My wonderful husband was diagnosed with Stage 3AS Grade 1-2 follicular lymphoma six weeks ago. He's had four rounds of Rituximab monotherapy and we're due to go for an appointment with the haemotologist this week and I'm so nervous to hear how they think the treatment's working. The lymph nodes on his neck have definitely shrunk though you can still feel them but I'm not sure if those in his groin and armpit have shrunk much; he thinks they have and that they are a bit softer, but the difference isn't as noticeable as in his neck. We weren't really told what to expect in terms of a response so not sure if this is okay and they may keep shrinking over the coming months or this suggests the drug hasn't had the best effect? I'm really struggling to cope with his diagnosis and I'm just so scared of being blindsided with more bad news in a consultation room once again. Has anyone else had any experience of this or positive stories of good outcomes when Rituximab hasn't had a great response? Many thanks.
Hi Woodland90 and very warm welcome to this corner of the Macmillan Community although I am sorry that you had to find us and especially sorry to hear about your husband’s FL diagnosis.
I am Mike and I help out around our Lymphoma groups.
I don’t have Follicular Lymphoma but for 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 (a type of slow growing Low-grade non-Hodgkin lymphoma)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well……. I was also diagnosed with Asbestosis in 2012 and Prostate Cancer this April past.
From what you have described it’s sounds like positive progress…….
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey was between Oct 2013 to Oct 2015 and it was rather complicated (See my story)
As part of my treatment I had 6 cycles of R-EPOCH that had me in hospital for 5 nights/6 days on my 2 IV pumps 24/7 for over 120hrs at a time……. and this included about 100hrs of Rituximab plus a number of chemo drugs and it did the job….
These treatments can be a slow burn….. slowly building as the effects of the treatment accumulates….. and slowly reducing growth areas…….. and even once the treatment is finished the treatment continues to work….. hence the reason that a post treatment scan is not done immediately.
The other thing to consider is (based on my experience) that if there was ‘ANY’ doubt that the treatment was not doing it’s job the treatment protocol would be re-assessed and a different protocol would be used.
His Follicular Lymphoma like my Cutaneous T-Cell NHL fall into the Low-grade non-Hodgkin lymphoma group that most are seen as life long conditions that will be treated as and when required.
His Rituximab is a good safe first line treatment so let’s look first it to do what it is designed to and get him in remission.
Always are d to chat and answer questions.
HelloThehighlander thanks very much for your message and for all the great work you do on here - this forum which has been a real lifeline since my husband's diagnosis and I've read many of your posts! Many thanks for the information - fingers crossed I'm just being paranoid and his nodes have, and will continue, to shrink 
many thanks for your help and sending you all the best 
Do call me Mike.
Since my diagnosis way back in 1999 with my CTCL…… the past 26 years have seen a significant development in treatments and has moved many types of slow growing Lymphomas into a category that is seen as a being like a chronic health condition (my Haematologist’s words not mine) that is treated when required…… my CNS describe by using diabetes as an example where a diabetic is basically n medication for life and things can go wrong rather quickly with some challenging issues……. Slow growing Lymphomas don’t behave like this…. and when treatment is required a Haematologist can dive into their box of tools to treat.
Back in 1999 the then median survival set for my CTCL was 3-5 years….. but here I am, coming up to 11 years out from my last treatment and turning 71 next month….. living a great life.
Trust the system to do its thing.
Are you in the UK Woodland90 ?
