Mantle cell lymphoma

Hi Tony.....I'm in Melbourne. Australia.

Like you, I was diagnosed with Stage 4 MCL in May 2020 at the age of 71.

I had 4 months of R CHOP, some radiotherapy and eventually BTK inhibitors.  I was offered a SCT, but was advised I may be compromised because of my age.

The MCL has been held in remission since 2021, thanks to BTK inhibitors 

I have been prescribed Ibrutinib,  Acalabrutinib and currently Zanubrutinib. I'm still in remission, with some side effects....fatigue, headaches etc, but no sign of MCL returning.

It's a tough journey, but modern science is on our side!

The advent of new medicines/ treatments in the last 4 years is amazing. There is hope for all of us!

Best wishes from Jim

Hi T Jenko and a warm welcome to this corner of the Community although I am sorry to see you joining us but as do hope you find the community a supportive place. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Mantle cell lymphoma (MCL) 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 - Not Otherwise Specified 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.

Moving on post treatment can be challenging…… especially when the literature says that, like my Low-Grade may well come back.

I am coming up to 9 years out from my last treatment my aggressive High-Grade NHL is seen as cured but my Low-Grade is asleep.

The treatments I had for my Low-Grade were seen as my last throw if the dice….. but over the past 9 years a few new treatments have come online that are there if I need them.

As a family Relapse is firmly on a high shelf and not something that we see or talk about.

I turn 69 in Nov and our aim is to get on with living life to the full…. We define how we live…… that what if’s? have no place and definitely don’t define us.

You may want to check out Lymphoma Action. 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 others who have walked the journey….. and they do have a group specially for being in remission.

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

Always around to chat.

Hi thanks for the kind words and encouragement .I will try and keep as positive as I can from now on as you say, I’ve  got lots I want to do and see and with my beautiful grandkids a constant reminder to keep it that way .

Hi Tony, welcome to our forum. I, like you was diagnosed with Aggressive Non-hodgekins Mantle Cell Lymphoma, stage 4 , back in February 2016, at 41, I'm now 50, and in my 8th year of remission. 

I underwent chemo: R-Chop and Rhumazipab, and then stem cell, to throw at it. 

My specialist at the time was sure it would come back between 5 - 7 years, but, NO, it's been 8 years, and I'm still in remission, and the last time I saw a cont, he said my bloods was "Excellent". 

I hope this gives you much hop

I've stepped up to do more exercise recently and that helps us physically and mentally.

But I must say: Read what your own body tells you:

When you feel rubbish, share that with  friend and family, (and us) don't suffer alone. 

When you are tired; Rest. 

And when you've got more energy embrace it and enjoy time with your family and friends 

I wish you well and wish you all the best.

Kaf2 

Thanks that’s so encouraging to hear .Its so good to hear these positive replies relevant to your own diagnosis and it really helps to keep focused on enjoying life and not worrying about what may lay ahead .It took me to about the third cycle of chemotherapy to realise what you said about listening to your body .Ive always kept myself fit and find it so good for my mental health but now know that if I’m struggling one day to just relax and chill out .