SherrySwett's Journey with Mantle Cell Lymphoma

Survivor: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Mantle Cell Lymphoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 7 years ago, Female, Age: 74, Stage IV

  1. 1
    over 4 years ago
    SherrySwett's Avatar

    Diagnosed

    Oh No

    My family doctor had been having my blood tested every couple of weeks because my platelet levels were low. They kept going down with every test. One day I was grocery shopping when my doctor called to say "now don't get upset but you have a form of cancer that's not very bad, lymphoma" She said she would set me up with an oncologist. That Friday afternoon I called her office to check on my appointment. The receptionist asked what my diagnosis was. I told her "lymphoma" and she said "oh yes, mantle cell lymphoma". I didn't know what that was so I looked it up on my computer and was stunned with what I read, the expected survival time, that very few patients lived very long.

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  2. 2
    over 4 years ago
    SherrySwett's Avatar

    To be treated aggressively in a clinical trial at UNC at Chapel Hill, NC. If I had been treated locally it seemed like the treatments might be worse.

    Decision Point

    The first time I saw the oncologist he seemed very matter of fact, leaving no room for me to believe I might be misdiagnosed. He performed a spinal biopsy that day in his office. He called in the evening to tell me that my cancer cells were about 30%, which I thought was terrible but he said a lot of patients had 80% or 90%. He explained the options of where and how I could be treated. After a few days of study about the disease I decided to join a clinical study in Chapel Hill, NC.

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  3. 3
    over 4 years ago
    SherrySwett's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I grew very tired after each treatment but I wasn't sick.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    over 4 years ago
    SherrySwett's Avatar

    Other

    Radiation

    Had no radiation treatments.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    over 4 years ago
    SherrySwett's Avatar

    It was a certain regiment of Velcade after the normal cancer treatment was completed.

    Clinical Trial

    Patients names were put into a computer and when their time for trial the computer decided whether I would be giving 80 weeks, one treatment a week for four weeks and then four weeks off. The other option was, I believe about 30 weeks of treatments 2 weeks and then 2 weeks off. I drew the 80 week regiment.. I live 2 hours from the hospital so it was rather tiring to go back so often. After a month or so I was transferred to Wake Forest Baptist Hospital which was only one hour away and not a bad trip.

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  6. 6
    over 4 years ago
    SherrySwett's Avatar

    Chemo brain

    Side Effects

    I was extremely tired after each chemo treatment but I wasn't sick. Of course I lost my hair. After each treatment I couldn't stand the smell or taste of food. That would last about a week. Even though food didn't taste good I craved fresh strawberries or watermelon. The kitchen wouldn't send me fresh fruit but later the doctors notified the kitchen that I could have bananas and oranges so long as someone else peeled them.I had neutropenia for for a long time and I was constipated. I had to wear a mask every time I left my room.

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  7. 7
    over 4 years ago
    SherrySwett's Avatar

    Birthday

    Celebration

    I had a stem cell transplant on August 11, 2010 and the staff came into my room that morning singing happy birthday. I have been in remission since May of 2010.

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  8. 8
    over 4 years ago
    SherrySwett's Avatar

    Loss

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

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  9. 9
    over 3 years ago
    SherrySwett's Avatar

    Husband has Alzheimers.

    Other Care

    I was diagnosed with Mantle Cell Lymphoma in January 2010. I have been in remission since May 2010. I had a stem cell transplant in August 2010. After remission my adult kids told me they think my husband has Alzheimers. When they showed me the list of stages of AZ I realized he does have it. He has been diagnosed by two doctors but won't go back because he has some twisted idea that the doctors caused every bad thing that happened to him. I am having a hard time dealing with my husband's negativity in most everything, money, people, politics, etc., etc. He watches Fox News almost all day every day and complains about the world situation as a lot of people do. When he complains to me about things I do I feel very depressed and anxious. I don't know what to do. I can't make him do anything. My daughter in law and I are going to our first Alzheimer's caregiver meeting tomorrow. I'm hoping to get some relief there. I feel like a bad person because I can't stay cheerful and helpful all the time. I bite back and then hate myself for not being a better Christian. Does anybody have a similar situation?

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  10. 10
    over 4 years ago
    SherrySwett's Avatar

    Hospitalization

    Other Care

    I was hospitalized for about 8 weeks total. A few times I was hospitalized for a week at a time, then a couple of weeks and then three weeks with a stay at a hospitality house for a week before I could go home.

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