Hi Everyone
Hope your cancer journey is made easy for you. My Other Half is due to start chemo for follicular lymphoma in St George's, London, in a few days, I'm joining this group as I feel like I don't know what I don't know and other people's experiences might bring up things I haven't thought of.
We have done a fair bit of research online into complementary treatments and it seems like these help every other cancer but not lymphoma. We're inundated with supplements and keto-ing and alkalising (which don't seem very compatible) but the plus side is that he has lost a fair bit of weight (definitely due to the diet and not the lymphoma).
That's a long hello so I'll leave it there 
Hi OnlyMe and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your other half’s diagnosis.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma 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 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.
Follicular Lymphoma (FL) is the most common type of slow growing Low-grade non-Hodgkin lymphoma……. the advantage in this is there are many effective treatments as and when required.
FL like many low-grade NHLs are seen as life long conditions.
My Haematologist described low-grade Lymphomas as a chronic health condition…… he went on to say “…Mike think of someone with say diabetes, this is a life long chronic health condition…… but the main difference between your Lymphoma and diabetes is that you will have treatment as and when it’s required unlike someone with diabetes who are on treatment for life….. and fir them things can go wrong quickly with challenging results…… in low-grade NHLs it just not the case”
As for complementary treatments?….. in blood cancers like Lymphoma this is one big chemistry exercise…… as in reality this is not a sold tumour cancer…… it’s a collection Lymphoma cells getting together and having a party.
So the treatments used are very specific for the condition and any outside complementary treatments could well topple the chemical balance reducing the effectiveness of the treatments,
As for the treatment journey?.... 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 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 6 cycles of R-EPOCH back in late 2013/2014 and 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........
My story is rather complicated See my story as I had to go onto have significant treatments mainly due to me developing a second more aggressive type of T-Cell NHL in late 2013……….. but I am over 9.5 years out from my last treatment, I turn 70 this year and I doing great.
My main mass was in my neck and it 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 we're 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.
Unless he has a lot of weight to shed just be carful as I lost 27kgs during my treatments
You may find the link below helpful as you get him ready for his treatment…,
Top tips for the day of your chemotherapy
Top tips for family, friends and carers
Where is his FL presenting in your body?
Do you know the exact name of his treatment?
Always around to chat and answer questions as best as I can
