Is it incurable indeed? I thought it was gone until I moved to Galveston close to MD Anderson's facilities. They seem to think mantle cell lymphoma is not curable. I have lived for 20 years after being diagnosed with MCL. My only consistent side effect is anemia from low red blood counts and occasionally from low platelets. My original hematologist retired and I have finally found another one here in the local area who wants to do a bone marrow biopsy. Not anxious to do that, but we will see
Is it incurable indeed? I thought it was gone until I moved to Galveston close to MD Anderson's facilities. They seem to think mantle cell lymphoma is not curable. I have lived for 20 years after being diagnosed with MCL. My only consistent side effect is anemia from low red blood counts and occasionally from low platelets. My original hematologist retired and I have finally found another one here in the local area who wants to do a bone marrow biopsy. Not anxious to do that, but we will see
I was diagnostic mantle cell lymphoma in 2005. My hematologist started treatment with Hyper-CVAD plus rituxen, methotrexate and ARA-C. I received this regimen one week out of each month for 7 months. I've then received a analogous bone marrow transplant. I received most of my infusions at home. A week after each course my fever spiked. I then spent a week every month in the hospital on antibiotics, antifungals and antivirals. I spell a total of 54 days in the hospital receiving 29 units of blood and a eleven of platelets. I was pronounced in remission early on and have had a checkup with my hematologist every year for the last 20 years. I recently found out that MCL was incurable. Big surprise to me. At 86 years old I'm not worried.
@wileywright Is it incurable? Who says so? Did you have a Pet scan confirming if it was still in your body somewhere? Have you not been cured? Were you not cured 20 years ago? What do you think? I await hearing back from you? Take care and long happy wonderful life
I was diagnostic mantle cell lymphoma in 2005. My hematologist started treatment with Hyper-CVAD plus rituxen, methotrexate and ARA-C. I received this regimen one week out of each month for 7 months. I've then received a analogous bone marrow transplant. I received most of my infusions at home. A week after each course my fever spiked. I then spent a week every month in the hospital on antibiotics, antifungals and antivirals. I spell a total of 54 days in the hospital receiving 29 units of blood and a eleven of platelets. I was pronounced in remission early on and have had a checkup with my hematologist every year for the last 20 years. I recently found out that MCL was incurable. Big surprise to me. At 86 years old I'm not worried.
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. (+-+)
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I agree. Always know what they are injecting into you or treating you with.
@wileywright Yes. In my opinion they do that as it keeps them right I think! At the end of the day I make my own decision on everything.
I think you are right. I believe the young doc is just trying to cover all the bases.
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1 Reaction@wileywright oh my goodness I wouldn’t
Is it incurable indeed? I thought it was gone until I moved to Galveston close to MD Anderson's facilities. They seem to think mantle cell lymphoma is not curable. I have lived for 20 years after being diagnosed with MCL. My only consistent side effect is anemia from low red blood counts and occasionally from low platelets. My original hematologist retired and I have finally found another one here in the local area who wants to do a bone marrow biopsy. Not anxious to do that, but we will see
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1 Reaction@wileywright Is it incurable? Who says so? Did you have a Pet scan confirming if it was still in your body somewhere? Have you not been cured? Were you not cured 20 years ago? What do you think? I await hearing back from you? Take care and long happy wonderful life
I was diagnostic mantle cell lymphoma in 2005. My hematologist started treatment with Hyper-CVAD plus rituxen, methotrexate and ARA-C. I received this regimen one week out of each month for 7 months. I've then received a analogous bone marrow transplant. I received most of my infusions at home. A week after each course my fever spiked. I then spent a week every month in the hospital on antibiotics, antifungals and antivirals. I spell a total of 54 days in the hospital receiving 29 units of blood and a eleven of platelets. I was pronounced in remission early on and have had a checkup with my hematologist every year for the last 20 years. I recently found out that MCL was incurable. Big surprise to me. At 86 years old I'm not worried.
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1 ReactionHi @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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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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