Advice please!

Hi ZoeT and a warm welcome to the Community and sorry to hear you are riding the Lymphoma rollercoaster.

I am Mike and I help out around our various Lymphoma groups. 

You have done very well to have been living on Active Monitoring (Watch and Wait) with your  Follicular Lymphoma for 9 years and not started any treatments.

I can understand the challenges of living with a Low-grade non-Hodgkin lymphoma like your FNHL as I was first diagnosed way back in 1999 at 44 with my rare (8 in a million) ‘incurable’ but treatable type of slow growing Low-Grade Cutaneous T-Cell NHL (CTCL) 

I had no B symptoms and continued to live a normal-ish life working in a demanding teaching job on a full timetable for 12 years until I retire in mid 2011……

But the main difference between your FNHL and my CTCL is I could actually ‘see’ my Lymphoma growing as it was ‘on’ my skin…. at times my body was 70% covered in various sizes of tumours so I did have to have various treatments to help control the progression and basically allow me to live, not looking like I had Leprosy….!!!!

I did not need full on treatments like chemo etc as the regular skin treatments like UV and immunotherapy did a great job for 14+ years.

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting and had to be treated immediately.

Du to me having to be treated for 2 rare T-Cell NHLs at the same time my main treatment journey was from Sep 2013 to Oct 2015 it was all rather complicated (See my story) but I am over 10 years out from my last treatment, I turned 70 last Nov and I doing great.

Hearing stories like yourself often makes me think….. based on my ‘visible Lymphoma…. what an ‘invisible’ lymphoma is actually doing during Active Monitoring (Watch and Wait).

I am sure that your clinical team have a good reason to be suggesting…… even recommended treatment based on their assessment of how your FNHL may be progressing.

There are a number of levels of treatment fir FNHL only used at various points of progression… so the question you need to ask/consider is the proposed R-CVP now stronger than the treatment they may have recommended 3 years ago?

As for treatment side effects…… we could line up 10 people on the same treatment for the same NHL and 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.

I had the big brother of many of the regimes like R-CVP.

My 6 cycles of R-EPOCH between Dec 2013 to April 2014 and me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each cycle........ and honestly I did well during it all….. yes some developing fatigue, I was only sick once but that was down to a bad food choice on my part….. and I had no infections.

You will see from (See my story) I had to have other treatments (45 radiotherapy zaps and 2 Allograft (donor l) Stem Cell Transplants and even during all that 2+ years I had no infections and that was me having a significantly prolonged reduced immune system.

It’s all about making informed choices….. but sometimes things change quick and the ability to make a choice is taken out of your hands.

In Oct 2013 I was having radiotherapy for a tennis ball surface tumour on my forehead…,,,, within a few weeks a node on the side of my neck started to grow….. it took until a week before Christmas that year for all the tests and biopsies to be done and this was when I found out I had a second T-Cell.

The mass in my neck was basically the size of a brick 21cm x 10cm x 6cm. By the time I went for my first blast of chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and were coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was being restricted and the pain was off the scale.

I had an initial 15min blast of Vincristine and It was amazing the difference that first a Chemo blast made. Over that first night the staff kept coming into my room to look in my mouth as my teeth were slowly re-appearing to the point I actually had breakfast including toast that morning. A few days later I sat with the family and had some Christmas dinner…… a few days later I started my main chemo.

I have said enough……. always around to chat ((hugs)) 

Hi ZoeT

i have FNHL I was diagnosed in 2024 and was put on watch and wait. Last year it had spread to my sinus and put on R-CVP chemo therapy last October and today is my last treatment.  Everyone is different for the symptoms and I think I have it smoother than some people though it has not been plain sailing. 
ny hospital kept mein for the first treatment as there can be an allergic reaction  to the drug (R).   Which they monitor and gave me antihistamines. 
in a whole normal symptoms for me, sickness, sleepless nights and sore mouth (toothache feeling no ulcers) for the first 7 days but the killer for me was the tiredness as I am always active. And my hair had thinned. Please note that everyone will have the same reaction to the chemo. 

My tumours (I have four around the body) have shrunk not disappeared but I am better and so glad it is over after today session.  I will get another CT scan in a few weeks then I am to start immunotherapy which is for two years so that will help. 

during the time I have caught a couple of viruses nothing major it was just a bigger hit for me. But the hospital was great and got antibiotics. I try to keep away from sick people and always washing hands etc. 

it is a hard decision to go for chemo but I felt the benefits  was greater than the side effects of the tumour in the sinus area. My approach was taking one day at a time and listening to my body when I needed more rest etc. 

good luck for what you decide and message if you have any questions 

louise 

Hi and thankyou for your input. I hope you are doing ok now. I am just conflicted as to what to do.

Hi. Thank you for your response. I bet you're so relieved your treatment is over. I am scared but I'm trying to make the right decision for me. I will know better when I have had my CT scan. I hope you get a full response eventually from your treatment. Thank you for the information. 

The CT results may take the decision out of your hands. 

I am doing great….. especially in light of when I was first diagnosed back in 1999 I was told that the median survival for my first type of NHL was set at 3-5 years…… well that was out by 22 to 20 years ;) 

Hi Zoe firstly way to go on going this long on watch and see! I was diagnosed with fnhl back in February 25 I had no symptoms mine come about by a rather unfortunate bout of incontinence that happened in August of 24 (happened once and left me totally mortified!)I started chemo straight away as pet scan showed it was compacting the tube from my kidney to uretha.as mike (a top top fella with such great advice and knowledge) has said people react soo different for me I had zero side effects apart from fatigue,I had 7 months of chemo and now on two years maintenance an infusion once every 2 months.my opinion for what it's worth is there must be a valid reason to recommend it's not something they would take lightly take care Chicky 

Thank you for responding. Did the chemo put you in remission? 

Hi ZoeT

when I asked about remission at the hospital. They told me it is not like other cancer. The FNHL is not curable the chemo is to slow it down and stop it spreading. I will never be in remission so after the chemo and going through immunotherapy I will be back on wait and watch. 

louise 

1. Yes  as such as it's not curable you always have it but it's soo slow growing ,you will probably know half a dozen people that have this condition and don't know and go there whole life blissfully unaware! my bloods are all normal now just have the bendamitusen (that's spelt wrong lol) infusion every 2 months as maintenance 3 down 9 to go then after that it's a once a year checkup x