low grade nhl

Hi i was diagnosed last october with low grade nhl i had a bone marrow biopsy and ct scan last november, my bone marrow fluid is fine i have small traces in my bone marrow but was told thats common in newly diagnosed people, it was the best pre xmas presen i could have had. I have CLL i went this march for a check up and i go again tomorrow 20th june. I feel fine and am active, people ask me how i feel on watch and wait and i say fine and theres no point in treating me til i need it, ive been asked how i feel living with cancer, i tell them im not living with cancer til i need treatment, im keeping active and positive and living my life, i got past the negative thoughts, i have brilliant positive friends and family. Sparkygirl


  • miss maggie
    miss maggie Member Posts: 929

    Welcome to our site. As everyone will tell you, you've come to the right place.

    Even though my DX is different than yours, I am sure there are others on this site
    who will be able to tell you their story, and treatment.

    I am so glad to read how you are coping with your DX. That's 3/4 of the battle. I too
    was DX In Sept 2009 with low grade, stage 1, but NHL, not CLL. I had a BMB in Oct 2009,
    and was negative for active fluid (this is the first time I heard about tests in
    the fluid in the bone marrow. Also, negative for any other activity.

    My small bowel perforated in Sept 2009, and had an operation to resect. When they
    operated, the surgeon cleaned out the surrounding area. My small bowel perforated because
    of NHL. I only had treatment of Rituxan in Dec 2009, once weekly for 4 weeks. Just
    as a precaution. My oncologist has me on a wait and see also. My last 2 Pet Scans have
    been negative for cancer. I also had a colonscopy in June 2010, negative. I will have
    another in Sept 2011. I was DX in remission Jan 2011. I will be seeing my oncologist
    again in Sept 2011, perhaps another Pet Scan.

    What happened that you were DX with CLL?

    I am sending you the very best, and continue to be positive in your everyday life.

    Love Maggie
  • She514
    She514 Member Posts: 47
    Me too
    Hi Sparkygirl
    I also was diagnosed with low grade NHL, though stage 3,(two or more lymph node regions above and below the diaphragm), no symptoms. My lymphadenopathy was found on a CT scan done for appendicitis in January 2011. After months of tests and monitoring the doctors said the core needle biopsy showed probable CLL. And they wanted to do a node biopsy. Medical oncologist states the node biopsy will not change the current treatment of watch and wait, just give him a subtype as he is not convinced it's CLL. Since watch and wait will continue to be the treatment regardless of the subtype I opted out of the node biopsy. Maybe I'll do it at a later date, just know I don't want it done this year if it's not necessary. I'm active, positive and enjoying life. The only change I've done since January is to eat healthier. We'll see how long I can keep the crud at bay!

    Good Luck tomorrow at your appt! I go back the beginning of August.