Need Non-Hodgkin's Survivors

wallpa
wallpa Member Posts: 22
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I was diagnosed with Stage IVA follicular large/small cell NHL which JUST started to spread to my intestines when we found it.

I just finished chemo (CHOP & Rituxan) and have some MRIs next week and a trip to the doc on Thurs. There may be radiation involved, I'm not sure. I'll find out Thurs.

I need info from NHL survivors who have been in remission for a goodly amount of time. What did you do to stay in remission? Exercise? Camp? Eat tofu?

I don't know what I'm supposed to do next. Before I was diagnosed, I was pretty healthy, if overweight. I rarely got sick. I never took more than one sick-day a year. I ate fruits and vegetables and exercised and took antioxidant vitamins and drank green tea and had parents in their 80's. I thought I was free and clear.

Should I change how I was living or go back to it? I think I should change, because I obviously was doing SOMETHING wrong, wasn't I?

Or am I trying to control my life too much?

Yikes!

patty

Comments

  • joanarc
    joanarc Member Posts: 2
    #2
    Hello Patty. My name is Miriam and I am a survivor of NHL for 4 1/2 years. I was diagnosed with stage 4 and I was given a poor prognosis. I was diagnosed in Oct. 1997 with large B-Cell NHL. My treatmenst consisted of 8cycles of CHOP, then 4 Cycles of DICE, 8 treatments of Rituxan and other combinations thereof.
    I am now in remission for two years and I just want to reply to questions about you can do differently. I don't think that changing your way of eating should change because I too ate well and exercised regularly. The most important thing is to stay positive and focused, which at times can be hard to do, and continue to share your story on-line so that you can find out more information about new treatments.
    During my treatments, I tried to remain positive. I never gave up and my faith in God continued to grow each day.
  • cjam
    cjam Member Posts: 2
    #3
    Hi Patty! My name is Carrie and I am 28 years old. I was diagnosed with NHL 12 years ago and have been in remission for almost 12 years. I don't think you were doing anything wrong. I was an athelete in high school and rarely got sick before I was diagnosed. It sounds like you were leading a healthy life before and I think you should stick with it. I have just tried to lead a normal life, I eat fairly healthy and exercise a few days a week. I am not a fanatic by any means because even the "healthiest" of people get struck with this terrible disease. Hang in there and keep up the positive attitude!
  • coondog
    coondog Member Posts: 9
    #4
    Patty, Diagnosed 2 years agao with NHL. Same tx as you are having/had. Like everyone else has told you, attitude and outlook is everything. Do what makes you feel good about yourself. Don't worry too much about what you eat etc. Keep a positive attitude!! And yes, I know it gets damn hard at times. But I am here and so are many survivors. View it as a temporary obstacle. Good luck!!
  • eggman
    eggman Member Posts: 1
    #5
    I'VE BEEN IN REMISSION FOR 3 YEARS NOW AFTER CHEMO FULL BODY RADIATION AND STEM CELL TRANSPLANT. I HAVEN'T CHANGED MY LIFE STYLE HARDLY AT ALL OTHER THAN A GREATER APPRECIATION OF STILL BEING ALIVE
  • stronglikebull
    stronglikebull Member Posts: 2
    #6
    Patty, I was stage III in 1994. I have large cell follicular(which makes me a hybrid- you're usually either small follicular or large diffuse). Don't assume you did anything wrong or ate the wrong things. Keep exercising if you're up to it. Quit when your body says it's too much. You'll have to experiment a little with what you can eat. I found I was able to eat a lot of foods that some people can't(like coffee, Chinese food, even chili!). Everybody's different and tolerate different foods. Steamed veggies are good because most of the vitamins are retained, boiled veggies lose the vitamins.You don't have to make radical changes.

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