APL experiences?

Hi all,
Just found the site and wanted to check out the community. I'm almost exactly one month out from my last treatment for acute Promyloctic leukemia, and am trying to figure out what life will look like now. I'm a 29 year old science instructor that used to run and hike and cycle and kayak and travel....now I'm trying to get back to normal but feel like I've aged so much mentally and physically since my diagnosis last year.
So, are there any other APL folks here that can give me some insight on what to expect as recovery continues?
Thanks!

Comments

  • 4 Comments sorted by Votes Date Added
  • Hi Liza,

    I just saw your post and I can't tell how excited I was to see it! Thank you for being brave enough to share your story. I myself just finished treatment this month for APL Leukemia. I cant tell you how nice it is too meet someone like myself. I recently attended the Cancer Con Conference this last weekend in Denver, CO. Even though I met so many young adults with leukemia and other cancers. I couldn't find a fellow APL friend among 600 attendees,

    During the conference I met so many inspirational people but I struggled with my own battle. I didn't feel like it was valid enough because I seemed to walk out unscathed compared to others in our shoes. One word of advice, don't sit at the lunch table with other leukemia survivors and tell them you didn't those your hair. Even though I was among peers and had a great sense of community, I never felt more out of place until that moment. I felt guilty because of my blessings, yet another way Cancer takes away from us.

    As of last week I am officially in remission thank god. But that's after a long road of treatment. Though my treatment schedule didn't last years like some, I feel like it was intensive and tedious. After a 5 week hospital stay followed by over 80 outpatient infusion treatments of Arsenic Trioxide in conjunction with oral chemo of ATRA. My treatment schedule was 5 days a week for a month straight, then a month off. Though I didn't lose my hair, I suffer from neuropathy in my feet, vision changes and memory loss.

    So I also struggle to find myself back into my "normal" life before cancer. As a 29 year old as well finding my groove with work, friends and don't even get me started about dating, I feel so lost at times. I hope to hear back from you. I cant tell you how delighted I am to get the chance to talk to another APL friend. But as my recovery continues I find special blessings each day, such as seeing the bumble bees out on the flowers at work today. I was so happy to experience that vs being locked up in a hotel room. I took in all the smells, sights and sound of the world around me. I am very passionate about horseback riding and I try and be with my horse doing something daily with him to get my passion back. Though I am experiencing some anxiety with it that I cant explain maybe only as damaged goods from cancer, But Im hoping my passions will make me whole again. I hope to hear from you again!

    Much Love and Support,

    Amy 



  • LizabeeLizabee Community Member
    Amy, it's so wonderful to hear from you! Your experience and treatment sound so very similar to mine, and it's nice to finally have some feedback! I got sick really suddenly, with bruises and a racing heartbeat and feeling totally winded and exhausted. When I wasn't able to keep food down I finally got some blood work done and was checked into the ER the next morning. I didn't get to leave the hospital for a month, but like you, I switched to outpatient for the other treatments. I feel like I got really lucky because I didn't lose tons of weight, or all of my hair, but I still don't feel like myself. Part of that is due to the fact that i had a couple if mini-strokes/ brain bleeds that make me feel kinda ditsy and off-balance, and I'm still tired. I also feel like I lost a year of what I had planned, but I have learned a lot about my friends and family and myself.
    Good luck to you, and I'd love to keep in touch with you as you recover! If you're ever planning to pass through Kentucky, I'd like to meet you too!
  • GingerAmyGingerAmy Community Member

    Hi Liza,

    Thank you so much for responding. Again its such a delight to talk to a fellow APL friend. I'm sorry for the endeavors you've endured during this journey. It brings me comfort to known that I'm not the only cancer patient in the world that didn't lose all my hair and lose a ton of weight as well. Though I'm sorry for your strokes and brain bleeds. I asked to be checked for those myself since upon my diagnosis I had horrible headaches. I wasn't symptomatic enough to warrant the diagnostic testing for it.

    Like you I was suddenly whisked away to ER and diagnosised. I started with the unexplained bruising, bleeding gums, nose and shortness of breath. I couldn't get in with my PCP (still haven't seen them since all this, their choice not mine) So I went to the urgent care and begged the doctor to do lab work. Thank goodness I went to work the next day and didn't call in or I'm sure I'd be dead. My coworker begged me to go to the ER. Then I got a call to go straight to the ER from the same PCP who wouldn't see me. I didn't trust him so I got a copy of my own labs. My Platetes were at 12, my Hemoglobin was 5.6 and ANC was less than 1. So I  showed them to the doctor I work with and he told me to go to the ER. The doctor there so politely told me that I either had HIV or Leukemia. I guess I picked the right one...LOL. Then the rest is history so to speak.

    Id love to keep in touch! I live in Nevada. (Reno not Vegas..LOL) If I ever get to Kentucky I'll look you up. I've ben there before and love it. I am going to Georgia next month to visit my sister. If I layover in Kentucky I'll Let you know. Im going to give you my personal email so we can correspond easier that way.

    Much Love,

    Amy

    Gingeramy27@gmail.com

  • LizabeeLizabee Community Member
    Hello again!

    I'm so glad that you were able to get to the ER and were diagnosed quickly! It sounds like a really good thing to have such great coworkers. You're very lucky! My doctors also suggested HIV at one point, but also were testing for tick borne diseases, so it sounded like they were just making wild guesses, I thought. Ha!

    I'm sorry to hear that your PCP was so difficult, and I hope that you'll be able to find one a bit more responsive soon. Does NV do the medical partnerships thing where your oncologist could recommend a new PCP that would have experience with APL patients?

    I'd love to hear from you again, and my email is Mortenson.ea@gmail.com.

    I'm so glad to have another person that has gone through the APL experience to talk with. Many thanks again, and I'm looking forward to catching up with you periodically.