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Anyone else have Mantle Cell Lymphoma?

Blood Cancers & Disorders | Last Active: Jul 14 6:52am | Replies (89)

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@ffb1234

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?

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Replies to "Hello all, I have MCL, in remission and on maintenance every other month. I had a..."

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?

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