Feeling very alone and scared

Hi again Johugs and welcome across to this corner of the community.

I am Mike Thehighlander and I talked on your first post in the New to Community. I help out around our blood cancer groups. I have another type of very rare Non Hodgkin's Lymphoma diagnosed back in 1999.

Mantle Cell Lymphoma is a High-grade B-cell non-Hodgkin lymphomas so often needs to be treated aggressively.

So we can help you more what have you been told my your clinical team?

((hugs))

Hi Jo and a second welcome, MCL is not a common type of lymphoma so this group can be quiet, be assured treatments have advanced over the last 12 years and the are a range of options and some now are seen as the standard way forward. Do you know whether you have to have treatment yet as some versions of mantle cell can be slow growing so don't need treatment straight away? If it is a faster growing type then its possible they will offer the Nordic protocol which is very effective these days. 

We are here to help as and when needed.

John 

Hi Johugs,

I have just finished my treatment for Mantle cell and am in remission.

I was on watch and wait for 9 months then started Nordic Protocol (but without the r-chop). I then had a stem cell transplant using my own cells.

I started treatment at the start of November 2020 and got home after transplant late April.

I had my treatment as an inpatient. In for roughly 4 days every month. I had a few weeks break before stem cell.

I will be having maintenance therapy every 2 months for a couple of years. This will be a drug called rituximab.

I am still very tired and have been told I'll be up and down for a while.

As someone else said there has been a lot of research, trials and changes in the treatment of mantle cell in recent years.

All the best! 

Hello... Don't be scared. I met a bloke at maintenance who'd been given a year with mcl- 13 years ago. I have finished R-CHOP but am apparently too old for stem cell transplant: nonetheless, his story gave me heart. Hope I can pass some of that back to you.