Whether to try more chemo or not - Laurasalzy

Decision Point Associated with Non-Hodgkin Lymphoma (NHL). Posted on September 7, 2012 View this journey (2 Experiences)

I never did get my stem cell transplant because tests showed an electrical problem in my right ventricle which totally disqualified me for transplant. I am devastated because the only survivors of this particular Lymphoma (Hepatosplenic T cell NHL which affects the liver and spleen) were given the transplant. We leave Houston and return home to Florida. I feel as if the last year of chemo, transfusions, painful bone marrow biopsies, CT Scans, PET Scans, echocardiograms, etc. were for nothing because I am no better off now than I was at diagnosis. How did I get this disease? I am not your typical patient of T Cell NHL which is young males or people of Asian descent. I am neither. We are thinking it may be environmental. I worked at ground zero in 2011 and breathed in a lot of toxins.
MD Anderson suggests I try a last ditch treatment which would give me more time. It is an injection of a drug called Folyton and it nearly killed me. The first injection was no problem. I was to be given an injection every two weeks for six injections. The second shot was my last. My mouth filled with sores so bad that I couldn't talk. My husband found me bleeding from my mouth and nose in bed and nearly dead. I was admitted to the hospital but only to be made comfortable. My platelet count was at 7. Normal platelets are between 140,000 and 400,000. I was near death. I couldn't pull myself up in the bed, couldn't drink or eat with the mouth sores and my legs wouldn't let me walk anymore.

My sister is a retired nurse and when she arrived at the hospital, she took me home and called Hospice. She was my miracle because she fed me and forced me to get stronger and I'm here today because of her. Hospice was wonderful and I had them take care of me for about 15 months but they just discharged me because they told me hospice care is only for people with less than six months to live. Wow! I am now a cancer survivor. My doctor is amazed because he has never seen this kind of spontaneous remission. Nobody knows how long this will last but i'm taking one day at a time and love my life and my family so much. All me dear friends flew from all over the country to say goodbye but I fooled them all. They too are very happy. My husband has been the most amazing caretaker.

1 Comment
  • Laurasalzy's Avatar

    Oops. I meant to say I worked at Ground Zero on 9-11-2001 not 2011. NYC was smoldering with a horrible smell in the air for months later. My husband swears this is why I got sick. Hugs to all! Stay strong and my prayers are with you all.

    about 8 years ago

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