Watch and Wait - LGFL

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.

10 Replies

  • 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...

  • did you have any symptoms?

    where ws your node?

  • 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

  • you are not alone we are all in this together