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APL (acute promyelocytic leukemia)

SnowWhiteDove459
on 5/18/16 7:32 pm - Wise, VA

When my bariatric surgeon was counselling me prior to having my open RnY in 2002, the main thing he stressed to me was that if I ever got cancer, my chances of survival were next to 0 due to the nutritional factors dealing with cancer.  Nobody knew that my WLS would cause me to eventually start having problems with malnutrition.  And most certainly, nobody ever expected my surgery to cause me to end up with APL leukemia!

APL is a very rare form of leukemia.  If you'd like to read more about it, here's a link (https://ghr.nlm.nih.gov/condition/acute-promyelocytic-leukem ia#) or you can google it and find out even more.

APL is caused by a genetic mutation.  In my case, this mutation was caused by a severe vitamin A deficiency that I wasn't aware I had.  I knew I had problems with microcytic anemia and pernicious anemia.  I'd suffered a light stroke due to these two anemias.

I learned that not every gastric bypass patient will have the same results.  Some of us end up having other forms of health problems.

I found out I had APL after I was injured on the job and cut my head open, which required staples and a tetanus shot.  The morning afterwards, my entire left arm was deep purple from the injection.  The following week, when I went back to the ER after work to have my staples removed, I showed the ER physician my bruise and he wanted to know if someone had been beating on me.  When I explained that it was bruised from the tetanus shot, he started testing me.  About 45 minutes later, he took me into a private room to break the news to me that I wouldn't be going back to work and why.  He told me I had to go to UVA to start chemo and blood transfusions.

I wasn't even allowed to go home that evening to prepare for my trip to UVA.  I wasn't allowed to leave the hospital.  At the time, I really didn't understand why, but eventually I would learn.

APL is a fast acting form of cancer.  I was told that 20 years before I got it, everybody who got it was pretty much handed an automatic death sentence because they died from internal hemorrhaging within a month of onset of the disease.  But luckily for me, by the time I got it, they had developed the drug ATRA (all-trans retinoic acid).  ATRA is a mega-dose of vitamin A and it is the main drug of choice for treating APL.  It is very expensive.  At the time I took it, I had to take 5 capsules with breakfast and 5 capsules with dinner every single day.

After I took my first dose of ATRA, I had what they called "ATRA syndrome" and ended up on a ventilator for about a week.  It didn't matter.  I still had to take the ATRA.  The cost of my ATRA alone was over $1,800/month.  Also, there were only 2 patients in the state of Virginia when I was diagnosed.  I was one and another lady in Chesapeake, VA was the other.

I didn't understand how long I'd been sick or what had happened to me and I was very persistent in talking to my oncology doctors and asking questions.  I wanted to know how long I'd been sick with my leukemia.  The response I kept getting was, "Not long!"

Of course, when I had my surgery, Very little was known about the risk factors associated with WLS.  Nobody ever mentioned or even thought about the surgery causing my APL.  The medical world really doesn't know everything about the affects of APL yet, but they're learning.

I looked on ObesityHelp for answers and found none pertaining to my gastric bypass surgery.  There was nothing listed on leukemia at all that I could find.  I saw posts about breast cancer, thyroid cancers, and other forms, but not one on leukemia.  I thought this needed to be something that other patients need to be aware of as many possible types of illness that can occur after WLS.

I wish you well in your journey!

 

Robin~