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APL - women to share journey

grammie114
Posts: 3
Joined: Mar 2010

Hi,
I'm just about 1 year into this trip - APL. I'd like to connect with a few women who have gone on this journey - maybe even some who are at the same stage or a little ahead of me.

My journey has been fairly easy but now I'm finding some challenges in this year and would like to share some info with others. Please write or contact me.

Thanks! grammie114

majito
Posts: 18
Joined: Mar 2010

I'm a 29y female, I was diagnosed on 8/1/09 with APL I'm currently on my last stage of iv tx with arsenic, I received a 3 month inpt chemo now it's 50 doses of arsenic, I went into remission for the grace of god right after my 1st treatment it's been tough but with my family support I have come this far when I got dx I had no symptoms it was 2 little bruces I found on my hand that got me 2 check my self since I'm on the medical field, when I got my results all my counts were low. My WBC were .8 my plaletes were 25,000, Im being treated at USC Norris with one of the top of the line Dr , I hope everything it's going well for you 1yr after all your tx.

grammie114
Posts: 3
Joined: Mar 2010

Nice to hear from you.

I am almost 65y female and I was very late in getting my dx as I kept putting it off. I had had dental surgery in Jan 2009 for implants and had some difficulty with that - jawbone was sticking out and causing pain (this I believe was the result of FOSAMAX I took for a few years before for osteopenia); traveled to Germany for a week; traveled to TX for a week and when i came home was totally exhausted. Had some bruising all over my body (but I have always bruised easily) for the prev 2 weeks but dismissed it as the result of taking too many Ibuprofen pills for dental pain. Anyway, when I finally went to dr and had blood work my numbers were - WBC .6 and platelets 13,000. Very bad indeed. Immediately hospitalized and spent 6 1/2 weeks in Cancer Institute of NJ in New Brunswick, NJ.

My time there was very good as far as treatment and nursing goes. My family and friends stayed with me overnight for about 2 weeks because I knew I would not remember what was going on and I wanted to make sure someone remembered for me. The staff was great, my family and friends very helpful and I got through those weeks. Returned to hospital to have my gall bladder removed as that kicked up (never had a problem with it before).

Right now I'm on ATRA and other chemo drugs. My Triglycerides and Cholesterol are high due to chemo pills but taking meds for that too. We have always joked that whatever the problem is while treating this leukemia "we have a pill for that". So, more pills and more side effects.

I am experiencing muscle and/or joint pains. I feel like a very old lady! I have not been that way before and am trying to figure out which meds might be causing this. Have you had anything like that? I also have the usual skin peeling on hands, feet, face and very dry skin all over. My hair is finally coming back in - again - and I'm pleased about that.

How about you? What are your side effects? Thanks for your reply.

majito
Posts: 18
Joined: Mar 2010

Hello again in regards to your side effects currently I'm not taking atra but I will as maintainace, but when I took it on my inpt tx the only side effect was headacheas, regarding your joint and muscle I will say it's your cholesterol medication I'm a nurse and I work with An endocrine practice we see lots of ppl with cholesterol problems once they start the Medicines they complaint with the same side effect, which they r well known to cause muscle and joint pain, so I will recomend for you to speak 2 your physician about that so they can change ur medication. as of now I haven't had any problems, beside when I was in the hospital which was expected like stomach problems,headaches, etc. My hair is about an 1inch since my last chemo back in November left me like a baby's butt ;), I'm currently on arsenic which it's consider chemo but it won't make my hair fall out which it's good :), I hope I was able 2 help a bit let me know if I can help u in anything. Ps reg your cholesterol med if you r taking simvastatin or lipitor those r the ones pts complaint that most reg muscle and joint pain .

TW
Posts: 4
Joined: Sep 2010

9/4/10: Hello Grammie. I'm a 60-yr old lady, who was diagnosed w/APL in May '09. Since that time, I've been doing chemo (Arsenic Trioxide) 2-hour drips MWFs for 30 dayz (that stretches-out over 10-11 wks sometimes. R U still in treatment at this point in time, & how r u doing? I can't work anymore; I'm retired. Can't travel. Tired every day. Has your doc given you a prognosis yet? Mine has 'danced-around' that subject. But, he's a grreat doc from MD Anderson Ctr.

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

hello grammie114.
i am a 19 yr old female and i was diagnosed with APL in december of '09. i have been battling it for 6 months. i am, as of just recently, in remission. what stage are you in?

TW
Posts: 4
Joined: Sep 2010

Hello:

Today is Feb 14, 2011--Valentine's Day.
I'm just wunderin if you're still 'in treatment' (chemo) for APL & the kind/type of chemo you're taking & how often, etc.
I'm 61 & was diagnosed in May 2009 w/APL. Since that time, I've been having chemo 3 days per wk for 30 dayz & then I'm 'off-chemo' for 30 straight dayz. My chemo drip clear liquid is called 'Arsenic Trioxide' & not 'ATRA'.
I'm very very tired all the time.
Can't work any longer.
Since Sept'2010, I've been told that there is 'No Evidence of Disease' (NED) in the files/charts/computer. So, the chemo schedule I'm still doing (the Arsenic Trioxide-10 mg-the lowest medicinal dosage), is going after the so-called 'microscopic bits' that cannot be seen under a microscope. The oncologist says my chemo schedule treatment at this time is 'indefinite' - whatever that means.
Last year, I emailed 'Grammie' - the 65-yr old lady who posted that she too had APL.
But. . .haven't heard back from her.

Tell me how you're doing now.
HAPPY VALENTINE'S DAY!

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