ALL PH+ adult survivors

das
das Member Posts: 1
in Leukemia #1
Our son, ( early thirties) was diagnosed with ALL PH+ a few months ago. We were all set for a BMT when the donor fell through very recently. Since the bone marrow biopsy showed that he is in remission, he has chosen not to wait for another donor and pursue the transplant.
he has a bad feeling about the due to the high toxicity of the transplant radiation, high doses of chemo and long term effects.
Would like to hear from others who also chose not to undergo a transplant and what to expect? and how to maintain the remission. We are all aware of the low survival rate without a transplant for this specific type of leukemia (PH+ chromosome), but according to the literature there is a fine balance of benefits and risks with a transplant.
das

Comments

  • nempark
    nempark Member Posts: 681
    #2
    All-my daughter age 44
    Dear Das: so sorry I didn't respond earlier. It is now 4:00 am. I will write you later and tell you about my daughter's ALL and our terrible, horrible journey. God is our Creator and our Greatest Doctor.
  • Zee487
    Zee487 Member Posts: 2
    #3
    I'm 25...going on 26 and I
    I'm 25...going on 26 and I was diagnosed last April and went into remission within 6 weeks after diagnosis. I went through the entire Hyper CVAD chemotherapy series and it took about 7 months. I was extremely healthy before being diagnosed and even sort of maintained my workout habits throughout treatment. It was only until the last two treatments that I started to really feel the effects of chemo. Post chemotherapy, my hair grew back and I seem to be feeling back to "normal" almost as if nothing ever happened. I completed a marathon this april (12 months after diagnosis) and am back to living my life. Right now I'm doing "maintenance" chemotherapy which consists of taking oral methotrexate pills once a week, and another type of pill everyday. And every 28 days I go in for a vinkristine injection through an IV. I don't have a PICC line anymore or a port in my chest. All my blood counts and chemistry are back to normal. IDk if this helps at all.
  • nempark
    nempark Member Posts: 681
    #4
    Zee487 said:

    I'm 25...going on 26 and I
    I'm 25...going on 26 and I was diagnosed last April and went into remission within 6 weeks after diagnosis. I went through the entire Hyper CVAD chemotherapy series and it took about 7 months. I was extremely healthy before being diagnosed and even sort of maintained my workout habits throughout treatment. It was only until the last two treatments that I started to really feel the effects of chemo. Post chemotherapy, my hair grew back and I seem to be feeling back to "normal" almost as if nothing ever happened. I completed a marathon this april (12 months after diagnosis) and am back to living my life. Right now I'm doing "maintenance" chemotherapy which consists of taking oral methotrexate pills once a week, and another type of pill everyday. And every 28 days I go in for a vinkristine injection through an IV. I don't have a PICC line anymore or a port in my chest. All my blood counts and chemistry are back to normal. IDk if this helps at all.

    Thanks Zee
    Thak you for your very encouraging response. Please keep in touch or if you do not mind please send me your e-mail address, I would like to have more information. Thanks again and good health to you. june my email is juneadrian@msn.com.
  • nempark
    nempark Member Posts: 681
    #5
    Hi
    Dear Das: I do hope you and your child are doing fine. Please let me know how things are going. You are in my thoughts. My daughter is still in treatment and is really fighting this monster. Hope to hear from you soon and wishing that you are getting the treatment and recovering from the shock of this horrible dx. June

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