Recent diagnosis of NHL, DLBCL, High-Grade, likely Stage 1; treatment to start soon

Hi again KotC_Gorey and well done navigating across to this corner of the Community........ I won't repeat what I said in your 2 posts in the New to Community but you.... and others can see my replies in these 2 links.

Post 1 Recent diagnosis of NHL, DLBCL, High-Grade, likely Stage 1

Post 2 Cancer and Working

You say in your reply to Post 2 that you are going to be having 3-4 cycles of R-CHOP........ R-CHOP is one of many types of regimes available, it is widely used and very effective......... as for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.

My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

I had the big brother of R-CHOP - R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ R-CHOP is less aggressive.

You may find this link helpful as you get ready for treatment....... Top tips for the day of your chemotherapy

In your first post you replied....... "I am sorry you have Stage 4 lymphoma and had have had your battle for 25+ years. I can't imagine with that must be like"

The PET Scan will officially Stage you......The first thing to get is the Staging in Lymphoma is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. As you know I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies…..

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

As for my 25 years........ when you have a Low-grade non-Hodgkin lymphoma it is seen as a life-long condition.......... as you know I was diagnosed in 1999 age 44 when our daughters were 14 and 18……  but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and as a family we celebrated 9.5 years since my last treatment.

I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.

A High-grade non-Hodgkin lymphoma like your DLBCL can be fast growing but is one of the types that can be put into long term remission..... my second type of T-Cell was like a High-Grade but my consultant will not use the words cured...... ironically when I took out travel insurance for our holiday a few weeks ago.... as I had not had any treatment in 5 years this was classed as cured!!!!!!...... but my low-grade is incurable.

Watch where you get your information from...... I recommend the Lymphoma Action website. 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.

Lymphoma is a funny type of cancer so do take time to read up about it.

Any question do ask them.

Thanks for all of the links. Will definitely look at those. I have read much about it already from the Macmillan group and the Irish Cancer Society, a group that I am a recent advocate with (emailing TD's and the like about campaigns.)