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33year old sister with apl

Posts: 1
Joined: May 2016

hello all,

    My name is Tamara and my sister was recently diagnosed with apl she's 33 years old and this is the hardest thing I've ever had to watch somone go through in my life! I was wondering can anyone share their experiences with us? Shes home now from a 3 and half week stay at the hospital. She's currently on atra for chemo and has to start arsenic in 30 days. Is she suppose to feel tired all the time? She also feels like her teeth are getting sensitive to the mouth wash she has to use. Any feedback would be greatly appreciated. I know my sister will pull through this its just hard to accept what's going on. 

God Bless you all.

Posts: 2
Joined: Jun 2016

Hi Tamara - I am 42 yr old male and was diagnosed with apl on Mar. 17th this year. I was a Wake Forest Baptist hospital for 43 days and am now home back at work. It has been almost 5 weeks since I left the hospital so it sounds like I am about that far out in front of her in my treatment. I'm sure you've heard from the nurses and doctors that apl is the leukemia you "want to get" if you're going to get one because it is so treatable. I did 6 weeks of ATRA & Arsenic in combination at the hospital. A morning and evening dose of ATRA and an afternoon bag of arsenic daily. They took me off all drugs for two weeks, then started ATRA & Arsenic again. ATRA twice daily for two weeks, right now I'm off it for two weeks. Arsenic 5 days a week for 4 weeks, then off for 4 weeks.

To answer your questions - are you supposed to feel tired all the time? Yes. The worst I ever felt was the first couple of days home. Very short of breath, very tired. The more I moved around, the better I started feeling. Remember her neutrophils and hemoglobin are just now coming back up and it will take a couple weeks to start feeling more like normal I recently started getting tingling and numbness in my toes which is a side affect from the arsenic. My local onc says it is nerve damage that will reverse itself after the treatments are complete. I have not had any issues with my teeth or mouth. 

Is she getting a port put in? I did and I like it now that its not sore any more. So glad to have my PICC line out. I get a CBC and EKG twice a week. My blood counts are all in the normal range. I really wish I didn't have to continue the maintenance treatments, I think I would feel better as all my issues right now are side-affect related.

I was told by the onc at WF Baptist that I would have to do 4 'cycles' with each cycle being 8 weeks long. After that 32 weeks, I should be free and clear the rest of my life. 

All the best - tell your sister to keep her spirits up, she'll start feeling better soon!

Posts: 1
Joined: Oct 2016

@Tams22,I know how your sister is feeling,cause i was her in 2014.I was diagnosised with APL also and i had to take chemo pills and also go through chemo treatment.I was in the hospital for 3mo. I was taking Atra and Arsenic for 7mos. Yes your sister will feel tired until her blood count get back normal.I was very tired but we have to keep brush ourself and get the strenght back.  I am here for more support .

Posts: 7
Joined: Apr 2010

Hi all, Im a 59 yo male, I was diagnosed in Aug, 2017 and spent a month in the hospital, followed by the same treatments as hickory above.  Im currently starting my second round in consolidation, and have endured pretty well.  The beginning time in the hospital was bumpy, although I was very sick upon admission.  My counts were white bld ct, 0.64 of 4.00,  Red ct, 3.31 of 4.50, and platelets 19 of 150.  Once everything was balanced, ATRA and arsenic started.  So, I feel blessed I am not overly "sick" from the treatments, I just feel like I have the flu, tired 98% of the time, (struggle to get out of bed) and generalized pain, like Ive been thrown down a flight of stairs.  I get around, but its a chore, and getting really depressing.  It's good to read these postings because it seems that everyone is related in one way or another with the dealings with this.  Doc's are very happy with my outcome so far, and they're very optimistic with the future.  My counts are up where they should be, and they should stay there, although Im petrified going in Monday after my break that there will be something wrong, uggh.  Well, thanks for your time, Ill try and keep you posted, and keep healthy..

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