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Anyone else have Mantle Cell Lymphoma?
Blood Cancers & Disorders | Last Active: Jul 14 6:52am | Replies (89)Comment receiving replies
Hi Lori, thanks very much for your message! Being at Mayo was very encouraging. After my doctors received and reviewed my biopsied tissue, the Ki67 came back at 10% (which is considered low) and which was lower than what the pathologist in Thailand had determined (they had it at 20-30%). Mayo also ran FISH and TP53 and I didn't have the deletion which is also very favorable. Since I don't have any B symptoms, my oncologist suggested watch and wait. It's a little scary and worrisome.
I'm also dealing with a CIDP diagnosis and I saw a Mayo neurologist who ran tons of testing and is wanting me to start IVIG treatment for 4 months to see if there is any improvement. My oncologist mentioned that there might be a possibility that it could have some benefit with the MCL. So, I'm working towards starting the treatment asap. In fact I might even return to Mayo to have it done there.
How have you been?
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That’s wonderful news that your numbers are lower than first considered. I know, watch and wait can be a little hard at first. It’s like you’re waiting for the proverbial ‘other shoe to drop’. But in reality, sometimes that shoe doesn’t drop and you may never have an issue develop. If so, you’ll have been monitored regularly enough to catch anything early. So at this point, I’d put that in the ‘way back’ storage pod in my mind.
Getting started on the treatments for the CIDP will be a relief for you! Hopefully it does have an impact on the MCL. Win/win! If you return to Mayo, all the better. You’ve had a great experience there, with the confidence and trust level pretty high. Though I know that’s quite a trip from Thailand for treatment! Keep me posted, please?