Stage 4 follicular lymphoma

Hi Godfrey and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your husbands FL diagnosis. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Follicular Lymphoma (FL)......... 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 (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 - Not Otherwise Specified 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.

These early days are challenging as it's all about the 'unknowns'........ but the noise between your ears will slowly calm down as you slowly understand this 'type' of cancer.

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers)...... there are actually over 60 types and sub-types of Lymphoma...... but one treatment approach does not fit all Lymphoma types.

Your husbands FL is the most common type of slow growing Low-grade non-Hodgkin lymphoma....... and although, like my type of Low-Grade NHL it is still seen as incurable...... it is very treatable as and when required.........

My consultant said the most Low-Grade NHLs need to be seen in the same light as a chronic health condition like say type 2 diabetes...... the main difference being that unlike type 2 diabetes where you are on a lifetime of treatment....... with Lymphoma it's not the case as it is only treated as and when required...... with most people going on and living a normal-ish life.

As for the Staging in Lymphoma..... it is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like say stage 4 is a poor prognosis, in Lymphoma it’s not.

I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas basically identifies:

   1) Where the Lymphoma is presenting in the body (it can be anywhere).

   2) What is the best treatment approach and best treatment type for your presentation.

   3) How long your treatment needs to be.

What is the 'exact' name of the treatment he is having?....... there are a few.

I have had a number of treatments over my 25 years but if we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.

My great CNS (Cancer Nurse Specialist) initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

My main treatment regime was called R-EPOCH, I had this back in late 2013/2014 and yes it was full on but honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment.

Here are a few links that will help you and your husband get ready for treatment.....

     Top tips for the day of your chemotherapy

     Top tips for family, friends and carers

I am sure that you will have some specific questions so do ask them..... but I would like to plant a seed of encouragement.......

When I was first diagnosed in 1999 I was 44 and our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years then in late 2013 I had to have full on treatment......... But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in Nov and am now 3 months away since my last treatment 9 years back and we continue to look forward to what else life has in store for us to enjoy ((hugs))

Hi Godfrey

I'm a bit further down the track than your husband. Got diagnosed with stage 4 FL just over a year ago. Had to start chemo in Jan of this year and have completed 6 cycles. Now into maintenance treatments. 

It's still all very surreal to me as I was feeling pretty well up to and through the chemo. There were some scary moments and periods when I felt pretty rubbish. But the drugs regime is very well targeted for FL and the results were encouraging with minimal side effects.

That said, there is a mental tole that you pay going into treatment. You need to get your head around words like palliative care and non-curable. You need to focus on words like treatable instead. Just be patient with hubby and remember he's trying to process this. There will be mood swings and quiet spells. My wife tried to get me to open up at the start. I wasn't ready for that. It's easier now and we've learned that sometimes just sitting together without talking about "serious stuff" is the best communication. 

Happy to chat if you have any questions or worries

Regards, Cormac 

Thank you , this really helps  

I know it’s very early days for us so will be a learning curve. 
hope all good for you with the maintenance  and you continue to feel well. 

Thank you . This helps to put everything in perspective and to know there is life at the end of treatment xx

continue to enjoy what life has in store x

Do you actually know the treatment he going to have as this information will help group members give their first hand experience being on the same treatment.