Transformation from low grade to high grade NHL

Hi again Jane03 this unfortunately happens to the  2 or 3 and there have been a number of folks come through the group on the same pathway so lets look for them to pick up on your post.

This is a link to the Lymphoma Actions website about Lymphoma Transformation. Indeed the aim will to treatment the high grade with an aim of putting it to sleep for a long time but yes, your low grade like my low grade will still be hanging around with you for life..... but again very treatable when required.

I highlighted in your first post that you may want to check out Lymphoma Action as they run regular very supportive Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where you can be linked up with someone who has walked the same treatment journey.

((hugs))

Thanks Mike, yes I have looked at Lymphoma Action, it's been very helpful. I suppose I'm just coming to terms with the idea of this thing hanging around for life. I don't really understand how it's going to effect things. My consultant compared it to living with diabetes or a similar disease that is incurable. Have to wait and see I guess. 

I was diagnosed with my rare type of Low Grade Skin NHL in 1999 and it was challenging as at times due to how my condition was treated - thing the worst Psoriasis you have r er seen and some.

At times I was 70% covered in very bad open sores (tumours) but still worked and lived a normal-ish in a rather demanding job in education.

My initial first 14 years treatment had me at hospital 2-3 times a week for about 20 weeks every year. I would go to hospital at 7am have the treatment, come home for breakfast, have a shower, get changed and go to work and teach a full timetable.

Indeed you need to see this as a chronic illness but unlike many chronic conditions this is very treatable with great results. 

When I was first diagnosed I had friends diagnosed with others types of cancers, Multiple Sclerosis. Parkinson’s and Diabetes….. the ones with the cancers are long gone. The one with diabetes lives a relatively normal life the two with the MS and Parkinson’s are fading before my eyes……. This is all about a mind set and how we position our understanding about living with our condition not being controlled by it ((hugs))

Hi Jane, I had the same, low grade transform to high grade. My lymphoma was everywhere so I did 6 RCHOP followed by 15 radiotherapy. I was then in full remission. Unfortunately a year later it came back! But biopsy showed it was the low grade back, so the high grade is hopefully cured. I then did a different easier chemo, another remission and am doing rituximab every 12 weeks for two years as a maintenance drug. No reason yours will come back as quick but it shows that cure of the high grade is likely.