please is anyone treating MCL (mantle cell lymphoma) ?

[1susiE]

MCL on Ibrutinib only

[AussieNeil Administrator]

Hi Susie,

Sorry, I see that you posted a couple of months ago and didn't get an answer. That's because this community supports those with Chronic Lymphocytic Leukaemia, a related blood cancer to Mantle Cell Lymphoma.

We do have many members on Ibrutinib, but at a lower dose of 420mg per day rather than the 560mg prescribed for MCL. What specifically were you hoping to learn?

Neil

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[Wilane]

I was diagnosed with mcl in 2011 .Did r chop then switched to hyper c for stem cell transplant. I was in remission for 5 years before it returned .The doctors watched my flow count until it was approximately high 40s .Then I started ibritnib since approximately 2 years. My count goes up and down .they tell me that it will quit working at some point . They say might could do another drug if I am covered. If not could do velcade shots . Later car t not sure what will happen. We will continue to ride roller coaster . Each day is a blessing .

[1susiE in reply to Wilane]

thank you

you might like to check out Venetoclax

[pollyg2016]

Hi, my partner has mantel cell lymphoma and has been on ibrutinib only for the past three years - he was taking 4 tablets a day 140mg per tablet. Unfortunately, he has been told by his Oncologist that he needs to stop taking it as it is no longer effective. He was diagnosed with MCL in 2014 and had stem cell transplant. He has now been off the tablets for the past 4 days and today experienced severe stomach pains. I imagine he will start having night sweats again, and he is starting to get joints pains as well. He had a scan and blood tests last week and we are awaiting the next appointment to see his Oncologist to determine the next course of treatment. He is getting very anxious and concerned as the symptoms seem to come back.

[PlanetaryKim in reply to pollyg2016]

Good luck to you and your partner Polly!

[denmanjemima]

Google an article by Patrick Gilmore who had great results with his MCell lymphoma.