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Thread: Sister passed away very suddenly - found due to APL

  1. #1
    Newbie New User
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    Sep 2019

    Sister passed away very suddenly - found due to APL

    Dear all,

    The most important and beloved person in my life, who was a mother and sister for me, but she prefered me to call her sister. She was from Thailand originally, we been living in shared apartment and life for years, she was so helpful and a lovely person and the cutest in the world. I was the most lucky person to have known her. it is so difficult to write these lines. We went through thick and thin through the life. She cooked for me, she hugged me, she loved me. I am very sad and broken.

    She passed away recently with 48 years old, due to: Acute promyelocytic leukemia. Within 2 days! She was 1.55m tall and had 50kg. Sometimes I loved her as loving a kid, she had so small and cute feet also. And always smile on her face.

    Everything was fine with her, she had just been suffering for years from high blood pressure. She hadn't smoked cigarettes, she lived very healthy and ate healthy, didn't drink alcohol or did very rare.

    The day when the strange things started, nobody knew whats going on. I would like describe how it happened and will comment what I know or what I think I know in brackets, or add my questions.

    The symptom started like, when they were wandering on a mountainous region, not so high thou, maybe ~500m: She was getting very tired with walking, after some steps or within 2 minutes (probably less oxygen in blood due to APL), and needed some break, and got later in the afternoon huge menstrual bleeding and got too weak. She was brought to a doctor, who immediately adviced to bring her to hospital.

    At the hospital she received some serum and blood transfusion (can this increase to much higher blood pressure? and since she was from Thailand, is western blood still applicable?). Until the next day morning everything seemed to be calmed down and under control, only her tongue got a little large. She posted one photo to facebook, she was really looking so fine. She thought she will be picked up now. And sadly that is the last thing she remembers. How sad is that without knowing what she had. Her boyfriend was on the way to pick her up after they talked to each other on the phone, but just when he arrived at the hospital at around 9AM, everything was a desaster. He saw that the doctors were very stressed and one was running out of the room screaming that they can't stop the bleeding (turned out they meant bleeding in her brain). They started operations, and drilled into her brain even. At around 4PM it was told that she will probably not survive anymore.

    The following from the records logs happened:
    Atypical supratentorial intra-axial mass bleeding, breakage of the ventricular. (this here probably that after 9AM)
    Suspect acute promyelocytic leukemia (confirmed some days later).
    External ventricular drain, twice.
    Decompression left frontal after worsening condition. (4PM is probably here)
    Install of intracerebral hemorrhage device/tube.
    Brain pressure 125 (we been told it was 4 times higher than normal).
    Cerebral edema with rescinded gray white differentiation and impaction.

    I saw her the next day morning, I didnt know what all she went through, just heard it is very serious, I thought I could at least talk to her, but when I saw her it broke my world, I broke down, she was never looking the same as in her picture one day earlier. In artifical coma. Her hairs were cut, parts of the head and body were blue, and all head and body got fat.

    It still hurts me so much, I loved and love her so much. Seeing her so lonely and helpless damaged me. She was just breathing artifically. I knew it is done when I saw her like that, but still had hope. I wanted know what was going on but they told me I had to wait until the doctors come.. So later in the afternoon it was official. They told us her brain is damaged, and different fluid going through or replacing the brain. She was already brain dead. And they would turn off all the devices the next day and declare her as dead. I hugged and kissed her the last times. She didn't wait until the next day and passed away by herself in the evening.

    I remember about 10 days earlier, when I walked with her, she had to stop once and breath, and felt tired. This was very uncommon for her, I hugged her and brought her home as she wished. I am sure it or APL was started from there, or even earlier, but we had no clue, and she just said it is ok she just needs relax.

    Please if someone could tell me, another important questions arises for me, please listen anyone. A few months before, she started easily having blue/red rash skin, when she hit somewhere, and it took quite a long time till they got healed. This was at least a sign, wasn't it??

    She could have been saved if we just knew just a few days earlier, couldn't she?? Or if the doctors could start APL therapy immediately?

    Is it common on APL that the brain pressure gets high and thus bleeds?? If so why does APL cause this? and I hope the blood from transfusion didn't cause her higher blood pressures?

    Can it be that the APL could be inherited? I read somewhere that it is not the case, but her father died with similar symptoms over 35 years ago. He also had high blood pressure, and from the kids with 9 siblings, she the youngest, was the only one having this either.

    Thank you for everyone for taking time and reading my post. I hope you can write or comment anything, anything would make me happy.

  2. #2
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014

    I'm very sorry to hear the loss of your sister; I can tell from the beautiful way you described her, that she was very dear to you. I don't claim to be a doctor, nor can I interpret some of the symptoms you suggest, but it's quite possible that your sister may have had some signs of her disease for some time, but chose not to seek medical help for them. She may have thought they'd go away on their own. Sometimes as humans, we avoid seeking medical care because we're afraid of what the doctors may tell us. I don't know if that's what happened in your sister's case.

    As for whether or not the APL can be inherited, genetics can play a part in some cancers. If you're concerned whether or not you can be affected, it would be best to discuss this with your doctor on your next visit.

    I wish you peace and fond memories of your sister.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED


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