looking for non hodgkins relapse stories

alclmom
alclmom Member Posts: 7
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
i recently had a 100% clean 3month post chemo pet scan. I want to be excited but i am having a lot of survivorship issues.. please share your relapse stories with me. i feel like my doctors live in a fairly tale worlds sometimes and i would love to here realty! please share age, type and treatment options.....thanks so much

Comments

  • WinneyPooh
    WinneyPooh Member Posts: 318
    #2
    10 years no cancers
    Hi, I am on another site but i was 10 years cancer free, i had non-hL, when i was 34 and it was stage IV i was basically dead when they found it only 10% of my left lung was usable and i maynot have made it through the night, but i went to the hospital because i stoped breathing and they found the cancer then and they cured me a year later.

    Now for the unfortunate part, I was DX with Colon Rectal Cancer in may of last year, Doc say it is unrelated but it is a new cancer and i hope to i will beat this one. Good luck and live well, go vegan if you can stay active and keep your weight under control is my advice to you. maybe if i had done the same i would not be here with a new cancer.

    Live, Laugh, Love
    Penny
  • Joseph777
    Joseph777 Member Posts: 2
    #3
    I was diagnosed with myelofibrosis in the spring of 09. I have had non-hodgkins lymphoma twice. Once it was low grade and the remission lasted 9 years. I then was diagnosed with non-hodgkins, but it was both low and high grade at the same time. After many rounds of chemo, radiation, and a stem-cell transplant I was fine for about 8 years. That is when I was diagnosed with the myelofibrosis. They have tried just about everything with no success. Revlimid (sp?) was the last. It has gotten to the point where I have to go in approximately every 4-5 days to get two pints of blood and two pints of platelets and neupogen shots. However, now it has gotten to where I am experiencing symptoms within two days. Has anyone experienced this before?
  • DennisR
    DennisR Member Posts: 148
    #4
    I had NHL in 2000, had
    I had NHL in 2000, had surgery & RCHOP and was NED until May, 2008 when I was Dxd with a recurrance. I had Chemo and a stem cell transplant in feb 2009. I'm NED now again and doing well.
  • Karen Sullens
    Karen Sullens Member Posts: 3
    #5
    Non Hodgkins morphed into Lympocytic Leukima
    I find thay my cancer has been an ongoing subject. First was Breast Cancer and then the next year they found Lymphoma in my uterus(unheard of by the way). And here I am now with Lymphocytic Leukima.

    I have been on periodic treatments with Retuxin. I have had it 4 times now and each time give me a year or two. This time I am over a year and feel pretty good. I know my condition is Chronic, which is on going, and that the deal. Karen

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