Hi has anybody had APL that has spread to the spinal fluid?

LTSC123
LTSC123 Member Posts: 7
in Leukemia #1
Hi my husband got APL July 2007 and since has relapsed in the spinal fluid followed by more chemo and aresnic followed by a transplant and full body radiation using his own cells, only to find out 3mths down the line that the it is still in the spinal fluid, more chemo only this time through a ommay resevoir instead on spinal injections it is showing clear again but they reackon it will reappear if they stop treatment, he is also having aresnic again. Has anybody experienced this? I would like to know. Thanks

Comments

  • OTIS2009
    OTIS2009 Member Posts: 4
    #2
    My husband was diagnosed Feb
    My husband was diagnosed Feb 2009 with AML subtype APL.... I only want to ask did your husband have preventive chemo in his
    spinal cord upon his first diagnosis back in July 2007? Mine did, not to say he wont relapse. But it has been 2 years he has been in remission. All I read about APL, the 3rd year is relapse in a lot of cases. Scary, I hope your husband reaches remission again, all my best
    and prayers to you both.

    Tracy
  • worried08
    worried08 Member Posts: 16
    #3
    I want you to know that I
    I want you to know that I feel your pain. My husband was diagnosed with APL in July of 07 as well. He was put into remission only to relapse in his CNS 6 months later. He never relapsed in his blood. He was treated with Arsenic while he was getting chemo via lumbar puncture. The chemo never worked for him and Leukemia was still present, so they opted for head and spinal radiation. This worked for him and after he was put into remission he was then given an Autologous transplant at the University of Minnesota. He has now been in remission for over 1.5 yrs. Its been a long road. But never give up. I thought when they couldn't get rid of the Leukemia in his spinal fluid with chemo that there was no hope. But other treatment worked and he is doing fine today.
  • LTSC123
    LTSC123 Member Posts: 7
    #4
    OTIS2009 said:

    My husband was diagnosed Feb
    My husband was diagnosed Feb 2009 with AML subtype APL.... I only want to ask did your husband have preventive chemo in his
    spinal cord upon his first diagnosis back in July 2007? Mine did, not to say he wont relapse. But it has been 2 years he has been in remission. All I read about APL, the 3rd year is relapse in a lot of cases. Scary, I hope your husband reaches remission again, all my best
    and prayers to you both.

    Tracy

    APL spinal fluid
    Hi Tracy thank you for responding. When you say your husband had spinal chemo, had he presented cells in his spinal fluid? and how many times had he chemo into his spine?
    No my husband did not have any he had a very high count at first and they did not check his spinal fluid, he is sure it was in there from the start. Is your husband on any medication now? as we have found that once off medication within 3mths it strickes back. They have told him that it is unlikely that they will get to cure it as he has had all the medication now and non of it has worked. Thanks
  • LTSC123
    LTSC123 Member Posts: 7
    #5
    worried08 said:

    I want you to know that I
    I want you to know that I feel your pain. My husband was diagnosed with APL in July of 07 as well. He was put into remission only to relapse in his CNS 6 months later. He never relapsed in his blood. He was treated with Arsenic while he was getting chemo via lumbar puncture. The chemo never worked for him and Leukemia was still present, so they opted for head and spinal radiation. This worked for him and after he was put into remission he was then given an Autologous transplant at the University of Minnesota. He has now been in remission for over 1.5 yrs. Its been a long road. But never give up. I thought when they couldn't get rid of the Leukemia in his spinal fluid with chemo that there was no hope. But other treatment worked and he is doing fine today.

    Thank you for your responce.
    Thank you for your responce. Can you tell me how many spinal chemos your husband had before he had the radiation? Is he on any medication now?
    My husband had about 30 spinal chemo injections it took a long time to get the fluid clear, they only stopped because he was going to have a Autologous transplant and they were worried that the radiation would cause brain or spinal damage due to the amount of chemo he had, had into the spine . They opted for full body radiation because head and spinal radiation would have been stronger and they felt it was too risky. We think ourselves that the radiation was not strong enought and that he would have been better off doing it like your husband. Well the difference this time is that the fluid has cleared much quicker,we think the radiatiion must have half killed them, but they insist that if they stop it will come back that he must have resilent cells as all the medication so far has not worked, he was having chemo twice a week through the resevoir and now it has been cut down to once a week due to my husband has a terrible reation to the chemo when it hits his brain and he becomes violently sick and has to has an antisickness that puts him to sleep and he comes home the next day after 10 hours sleep. He is also on arsenic twice a week. Thanks so much for your contact.
  • worried08
    worried08 Member Posts: 16
    #6
    LTSC123 said:

    Thank you for your responce.
    Thank you for your responce. Can you tell me how many spinal chemos your husband had before he had the radiation? Is he on any medication now?
    My husband had about 30 spinal chemo injections it took a long time to get the fluid clear, they only stopped because he was going to have a Autologous transplant and they were worried that the radiation would cause brain or spinal damage due to the amount of chemo he had, had into the spine . They opted for full body radiation because head and spinal radiation would have been stronger and they felt it was too risky. We think ourselves that the radiation was not strong enought and that he would have been better off doing it like your husband. Well the difference this time is that the fluid has cleared much quicker,we think the radiatiion must have half killed them, but they insist that if they stop it will come back that he must have resilent cells as all the medication so far has not worked, he was having chemo twice a week through the resevoir and now it has been cut down to once a week due to my husband has a terrible reation to the chemo when it hits his brain and he becomes violently sick and has to has an antisickness that puts him to sleep and he comes home the next day after 10 hours sleep. He is also on arsenic twice a week. Thanks so much for your contact.

    I believe it was about 30
    I believe it was about 30 treatments to his head and spine before they opted for radiation. They then waited for his CSF to clear before he received his transplant. I was told when he was receiving the radiation to his head and spine that it was in small amounts so he did not exceed the "limit" a person can receive in a lifetime. So he was then able to receive full body radiation and chemo with his transplant. The only medication he is on today is pain pills for the Neuropathy he developed from Arsenic.

    Have you guys ever tried to seek another opinion for his treatments? My husbands doctor was in contact with "the APL doctor" in Chicago for which treatments were best for him. I wish you guys well and if there is any other information you need I would be happy to help. When my husband was sick I was desperate for real life stories to help me cope with his disease.
  • LTSC123
    LTSC123 Member Posts: 7
    #7
    SAD NEWS
    Hi just to let you know my husband lost his battle on the 1st June.

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