Hello

Hi Djb69 and a warm welcome to this corner of the Community. I am Mike and I help out around our various Lymphoma groups.

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-Grade NHL then in late 2013 a more aggressive type of NHL came along with me now reaching Stage 4a so I do appreciate the challenges of this journey rather well.

What the future looks like can often depend on the exact type of High-Grade NHL she has…..  what type has she?

As she has just finished her treatment she will most likely have a follow up PET/CT scan to check on how well her treatment has worked…… this is done about 6 weeks post treatment.

Depending on how good a response people have to treatments some people go onto regular check ups with the period between appointments extending…… 3 months, then 6 months then a year….. abd if all is ok she could be discharged at 5 years or even sooner.

Some people go on to have some maintenance treatments…… I had to go on and have Stem Cell Transplants as my chemo was only able to achieve a temporary remission.

There is no one size fits all.

Hi again Djb69 

You may find it helpful to have a look through the link below….

Questions to ask your medical team about Lymphoma

…… as there is a section where there are questions covering post treatment.

Thanks Mike for your feedback and details of your own story.  My wife has Diffuse lage B cell lymphoma.   She had a 100mm mass tucked behind her stomach.   I guess that until the initial treatment has completed and the tests done and analysed,  we won't know how we stand....Assuming she has her final chemo this week, it'll be at least into July before we know. And that's the problem psychologically isn't it?  You go through all the agony of the Chemo and you don't know whether it has done any good until the end!

Hi Djb69 …… by the time I went for my first chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film…. but the advantage was I could actually see the treatment working.

DLBCL is very responsive ti treatment….. did she have a mid way scan?

We do actually have a Diffuse large B-cell lymphoma group that you can look through.

Hi Mike,

My wife had a CT scan after cycle 3 and it's taken over a month before anyone would tell us about it.  The oncologist was very cagey about it and said something like "it's generally good but don't forget that you have a very aggressive form of Lymphoma".  That don't sound like a resounding success to me??!!  

Reading between the lines, and having had 25 years experience of various Heamatologists, Oncologists and Stem Cell Transplant Consultants this actually sounds ok…. put it this way….. If there had actually been a problem with her mid-point CT……. her treatment would have been stopped and a new plan put in place immediately.

Hi Mike,

Your latest reply does make sense and gives us some cause for optimisation.   Thanks for that.  I'll update this stream with any developments..Thanks once again for your feedback and sage advice