Newly diagnosed Mantle Cell Lymphoma

Hi again Inthewoods good to see you put up a post.

Acceptance of the situation is an important milestone on the Lymphoma journey.

Developing a good accurate understanding of your type of Lymphoma is very important and the information available on the Lymphoma Action website is a good place to find this.

Along with the various Support Platforms available through Lymphoma Action…… most Maggie's Centres do indeed run a Heamatology Support Group.

You will see from my story with my two types of rare T-Cell NHLs I had to have significant treatments mainly due to me developing a second more aggressive type of T-Cell NHL in late 2013……….. but I am 9 years out from my last treatment and turned 69 in Nov past and I doing great.

Thank you for responding Thehighlander . I can see from your story that you have had quite a journey, it is great that you are open to share your experience and courage with everyone here. Thanks for the support - very much appreciated!

Hi Inthewoods.

Well done for putting down on paper how you really feel and what you are going through - that in itself takes some courage and often helps, rather than the thoughts whizzing around your head.

I was diagnosed in January 2023 with initially Stage 2A Mantle Cell Lymphoma and as I was not suffering from "B" symptoms, I too was on a watch and wait until April 2024, during which time my lymph nodes got larger and larger but I was reassured by the clinical team that it was not necessary to start treatment yet as long as the B symptoms stayed away. I felt generally very healthy which is always difficult with friends and family as you feel a bit of a fraud at times because you seem resonably well and all people hear is treat cancer as quickly as possible so why arent you starting treatment  ! Its so counter intuitive !

I was hoping to go on a trial for new treatments (ask your consulant if any might be appropriate for you ) but the one most suitable kept getting delayed until at last, in March 2024 it was finally open and I was accepted, starting April 2024. By this time I still had no B symptoms but had progressed to Stage 3AS (Spleen). I have been in the trial for 10 months now and it seem to be working as well as the traditional R-CHOP chemo but without the toxicity and side effects, or the need for a stem cell transplant.

What you doing  sounds exactly what you need to compliment any future treatment - yoga, diet, friends etc and above all keeping a positive attitude to life, making the most of every day while carrying on as normal as possible with life.

Sounds like you have wondeful support around you.

I wish you the very best in your journey.

MJF

Thanks for responding MJF, and for sharing your story so far.
I agree, putting my thoughts down here helped me straighten them out in my head a little bit, and know what you mean about feeling a fraud for feeling fit & healthy!

Thanks for the advice to ask about appropriate trials - I will do that. 

All the best to you too

New to the group.

Just this month diagnosed with Mantle Cell Lymphoma. Had X-ray/CT-scan, biopsy and last Saturday a whole body PET-scan as it is a wide spread lymphoma. I am waiting for the results of the last one. Lots of blood tests are done. The lymphoma makes me short of breath and walking up stairs is difficult and leaves me breathless and also my heart rate reaches 120 (normally it was 60 but now an average 75-80 in rest). The lymphoma puts painful pressure on my belly so, codeine as pain-relief.

Hopefully this Thursday the Haem consultant in Harrogate will know more about the grade, stage, and treatment.

In December we booked a holiday for the end of March/start of April but I'm afraid we can forget this holiday.

Your text: 'This is the uncertainty that I struggle with, and I can see that it is what a lot of people who post on here are worried about'.What I learned is that MCL will never completely go away. It will come back but nobody can tell when. It could be 3 years, it could be 6 years.

Hi Bullit and a warm welcome to the community but sorry to see you joining us.

You will see that I have had a rather different journey due to me having 2 very rare types of T-Cell NHLs with one of them (the first I was diagnosed with in 1999) being incurable…… but based on my experience and the things I have learned over the years is that you can read as much as you want (best info on the Lymphoma Action website) but there is no one journey that will be the same but also the information out there is often well out of date….. even the best info,

Back in Oct 2015 my team told me that the treatment I was starting was the last tool in the toolbox and if did not work then I would not have much time left on the clock…… but it worked and the amazing thing is, over the past 9 years a few new treatments have come on line for my type of Lymphoma so I now have a fall back ‘if’ my lymphoma kicks off again.

Hello Bullit , well done for taking the plunge and posting on here, I found that in itself a difficult step but then everything related to navigating through these early stages seems difficult to get my head around. Some of it is starting to get less daunting a few months in, so hopefully I’m finding my way and you will too. 

All those tests and scans etc take their toll on the mental health with the endless waiting to find out what is next. I hope you get a firmer plan of action on Thursday. 

Although I don’t have many symptoms at this time (main thing being a big spleen), my blood pressure has gone up quite a lot since being diagnosed last December so I have meds for that. I think all the anxiety has contributed to that in my case. 

I understand how you feel about your holiday (we had no holidays last year when I was in diagnosis stage), it would be great to take a break from it all, but it feels like everything is up in the air while you are waiting for results, waiting for next appointment date, not knowing if you will need to start treatment soon. Have you cancelled it already, or waiting to find out what Thursday brings? 

It is a scary thought that MCL is always lurking, ready to make an appearance - it is going to take us both time to get to grips with that thought I guess. 

Anyway, I wish you well for now and hopefully get some answers on Thursday. If you feel like it, let me know how you get on - there aren’t many of us with MCL, it seems to be a quiet forum here, so we should stick together! I am rooting for you. 

Hi MJF , I thought you might be interested to hear that I was asked to take part in a clinical trial at my last clinic called the ZEBRA trial - is that the same one you are on? I believe it started around the time you said yours opened. Anyway, I have all the info and have decided to do it, I’ll tell the team at my next clinic mid-April. I too am stage 3S - what does the A stand for in your staging?

Hi Inthewoods,

Thank you so much for your reply! And yes, at this moment it is still a bit overwhelming and it is more or less fully occupying my mind.

In short: semi-retired last April. Before that working more than full-time. No holidays in 10 years. Now working 20 hours a week as gardener/ground maintenance with less hours in winter and more hours in the rest of the year. Last autumn we had 2 holidays and planned another one starting in 2 weeks.

The fatigue is the most worrying one, taking a short break after 1/2 hour of work.Often pulse rate jumps up and very short of breath. 

Spleen is slightly enlarged and was pressing on my ribs but strangely enough that pain is at this moment gone.

And indeed, I think that uncertainty takes most of the energy and hopefully this Thursday will give more insight in what and when. The last time the consultant spoke about a two-day therapy, one with chemo and one day with immo as it is so wide spread. At the moment I can't mentally prepare as I don't know exactly for what to prepare :-). 

Holiday: not made a decision yet. So much doubt because we love the place we would go for a third time. But taking the risk of an airplane for 6,5 hours with only re-circulating air. 14 days lying on a sunbed and doing nothing is not us :-). But 100 meters walking and then stop to take a breather? I don't know...maybe wait until Thursday...

Again, thank you so much for your reply. It gives the feeling that there are more of us! Not that many as I know but it is not the quantity but the quality that counts?

Han

It is a heavy story you wrote down, Mike! It must have been a hard time around 2015. Good to read that you are doing well now. Am I right that MCL did not recur in 9 years time?

Han (Bullit: the name of a dog we head)