My husband was diagnosed with mantle cell lymphoma at the end of November. After 3 rounds of chemo we were told it had spread to his brain which apparently is very rare. They are experimenting with a new cocktail of chemo in the hope it might buy him some time. Anyone else had this complication?
Hi Scrappy and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Mantle Cell Lymphoma (MCL) but I was diagnosed way back in 1999 at 43 with another rare (incurable) but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
MCL is indeed rare with out 600 people diagnosed in the UK each year..... my type of Lymphoma has only about 450 a year diagnosed so I know the challenges of having a rare Lymphoma very well.
Your husbands MCL is normally seen as a High-grade non-Hodgkin lymphoma (Fast Growing) and as you are experiencing his conditioning is spreading quickly and in his case has developed Secondary CNS lymphoma. There have been a few posts about this over the years so let's look for these folks to pick up on your post.
I have in the past year talked with a number of people dealing with the same challenges through Lymphoma Action. Lymphoma Action is the UK's only Lymphoma Specific Charity who have lots of good reliable information, videos etc.
My contact was made on their regular Support Platforms both for patients with a few groups specifically for Family and Carers...... I highly recommend you have a look at this as there is nothing better than 'talking' with other who have walked the journey.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Always around to help more or just to chat
It’s hard to navigate this journey in the early days but the more you talk with others the better it can be.
Do put up your top questions as this ‘may’ tigger reply’s as some folks don’t tend to engage in the groups until they see specific questions that they have furst hand experience in ((hugs))
