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Thread: Significant Other has Adult T-Cell ALL

  1. #1
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    Exclamation Significant Other has Adult T-Cell ALL

    The love of my life was diagnosed with T-Cell ALL in January 2011. He is 34. He had been complaining of back pain, and later throat pain. When is lymph nodes in his neck began to swell, I talked him into going to the local stat care. They did a blood draw and sent him home with an antibiotic. They called back early the next morning, saying that his WBC was too high and that he needed to go to the emergency room immediately.

    After staying in our local hospital for a week, they did a bone marrow biopsy and sent him to a larger hospital for them to figure it out. We found out 2 days after the biopsy that he has T-Cell ALL.

    They began treating him with Modified Larsons Chemo regimen, consisting of (pardon the spelling) vincristine, asparaginase, and daunorubicin. He had got a blood infection, putting him in ICU for a 3 days. Then had an allergic reaction to the asparaginase, causing pancreatitis. Even with minor set backs, this did put him into remission, with 0% Blasts in the blood, and we were able to leave the hospital after 25 days.

    He continued outpatient chemo from February 2011 until June 2011, with combinations of cytarabine, daunorubicin, vinecristine, and methotrexate. We went for routine lab work and to start his new round of chemo the end of June 2011, and to our surprise, the WBC was 147,000. His cancer had came back.

    He went straight from the outpatient building, to the main hospital, and they started him on high doses of Cytarabine, twice a day for 6 days. His WBC dropped really fast, but the blasts were going up (91%). They started him on Nelarabine, a relatively new chemo drug, on July 15, 2011. His WBC was 1.33 when they started the Nelarabine, and as of July 22, 2011, they are at 1.88. Blasts are down to 48%. The doctors are concerned because the white blood cells are coming up a little bit, but told us to wait a few more days to see what they do.

    We are both really scared that this chemo isn't going to work either, and according to the doctors, this is the last chemo they can give him. Told us they are "out of options". We cannot believe this. Other than the Leukemia, he is a health guy. He is still eating, walking, dressing, etc... all by himself. His heart, liver, lungs, kidneys, are all still functioning perfectly normal. Why is it that they are going to give up on him?

    They told us he needs a bone marrow transplant, but if his cancer does not go into remission, then he can't have a transplant. It would be pointless to do the transplant if the cancer is still there. I find it hard to believe there isn't more chemo, or even radiation that they could try to get him into remission. We have only been battling this for 6 months. His body is not worn out yet! I feel like they are giving up on him too soon, and he is still so young. I don't know what to do, where to look or tell someone about his case. If we have to go to another hospital, we will. We are not ready to give up, even though the doctors seem like they are ready.

    Any one went through something similar? Any suggestions? I am going mad researching hospitals, doctors, etc... all leading us with more questions. I need help, like yesterday.

  2. #2
    Quote Originally Posted by sassi86 View Post
    .........We are both really scared that this chemo isn't going to work either, and according to the doctors, this is the last chemo they can give him. Told us they are "out of options". We cannot believe this. Other than the Leukemia, he is a health guy. He is still eating, walking, dressing, etc... all by himself. His heart, liver, lungs, kidneys, are all still functioning perfectly normal. Why is it that they are going to give up on him?

    If we have They told us he needs a bone marrow transplant, but if his cancer does not go into remission, then he can't have a transplant. It would be pointless to do the transplant if the cancer is still there. I find it hard to believe there isn't more chemo, or even radiation that they could try to get him into remission. We have only been battling this for 6 months. His body is not worn out yet! I feel like they are giving up on him too soon, and he is still so young. I don't know what to do, where to look or tell someone about his case. to go to another hospital, we will. We are not ready to give up, even though the doctors seem like they are ready.
    This is a tough one. I feel for you. I am in UCSF for a transplant caused by ALL right now, and they are right. Remember that part of the transplant protocol is to give him three drugs, including chemo, to completely kill the immune system, bone marrow and cancer cells, if any. Then the transplant will (hopefully) rebuild a new, working system and (hopefully) it never comes back. No offense meant to anyone you are working with, but I'd get a second opinion from a highly rated hematology (teaching) hospital in your area, especially one that works on blood Cancer. You may already be doing this. You're not the patient, you're the customer. Check around before giving up. We are all pulling for you.

    Chuck
    Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
    Remission, July 2010, Diagnosed with MDS in Jan. 2011
    Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
    =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=
    Cancer might rob you of that blissful ignorance that once
    led you to believe that tomorrow stretched forever.
    In exchange you are granted the vision to see each today
    as precious, a gift to be used wisely and richly. (UCSF 11 Long)

  3. #3
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    Thank you for your reply. We are at the Cleveland Clinic which is one of the top hospitals in the world (#4 I think?). It is a teaching hospital too. We are staying here on the floor specifically for Leukemia, Lymphoma, and BMT. I think it is a matter of insurance, which he can not afford to get. I think I need to do some more research on financial assistance or start asking people (family, friends) for help. Maybe if the insurance thing isn't an issue, the tune would change? Here is hoping. I will try anything I can to help save his life.

  4. #4
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    Hello my signifcant other was diagnosed with the same type of ALL last month. Would like to keep in contact with you.
    Last edited by ChemoMan; 09-26-2011 at 08:50 AM. Reason: Editing of personal information privacy concern.

  5. #5
    Administrator Top User ChemoMan's Avatar
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    Quote Originally Posted by kelseym89 View Post
    Hello my signifcant other was diagnosed with the same type of ALL last month. Would like to keep in contact with you... my email is [email protected] <3
    Hi kelseym89

    The best way to contact people is through this forum. You will attract the attention of others who may help and the posts remain to help others who come after us., Hopefully sassi replies
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

 

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