Hey Donny, 

I've just had a quick look through the forum for you and unfortunately I haven't been able to find anyone posting about mantle cell lymphoma lately. 

The most recent post I could find was made 10 months ago by a member called ArtyPing. You can try and connect with them by posting on their discussion, but to find others with this diagnosis you could try using the buddy service offered by Lymphoma Action.

I hope this helps and you're able to chat to others with this diagnosis soon.

Kind regards,

Steph, Cancer Chat Moderator

My husband has just started treatment for MCL, he’s only 42. I’ve done a fair bit of research since he was diagnosed. 

Hi! What treatment is he having? My story is frustrating. Nearly a year on and getting worse by the day and consultants can’t find out why all these things are happening to me. Been referred back to a specialist hospital for a 2nd time now on the 8th. Every treatment had so far has not worked.  

Hi Donny. He’s started Nordic protocol. He was fit and healthy, normal bloods and then had a colon blockage which required him to have a 3rd of his colon removed and that’s when they found the lymphoma and most of it was removed via surgery but he still has active lymph nodes in abdomen, groin, armpit and neck. But because he had surgery they got a lot of tissue to biopsy for diagnosis. 

Have they told you what your ki67 is and whether you have TP53 mutations? Have they tried a BTK inhibitor like ibrutinib? That sometimes works better for chemo resistant MCL and especially people with TP53 mutation.

Hi!! So mine is a weird story hence the issues. I was very fit postie, gym goer etc. started getting swellings on eyes, lips head etc that only lasted 24hrs which over the year have got worse. Also getting hives and also been diagnosed with HUVS which they think the MCL could be driving. Just had a new drug cleared to try called Dapsone. I’m now at a stage where any longer than 15 mins on my feet and I’m in agony and get swollen, bruised etc. For 11 months they can’t work out why these things are happening. Had Prednisolone, Xolair injections and a month course of Rituximab and nothing has worked. From a clinical view they tell me I’m on watch and wait and see no need for Chemo yet but it’s getting to the point where there is nothing else to try. Just have no life currently and hard not having one piece of good news in a year. Told my Chemo would be the Nordic route with stem cell transplant. Got another Pet Scan on the 2nd and Marsden on 8th so will see what they say. I’m 53 so your husband and I are both young to have MCL. Hope he’s ok, please keep in touch as this seems so rare that there isn’t anyone to discus things with which can bd helpful. 

Yes, my husband had just been given a clean bill of health at work medical (he’s a firefighter). Had just been on holiday where he was biking every day. Got back and was struck down with horrific abdominal pain. His is classic MCL and quite aggressive (ki67 50-60%) but not TP53 mutated. In hindsight, i think an itchy rash that appeared about a year before diagnosis is something to do with the MCL. Also he developed a kind of allergy to hazelnuts (has tingling in his mouth and throat when he eats them). To me it sounds like your symptoms could be more related to the HUVs? Have you joined the UK and American MCL Facebook groups? I find them really helpful. The American one has a couple of thousand members so it means that there’s usually someone with a similar story to help. My husband is doing ok. Had a rough start with the Nordic as he got gastritis but we think that was mainly due to steroids on an empty stomach. He’s been well this week and out on his bike. Cytarabine/ritiximab cycle starts next week and he’s doing this one as in patient. The plan is for auto SCT after although I see that there’s a study that suggests that people who reach remission as measured by a sensitive blood test (MRD testing) don’t benefit from the SCT. So will be interested to know if that reaches standard practice in the UK in time for it husband. 

And also, have they tried you with an antihistamine? 

Yes been on Fexofenadine for basically a year. 180mg x 4 a day. Not really done anything, nothing has! Getting to the point where have no positivity left in me. Glad your husband seems to be improving  

Interested to hear your post, my partner has been diagnosed and we have an appointment tomorrow to arrange chemo. Anyone know how long the treatment is?

Hi!! Impossible to say until you know what they say tomorrow, as there are multiple different treatments. I start mine on Friday which is the Nordic protocol. 6 Chemo sessions, 3 R-CHOP & 3 Cytarabine which will alternate every 3 weeks. Then will be the SCT which generally is 3/4 weeks in isolation in hospital. That’s if it all runs smoothly. Hope that’s some sort of guide for you!