self corrected a few months later. Left us all scratching our heads.
With your bloodwork every three months that’s a pretty good indication that your doctor isn’t too worried about any rapid progression, which is the right approach. I’ve realized from the get-go that my transplant doctor is very level headed with no knee-jerk reactions. I think these doctors see so many variations in chimeras because all of us are unique, they’ve learned to ‘wait it out’ before making any decisions.

Since you’re new to the forum you may not have seen these. But a few years ago I started a couple of discussions for bone marrow transplant members to share their story. Would love to have you jump into some conversations with the rest of us! Here are links to two sites.

~My Bone Marrow Transplant Story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours
~Snapshots of hope: Life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

There’s also a third discussion about GVHD
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
Do you have any chronic gvhd issues?

REPLY
1 reply
welshmark | @welshmark | May 5 12:20am
In reply to @loribmt "Hi Mark, After what we go through with AML and the bone marrow transplant, I think..." + (show)
@loribmt

Hi Mark, After what we go through with AML and the bone marrow transplant, I think it’s pretty normal to feel that twinge of unease when we see our blood numbers fluctuate or trend in a wrong direction for a bit. About 3 years ago I had a similar event that went on for a few months, to the point of requiring a bmbx. There was nothing amiss with bone marrow or blood. Seemed to be an anomaly that self corrected a few months later. Left us all scratching our heads.
With your bloodwork every three months that’s a pretty good indication that your doctor isn’t too worried about any rapid progression, which is the right approach. I’ve realized from the get-go that my transplant doctor is very level headed with no knee-jerk reactions. I think these doctors see so many variations in chimeras because all of us are unique, they’ve learned to ‘wait it out’ before making any decisions.

Since you’re new to the forum you may not have seen these. But a few years ago I started a couple of discussions for bone marrow transplant members to share their story. Would love to have you jump into some conversations with the rest of us! Here are links to two sites.

~My Bone Marrow Transplant Story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours
~Snapshots of hope: Life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

There’s also a third discussion about GVHD
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
Do you have any chronic gvhd issues?

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Thanks Lori
I’ll check them out

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