Low grade follicular NH

Hi Fulllife and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your journey so far.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (another type of slow growing Low-grade non-Hodgkin lymphoma) …….

I continued to work for 12 years in a demanding teaching job and yes had various skin treatments over the first 14 years but no full in treatments like Chemo or Radiotherapy……. I was basically on Active Monitoring (Watch and Wait) for these 14 years….. 

Yes I was often tired when I got home after a day teaching and yes I regularly had infections but just pushed through and did not let the Lymohoma define me.

I retired in the summer of 2011 as my skin was getting worse…… then in late 2013 I very quickly reaching Stage 4a when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I had 2 years of full on treatment (See my story)

So although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Low-Grade Lymphomas are only treated when it develops to a point where treatment will make a significant difference….. there are a lot of treatments available but not unlimited so care needs to be taken to use treatments wisely.

Low-Grade Lymohomas are seen as a chronic health condition but unlike say type 2 diabetes where you are on treatment for life…… or a chronic heart condition where again medication and monitoring is important….. people can go years with low-grade NHL without having treatment. 

Hi Just read your post.  I was on watch and wait for 6 years, and lived a normal life, they told me that they would not consider any form of treatment until it was absolutely necessary.  I was lucky that I felt well during the watch and wait period of my NHL - then just after lockdown,  I began to feel unwell, and a telephone consultation with my haemotologist, rang alarm bells with him, and he ordered a PET scan, that was in November 2021 and I  went straight into chemotherapy and finished in March 2022 then went straight onto maintenance of Obinituzmab for two years every two months.  I am now on treatment 9 this month and 3 more to go - then back to watch and wait. I always say,I just got on with it all, until the next blood test, and results, and as I say that went on for 6 years.  Try and look after yourself as best you can, and perhaps make sure if you can, do some exercises every day.  I did walk everyday during chemo, just to get out of the house, although only at first, for a short period of time.  You will manage  I am sure, if you don't need treatment now, think all the positives of that, it is really worth it.  I am pleased to say, that I am now back to full health and in remission, and recently, joined my local gym, for swimming etc, (we all have to  be careful of infections) par the course, I got COVID for the first time in February, and it did take it out of me and put me back, but again, all is good, and I am just getting on with my new normal - you will too.

Did almost 7 years on watch and worry

If you click on my name you can read my profile.

Lots of people don't bother filling it in.

Brilliant..glad all is well..here's hoping it will be A very, very long wait..its a bit nerve wracking when we sit down and think about it! Trying myself best to be normal and not overtime.