Hi ArtyPing,

I can see you have received a reply from a moderator previously, so there's not too much more I can add to that - but my reply will boost your post so a few more people should see it, and hopefully you'll get some more replies here.

I hope that the forum is useful for you during this time and that things go well with the start of treatment.

Wishing you all the best,

Ben
Cancer Chat Moderator

Hi Donny,

Good for you to make contact and I hope I can be of some assistance.

My mantle cell lymphoma initially manifested itself with lumps in the groin, which I believe I had had for some years and ignored, and a 'string of pearls' in my neck. I also found I got more tired than I used to, but I was pretty full on with business and of course getting older, so ignored that too. The consultant identified another symptom of night sweats which I was having. Otherwise I didn't feel ill. 

I can tell you that I had the NORDIC treatment followed by stem-cell transplant and feel pretty good and am recovering nicely, subject to another bone marrow biopsy to check al is OK before commencing maintenance injections.

So all that said, not sure that helps you, but what is occurring with you?

Regards

Richard

Hi Richard, we seem to be in a very rare situation where not many have MCL. It’s unusual for me to have this as only 53 and told it’s an older person cancer. I seem to be baffling all the experts currently because I feel perfectly well and my bloods etc are good…… but….. I’m having bad facial swellings mainly eyes, lips etc which mainly happen overnight when sleeping, so being horizontal is definitely a factor. I’ve had scan after scan, test after test and all come back negative. They simply just can’t find out why it’s happening. I’m due to see an immunologist soon and really that’s the last call. So basically I was wondering if you had any of these problems? Really hope your recovery goes well and appreciate you replying to me. Would be good to keep in touch as feel I’ve a long road ahead (diagnosed 18th Jan 24). Many thanks Craig

Hi Craig, sorry for the delay in responding. So how were you diagnosed with MCL if all tests seem to come back negative? Did you have a biopsy of any sort? I had a lymph biopsy under the armpit which apparently allowed the diagnosis of MCL, and later a bone marrow biopsy to check for activity in the bone marrow. What NHS trust are you under? I come under a cluster of Northampton, Kettering and Leicester which I am told are very good in this field, and they hold regular conferences to discuss each case so agree the most appropriate course of action. You can always ask for a second opinion if you aren't happy with what you have.

I didn't have any visible swelling other than than in the neck and groin as far as I can recall. Maybe your condition has resulted in a reaction to something which previously didn't trouble you. 

As far as our long road goes, it obviously depends on the treatment you are going to have. I can tell you I am 67 and have my own business, which could have worried me a heck of a lot more than it did in the end. Fortunately I took on a manager the year before I was diagnosed and he has been a superstar throughout, which has allowed me time to be a bit off colour and to litsen to my body when it needs rest through the treatment. I was considered fit enough to have a course of chemo and then a stem cell transplant. A degree of fitness and a positive outlook definitely helps you through. 

A bit of a ramble, but I hope it is of use!

Keep in touch. I may not respond immediately but I will respond!

Cheers

Richard 

Hi Richard

So mine started with some swelling in my neck which wouldn’t go away, had to wait 7 weeks to see a doctor finally. Had blood tests which came back negative. Was told it definitely wasn’t cancer. Had a biopsy to make sure and revealed the MCL. Couldn’t believe it, I’m a young 53 year old who is fit, played sport, gym and a Postman for work. My facial swellings are the only thing visibly wrong at the moment as doesn’t look very nice. They said they felt Chemo wasn’t needed yet but needed to find out why I’m swelling which is still the case. I’m now due to have an eye biopsy to check that’s ok and then an immunologist. Pretty sure these will come back negative and so only thing left to do would be straight to Chemo which I take isn’t very nice. Again thanks for replying, nice to touch base with someone going through the same thing. Oh I live in a town called Lewes, near Brighton in East Sussex. 

thanks Craig

Hi Craig, we have similar tales actually. I was sent to ENT initially and they found nothing so it was left for a while until I went back to doctor. To be honest I didn’t find the chemo that bad-they give you various tablets to counter the side effects you might have and you can feel a bit crummy but OK if you stay positive. 

Hi Richard

so how long/courses did you have of Chemo? 

Craig