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Life after Acute Promyelocytic Leukemia

gildas2016
gildas2016 CSN Member Posts: 1
in Leukemia #1

Hello. I finished treatment for APL almost 2 years ago. I still feel extreme fatigue. I was wondering how other survivors feel. Am I the only one that hasn't snapped back into my pre-leukemia self? I appreciate any input. Thank you.

GM

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  • hickory91
    hickory91 CSN Member Posts: 2
    #2
    Hi - I'm a 42 y/o male,

    Hi - I'm a 42 y/o male, diagnosed on 3/17/16 with APL. I am starting my 3rd round of maintence treatments of a combination of ATRA & ATO and should finish close to Thanksgiving. As for your fatigue, I can tell you that I have been extremely fatigued as well. I recently had my Vitamin B-12 checked and it was very low. I'm currently getting Vitamin B-12 shots and it is helping. I find the more active I am, the more energy I have. The problem with that is getting motivated enough to be active in the first place - just wanna sit around all day on my recliner. I am signing up with my local YMCA for their LiveStrong program. My Onc doctor at WF Baptist suggested it. It looks encouraging - at least something to get me moving.

     

    Hope this helps, however I know I'm not done with my treatments like you are. 

     

    SK

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  • LSmith46
    LSmith46 CSN Member Posts: 2
    edited March 2021 #3
    APL Survivor

    Hi, I am a 46 y/o female that is now in my fourth year of remission from APL. I hope both of you are doing fabulous and have both fully recovered from the APL journey. I can say that I FINALLY feel as though I have turned a corner and am close to my pre-leukemia self. I am happy to say that I competing this summer in the Camp Gladiator games and I workout 5 times a week. Initially, getting back into the swing of it was difficult but it has helped my mind and physical state. I had differentiation syndrome with my APL which caused extreme weight gain in the beginning so I wanted to get back to me. 

    Regarding extreme fatigue, something my docs told me was to give your body some grace. You have been through a lot. I hope given the time it's been since you have both posted that you are both doing well and are enjoying a full recovery. 

    LS

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  • cheeps
    cheeps CSN Member Posts: 1
    edited March 2021 #4
    LSmith46 said:

    APL Survivor

    Hi, I am a 46 y/o female that is now in my fourth year of remission from APL. I hope both of you are doing fabulous and have both fully recovered from the APL journey. I can say that I FINALLY feel as though I have turned a corner and am close to my pre-leukemia self. I am happy to say that I competing this summer in the Camp Gladiator games and I workout 5 times a week. Initially, getting back into the swing of it was difficult but it has helped my mind and physical state. I had differentiation syndrome with my APL which caused extreme weight gain in the beginning so I wanted to get back to me. 

    Regarding extreme fatigue, something my docs told me was to give your body some grace. You have been through a lot. I hope given the time it's been since you have both posted that you are both doing well and are enjoying a full recovery. 

    LS

    Congrats!!

    I'm very glad to hear about someone who has dealt with this in a positive way! It sounds like a long, rough road. I have a best friend that has just been told that he may/does have this type of leukemia. He's been treated for three years for skin cancer, now he's facing APL DX.

     

    As a close friend, I would like to be supportive. I have always found internet forums to be of great help. 

     

    If anyone knows of a more active message board to join, I'd be honored to join. Here is hoping every one with any cancers are in a positive situation. 

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  • LSmith46
    LSmith46 CSN Member Posts: 2
    edited March 2021 #5
    cheeps said:

    Congrats!!

    I'm very glad to hear about someone who has dealt with this in a positive way! It sounds like a long, rough road. I have a best friend that has just been told that he may/does have this type of leukemia. He's been treated for three years for skin cancer, now he's facing APL DX.

     

    As a close friend, I would like to be supportive. I have always found internet forums to be of great help. 

     

    If anyone knows of a more active message board to join, I'd be honored to join. Here is hoping every one with any cancers are in a positive situation. 

    Thank you so much! Positivity

    Thank you so much! Positivity is pretty powerful! I am so sorry to hear about your friends diagnosis. I pray that your friend has wonderful medical care. It's obvious that he has a fabulous friend that is looking seeking information. I will say that my blessing was the Medical Center in Houston. My docs were amazing.

    I am not familiar with any other forums but if you find some I would love to know. 

     

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  • Tommybear1
    Tommybear1 CSN Member Posts: 1
    #6
    LSmith46 said:

    APL Survivor

    Hi, I am a 46 y/o female that is now in my fourth year of remission from APL. I hope both of you are doing fabulous and have both fully recovered from the APL journey. I can say that I FINALLY feel as though I have turned a corner and am close to my pre-leukemia self. I am happy to say that I competing this summer in the Camp Gladiator games and I workout 5 times a week. Initially, getting back into the swing of it was difficult but it has helped my mind and physical state. I had differentiation syndrome with my APL which caused extreme weight gain in the beginning so I wanted to get back to me. 

    Regarding extreme fatigue, something my docs told me was to give your body some grace. You have been through a lot. I hope given the time it's been since you have both posted that you are both doing well and are enjoying a full recovery. 

    LS

    Where you on ATRA?

    Where you on ATRA?

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