Mantle cell lymphoma

Hi Confused1978 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your diagnosis.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Mantle cell lymphoma but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)

Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

There have been a few new members in the group lately so let’s see if they are still looking in.

Lymphoma is the 5th most common type of cancer in the UK after breast, lung, colon and prostate cancers and with over 60 types and sub-types of Lymphoma……. Lymphoma can be a complicated condition…… but even some of the more rare types like my 2 (lucky me) and even with some unique complications remain to be very treatable.

It’s very important to understand that Staging in Lymphoma is very very different from solid tumour cancers like Breast, Lung, Colon and Prostate….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s just not.

As I said I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies…..

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

A few questions…..

Are you newly diagnosed?

Have you been given a treatment plan?

Are you in the UK

Always around to help out.

Hi there Confused1978 ,

I was diagnosed with Low grade MCL Dec 2024 after a bout of illness last summer, which subsequently resolved itself. The original diagnosis was described as ‘at least stage III’, with the spleen affected; but following a recent CT scan and bone marrow biopsy, I noticed on my clinic letter received last week that it is now described as stage IV (this wasn’t even mentioned by the consultant when I saw him - presumably as it doesn’t change anything in terms of approach). However, unlike your diagnosis, I do not have the TP53 mutation, so not quite the same. 

The plan so far for me is active monitoring (watch & wait), and that continues for now. My last few blood tests have shown iron deficient anaemia, so it was decided to investigate my gastro intestinal tract to check for potential blood loss there - I believe that MCL often can affect that area. I have that procedure in a few weeks time. 

Quite a short journey so far, and no treatment, but lots of worry and thoughts despite that. Hopefully it is still of interest to you though.

How far into your MCL journey are you?

Best wishes, Helen

Hi, yes I have. Diagnosed in March I have my final chemo on Wednesday as part of the Nordic cycle. I can’t deny that it’s been one of the toughest things I’ve gone through but I’m hanging on to the fact that it’s my last one this week hoping that my CT scan shows progress to start a maintenance programme. 

I was first diagnosed two years ago with MCL at level 3. Level 3 is more than a couple swollen lymph nodes and on both sides of the diaphragm.  I went into remission eighteen months ago when they returned to normal size. When I relapsed in June this year they only appeared both sides of my neck but not the other side of the diaphragm so I was level 2. 

My current medication has shrunk them back to normal size so I am guessing I am in remission again.

As has been said lymphoma isn’t like other cancers with tumours. Level 3 and Level 4 can respond well to treatment but proper checks have to be made for underlying conditions such as a weak heart as tragically chemotherapy can kill.

I hope things go well for you.

Philip 

I have just been diagnosed with lymphoma but they are still running tests to establish which one. I get the CyclinD1 results next Tuesday, it’s really frustrating because I want answers now whereas it just goes so slowly. I have no symptoms just my raised white cell count. My concern is that if it’s watch and wait how do they know if something else is going on. 

Hi Turbotim and a warm welcome to this area of the community…… I totally understand your frustrations as over 1999/2000 it took a full year to officially identify my first type Lymphoma….

Apart from a developing rash on my back I had no other symptoms and as I had a rare skin Lymphoma I was treated as though I had bad Psoriasis…. but I was basically on Active Monitoring (Watch and Wait)  for 14 years before my condition developed plus another rare Lymphoma appeared resulting in the need for full on treatment.

I continued to work for the first 12 years in a demanding Further Education teaching job and was retired for 2 years before the treatment started.

There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below.

Hodgkin's Lymphoma

General Non Hodgkin's Lymphoma

Follicular Lymphoma

Diffuse Large B-Cell Lymphoma

Mantel Cell Lymphoma

T-cell lymphomas

CLL, SLL and HCL

Do join the correct group once you have your diagnosis.

Yes I have both. I was diagnosed with MCL  mid March after a PET scan and biopsy from my groin. Growths all in my abdomen, I looked 9 months pregnant and in a lot of pain. Admitted straight away to undertake the NORDIC cycle, consultant said it was going to be tough and there is no denying it’s one of the toughest things I’ve ever faced. I have lost a significant amount of weight and been in & out of hospital with infections however when I have been home I’ve tried to remain healthy by walking each day and building up my strength. 
My biopsy was sent to Leeds for further analysis and that’s when I was told about the TP53 mutation further shock. 
I am currently in hospital having my final NORDIC cycle, my interim CT scan was positive with good signs of shrinkage. Bone marrow biopsy also midway shows a small amount of chemo still remaining. Consultant wants me have another after my final chemo + PET scan. 
We are just talking about my maintenance programme. 

Good Luck