NH follicular lymphoma

Hi PB1 and a warm 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 don’t have Follicular Lymphoma but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Low Grade NHL (Stage 4a) so although my Low Grade Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Like my type of NHL your FL is incurable so a Relapse is always possible. I relapsed multiple times over my first 16 years with the longest remission being about 9 months but we have always found that next treatment to do the job..... and there are lots of treatment available for FL.

Always around to help more or just to chat

I had chemo in 2018 followed by radiotherapy and was then clear until a relapse in 2020. Got into remission a second time and am now doing maintenance rituximab which I didn't do the first time. So it is possible to get clear again. I am 68 (female) next week so almost the same age too. Let us know what treatment they suggest. I did R-CHOP first time and R-Bendamustine second time.

Hi there, I had 6 courses of chemo plus rhituximab which finished around 18 months ago when I was in remission. I was scheduled to have 2 years of maintenance rhituximab every 2 months. Unfortunately in August 21 I caught covid and spent 6.5 weeks in hospital on oxygen, the maintenance treatment was abandoned as it was thought it was probably more dangerous to me to get covid again and rhituximab lowers your immunity. They were still keeping an eye on me and earlier this year a vCT scan showed a return of the lymphoma. I've had 4 courses of R- Chop so far with 2 more but possibly 4 still to go. Unfortunately we're prone to relapses and just have to grin and bare it.

Hi PB1.  I was diagnosed with stage 4 FL in early 2020 and had 6 cycles of RCHOP.  Thereafter I have had 4 cycles of Rituximab maintenance.  However lymphoma returned during this period and doctors stopped giving Rituximab as it wasn’t working for me.  Then I was on watch and wait period of nearly 11 months and just started the 2nd line treatment yesterday with Obinituzumab + Bendamustine.  I was told that there are many exciting new therapies available with very high  response rates in FL. I am sure you are in good hands and let’s hope for the best.  

I pray your treatment is going well in these last few days, these posts I read are very positive.