Stage 4 MCL - the future petrifies me

Hi Andy Andy1967 and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Mantle cell lymphoma but I was diagnosed way back in 1999 at 43 with a very rare 8 in a million incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Your journey sounds rather familiar, the all encompassing month of diagnosis and treatment…… I know how the overwhelming fear of relapse can rob you of living life to the full.

I relapsed multiple times over my first 14-15 years….  My story is rather complicated See my story as I had to have various treatments but I am over 8.5 years out from my last treatment, turned 68 last Nov and living a great life……. It is ever so important to not allow the journey to define your life…… you have to take control and define how you want to live….. and not rob you of the gift if life.

Unfortunately alcohol abuse is not going to help you, in fact due to your treatment your body is very fragile and over indulging in alcohol may well develop medical issues that compared to your Lymphoma journey could be much worse…. if that sounds scary it was meant to do that as I have talked with many folks over the years who walked this path and come to regret it.

‘Talking’ to others who have walked the walk can help..   

You may want to check out the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

But this group is also here to help.

Hi Mike,

Big thanks for your message - those links are incredibly helpful. Thank you very much.

I'm sorrybto hear my mom's got lymphoma 

Hi Andy, I'm Trevor and am just wondering how you're getting on. I too have MCL and, like you, had R-CHOP followed by 2 years of Rituximab (completed in Feb '24). I'm a bit older than you and, again like you, had to decide what to do with my life after treatment. I'm well aware that my MCL will return, although my decision has been that I'm going to live my life saying 'I'm glad I did!' and not 'I wish I had'..

We all choose how we want to live and I wouldn't dream of telling someone else how they should live. Perhaps the best I can do is tell tell you about some of the things 'I'm glad I did' since completing chemo:

- Moving house and spending the last 15 months doing it up.

- Volunteering for the National Trust.

- Having both my knees replaced. (And I thought chemo was tough)!!

- Joining my local Men's Shed group. (I'm so glad I did ... great company and lots of laughs).

Do I have my glummer days? Of course I do and occasionally I get really p'd off about some of the things that I now can't do or am not going to get to do BUT I'm a lot happier than I'm unhappy. 

 'I'm glad I did'  works for me and I really hope you find what works for you.

Best wishes, Trevor.

P.S. There's a Men's Shed group in Muswell Hill. Have a look (if you want) on the Men's Shed Association web site www.menssheds.org.uk

Hi Trevor.

Many thanks for your message.

I'm struggling to be honest - my biggest fear is my cancer returning and all the fear and questions that will raise. What scares me the most is being told it's returned and untreatable.

Does having stage 4 Mantle Cell Lymphoma mean it's only a matter of time for me - ie, will it get me in the end??

I have my fourth Ritixumab treatment at the Royal Free Hospital in Hampstead on Monday 15 July. 

Hi Andy….. It is very important to understand that Staging in Lymphomas is rather different from sold tumour cancers say like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. 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.

As you have been through R-CHOP a d are now having Rituximab maintenance you have had a belt and braces treatment…… can it come back, based on my long experience the answer is yes….. can it be treated again yes….. and that is me having a very rare type of NHL.

The important things now is how your life going forward it’s being defined…… are you letting the ‘what if’s?’ define you?….. this is the debilitating route…… or do you work on developing a mind set that you define the way forward

Thank you Mike,

Big and important words/statements in your message. 

You are 100% right - a positive outlook is SO important, being active equally so and having plans too.

My problem is that I am really struggling to "get going", to change my feelings of doom and gloom to thoughts and feelings of positivity and action. 

Have you looked through the links I put up from Lymphoma Action?….. there are some great support opportunities that will allow you to ‘talk’ with others…..

I have found that being in an environment where you can be challenged and indeed inspired makes a lot of difference to how you develop your mind set and indeed motivations.

LA also run a very good Lymphoma Focused Live your Life Course that is a peer-led self-management course…. These are available online and there are a few in person courses being run out.

Back in late 2013 my treatment plan was seen as my last Hope as I will have used up all the available treatments…… but 8 years 9 months on there have been a few new treatments come on line that should I relapse ‘again’ I have options but this thought is definitely not in the forefront of my daily thinking.

In my case, once I was back in my feet after my second SCT my great CNS took my straight over to our local Maggie's Centre and enrolled me in a course for post treatment recovery…….these folks were amazing and was the turning point in me getting my head sorted out.

I often talk about the concept that when we first get our cancer diagnosis we all get an invisible ruck-sack put on our backs.

We then walk through our journey including our treatments, clinics, blood tests, scans, side effects……. and unknowingly, we continually throw stuff into the ruck-sack…… and the stuff builds up. It’s only when we finished our treatment (rang the bell) and look to try and ‘live’ life we realise that it’s not that straight forward.

This is due to the weight of the ‘stuff’ we have collected in the ruck-sack pulling us down…. stuff like pent-up anxiety and stress, the ‘what if’s’, the difficulty in seeing a way forward with life, the disappointments around how some of our family and friends supported us, the silly things people said during and after treatment….. the list goes on.

There comes a time when we hit ‘the wall’ and this is the point when this ruck-sack needs to be taken off out backs and over time cleaned out. It’s not an instant fix but a process…. but the healing process can only start when we are willing to do it and to achieve this we often need help so these are some links that you may want to follow up and see where you can find this help.

I challenge you to take some positive steps and not procrastinate…..

The post treatment journey is like driving a car........ the future is open for you to see through the big wide front windscreen...... the past is only visible in the little mirrors........ if we concentrate on the little mirrors we miss the future and more importantly you crash.

Hi Andy,

I can identify with the fears you have about MCL returning and about it getting to a stage where it is no longer treatable. You're not the only one that has those concerns; I'm well aware that at some point in the future my MCL may/will return. In the meantime, I'm choosing to not let my fears get the better of me, but focus on what I can do with my life while I'm still around. 

I do, however, understand that it is not always easy to face up to our fears and move past them. That may be achieved in small steps rather than one big leap. Maybe decide on one thing that normally you would enjoy doing (museum, art gallery, theatre, London Walk etc) and commit to it. Perhaps arrange it with someone else, someone whose company you enjoy, and go and do it. Celebrate the fact that you ARE still here; whatever is in the future is... in future. 

Today, I'm going to go out and have a good lunch and later in the week there is an exhibition I'm going to. Yes, I still have all my fears tucked away inside me, but today I'm going to enjoy the day.

One step at a time, Andy.

All the best, Trevor

Thanks Mike

I have the links - have saved the mainsite in my faves.

Not signed up for any courses / groups yet. Clearly, I should