Side effects from ARA C (Cytarabine)

jbenford
jbenford Member Posts: 4
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
My husband was diagnosed with Non Hodgkin's Burketts Like Sept. 2008. During treatment he woke up and felt like the world was spinning. He had loss of balance and he lost his ability to speak. We were told that this was side effect of ARA C (Cytarabine)and that all would go away. It is now 1 year later and things have improved somewhat, but he can only walk with a walker and still has great difficulty speaking. He has had speech and physical therapy. Docs just look at us now and have no answers. Has this happened to anyone else out there? Scans are negative but life is not so good.

Comments

  • Lia99
    Lia99 Member Posts: 1
    #2
    Burketts
    Hi Jben,

    I just joined this network. Sorry to hear about your husband. Since Burketts is pretty rare, I've not met anyone else who has had it I wanted to connect with you. I had stage four Burketts in 1996 in my late 20's; I was at Mary Hitchcock in Dartmouth New Hampshire.

    I had emergency surgery and intense chemo as well as cranial radiation (six mos. total). I had a lot of after effects from treatment, and not sure if ARA C existed back then, but I can likely look it up - I had about 20 different types of chemo, and was in the hospital nearly the entire six months.

    I was wondering what age range your husband was when he contracted the disease, and what medical center you are dealing with. I live in the bay area now and my doctors are at Stanford, I am involved in the cancer community and happy to ask around.

    Best,
    Lisa
  • jbenford
    jbenford Member Posts: 4
    #3
    Lia99 said:

    Burketts
    Hi Jben,

    I just joined this network. Sorry to hear about your husband. Since Burketts is pretty rare, I've not met anyone else who has had it I wanted to connect with you. I had stage four Burketts in 1996 in my late 20's; I was at Mary Hitchcock in Dartmouth New Hampshire.

    I had emergency surgery and intense chemo as well as cranial radiation (six mos. total). I had a lot of after effects from treatment, and not sure if ARA C existed back then, but I can likely look it up - I had about 20 different types of chemo, and was in the hospital nearly the entire six months.

    I was wondering what age range your husband was when he contracted the disease, and what medical center you are dealing with. I live in the bay area now and my doctors are at Stanford, I am involved in the cancer community and happy to ask around.

    Best,
    Lisa

    ARA C
    Hello Lisa, thanks for your interest.
    My husband is 62. An active golfer and gainfully employed. In great shape and had never even had a cold in all the years we have been married. His was Stage IV "Buekett's Like". No tumor was ever found. He presented with acute onset, became pale, started bruising, diaphoresis, and a bloody nose that would not stop bleeding. He had played 18 holes of golf and was fine 3 days before. He had had an insurance physical and a routine physical only weeks before. Labs were normal then. Bone marrow biopsy revealed mostly cancerous cells and few normal cells in the bone marrow. He started into renal failure from the cancer cells dying of at such a rapid rate (tumor lysis ) but dialysis over a period of 6 weeks saved his kidneys. Scans (PET, CT, MRI's were done and repeated and no tumor was found anywhere. Bone marrow is now clean and producing normal healthy cells. Counts are all within normal limits. THAT IS WHY IT IS SO FRUSTRATING that he had done so well with the cancer yet the side effects from the drugs have had a significant impact on our lives. We are out of Atlanta, using DeKalb medical Center, with doctors who are all out of Emory Hospital. Thank you, Jean

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