I am a 71 year old male with a recent diagnosis of MCL I have started treatment and I struggling a bit with the side effects. But first things first.... I'll start with the diagnosis..... The symptoms sent me to the hospital was persistent double vision and severe headaches. My cranial nerves were being compressed by tumors in my head. MRI imaging revealed these and a lot of tumors in my brain. However my spinal tap was clear and despite the cranial tumors there is no central nervous system involvement that can be detected. Bone marrow biopsy showed significant involvement of my bone marrow. So I have stage 4 MCL. (For several months, I had had night sweats and a cough, but I hadn't followed up with these symptoms.)
My treatment that we finally settled on in a combo and Calquence, Rituximab, and Bendamustine. I started that treatment on Aug 7. Aug 7 was what I call "Big Bang Day" where I received all 3 drugs. The Rituxmab was very rough, requiring almost 7 hours. Aug 8 was a short Bentamustine booster session. The side effects are nasty, but I'm coping. My oncologist is certain that he wants me to have 2 more sessions. Then he wants imaging. And then he will decide on perhaps as many as 3 additional sessions. There 28 days between sessions. So I could be on all 3 drugs for the next six months. After that, I drop back to Calquence only... probably for the rest of my life.
In an amazing coincidence, my sister was diagnosed with breast cancer in month! I hope you all had I better month than I've been having. (+-+)
Hi @paulhite and welcome to Connect. With the last line of your reply: “ I hope you all had I better month than I've been having”, sounds like you’ve been through the wringer this month and several beforehand before your diagnosis of MCL (mantel cell lymphoma).
But help is on the horizon with the treatments you’re receiving. If there’s any consolation, the first round of Rituximab is generally the lengthiest and occasionally the session that can have a reaction while being infused. After that, typically reactions fall off and infusion times can be adjusted to a faster drip. For me Rituximab was a wonder drug. So hang in there with the treatments…the side effects should ease up as well.
Having had your first treatments for MCL Aug 7 & 8, you’re probably nearing the point in the month where blood numbers tend to drop. While the cancer cells are being destroyed, unfortunately there can be some collateral damage to other quickly dividing cells such as blood cells, mucosal cells, hair/nails, etc.
Mid month can leave you with increased fatigue, maybe some nausea, gut issues, until the blood cells gain volume again. With each round of chemo, more cancer cells are destroyed allowing for healthy blood cells to regenerate. This is a monthly cycle of chemo meds… You should start feeling a little more peppy as the week rolls on…just in time for round two. ☺️ But each brings you closer to bringing this condition under control.
With lower blood counts, especially neutrophils, the immune system is compromised so it’s a good idea daily to check your temperature. If it ever registers 100.3 or higher make sure you let your oncologist office know right away.
I’m sorry to hear your sister was coincidently diagnosed with breast cancer at the same time! My goodness…I’m sure you’ll both have some interesting journeys to share with each other. If she’s interested we have a large breast cancer support system in the forum as well. She might find it comforting to be able to speak with other women going along the same journey. Here’s the link: https://connect.mayoclinic.org/group/breast-cancer/
I hope the rest of the month is much better for you.
What side effects are you experiencing?
I am a 71 year old male with a recent diagnosis of MCL I have started treatment and I struggling a bit with the side effects. But first things first.... I'll start with the diagnosis..... The symptoms sent me to the hospital was persistent double vision and severe headaches. My cranial nerves were being compressed by tumors in my head. MRI imaging revealed these and a lot of tumors in my brain. However my spinal tap was clear and despite the cranial tumors there is no central nervous system involvement that can be detected. Bone marrow biopsy showed significant involvement of my bone marrow. So I have stage 4 MCL. (For several months, I had had night sweats and a cough, but I hadn't followed up with these symptoms.)
My treatment that we finally settled on in a combo and Calquence, Rituximab, and Bendamustine. I started that treatment on Aug 7. Aug 7 was what I call "Big Bang Day" where I received all 3 drugs. The Rituxmab was very rough, requiring almost 7 hours. Aug 8 was a short Bentamustine booster session. The side effects are nasty, but I'm coping. My oncologist is certain that he wants me to have 2 more sessions. Then he wants imaging. And then he will decide on perhaps as many as 3 additional sessions. There 28 days between sessions. So I could be on all 3 drugs for the next six months. After that, I drop back to Calquence only... probably for the rest of my life.
In an amazing coincidence, my sister was diagnosed with breast cancer in month! I hope you all had I better month than I've been having. (+-+)
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
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Hi @paulhite and welcome to Connect. With the last line of your reply: “ I hope you all had I better month than I've been having”, sounds like you’ve been through the wringer this month and several beforehand before your diagnosis of MCL (mantel cell lymphoma).
But help is on the horizon with the treatments you’re receiving. If there’s any consolation, the first round of Rituximab is generally the lengthiest and occasionally the session that can have a reaction while being infused. After that, typically reactions fall off and infusion times can be adjusted to a faster drip. For me Rituximab was a wonder drug. So hang in there with the treatments…the side effects should ease up as well.
Having had your first treatments for MCL Aug 7 & 8, you’re probably nearing the point in the month where blood numbers tend to drop. While the cancer cells are being destroyed, unfortunately there can be some collateral damage to other quickly dividing cells such as blood cells, mucosal cells, hair/nails, etc.
Mid month can leave you with increased fatigue, maybe some nausea, gut issues, until the blood cells gain volume again. With each round of chemo, more cancer cells are destroyed allowing for healthy blood cells to regenerate. This is a monthly cycle of chemo meds… You should start feeling a little more peppy as the week rolls on…just in time for round two. ☺️ But each brings you closer to bringing this condition under control.
With lower blood counts, especially neutrophils, the immune system is compromised so it’s a good idea daily to check your temperature. If it ever registers 100.3 or higher make sure you let your oncologist office know right away.
I’m sorry to hear your sister was coincidently diagnosed with breast cancer at the same time! My goodness…I’m sure you’ll both have some interesting journeys to share with each other. If she’s interested we have a large breast cancer support system in the forum as well. She might find it comforting to be able to speak with other women going along the same journey. Here’s the link:
https://connect.mayoclinic.org/group/breast-cancer/
I hope the rest of the month is much better for you.
What side effects are you experiencing?
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1 ReactionHello, everybody!
I am a 71 year old male with a recent diagnosis of MCL I have started treatment and I struggling a bit with the side effects. But first things first.... I'll start with the diagnosis..... The symptoms sent me to the hospital was persistent double vision and severe headaches. My cranial nerves were being compressed by tumors in my head. MRI imaging revealed these and a lot of tumors in my brain. However my spinal tap was clear and despite the cranial tumors there is no central nervous system involvement that can be detected. Bone marrow biopsy showed significant involvement of my bone marrow. So I have stage 4 MCL. (For several months, I had had night sweats and a cough, but I hadn't followed up with these symptoms.)
My treatment that we finally settled on in a combo and Calquence, Rituximab, and Bendamustine. I started that treatment on Aug 7. Aug 7 was what I call "Big Bang Day" where I received all 3 drugs. The Rituxmab was very rough, requiring almost 7 hours. Aug 8 was a short Bentamustine booster session. The side effects are nasty, but I'm coping. My oncologist is certain that he wants me to have 2 more sessions. Then he wants imaging. And then he will decide on perhaps as many as 3 additional sessions. There 28 days between sessions. So I could be on all 3 drugs for the next six months. After that, I drop back to Calquence only... probably for the rest of my life.
In an amazing coincidence, my sister was diagnosed with breast cancer in month! I hope you all had I better month than I've been having. (+-+)
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Helpful -
Hug
1 ReactionWelcome, @chastenn. I moved your question about information regarding mantle cell lymphoma to this related discussion in the Blood Cancers support group:
- Anyone else have Mantle Cell Lymphoma https://connect.mayoclinic.org/discussion/mantle-cell-lymphoma/
I did this so you can read past posts and connect with other members who have mantle cell lymphoma (MCL) such as @nhlbob @arbutus @angelu94 @ahoang27 and @ffb1234.
@chastenn, is this a new diagnosis for you or someone you are caring for?
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4 ReactionsI am looking for information on MCL
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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Helpful -
Hug
2 ReactionsHi @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
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Helpful -
Hug
5 Reactions