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Diagnosed w/APL Eff May '09--Arsenic Trioxide is HORRIBLE

TW
Posts: 4
Joined: Sep 2010

I'm 60 yrs old diagnosed May '09 w/APL; in hospital 2-1/2 months last Summer.
Do chemo MWFs each wk for 30 dayz at a time (over 8-11 wks).
Can't do ATRA, so doing Arsenic Trioxide.
Anyone out there doing this specific 'chemo' treatment & what are your side effects?
Thanx.

majito
Posts: 18
Joined: Mar 2010

Hello TW I'm sorry to read that you got dx with a apl it's not a fun path but doable, I did 50 doses in 10 weeks of arsenic after 3 in pt chemos I had no side effects from it, at all so I hope you do well on it, any other question will be happy to help you

TW
Posts: 4
Joined: Sep 2010

I've been wondering what your daily life is like. I don't feel like I'm living; just existing, cuz I can't do hardly anything but sit & watch TV all day long. I HATE that. I'm so very limited on DOING something. Going MWF starts out at 9 AM & I arrive home around 2 PM or even 3 PM. Itz like going to job you HATE. Can't travel. Can't plan going out of the house for longer than 3 yrs at a time. I do have wknds 'off-chemo', but my friends wonder why I can join them for lunch but thatz usually it. If I go out of the house for longer than 4 hrs, I'm wiped out for dayz! A fellow patient said that 'cancer drives you; you don't drive it'. After 1 full yr of doing the Arsenic, I'm way past tired of it all. My doc only lets me have 30 consecutive dayz 'off-chemo'. Thatz jest not enuff. For the first 7-10 dayz 'off-chemo', I'm house-bound cuz I'm so super-tired or weak. How long has your doc prescribed your Aresenic treatment? Has your doc given you a long-term prognosis? Mine has 'danced-around' that same question. BTW, when were you orig diagnosed? Do you work as well? I had to retire; can't work at all.

majito
Posts: 18
Joined: Mar 2010

Hello TW, sorry to hear that your not doing to well, obviously there is a big difference between your tx and. Mine I had arsenic also as part of my consolidation chemo, so I had a total of 10wks of arsenic,I'm currently on artra,meptraxase and mp6, i do get tired more often then before being diagnosed which it was back on aug,2009, I'm also 30yrs old, reg my prognosis Im under the low risk category. My dr has told me since the 1st day that APL is highly curable that my risk of relapse is less the. 5% I do hope that's is right but I try 2 leave my life thinking that's how it's going to be, and enjoy my second chance at life. I'm a nurse and yes I'm back to work full time since February this yr so that will be 6 mts after my diagnosis. If there is anything else I can help you with let me know

ReubenC
Posts: 16
Joined: Feb 2011

Wow, I believe I was diagnosed with APL at about the same age as you, but in 07, 6mo before 30. It took me 9mo before I started Maintenance, sounds like the same protocol, though you must have been on a more aggressive schedule then I was.

I didn't really start back at full time till I hit maintenance either. I still have trouble with putting in a full day, but it has gotten so much better - I almost forget, until my body reminds me.

waterstclay
Posts: 1
Joined: Nov 2012

I see you had similar treatment to my husband, and that it has been a long time since you posted. How are you? By any chance are you in Oregon?

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