Lori, thank you. That is very kind and thoughtful of you. It has been a year that is for sure. My blood counts are still the same. Saw my BMT doctor last week for my anniversary checkup and she is concerned also. Doing a bunch more tests now. Hopefully we will get this figure out. Again thank you for your caring and kindness.
As you’re finding out, having a BMT changes everything! We’re given this amazing 2nd chance at life but with it can come some adaptions we’re not used to dealing with for sure!
Personally, I felt the first year was the most challenging. So, happy 1st Re-Birth day and best wishes for a much better year…years…ahead!!
I’d like to invite you to participate in some of our BMT/SCT conversations in the forum! I think you’ll enjoy getting to know some of the other Chimeras…we’re a special lot. Haha.
We share our experiences which can really help to let you know you’re not alone. That we all have little quirks with our newly acquired immune system and we’re here to support each other.
You’ll meet up with some regulars there and some newbies like @katgob who is just a little behind you in her journey.
These two discussions will be a good place to get started:
Hi @ffb1234 I wanted to check in with you to see how your recovery is coming along from your BMT, now that you’ve gotten that first year post transplant out of the way. How have you been feeling? Has your strength and energy returned to ‘normal’?
I know you were concerned about the blood counts being abnormal 6 months into recovery. Did they finally even out?
Lori, thank you. That is very kind and thoughtful of you. It has been a year that is for sure. My blood counts are still the same. Saw my BMT doctor last week for my anniversary checkup and she is concerned also. Doing a bunch more tests now. Hopefully we will get this figure out. Again thank you for your caring and kindness.
Hi @ahoang27 You must have a zillion questions about your new diagnosis of MCL (Merkle cell Lymphoma). It can be so helpful being able to speak with others such as, @arbutus@angelu94 and @nhlbob who are experiencing the same condition or have a loved one with the disease.
If you don’t mind sharing, what were the symptoms that led up to your diagnosis? Since this is a relatively new diagnosis, have you begun any treatment yet?
Hello all, I have MCL, in remission and on maintenance every other month. I had a BMT in December of 2023. Still have not recovered fully from that. All my counts (RBC, WBC and platelets) are still abnormal. Last two blood tests show RBC fragments and RBC bite cells. Anyone else seen this?
Hi @ffb1234 I wanted to check in with you to see how your recovery is coming along from your BMT, now that you’ve gotten that first year post transplant out of the way. How have you been feeling? Has your strength and energy returned to ‘normal’?
I know you were concerned about the blood counts being abnormal 6 months into recovery. Did they finally even out?
Hello all, I have MCL, in remission and on maintenance every other month. I had a BMT in December of 2023. Still have not recovered fully from that. All my counts (RBC, WBC and platelets) are still abnormal. Last two blood tests show RBC fragments and RBC bite cells. Anyone else seen this?
Good morning. I had peripheral stem cell transplant for leukemia 11 years ago, so my situation is a bit different than yours. Regarding recovery from this life-saving treatment, time is the key. Many patients need a year or more to fully find their new normal baseline. Exercise, healthy nutrition, good quality sleep, and support for your spirit are the elements that will help you recover. Be patient with yourself, celebrate the journey, and know the survivor community supports you.
Best regards,
Katie
Hello all, I have MCL, in remission and on maintenance every other month. I had a BMT in December of 2023. Still have not recovered fully from that. All my counts (RBC, WBC and platelets) are still abnormal. Last two blood tests show RBC fragments and RBC bite cells. Anyone else seen this?
Hi @ffb1234 Welcome to Connect….and congratulations on your bone marrow transplant. I know from experience that’s not a walk on the beach. But it is our gift of a second chance at life. I hope you’re doing well.
A few years ago I started a couple of discussions for BMT members to share their stories. I hope you’ll consider letting us learn a little more about you too.
~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/
I just CELLebrated my 5th re-birthday June 28th. I was 65 at the time, now 70 and feeling fabulous! The first year is definitely the most challenging so hang in there, life gets better! Blood work can be wonky and fluctuate for months. Throughout the past 5 years, regular blood work would be perfect for months then there’d be an inexplicably weird set of numbers but followup would show they all evened out again.
What is your doctor saying about the RBC fragments and bite cells?
What maintenance meds are you taking?
Hello all, I have MCL, in remission and on maintenance every other month. I had a BMT in December of 2023. Still have not recovered fully from that. All my counts (RBC, WBC and platelets) are still abnormal. Last two blood tests show RBC fragments and RBC bite cells. Anyone else seen this?
Hello @roberthall0452, welcome to Connect. I would like to introduce you to another new member, @harvie, who also recently posted about being diagnosed with mantle cell lymphoma. @roberthall0452, if you are comfortable sharing a bit more, how are you doing with this diagnosis? Has there been any discussion of a treatment plan?
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As you’re finding out, having a BMT changes everything! We’re given this amazing 2nd chance at life but with it can come some adaptions we’re not used to dealing with for sure!
Personally, I felt the first year was the most challenging. So, happy 1st Re-Birth day and best wishes for a much better year…years…ahead!!
I’d like to invite you to participate in some of our BMT/SCT conversations in the forum! I think you’ll enjoy getting to know some of the other Chimeras…we’re a special lot. Haha.
We share our experiences which can really help to let you know you’re not alone. That we all have little quirks with our newly acquired immune system and we’re here to support each other.
You’ll meet up with some regulars there and some newbies like @katgob who is just a little behind you in her journey.
These two discussions will be a good place to get started:
~My Bone Marrrow 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/
What did you do to celebrate your first BMT anniversary?
Lori, thank you. That is very kind and thoughtful of you. It has been a year that is for sure. My blood counts are still the same. Saw my BMT doctor last week for my anniversary checkup and she is concerned also. Doing a bunch more tests now. Hopefully we will get this figure out. Again thank you for your caring and kindness.
Hi @ahoang27 You must have a zillion questions about your new diagnosis of MCL (Merkle cell Lymphoma). It can be so helpful being able to speak with others such as, @arbutus @angelu94 and @nhlbob who are experiencing the same condition or have a loved one with the disease.
If you don’t mind sharing, what were the symptoms that led up to your diagnosis? Since this is a relatively new diagnosis, have you begun any treatment yet?
-
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Hug
1 ReactionHi @ffb1234 I wanted to check in with you to see how your recovery is coming along from your BMT, now that you’ve gotten that first year post transplant out of the way. How have you been feeling? Has your strength and energy returned to ‘normal’?
I know you were concerned about the blood counts being abnormal 6 months into recovery. Did they finally even out?
I was just diagnosed with MCL on 12/14/24.
Good morning. I had peripheral stem cell transplant for leukemia 11 years ago, so my situation is a bit different than yours. Regarding recovery from this life-saving treatment, time is the key. Many patients need a year or more to fully find their new normal baseline. Exercise, healthy nutrition, good quality sleep, and support for your spirit are the elements that will help you recover. Be patient with yourself, celebrate the journey, and know the survivor community supports you.
Best regards,
Katie
-
Like -
Helpful -
Hug
5 ReactionsHi @ffb1234 Welcome to Connect….and congratulations on your bone marrow transplant. I know from experience that’s not a walk on the beach. But it is our gift of a second chance at life. I hope you’re doing well.
A few years ago I started a couple of discussions for BMT members to share their stories. I hope you’ll consider letting us learn a little more about you too.
~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/
I just CELLebrated my 5th re-birthday June 28th. I was 65 at the time, now 70 and feeling fabulous! The first year is definitely the most challenging so hang in there, life gets better! Blood work can be wonky and fluctuate for months. Throughout the past 5 years, regular blood work would be perfect for months then there’d be an inexplicably weird set of numbers but followup would show they all evened out again.
What is your doctor saying about the RBC fragments and bite cells?
What maintenance meds are you taking?
-
Like -
Helpful -
Hug
1 ReactionHello all, I have MCL, in remission and on maintenance every other month. I had a BMT in December of 2023. Still have not recovered fully from that. All my counts (RBC, WBC and platelets) are still abnormal. Last two blood tests show RBC fragments and RBC bite cells. Anyone else seen this?
@angelu94, what type of chemo are you getting? How are you doing?
I am doing good and feel good I am starting Chemotherapy next week.