APL almost killed me because I ignored the symptoms, I'm in 1.5 years of treatment with more to go, please do not ignore symptoms of fatigue, I had flu for two weeks and it seems to get better for a couple days then I was so weak I could not stand my stomach ached like never before. Nobody took my pain seriously but I was dying so don't let anyone keep you from taking care of yourself, its a hard terrible battle but I see a cure in my future I have gone from 10% chance of survival in coma twice, on vent in nursing home unable to walk, then wheelchair, now walking, it was worth it to be here telling you to take care of yourself.
I was sick for almost two years. I couldn’t walk up the steps without nearly fainting, I couldn’t move from the couch, I was barely able to get up and use the restroom. I also ignore the signs! I thought it was depression, and I was just out of shape and lazy! I also had dramatic mental decline, I was literally confused all of the time. I was unable to even complete a sentence, I would often forget what I was talking about almost every time! I echo your comment about not ignoring fatigue! Just go see your doctor always when something changes drastically. I am very lucky to be alive! The only reason I went to the ER was because my vision was completely blurry, I spent many months, pretty much unable to see! I have since we gained almost full version. I’m blessed to be alive! God is good!
Thank you for providing this video. I've been diagnosed with APL and I am about to start maintenance. God willing, I'll beat this cancer and be cured! I have 3 boys to live for. I want to watch all of them grow old, get married, and have lots of Grandkids! Thank you for providing this information. #APL #BeatCancer
I beat it TODAY! lol good timing with your comment! I just had my last arsenic infusion about two hours ago! I beat it! I’m here! Still some recovery to work on, but I did it! I beat it!
@@davidb4756 Conragts happy to hear that! A friend of mine has it so I was just watching a video and reading comments about it. Hope you have a great recovery left :))
Thank you so much! Honestly it’s amazing and heartwarming how the entire world comes together with care in a time of need! In my journey I discovered the real compassion and love from almost everyone, even complete strangers! There is a lot of love in this world and I hope your friend feels loved and supported through their journey! I had three cycles of Atra and arsenic! It worked! If you literally need anything I’m here! I can’t possibly repay the world enough for all those who cares so much for me!
I was diagnosed with APL when I was 13 years old. I went into remission, then relapsed a year later, went back into remission but had to have a bone barrow transplant... Years later side effects of foggy memory, fatigue, etc still effects me. In the last 8 years I've been diagnosed with Osteonecrosis (bone death) of my knees, hips, and left shoulder (due to the treatments, chemo, full body radiation, high dosed steroids). Had two core decompressions on hips, and now waiting for a hip replacement since one CD did not help at all... I'm 34 yrs old.
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Here in Taiwan, I was diagnosed in January this year, started taking ATRA until now, and have 4 cycles of Arsenic infusion (7 days per cycle, 2 cycles in the first month, and 3rd and 4th cycles in the following 2 months). I got the blood remission in the first month and then had molecule remission last month. Will have another 2 cycles of Arsenic infusion in May and June for consolidation therapy. Currently, I am fine and getting better. Hope everyone is well, too. I wonder if anyone could share the maintenance therapy experience here, thank you all. Let's pray to conquer it together.
maintainance Ato 4 cycle 1 Month 5 days a week till 4 weeks Another month rest Atra 15 days on 15 Days rest Till 7 month My son is going through maintaince
@@mrbond4733 Do you mean your son had 4 cycles of ATO during the maintenance step? How may times ATO treatments he has duing the induce and consolidation steps?
@@1968fredc induction 21 days Conduction 23 days we check pbs blood test everything fine after that we did bone marrow test everything is good .no apl found in bone marrow Then 6 days no medicine After that maintaince start as i told you
My mom is diagonal with APML she is going through the ATRA + arsenic trioxide her platelets are not stable and fluctuating every day, she is on constant dosage of donor platelets does anyone have seen similar thing? is this concerning?
Thank you for your time to reply. She is on treatment with chemo and atra tablet for 4 month cycle chemo with 1 month on and off for 8month. She is doing good. Hopefully it all goes by the end of her 4 th cycle. Thanks 🙏👍
My mom is diagonal with APML she is going through the ATRA + arsenic trioxide her platelets are not stable and fluctuating every day, she is on constant dosage of donor platelets does anyone have seen similar thing? is this concerning?
