low-grade NHL

Hi and welcome though sorry to see you joining our elite corner, low grad lymphoma does tax the mind, your told you have a blood cancer but its possible we won't treat it and those words just don't make sense when you think about everything cancer related. However blood cancers are different to solid tumour ones and with low grade some people think of it as a chronic disease that's only treated when it flairs but a bit like asthma or diabetes.

Did they say what type of low grade?

The scan will show where the disease is in your body as it can pop up just about anywhere and that then a) gives them a baseline and b) informs a treatment plan when needed.

The are quite a few similar to you so hopefully they post with their experiences, I had an aggressive type back in 2009 so had to have treatment which is all a distant memory now.

any questions just ask

John  

thanks for the message johnr in terms of the diagnosis so far they have said it is follicular lymphoma, glad to hear the treatment is a distant memory and fills me with a bit of optimism that it was 12 years ago

Hi  and a second welcome from me.

Non Hodgkin’s Lymphoma is a mind bender as it’s not often straight forward and totally different from other solid tumour cancers

Like you, I was diagnosed with another type of Low Grade NHL and this was back in 1999 eventually reaching stage 4a. My type like FL is incurable but very treatable, the added problem with my type was periods of remission were very short.

My Cutaneous T-Cell Non Hodgkin’s Lymphoma was basically treated as bad Psoriasis for 14 years before we eventually had to use the big gun treatments.

John has given you some great information and it is important that you don’t do remand on Google searches on this but use good places for information.

Do check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of up to date Lymphoma Information, great videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.

I will add that although I was told back in 1999 that I would never be in any long term remission, following a few years treatment I have been in full metabolic remission since Sep 2016 and I am doing great.

Were are around to answer you questions and help you navigate this as best as we can.

thanks Thehighlander really appreciate the note too. Really pleased to hear about your recovery. I am going to take a look at Lymphoma Action and actually have a big run planned for this weekend (booked months back, but still plan on doing it) and will be raising money for them