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I was diagnosed last May with stage 3A follicular NHL which they saw in my duodenum during an upper endoscopy to evaluate my reflux. Totally incidental as I had no symptoms other than the reflux. I was put on Rituxan for 6 months which didn't improve the lesions. I have just started 4 weeks of radiation so hopefully that will be more successful. Anyone taken this same path to remedy with any success?
While they experiment with these treatments, I am wondering if anyone has been guided on any diet advice. Are there foods that either aggravate or improve this condition?
Thanks for any advice or even a success story:)
Hi cdcormier and welcome to the Online Community but always sorry that folks have to find us.
I am Mike Thehighlander and I help out on our Lymphoma Forums. I did not have FL but have lived with my T-Cell NHL for over 20 years and yes I am in remission but it did take a few years to achieve this.
You will find that folks do go on rather different treatment journeys, this is normal as it is all specific to the individual but let’s look for some of the FL folks to cone along and support you.
As for diet, my team including my dietitian basicly said follow a good balanced diet, no junk food but all home made. Keep away from takeaways and control my alcohol intake. So lots of fruit and vegetables, control the intake of red meat, have fish 2-3 times a week and drink 2-3lt of water every day.
It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.
Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)
We are always around to help out.
Mike - Thehighlander
Some journeys take us far from home...... but some adventures lead us to our destiny - CS Lewis
Like you I was incidentally diagnosed with follicular lymphoma in my duodenum during an endoscopy for my acid reflux which is unconnected, as I have a hiatus hernia as is common with people who have acid reflux. This was back in August 2011 and I have been on watch and wait without treatment ever since and my lymphoma has waxed and wained and been stable for some years and I am still very well. I now have just annual check ups.
In 2016 duodenal follicular lymphoma was recognised by the World Health Organisation as a distinct subset following a much more indolent path than the usual nodal variant and watch and wait is recommended as the best approach.
I am surprised that radiotherapy has been suggested because of the risks involved in radiating an area that generally does not lend itself well to radiation treatment and the fact that as stage3a you are past the option of treatment with curative intent. Unless you are at risk of obstruction, which is unlikely with this indolent variant.
Just to add that I have made no dietery or lifestyle changes.
Thanks Mike. I just happened upon yours and other replies in my spam folder, thus the latent response. Appreciate the answer and tip on updating profile. Good luck with your journey.
After my FL diagnose I went nuts on the internet, looking for something to do instead of just wait the next return. It is a mess all the info about cancer and diet. Lots of patient swears they were save by a strict diet. I made a list of all the restriction that I found, excluded the unreasonable and decided to take out alcohol, simple sugar, takeout food and try to avoid glyphosate from my diet. I added vitamin D. Nothing of that helped since my FL is back just 8 month after my chemo. Anyway it makes sense to cut sugar and inflammatory food, because white cells are sensible to them. My digestive tract was all highly inflamed, the upper part due to stress of course. https://lymphomasurvival.com/ has lots of info about diet, but it is not a medical authority, just a survivor experience.
For the last 5+ years I've been on a pregnant womens diet, which was recommended, but I've enjoyed it so don't see a point in changing it. The only other thing thats not changed is my love of wine and I've never been told to stop even when i got my folicular lymphoma. I'd say at a guess eat sensibly and across all foods and it'll work, but I'm no expert!
In the end, it's not the years in your life that count. It's the life in your years. Abraham Lincoln
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