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Anyone else have Mantle Cell Lymphoma?
Blood Cancers & Disorders | Last Active: Aug 16 12:31pm | Replies (98)Comment receiving replies
Hello, 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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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?