Dreadful back pain

Hi Johnelk39 and a warm welcome to this corner of the Community although I am sorry to hear about your challenges. I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.

There have been a few folks with the same challenges post in the group so let’s see if they are still using the community.

What exact type of NHL do you have?

It was follicular lymphoma 2 years ago but relapsed this year and sadly turned into aggressive DLBCL.

I understand the journey you have been on in part although my story is very very different.

You may want to check out the Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than talking with others and may widen your ability to connect with others on the same path.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

So sorry to hear of this. Has it invaded the bone or is a tumour impinging on nerves? In any case, the aggressive lymphoma tumours, when confronted with well-proved therapy, tend to melt like ice cubes. If in the bone, I would imagine that radiotherapy might be in the picture. Either way, some relief should be arriving soon.