Where do I start. Well went to A&E in October 2024 because of back pain and abdomen like a swollen house brick. Doctor immediately ordered scan and then was called into side room to be given devastating news that I had MCL, no cure but treatable. Refused to read any literature related to it just wanted to hide away. I thought any reading would be negative. 6 rounds of chemo and scan showed most of the lymphoma had gone, apart from residual in lower abdomen. Consultant then put me on maintenance (rituximab) had one injection and given future dates one year in advance for further injections. I knew something wasn't right though pains in abdomen and feeling rough. Unfortunately at next scan the MCL had spread wildly and consultant stopped rituximab. Obviously it had not worked. I have now started Ibrutinib and hopefully might get a degree of control on the MCL. Early days. This is the first time I have been able to communicate with anyone outside family. For months I wouldn't talk to anyone about disease, I had two viral infections during chemo and had two hospital admissions for 17 days and didn't want any visitors. At moment I feel good and living life as normal but constantly aware of how evil MCL can be in terms of returning and relapse.
Hi Jojohn 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 for some context……, I was diagnosed way back in 1999 at 44 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.
The Lymphoma journey is full of twists and turns especially with these incurable but treatable types…… in fact I relapsed multiply times over my first 15+ years with the longest partial remission lasting about 9 months…..
But in way of some encouragement… our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and as a family we celebrated 9.5 years since my last treatment (See my story)
Its all about making the most of the times where no treatment is required so I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
Always around to chat.
