CNS Lymphoma

Hi and welcome. My journey was rather different but we have had a number come on the group with CNS Lymphoma. So let’s look for them to pick up on your post.

You can put in CNS Lymphoma into the search tool near the top and look at the various posts and you can always hit the ‘reply’ button and send some questions.

I hope you don’t mind me asking but why did your dad decide not go down the Stem Cell Transplant route?

He found the chemo really hard as had to have as an inpatient for 8 days each time. Then when they agreed to do the third round there was no guarantee the tumour would shrink enough to be accepted for stem cell transplant. That’s when he decided not to progress, in his words if it can’t cure me then why go through it.  By the way I don’t mind you asking at all, it’s actually nice to have someone listen and reply, thanks 

Good morning , it’s hard to see a loved one having such a hard time and coming to a challenging decision on the way forward.

If you have had a look at my profile you will see my journey has been 21 years long but eventually in late 2013 my condition became very aggressive so we had a choice, do nothing or go for some full on treatment.

I was actually given 3+ years on the clock and the only way that could be extended was 750hrs of full on chemo and two Stem Cell Transplants.

I am now over 3 years past that alarm bell and boing good but it was all very hard work and at times touch and go. I am only in remission, but in 1999 I was told my condition was incurable and would never see remission so in my case I made the best decision.

You will see that there are not many folks come through the Community with CNS and it’s hard to advise what life will be like from now on.

I thought I would highlight our very supportive Supporting someone with incurable cancer group as this may be a benefit as you will connect with others supporting family through their cancer journey.

I am always around to listen and help out as best as I can ((hugs))

I was diagnosed with CNS  lymphoma in January 2019 it was a shock and it took me a while to come to terms with it.  I was offered the Matrix treatment, followed by stem sell transplant.  

After my second course of treatment my MRI showed the tumour was shrinking. It is a gruelling regime but I am so glad I had it . I had my stem cell transplant in June 2019 and although it took many months to recover my strength, and I must admit I felt depressed for many months, I am now back to feeling like my old self.  

It’s been a long journey but I had a brilliant team with my consultant and nursing staff.  My family gave me the strength and support I needed , I couldn’t have done it without them. 
I know it’s daunting when you are told you have CNS lymphoma but it is possible to overcome your fears and enjoy life again . 

Hi Marilineo, I see this is your first post so welcome.

I see you have had a Stem Cell Transplant, having had two Allo SCTs myself I totally understand the post treatment journey.

We do have a Stem Cell Transplant group where for pjs hang out and you may find this thread Life after a SCT - A Survivor's Guide a place where we have collected our ups and downs post SCT.