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Does anyone know

Richsterr
Posts: 36
Joined: Aug 2010

Hi
Its driving me crazy but does anyone know of anyone who has survived slow growing indolent non hodgkin's lymphoma for twenty years or more.? Nobody seems to be able to give me an answer. I know its treatable but for how long? Any help would be appreciated.

Richard

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I personally do not. What I DO know is my onc has been seeing a couple, both husband and wife with lymphoma for over 15 years and has NEVER had to treat the husband yet. He has nodes that swell up and go down over months and occasionally a symptom or two but they have decided the problems were not bad enough to treat.

I find this comforting personally. I know he watches them closely and will treat when the time is right.

Check Bluerose. I think she's been surviving for many years. She was posting under the other categories I think mainly under the emotional category.

Hope this helps.
Beth

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi Rich,

I do not know of anyone. But you may be able to get a contact from the LLS (Leukemia Lymphoma Society). I'm sure they have a data base with someone they can put you in contact with.

Good luck
Take care.

miss maggie
Posts: 929
Joined: Mar 2010

Hi Richard,

If you find the info out, please post the results, thanks. Maggie

Deen1200
Posts: 1
Joined: Sep 2013

Hi

I am not quite at the 20 year mark for survival but am 17 years in remission after treatment for stage 4 Indolent NHL. To this date there has been no recurrencce of NHL and my bloodwork is coming back at very good levels. Moved from Canada to Australia 8 years ago and was nervous about follow-ups in a strange country but the Cancer Clinic has been wonderful.

Due to my long-term remission it is now possible to extend the time between visits (now at 15 month intervals) and not rely on scans for updates rather using blood tests now but, this may not be the case for those who have been recently diagnosed. I cannot stress how important it is to keep your immune system as healthy as possible. I gave up working night shifts in healthcare, exercise at a moderate level 5 days a week, eat whole foods (eliminating sugar and processed foods 75% of the time) and supplement with nutrients.

The effects of chemotherapy and radiation have an impact on organs and in a long-term survivor this means having to deal with issues that arise from organs that are functioning at a reduced level as the years pass by. After my heavy doses of chemo, I had noticeable reduced cognitive function. It was frustrating not to remember names/places and if someone asked a question, I could not answer straight away. This improved as I took courses and played games that would challenge my memory and verbal responses. Today I feel like my brain is functioning at a very normal level.

Good attitude, reduced stress, adequate rest and getting on with life's interests will help with any depression and depression can be a big component in post treatment. Wishing you all much success in your journey and treatment of Lymphoma.

Folks24
Posts: 97
Joined: Feb 2007

I have been wondering about that myself. I was getting a lot of sinus infections and my white cell count was slowly creeping up for years. My gp finally decided he wanted to find out why and I got sent to a ton of specialist before I got diagnosed with Sjogrens - which is an auto-immune disease. Thiose who have Sjogrens have a bit higher chance of getting lymphoma. I figured I had Sjogrens at least by 1998, diagnosed in 2003 and then I got lymphoma in 2012.  I did have one specialist postulate that he thought it was some kind of cancer originally in the 1990s but I wasn't sick enough. So I guess it could have been indolent and needed the "trigger"  or time to bring it to the forefront.  Frankly I don't know how that works.

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