Mantle cell lymphoma - I heard this cancer is rare. Does anyone else have this?

Hello

Ive recently been diagnosed with mantle cell lymphoma.

Id never heard of this and apparently it’s rare. Does anyone in this forum have Mantle cell cancer?

I’ve had first round of chemo and was fortunate not to have any side effects and second round is next week. However now I’m feeling wiped out, sweats and extreme fatigue.

Parents
  • Hello Stukie,

    I hadn't heard of mantle cell lymphoma either until July 2025.  I had been getting terrible night sweats for years and then swelling around the groin and legs which got so bad I couldn't lie flat without discomfort.  I should have gone to my GP sooner but she got me into hospital immediately.  After a couple of weeks I was transferred to a bigger hospital and the hematology section where, after scans and a biopsy, they nailed it.  It is a real shock when they tell you but they told me it is treatable and after the first few months of chemotherapy I felt OK.  I had a bad reaction to the first round of chemo but after 6 months I am now on 2 monthly treatments as an out patient for the next two years although the five hourly sessions are a bit much and I feel wiped out as well for a couple of weeks after and feel the cold something terrible.  The best thing is to keep busy and carry on as normally as you can.  

Reply
  • Hello Stukie,

    I hadn't heard of mantle cell lymphoma either until July 2025.  I had been getting terrible night sweats for years and then swelling around the groin and legs which got so bad I couldn't lie flat without discomfort.  I should have gone to my GP sooner but she got me into hospital immediately.  After a couple of weeks I was transferred to a bigger hospital and the hematology section where, after scans and a biopsy, they nailed it.  It is a real shock when they tell you but they told me it is treatable and after the first few months of chemotherapy I felt OK.  I had a bad reaction to the first round of chemo but after 6 months I am now on 2 monthly treatments as an out patient for the next two years although the five hourly sessions are a bit much and I feel wiped out as well for a couple of weeks after and feel the cold something terrible.  The best thing is to keep busy and carry on as normally as you can.  

Children
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