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Have had an A.L.L. relapse...

ginny718
ginny718 CSN Member Posts: 2
edited March 2014 in Leukemia #1
I was diagnosed with A.L.L. in December 1998 and went through a year of treatment. When I was 3 weeks from the end of "maintenance", it relapsed in the Central Nervous System. Because of "pneumonia"...I am a few months behind in my treatment; but, have a long way to go. Would like to hear from anyone who is or has gone through this.
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Comments

  • chrisv
    chrisv CSN Member Posts: 3
    #2
    Dear ginny, your story remids me alot of my time in treatment, I was diagnosed dec. 1 1997, and at right about the time you were diagnosed I was nearing the end of one phase of my treatment, from sept. 98 to summertime I had pnemonia 5 times, and each was a direct result of the most potent and toxic medicine in my protocal, ara-c, my hospital recovery ranged from 6-13 days, and I would always be send home with more medication. A few times after an episode I was sent home with an I.V. pole and did many of the meds myself. Dont let my story get you down, because now I'm 2 years out of treatment and I'm feeling great, I have began a chatroom specifically for people that have been in our position, if you would like to visit it than go to www.topica.com and type in the subject- cancerkids-, once you join the list you can visit the chatroom, I'm usually in at around 5 oclock eastern time, every weekday, so come on and we can share more.
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  • ginny718
    ginny718 CSN Member Posts: 2
    #3
    chrisv said:

    Dear ginny, your story remids me alot of my time in treatment, I was diagnosed dec. 1 1997, and at right about the time you were diagnosed I was nearing the end of one phase of my treatment, from sept. 98 to summertime I had pnemonia 5 times, and each was a direct result of the most potent and toxic medicine in my protocal, ara-c, my hospital recovery ranged from 6-13 days, and I would always be send home with more medication. A few times after an episode I was sent home with an I.V. pole and did many of the meds myself. Dont let my story get you down, because now I'm 2 years out of treatment and I'm feeling great, I have began a chatroom specifically for people that have been in our position, if you would like to visit it than go to www.topica.com and type in the subject- cancerkids-, once you join the list you can visit the chatroom, I'm usually in at around 5 oclock eastern time, every weekday, so come on and we can share more.

    Chrisy...thank you for the information on the chatroom. I am interested in joining the "group" there. I registered at "Topica.com". The only thing there is "search". When I enter "cancerkids" there - it says that there is nothing found. It just has a bunch of advertising lists you can join. What am I doing wrong? Could you give me another route to get to the chat room??? Thanks.
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  • callista
    callista CSN Member Posts: 1
    #4
    MY husband is in the consolidation phase of his treatment for ALL. We are trying to find a bonemarrow match. Has your Docter offered you this form of treatment? I am scared we have two small children 3 and 7 months. BY what my doctors tell us bonemarrow transplant is the only option after relapse , does this sound right? Hope things go well for you.
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  • dszabo
    dszabo CSN Member Posts: 15
    #5
    Hi, my name is Danielle and i'm 22. I was diagnosed w/ ALL in Nov. '01. I am gettin ready to go on the maintance, so as u can tell i haven't had any relapses yet. But i do have a question--if it relapsed in the CNS then did your treatments (before the relapse) include any spinal taps or radiation to prevent the CNS relapse? Hope 2 hear from u soon.
    Danielle
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