Diagnosis and what’s next.

1. Hi, I know that bloody cloud!!! I'm palliative care, no cure for me! I'm feeling really well in fact to look at me you wouldn't think that anything is wrong with me, people keep telling me how well I look! But as you do, I have my moments, they are called bugger it moments!  The best thing I was told was,  that I'm living with cancer not dying from it! That helped the black cloud to move away a bit and made me slightly more positive, I really hope this helps. From a 62 year old gal that wants to live!

Thank you marleymoo. It’s awful isn’t it. 
if you don’t mind me asking what sort palliative care are you facing. 
talking does help. 
im feeling quite alone as MCL seems so unique that no one quite knows do they. I guess im at the begging of all of this. 
I must add I’ve lived healthily with these lumps in my neck for at least 16 months!!! 

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

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

First.... Hi Marleymoo and I am sorry to read about your Breast Cancer diagnosis and that you are now on Palliative Care..... I do see that you have been posting on our dedicated Breast cancer support group. Could I also highlight our dedicated Living with incurable cancer - incurable patients only support group as this is a safe place to talk with others who are navigating the same journey ((hugs))

 MrsHarvey I don’t have Mantle cell lymphoma but for some context I was diagnosed way back in 1999 at 43 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 and welcome to the unusual world of Lymphoma.

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) with over 60 types and sub-types of Lymphoma but regardless the type and there are lots of treatment available. as and when required...... even at Stage 4.

The Staging in Lymphoma is rather different from solid tumour cancers 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.

Getting clear information is very important so these links below will help you get the best out of your appointments.

     Top tips for getting the best from your appointments

     Questions to ask your medical team about Lymphoma

I am sure that you have lots of questions so please do ask them...... but in way of some encouragement…… when I was diagnosed at age 44 our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 16 years but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 69 in Nov and as a family we celebrated 9 years since my last treatment in Oct last year and I am still living a great life ((hugs))

Thank you. I notice you reach out to many people which is very kind. I guess feeling very well is difficult as when they say the C word you expect to feel crap but I really don’t. 
I’ve had a few appointments with my consultant who is most excellent and very honest and kind but I guess the question we all want to know is how long do I have left. 

Hi MrsHarvey I have been a volunteer on this community but also with Lymphoma Action for about 7 years.

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.

All the links I put up are taken from the Lymphoma Action website. This information is fact checked so is accurate and up to date with the content being checked by medical writers and consultants……. When you come to Lymphoma Dr Google is not your friend.

They also run various Lymphoma Specific Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

As I said I worked for in a very demanding teaching job for the first 12 years after my diagnosis…. my first type of T-Cell is very unusual as it grows on the skin so it was treated as though so had bad Psoriasis but I was basically on Active Monitoring (Watch and Wait)  for about 14 years before my condition de eloped to a point where full on treatments were required…. My story is rather complicated but you can see my story in this link > See my story

MrsHarvey said:

I guess the question we all want to know is how long do I have left.

This is an interesting question…. We know that we can’t see the future but based on my 25 years on my journey and having talked with many many people….. Lymphoma is a very different cancer compared to most other cancers….. my first type of T-Cell NHL is seen as incurable the other was aggressive but here I am in remission living a great life.

Many consultants will say that when it comes to Lymphoma you have to see it to be like a chronic health condition that may need treatment from time to time but a very very high percentage of people don’t die from Lymphoma….. they live with it until their time is up…..

((Hugs))

Here is hoping. I’ve always felt I wouldn’t make old bones but I’d like a lot longer yet. 
I’ll check out the groups. I’ve slowly been processing this and staying off google. What a terrifying place that is. But as humans we seek assurance and answers and google can do that but not for MCL. Having read some stories on here it really does seem each and everyone of us fights this in vastly different ways. 
thank you for responding. I’m glad you’re ok. It’s a huge relief to hear a good news story. 

Yes it is awful and talking does help, my cancer centre offers free counselling sessions and I've found that a great help, I can say things to her that couldn't say to my family as they would worry. My palliative care at the moment is taking 2 tablets,  letrozole and palbociclib,  which I take at night to try and avoid the side effects, I try to call these tablets my friends as so far my disease is stable, I have scans every 3 months, mri to my head and a tc body scan, which I had today, just have to wait for the results now. 

Hello Mrs Harvey.

I was diagnosed with MCL at age 58, had 6 rounds if RCHOP and then an allogeneic (donated) transplant in 2009.

The regime was arduous and I was told MCL is incurable, but here I am at 15 years later at nearly 74 years of age, living life quite happily.

I have it in writing from my bone marrow transplant unit in Leicester advising that I am now a SURVIVOR!

Treatment has come a long way since then, so don't write yourself off just yet!

Stay well and keep smiling. Xx

It never goes does it. 
do you feel well? 
I’m glad it’s stable. No one deserves this. I’m just at the start of all this and it’s beyond daunting. There are days it’s completely out of my mind and then days like yesterday where I feel utterly beaten. I’ve not even started treatment and expect my next appointment to be a watch and wait outcome. Which is hard because I’m watching and waiting. But I’m trying to take each day as it comes. Just hard work isn’t it x 

Wow that’s an incredible story. 

im in Lincolnshire and my consultant and MDT have been so far excellent. 

im yet to be told I need treatment but I know thats an investable. fear and worry is paramount and I think thats the worst part to manage. For me anyway.

thank

you.