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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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@nhlbob

Hi Lori - thank you so much for the contact. Since we last messaged, I've had two tele med appointments with my Mayo oncologist who is absolutely great!!! I can't tell you te level of comfort I feel and the confidence I have in in compared to the doctors inBangkok. I'm flying to Mayo Rochester in two weeks. I've had a neuromuscular issue for a decade that my Mayo oncologist at wanted me to have a workup done with a neurologist there to see if the lymphoma is related or not, as that would dictate treatment. My Mayo oncologist has also requested the pathology sample from the Bangkok hospital because he wants to make sure the disease is actually mantle cell or if it's some other subtype. They'll be running FISH, genetic and next gen sequencing tests which will give a much clearer picture of things. Assuming the diagnosis is still mantle cell after the testing, my Mayo oncologist had indicated if he is certain the neuromuscular symptoms are separate (which he suspects they will be), he indicated I would be a candidate for watch and wait. But he also said that he feels I would go into remission with perhaps only 4 cycles of the BR treatment and might not need the full 6 cycles which is standard. So I'll hopefully know where things stand by August 5th.

How are you? I hope well!

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Replies to "Hi Lori - thank you so much for the contact. Since we last messaged, I've had..."

Oh, what a relief to know you’re heading to Mayo! I know from experience the peace of mind that we feel when we reach the Mother Ship…hope embraces you. ☺️ I can tell you’re feel a lot better about all of this now after all the indecision and second guessing.
Safe travels to Rochester! It’s my home away from home! Please let me know how everything goes for you. All set with lodging?