Dad was diagnosed today

Hi Bostonlovr and a warm welcome to this corner of the Community although always sorry to see folks joining us and so sorry to hear about your dad's diagnosis. I am Mike (Thehighlander) and I help out around our various Lymphoma groups.

I don’t have Follicular Lymphoma (FL) but was diagnosed in 1999 with a rare, incurable but treatable Low Grade NHL Stage 4a (CTCL) so although my Lymphoma ‘type’ is different I understand this journey rather well.

The treatments used of Low Grade NHL's like FL are very effective, yes some are full on at times but all do-able. FL is one of the most common Low Grade Slow Growing types of NHL and this results in a long history of developments in treatments.

Like my type of Low Grade NHL your dad's Follicular Lymphoma is incurable...... but the positive thing is it's very treatable and people live full and happy lives along with their FL.

When you say he is getting Rib do you mean Rituximab? Rituximab belongs to a group of targeted therapy drugs called monoclonal antibodies. These drugs are sometimes called targeted (biological) therapies. They work by ‘targeting’ specific proteins (receptors) on the surface of cells - these drugs are not chemotherapy so yes, what you have been told is correct. I had Rituximab as part of my treatment and had no real issues with it but just going to hospital and having regular treatment can bring on Fatigue. How old is your dad?...... this can be a factor if he is older as the fatigue could be worse.

The two years of Maintenance Treatments are straightforward and are designed to keep his condition under control.

There is a chance that he may have allergic reactions to these drugs but they tend to take their time on the first infusion and look out for any reactions and have lots of tools to overcome this.

For good information do check out Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Online Lymphoma Online Support Groups and indeed a very great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

The group is always around to help more or just to chat

Hi Bostonlovr

I was diagnosed in October last year with Follicular  non-hodgkins lymphoma stage 3. I will be starting my immunotherapy with Rituximab soon in exactly the same way and was told it helps stave off the need for chemo for up to 2 years. As it is indolent or slow growing chemo won't achieve anything unless there is a change and symptoms.

Please take advice from Mike who has a wealth of knowledge on the complexities of lymphoma. The Lymphoma Action website really is informative and the members very supportive.

Hopefully the treatment will go smoothly. Sending supportive hugs x

I did chemo proper and now doing the rituximab for two years thing. I've done three so far. No real side effects but it wipes out the immune system so makes us very vulnerable to infections including covid, so take extra care.

Thank you so much!!  Hope your treatment(s) are working well for you!

Thank you very much!  I will heed your advice. Best wishes to you in your journey. Thanks again!

Thank you so very much for all of the valuable information. Dad is a healthy and active 89 years old. 

Hi Bostonlovr,

I had a stage 4A indolent follicular lymphoma in 2019, treated by Ritux and bendamustine and can vouch for the effectiveness. I'm nearly 3 years post diagnosis and have had no apparent recurrence.  They do monitor me every 3 months.  The infection risk with treatment is   very real - I'm still a bit compromised, but I feel normal for my age.  I haven't had any serious infection needing treatment for 2 years. 

Side effcts were mostly just tiredness, although I am allergic to rituximab and needed my allergies controlled with drugs every time I had it.   They gave my a really effective anti nausea capsule to take before treatments, and I was told this single dose would last for 5 days.  I never felt sick at any time and never saw anyone else doing so either. 

I hope your father's treatment goes smoothly into remission.

Cecren