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APL

HollieY
Posts: 2
Joined: Jul 2011

Recently diagnosed with APL & looking for people to share there experiences with.

majito
Posts: 18
Joined: Mar 2010

1st Let me tell you that im really sorry about ur dx, Im a APL survivor I was diagnosed backc on Aug 2009 I went through 3 In Pt treatments then I had 10 weeks of arsenic as an outpt, currently I'm on maintanance which is oral chemo, for the grace of god I'm in full remission I just had my last bm biopsie 2 months ago and it was clear, I know what your might be going through but try 2 stay positive is a long road but doable and attitude helps alot so stay strong as much as you can I wish luck and may god hold your hand thru this difficult time,If there is anything I can help you with please let me know I'm California, LA area God Bless you and remember you r not alone =0)

Feenstra
Posts: 3
Joined: Jul 2011

Hi Holly,

I finally found the APL Pamphlet Link.
This is the best information that I found on APL.

http://patientresource.net/Leukemias_APL_Guide.aspx

Just let me know if there is anything else I can help with.

Good Luck!

kavi2906
Posts: 12
Joined: Jul 2011

I was diagnoised with AML M3 in May 2011 and have undergone the chemo treatment for 3 months and now the maintenance phase is gonna start with Atra for 15 every 3 months and along with that there is one more medicine which would continue for 2 long years.
Since u have undergone the same thing would like to talk /connect with u.

Feenstra
Posts: 3
Joined: Jul 2011

Hi Holly,

I was just Dx with APL on March 27th, 2011.
FYI--This is the second message I am sending you. I sent the first one but I do not see it showing up anywhere. So I am hoping that you recieve this one or maybe you will get 2. One of lifes little wonders. I am also new to this site.

Well alittle about my story. I was Dx on a Tuesday afternoon, I had not been feeling good for about 4 days, I had a huge bruise in the middle of my forehead and I headache that would not go anyway. So Tuesday when I was getting in the shower I notice that I had bruises all over from head to toe. So I was hoping that this was a reaction to medication I was taking or a virsus. Once I was seen in urgent care in about an hour I knew I had leukemia.

There is good news, the type of leukemia that we have responds very well to the newest treatments. In 2005 there was a study that patients were taking part in. The study was looking at if adding Arsenic to the treatment plan just after induction therapy and would this add additional benifit. The study just published an update in Nov. of 2011. The patients that were getting the Arsenic added to the treatment plan were getting more remissions and cures up to 90%. So we do have a excellent chance of having our leukemia cured.
But getting through the treatment to that remission or cure can be really difficult.
But remember our glass is almost full, 90% chance of a cure for APL that is great!!!!.

I was in the hospital for about a month. I was a high risk patient as my white blood cell count was almost 100,000 and I had DIC (a clotting problem from the Leukemia). My doctor told me that the first 10 days would be the roughest time. I did have lots of problems while I was in the hospital, lung problems, congestive heart failure, nose bleeds, infections and blood clots, the usual neasea and hair loss. But I made it through and it was rough.

So just keep thinking that you can do it. But I know it can be really difficult. Somedays I just got overwhelmed thinking I cannot do this anymore. In my mind I was taking on the next weeks and months. So then I needed to break it down to today only or just this evening to get through.

One of the most surprizing things when I went home was how weak I had gotten over the last month. I needed help to get off the couch and taking a shower. But as they blood counts continued to improved I improved overall, so in about 2 weeks after I was home I finally got to feeling alittle better. So be gentle with yourself going through the treatments as they can be tough and rough but just keep pushing through. I also needed to be reminded by my family and friends that I was pushing through, I needed that support from them. So if you need let them know that you them to keep encouraging you.

There is not alot of good information out there on APL. There is alot on AML but not on the subtype of APL. I have found a great article. I tried attaching it to this email but I was unable to do so. So if you know how I can attached it to this message let me know and I will send it to you. I will also continue to look for the orgianl web site and send the link to you.

I would love to keep in contact with you and share our stories.

I send my many blessing to you and your family.

God Bless!
Laurie

(from Wisconsin)

smile.hope
Posts: 2
Joined: Jul 2011

hi Hollie well I was diagnosed with APL on march 10th of 2011 and just 2 weeks ago I received my last chemotherapy treatment.I'm really sorry ur going true this but U have to stay strong and positive as much as you can even thought I know is really hard but times will get better trust me. but I went true pretty much the same as feenstra's experience was I was also a high risk patient I was in the hospital for 33 days and had problems with my heart due to ATRA witch are some capsules that Im pretty sure you will be getting has lots of bad side effects but my body got used to them and they don't feel as bad as it was in the beginning.

I received one induction chemotherapy witch was the strongest and the scariest but thanks to steroids and lots of antinausea I got true it and thanks to all of those nasty poisons in the next bone marrow biopsy it came back negative of leukemia cells so after that I received 3 more consolidation chemotherapy (witch they were way less strong as the first one) together with ATRA and just 2 weeks ago I received my last one, how ever I will be continuing taking ATRA and other drugs for the next 2 years. thank to god Im cancer free now.

Hollie, I really hope you get better I know exactly what you're going true and you're not alone but have faith in god and he will hold you in his arms true this difficult times.

juan
chicago IL

abnewb
Posts: 1
Joined: Sep 2011

Hey HollieY!
I was diagnosed with APL April 2011...it came as a total shock because I was feeling pretty healthy and doing hot yoga all the time and I was 20! Just in the middle of college...and I just turned 21 this July! But Induction was definitely the hardest for me so far. I was in the hospital for about 4 weeks total and got the ATRA syndrome, but I have taken ATRA since then and have been totally fine. I felt nausea for just a few days and got a swollen tongue and pretty bad mouth sores. But I went into remission after induction but of course still have to go through the rest of consolidations. I did arsenic over the summer, 5 days a week for 10 weeks and really didn't have many problems at all. I felt that keeping hydrated really helped with not getting headaches and was able to be really active. I have just completed my second consolidation with High Dose ARAC and my counts are super low, I am starting to get mouth sores and just lost all my hair today! I thinned out for the first two phases but it started to grow back when all of a sudden its gone! I have one more round of chemo to go through and hopefully that will start the first week of October and then I will be in maintenance. YAY! I've found that nutrition and hydration have really helped things go a lot smoother for me. I drink carrot juice, and eat pumpkin soup and sweet potatoes a lot. Which sounds really weird but those foods are supposed to help build up your blood and ANC. Also I keep hand sanitizer on me at all times... Vasaline too because I get super dry from ATRA. I try to do yoga everyday to keep my body moving. And I found having a positive attitude really makes all the difference in how you feel.
If you have any questions at all please email me! When I was going through all this in the beginning I really wished that I had someone to talk to that went through what I was about to go through to have some kind of idea of what it was going to be like.

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