Laurasalzy's Journey:

Patient: Non-Hodgkin Lymphoma (NHL) > T-Cell Lymphoma > Peripheral T-Cell Lymphoma > Peripheral T-Cell Lymphoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 7 years ago, Female, Age: 66, Stage IV

  1. 1
    • Laurasalzy
    • Experience with Peripheral T-Cell L...
    over 4 years ago
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    Diagnosed

    Oh No

    I was running fevers daily for about 9 months and since I had undergone open heart surgery a year before, all of my doctors were thinking my new heart valve was causing the fevers. It took months before an infectious disease doctor (she was brilliant) found the abnormal lymphocytes and referred me to an oncologist/hematologist who found the markers and gave me a diagnosis that I never expected. My research of this type of Lymphoma indicated that I was one in a hundred cases ever diagnosed with a very low survival rate. No one had lived beyond five years.

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  2. 2
    • Laurasalzy
    • Experience with Peripheral T-Cell L...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I spent close to six months traveling between MD Anderson Cancer Hospital in Houston and Florida where I reside. It was the most difficult time in my life. 2-3 weeks in hospital getting chemo, 1 week in hotel room waiting for my platelets to be high enough to let me travel. Two weeks at home and back to Houston for staging to find out that the chemo did not work. We get ready for a new chemo cocktail to start as soon as my blood count will allow it. All of this is leading up to - hopefully - a stem cell transplant which is my only hope at life. After four months of chemo, my bone marrow is down to 3% T Cells and the stem cell transplant team puts me on the donor list hoping to have me at zero % when they can do the transplant. I don't tell anyone but I am scared to death at the thought of transplant. I read too much and understand what this involves. My older sister is not a match which was devastating but only 25% of siblings are a match. The team finds me a perfect match in the donor bank. I am very lucky. We schedule all pre testing so they can begin in January 2011. They tell me to plan on living in Houston for six or more months as I will have to be close to the transplant team to be monitored. I'm very sad t this but if it works, I will have my life back.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • Laurasalzy
    • Experience with Peripheral T-Cell L...
    over 4 years ago
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    Clinical Trial

    This person has yet to add any details about this experience.

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  4. 4
    • Laurasalzy
    • Experience with Peripheral T-Cell L...
    over 4 years ago
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    Other Care

    This person has yet to add any details about this experience.

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  5. 5
    • Laurasalzy
    • Experience with Peripheral T-Cell L...
    over 4 years ago
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    Whether to have surgery or not?

    Decision Point

    Okay, they say God only gives you as much as you can handle. In the last three years, I had two open heart surgeries and while recovering from the last surgery, I was diagnosed with T Cell Lymphoma. Well, I must be an amazingly strong person in God's eyes because I found out yesterday that the new heart valve they put in 3 years ago is coming loose and has to be surgically fixed ASAP. I don't know if I can go through another surgery. Being intubated and cracking your sternum was more painful than I ever imagined. And the doctor said it will be very risky because of the lymphoma. I will have to have it done in either the Cleveland Clinic, Mayo Clinic or NY Presbyterian so they can handle any complications that might arise from the Lymphoma. I feel like not doing it but they said I will not be able to breathe in six months! I am so tired of being sick.

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  6. 6
    • Laurasalzy
    • Experience with Peripheral T-Cell L...
    over 3 years ago
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    Remission

    Celebration

    Spent the week before Christmas getting CT Scan, Bone Scan and PET Scan. No sign of cancer anywhere!!! My liver showed scar tissue from where it swelled from the Hepatosplenic Lymphoma but no more cancer! Doctor said I am 1/100,000 with only 50 cases he could find and no survivors! I had the best Christmas in three years since they were spent in the hospital. He said two more years to the five year mark but he is optimistic that we beat it! God is good and it am so grateful! I can now start enjoying retirement.

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  7. 7
    • Laurasalzy
    • Experience with Peripheral T-Cell L...
    about 3 years ago
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    Hoping to pay it forward

    Milestones

    I was recently asked by Greg to participate in a research study being done on Lymphoma by a partner. I was told it would involve a one hour conference call, one on one, where I would be available to answer questions from symptoms to diagnosis, treatment options and how I got into remission after being given 8-12 months to live. What drugs, side effects, etc. I was also asked to create a brief timeline of my ups and downs during the fight of my life. First of all, the moderator was an extremely knowledgeable young man, Stephen. He listened to everything I had to say with compassion and amazement at what cancer patients do to survive. The call lasted the full hour where I relived my darkest hours but it gave me new insight as to just how lucky I am to be alive. I hope my input helped in some small way. They wanted to understand the experience from our perspective. I was very generously compensated $200 for my time and input and I plan to pay it forward. Thank you Greg, Lia and Stephen for choosing me and for all the work you do at What Next. This site has been informative, comforting and trustworthy. Thank you from the bottom of my heart. I am now a four year survivor!

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  8. 8
    • Laurasalzy
    • Experience with Peripheral T-Cell L...
    over 4 years ago
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    Low white blood cell counts (neutropenia)

    Side Effects

    Side effects were complete hair loss, mouth sores so bad that I couldn't even sip water, vomiting, weakness in legs, incontinence, fever and many more unpleasant side effects. Thank God for my husband and the many wonderful nurses and nurse aides who all took care of me at the worst time of my life.

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