Hello

Hi Solar flare I have put up a few replies to your various posts - lets see if we can get your conversations going.

Thanks for that. I'll get the hang of it. I hope I'm not appearing totally neurotic but I just need to be kinder to myself and I think it's excellent that people like yourself can help guide and reassure.

At least I no longer feel as isolated and everyone shares a common goal. Understanding the implications of cancer, the profound change it brings and the opportunity to be able to feel part of a collective can be beneficial. 

Great, well done and lets look for you to find your way round the site and experience all that is available for you.

As you may have seen I was diagnosed back in 1999 with a rather rare and difficult to treat Stage 4a Low Grade Cutaneous T-Cell (skin) NHL. I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”...... but after years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream.

So what 'type' of NHL do you have?...... knowing this information can help us support you much more.

High grade Non hodgkin lymphoma stage 4 and low grade follicular non hodgkin lymphoma which has transformed. I was told that only 3% of people with follicular transform into high grade as rapidly.

I'm receiving R-chop and my 1st treatment was on December 8th. I seemed to tolerate it well and was discharged from hospital a few days later. My 2nd cycle of R-chop is the 30th of this month.

I had been informed that the follicular cancer was not curable but treatable but didn't really discuss prognosis. I'm 54. 

Hi Solar flare as you have Follicular Lymphoma and it has transformed it most likely will be Diffuse-Large-B-Cell-Lymphoma that you have..... does that sound failure?

The treatment for DLBCL is aimed to put this to sleep for a long time, even to cure that side, but FL is like my type of NHL - incurable.

When I started my main chemo back in 2013 I had my first of 6, 5 day night/day cycles of R-EPOCH over New Year..... the staff were great and we even had party food and a Ceilidh in the ward corridor 

As I have said before I was diagnosed way back in 1999 with my incurable NHL but like many many people who are diagnosed with low grade incurable NHLs we will live all our lives, having treatment from time to time but living a normal-ish life.

When I was diagnosed I had a few friends diagnosed with Parkinson's. MS and a few other chronic illnesses........ even although I had treatment over my years I am living as normal a life that any 66year old can live....... my friends unfortunately are deteriorating in front of my eye with no hope of treatment that can turn the tide.

I had the same with a follicular skin lymphoma transforming to high grade in the lungs and other places. Did R-CHOP and after a blast of radiotherapy afterwards got into full remission. Unfortunately it came back but biopsy showed it was follicular so it seems that the high grade has gone and my diagnosis is back to follicular. So then I did a less harsh chemo for follicular with another full remission. Now doing rituximab every 12 weeks for a while with the aim of keeping in remission for a long time. If it weren't for covid I'd be back leading a normal life. So here's hoping for a full remission for you too.

Thanks for the responses. It has helped give me better insight and understanding of follicular and how that affects my current treatment and overall prognosis. I am reassured that there's other people in the same boat as me as it can feel as though I'm isolated at times. Irrespective of support from family and friends, people who live with blood cancer can identify with my expectations better.

Im just about to have 2nd cycle of R-chop on the 30th but what do they actually mean by telling me that I have follicular cancer that has transformed and what does that mean in respect of current and future treatment? 

Solar flare this LINK to the Lymphoma Action site will help unpack Transformation for you.

Thank you very much for sharing that information wuth me. From what I gather, I'll likely always need some sort of treatment. My NHL will be treated with r chop. Unfortunately I've a very enlarged liver and spleen but pain is managed with MST and oramorph for breakthrough. This pain can be quite debilitating. Again, thank you so much for your help in understanding the implications of follicular. 

As the treatment goes on you should start to see the improvements and reduction in pain as these problem areas are melted away by the treatment.

Living with our various types of low grade NHL is all about developing the mindset and ability to live along with your condition and not letting it define you.

When I was first diagnosed (1999) I was told I would never be in any periods of remission longer than 6-9 months but the developments in treatments this all changed back in Sep 2016 when I was told I was in remission and have been clear for all this time.

If and when my type comes back my hope is that the next tool in the box will be available.

My type is rather rare so less research and developments are done but over the past 5 years a few treatments have been developed so do have something to fall back on........ but I am hanging my hat on my Stem Cell Consultants final word on the day I was discharged from her care (although I do have a yearly Late Effects clinic call with a specialist nurse)...... "Mike my hope is that you will die of old age as we have given your condition a very high dose of very strong sleeping pills