I was diagnosed in July of 2015 with Low Grade Follicular Lymphoma. I had one node which was surgically removed. I am stage 1 Grade 1. I am in watch and wait. I wish there was some treatment that could cure this since I am in a low level but my oncologists says there is not.
Although I am fine it is hard to live with this but I am doing a good job of it with the grace of God and Science.
I was diagnosed with Stage 1 NHL Follicular Low Grade. Did 6 months of Rituxin and Treinda and will complete two years of maintenance Rituxin next month.
My doctors says there is no treatment for me at this time which I don't understand...
My node was removed...
I am in a similar position. I had one node removed for biopsy in 2014 which proved positive for FNHL. Since then I have one new node which so far is not growing and is in the same area. I was offered radiotherapy for this but declined to have it - a personal decision, not recommending that anyone else does the same. I do everything humanly possible to support my health, because that's what I can control. The rest I cannot control and I am living a day at a time with it. The couple of weeks pre checkup are probably the hardest. I find mindfulness helpful and plenty of healthy exercise.
what was your grade and stage?
No idea as I wasn't informed but I had a Pet CT scan after the original surgery and nothing else was found at that time. Some months later a second node appeared and that has remained stable. Checkups every 4 mths.
I am one year no activity check up every 3 months
isn't this horrible to live like this...but never had any treatment
says I can go decades without activity...I hope so.
It's a completely new way of life, that's for sure. Sometimes it gets me down, but generally I treat each new day as a challenge to stay well. I've done some online courses in nutrition and swim three times a week as well as other exercise - things I never did before. I'm probably fitter than I was 30 years ago. Let's hope we all have many years of remission
YES.. I TOO HAve changed many things.
there are these green tablets
called 8 G, woman who invented them had stage 3 NHL...did not do chemo went into remission
Tell me about the tablets you are taking? I would like to research them. As for stage you can google how the staging is isentified. One node typically is stage 1. If nodes are found above and below the diaphragm it is stage 3 or 4. I am watch &await as well with stage 3 Follicular Lymphoma.
They are called 8 G....and they are fizzy.
she had stage 3 lymphoma and could not get chemo because of some infection and she was cured.
they are sold by Nordstrom..
look up her story...
did you have any treatment?
No treatment thus far (Watch & Wait). My oncologist says he will restage me in Dec when I have a CT.
How do I find your friend's story?
Thanks!
josie2rulrd. I found the story. Apparently the pill is made with intense green vegetables.
yes drinking it now...tastes good....
Im only taking one a day so expensive...
the woman took 3 a day to fight her lymphoma
I feel the same hopefully we can go years
you are not alone we are all in this together
I too have stage 1 grade 1 NHL follicular and finding watch and wait hard to digest, i was diagnosed in november and worried about the not curable bit hard. how long have you had it ?
I can only imagine how difficult W&W must be for you. I recently had Chemo & Radiation for my Follicular Lymphoma and I await my final scan this upcoming May 15.
I was oblivious to my condition and after many, many, many years it was time to deal with what I learned was FNHL. The advantage you have is that with each and every day/week/month/year that you wait, better and less harsh solutions are being developed. My MD said that they are doing things today they had no clue about just a few years ago!
Both of my HemOncs say that when this returns, and they both say it will be 10+ YEARS, that by that time the solution will be Gene therapy vs. Chemotherapy.
Medicine is not an exact science and there are ofttimes no clear cut solutions. I am eternally grateful for all those that have come before me and had to endure the solutions of their time to make the improvements in my time.
For me, Forever Relying on God (FROG) and actively practicing patience through my Faith helps.
I hope and pray that whatever you do to focus on the positive is successful for you as you look to the future and continue to live with FNHL.
Blessings and Happy Spring! 💐🌸🐣🌞
CT scan scheduled
Malt Lymphoma
Newly diagnosed NHL - Immunophenotype indicating MZL /LPL type
Dexamethasone steroids and bendamustine chemotherapy 