Stage 4 mantle cell lymphoma

Hi again Suzed and I am sorry to hear that your condition progressed in this way. I have lived with and been treated for my type of NHL (CTCL) for over 24 years so I do understand the journey you are on.

R-CHOP is a very effective chemo regime providing great results, I had R-CHOP’s big brother R-EPOCH so I had to be in hospital for 6 days/5 nights in my 2 IV pumps for 120hrs for my 6 cycles and I did ok with it with not a lot of side effects. 

My treatment was being used to open the door for me to go on to have 2 Allo (donor) Stem Cell Transplant's as we knew my remission would be short….. but my last treatment was back in Oct 2015 and I remain in remission to this day.

Always around to chat but you can see my full story in the link at the bottom of my posts.

Hi Sue, it's always going to be a dreadful shock when a cancer diagnosis is delivered and then it's entering the unknown when chemo starts. However, you're two-thirds of the way through your R-CHOP now and, as I know personally, we do get through it. I was diagnosed, at the age of 72, late in 2020 and the spent a year on watch and wait before starting  18 weeks of R-Chop in October 2021. I can't pretend I found the medication regime easy and By the end of cycles 5 & 6 I was throughly fatigued..... but in remission!

I followed the advice of my haematology team (wonderful people) and within a couple of months of completing my chemo I was going to the exercise classes that had been recommended. Difficult at first, although I could gradually feel my strength returning. Now, 2 years on, I've completed my Rituximab maintenance therapy, my blood results are all good and I'llI go an see my consultant in 4 months' time.

So, Sue, I'm still here .... and enjoying my life. Yes, I know I can't go back to being just as I was before treatment but at least I feel like 'me' again and can enjoy what Ican do.

Do I have confidence in my future? Put it this way, I had both both my knees replaced last year. I'm glad I had them done and I look forward to them lasting me at least another 15 years!! 

Yes, Sue, treatment can be really tough at times; it helps if you can find something in every single day to enjoy and keep looking forward to when you ARE better.

Trevor (Hopalong)