Follicular lymphoma spread to new area

Usually with stage 4 there are multiple areas affected,I'm currently undergoing treatment for stage 2 fl,iwas told I have it at multiple areas but one is impacting on my tube by kidney to uretha I'm due a scan in a month or so to see how it is doing all I can say to your husband is stay positive! low grade follicular is not curable but it is totally treatable! If the haematology team have opted for wait and see approach that means there is nothing impacting on anything,this is a very slow growing condition I've had two cycles of chemo/immunotherapy with another 4 to go has he been OK during his treatment? Tell him to as bon Jovi once wisely said "keep the faith"  it's always hard to hear there has been any sort of set back when you think your getting somewhere but this is a lifelong condition with the treatment available I'm sure he will be just fine take care 

Thanks for your reply. He was ok during treatment other than the fatigue mainly and mouth and head sores. 
I'm sure it will be ok just didn’t think it would spread during treatment, but I know it’s a lifelong thing so just have to get our heads round it. 

Hope you’re ok during your treatment and all goes well 

Been very lucky with treatment only side effect is fatigue no sores or sickness touch wood take care stay positive always here if you or your husband need a chat 

Hi Godfrey sorry to hear this…. as you know I have/had 2 different types of T-Cell NHLs one Low-Grade like FL and an aggressive High-Grade.

Have they done a biopsy on the new area?….. over the years I have had a few relapse false alarm biopsies……. But the last biopsy found out I had a second type of Lymphoma…… 

Hi Mike 

no not yet. The feedback from ucl was they want to see over the next couple of months how things progress ( or not) then make a decision on the next stage of treatment or way forward. 
we are probably panicking but I think that’s because of the way his haematologist reacted when she told him the news. She was talking about stem cell treatment or clinical trials…….then the specialist team seem happy to wait a while so it’s confusing? 

I feel like it’s going to be ok, even if more treatment is needed but my husband has taken it badly. I’m trying to reassure him but I realise it’s not happening to my body. It must be hard when it’s inside you, whatever any one else says. 

just thought I’d try to get so some reassurance from others that have gone through similar experiences that I can pass on. I  know that this form of cancer will always be a part of our lives and hopefully it will be a long and happy one for my husband. We are only just on the path. I just think he was so sure that the initial treatment would get him in remission and that we wouldn’t be facing this again so soon. But I guess that’s the disease…. You just never know. 
Thank you for replying 

Based on my long experience (24+ years) and having had 2 Allo (donor) Stem Cell Transplants (June 2014 then Oct 2015) when I meet with the Heamatology/SCT unit in Glasgow (we are in Inverness) there was no Watch and Wait…… the SCT green button was pressed immediately…… so I would take UCKs approach as positive.

A month or so after my second Allo SCT ‘something’ new showed up on my lung…… I also have dormant Asbestosis and my Respiratory Consultant is a good family friend so it was all checked out quickly and was nothing to do with my Lymphoma……. 9+ years on its still there and has never changed or been a problem.

It is so easy to catastrophes….. but our family mantra has always been ‘…… there us no point in stressing about something until you are actually told there was something actually there to stress about….’ but even then, we are all cup half full people so we just don’t stress stuff……. we just ask “what is the plan and when do we start” ((hugs))

Your husbands haemotoligist does not decide alone on what treatment is taken, going forward they have meetings with other specialists from other hospitals,the treatment my haemotogist put forward for me was changed following  a said meeting, albeit a different chemo drug with longer day cycles (went from a 24 day to a 28 day cycle) this was down to my age and general health I would certainly take the positive of a wait and see approach take care

Thank you