New-Diagnosed initially with high grade Large B Cell NHL

Hi  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed in 1999 with a rare, incurable but treatable type of low grade NHL (CTCL) Stage 4a so although my Lymphoma ‘type’ my be different I know this journey rather well.

It takes time to get your head round living life with a long term condition……. But I am coming up to 23 years and living a good life.

Up until Sep 2016 I only ever had 6-9 more baths remission before treatment had to start again but with the developments of treatment so am now over 5 years in remission and doing great.

Ask your specific questions and I will do my best to help.

Hi Mike, thanks for your reply, hearing you are still goung strong after 23 years gives me hope.

I have been told my cancer is treatable but incurable. What treatments were you offered? I have been told I would be given chemo if required and removal of tumours if their location and size was causing problems. What are the main difference between the high grade and low grade lymphomas.

The consultant also said there was a risk of the cancer spreading to the bones. Do you know of many people this has hapoened to and what symptoms I should look out for.

Because the tumours have appeared so soon after chemo I am worried I didn't respond to chemo well enough and what this might mean for future treatments. I am really struggling with what this all means in terms of life expectancy and how often I will have to go through chemo in the futture 

Yes I am treatable but incurable also.

As I have a totally different type of low grade NHL (There are over 60 types and subtypes of Lymphoma!!!!!) so I needed a different approach - hit my community name Thehighlander and see my long story.

There is always a risk of Lymphoma spreading anywhere and everywhere but on the whole this can all be treated.

You will see in my profile that at one point I had a 70% tumour coverage as the tumours you and many others may have inside you and can’t see…… I had them visible on my body but I am still hear and my skin is perfect.

The main difference between Low Grade and High Grade is low grade is a slow growing incurable NHL that some people can go years between the various treatments available…… High Grade tends to aggressive and fast growing so needs to be hit hard but it is curable.

As to life expectancy people live all their (long) lives along with their low grade.

I always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups with a few specific groups for carers.

You may also want to check out the Lymphoma Action Buddy Service where your husband can be linked up with someone who has walked the same treatment journey.

Life does goes on. Out hopes and dreams are still fulfilled. We are in York with our two girls and 4 granddaughters (all born years after my first diagnosis) having a family get together 

((hugs))

Thanks Mike, thats very reassuri g and I will check out the link you sent. Have a lovely time with your family.