About APML

Acute Promyelocytic Mylogenous Leukemia, or APML (others call it APL), is a fairly rare type of leukemia. The Stanford Hospital and Clinics providers who treated me tell me they see about 10 cases a year. And they’re a major referral center for Northern California and the rest of the US.

APML, in layman’s terms, is a disease of the bone marrow. For some reason the marrow starts producing immature cells in very large numbers. The blood cells control various functions — red blood cells carry oxygen, white blood cells fight infections, and platelets control clotting and stop bleeding. Since the cells are immature and numerous, they don’t serve their normal functions.

So, someone with APML gets short of breath and becomes pale (lack of oxygen carrying red blood cells), gets infections (lack of white blood cells), and has bleeding and bruising (lack of platelets). I first noticed bruises and shortness of breath. I really knew something was wrong when I found blood clots in my teeth — my gums were bleeding. I didn’t notice any infections, but I likely would if I had ignored the signs. (Look at the posts in the categories in the sidebar for more about my symptoms and diagnosis.) Without treatment, a person dies from internal bleeding and/or systemic infections.

APML had historically been quite fatal, with a very poor prognosis. In the early 1990s providers in Singapore where patients were allowed eastern herbal remedies in western style hospitals noticed that something was causing this usually fatal subtype to go into full remission. It was isolated, and was found to be a derivative of vitamin A. Further testing discovered a treatment for APML, all-trans retinoic acid (ATRA). After more clinical trials and fast-track approval by the FDA, ATRA was brought to the market by Roche (thank you, Roche!) in 1995.

The treatment of choice, which I underwent, was an initial round of chemotherapy, called induction, and treatment with ATRA, which is in pill form. Then another few rounds of lesser chemotherapy are provided in the next round of chemotherapy, called consolidation, still with ATRA. At that time the bone marrow should have been destroyed (the goal of chemotherapy) and replaced with healthy normal bone marrow (assisted by ATRA).

This treatment took what was almost a completely fatal disease to one that 80% of patients go into full remission, with a healthy five-year survival rate. That’s what I was told at the time of my diagnosis. Most of those that don’t make it have a reaction to ATRA. Further research uses, of all things, a form of arsenic as a secondary treatment if remission isn’t successful, with some clinical trials now using a combination of arsenic and ATRA in induction. Currently the five-year survival rate for APML is considered to be almost 100%.

The moral of the story — research into treatments for blood-related cancers do save lives. They saved my life.

Unfortunately, many other kinds of blood-related cancers, including closely related subtypes of acute myelogenous leukemia, still have a very poor prognosis. Support for the research funded by the Leukemia & Lymphoma Society can help save other lives.

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  1. Hi –
    Just thought I’d let you know that I just passed my 10th year anniversary of remission from APML. I was treated with ATRA & chemo in 1997, at Dana Farber/Brigham & Women’s Hospital, in Boston.

    But I still get a little nervous everytime I come across a black & blue mark I don’t remember getting!

    • To Carol Ann
      I was also treated for APML in 1997 in Boston at B & W with ATRA and aresnic at SLoan Kettering (b/c it wasnt approved by the FDA at the time) and an unrelated BMT in July 1998. At the time, I thought I was the only patient with APML and the same treatments in Boston except for one other girl, a bit older than me, who I spent some time with. How are you doing now? Did you see Dr. Stone? I’d love to hear from you. Take Care. Maura

      • Carol Ann and Maura,

        I too was treated for APML three years ago at Dana Farber and Brigham and Women’s. We achieved remission and I have not relapsed, so there is a victorious feeling to be on the other side of it. But I agree – It can be difficult to get any joint aches or bruises. The mind has a way of trying to run away from us. At any rate, congratulations to you both and I hope to get to know you more!

        Josie

  2. Hello, from England, I am just coming up to 6 years since diagnosis and my haematologist has discharged me as cured. He says my blood counts are so normal that nothing is likely to upset them. However, before saying that, yes this cancer is curable, I would like to remember Diana from London who got it about the same time as me. We never met but spoke on the telephone a lot to encourage each other. On one of the rounds of consolidation she got an infection and died. So ALMOST 100% is true. For anyone with the disease reading this; good luck and keep fighting.

    And yes Carol Ann, I too worry about each bruise. What’s more I worry when a member of my family gets one too.

  3. In England they reckon about 70% make it five years. When I was ill with it there were two others I knew with it. Sadly one lady died, not of the cancer but from an infection acquired during chemo. That would about fit with 70%.

    I am now coming up to 6 years and my haematologist has used the C word and discharged me from all care. Up to now like Carol Ann I used to worry about every bruise including ones I could account for. This summer, I have spent a lot of time sailing and collected a fair number of bruises in the process. Do you know what? I find I have stopped worrying now having been given my discharge.

  4. My son was diagnosed today with APML, and of course I am looking for as much information on it as possible. My son turns 3 years old next month. I have not seen much in the way of information in young children getting this… I am optimistic when I read the above mentioned survival rates. If anyone has any further knowledge or experiences about the long road ahead I would much appreciate them.
    … like how to get some sleep would be nice…

    • Dear Aoron
      Iam a physician working in hematology
      i know of a young child of 3 yrs treated in our centre in India with ATRA and chemo who got cured
      all the best
      Dr Harimohan

  5. hello
    im now 18 and i was diagnosed just over 5 years ago and am still here. my remission failed 6 months ago but with arsenic trioxide treatments im back on the wagon. they keep coming up with new and better treatments so im hopeful that someday there will be a cure for this. i opted to not do a bone marrow transplant and just stuck with the chemo, so im back on ATRA for another 2 years.
    i hope your remission fairs well :)

  6. Hello. It was nice to read your story. Our son was diagnosed with APML today after a preliminary diagnosis of AML earlier this week. He is 21 and we are hopeful that he will recover fully. He begins treatment with ATRA tomorrow and chemo on Monday.

    we know we are in for a rough ride, but we are hopeful.

    I wish you the best.

    Annie

  7. Hello
    I am very happy to know about Carol Ann.
    My email address is- drsandeepgulati@yahoo.co.in
    If any one related to APML wants to write me or want to ask any thing,they are most welcome
    DR.SANDEEP GULATI

    • HI Dr. Gulati-
      My husband was diagnosed with APML last week. He is being treated at MGH in Boston with ATRA, Cytaparabine and Idarubicin, along with blood thinners and antibiotics due to clotting and infections.
      You obviously have much experience treating APML patients.
      How many, in your experience, achieve remission? What can you tell me about 5- and 10-year survival rates and rates of recurrence?
      For those that don’t survive, what are the reasons? Is it failure to achieve remission, bad reaction to ATRA or untreatable infection? What percentages of your patients have experienced these consequences?
      BTW my husband is responding well to treatment and has had no bad reaction to the ATRA. His WBC is almost normal.
      Thanks so much for sharing your email address.
      Cara Hafferty
      cuveeconnections@gmail.com

      • doctor Gulati, I”ve sent you a letter on questions of treatment. please, if it”s possible, give me some info on my questions from the letter.
        Iryna.

      • Hi just want 2 tell u I am 6yrs in remission from APML had the same treatment apart from the blood thinners I have done really well am bk at work an so far so gud . I hope all goes well for u an yer hubby mail me if u ever need a chat . Take care lots of luv Ann Nicholl .
        Sent from my BlackBerry® smartphone

  8. hello. my little isaac was one and half year old he was diagnosed with apml it was in 2006 he got atra and some other chemo and transplant after two years he was fine .
    but now again he was diagnosed with apml i hope he gets thru this time
    just to tell every vary lets have some hope for the little angels
    jorge c

    • Hello-Warm wishes, prayers and good karma to you and your son Isaac-may he be cured this time.

      • Hello Jorge-how is Issac?

  9. i was diagnosed with apml in 2005, i also received atra and arsenic among other things. i am happy to be cancer free and healthy! to anyone enduring this illness, i wish u the best of luck! be strong, and know that u will survive. i thank God for the amazing doctors, nurses, and medicine provided to me for my speedy recovery.

    • hi my daughter was also diagnosed on the 15th nov 2009, they are also giving her arsnic and atra, she is comming up to her 60th day 12th jan, when they will take bonemarrow to see what is happening apart from a couple of infections when she was an in patient, everything has been going wellas an out patient, i hope like everyone else, she will be ok.

  10. I was diagnosed in 2000 with APML, and being a true man waited until it was almost too late to see the doctor. But after the ATRA and Arsenic treatments I have been 9 years in remission. Thanks to God and my doctor at Duke I’m still going strong.

  11. Hi from England. I was diagnosed with APL this April (2009), aged 43 having presented with a swollen leg and ‘substantial’DVT.I was on 6 months of anti-coagulant injections aswell as the atra and chemo and it was a fine balancing act at the beginning and I dred to think what could have happened. I have had a negative PCR which means my bone marrow shows no signs of cell mutations and I am back at work. I will be having 3 monthly biopsies but am on no maitenance therapy- the protocol in Leeds, UK, changed during my therapy. Good look to you all. Emma

  12. I was an APML patient. But I am very much normal now.I spent my life just as like others.Last year this time, i was suffering APML and i was damn weak.But now i am working in a hospital (Netaji subhas chandra bose cancer research institute)under my doctor(Dr. Ashis Mukharjee) who cured me and gave me a new life.Now i feel compleatly fit and i dont encounter any short of physical problem in my daily life.

    ARUN BANERJEE
    ADDRESS-KASIPUR(SANER GHAT),DASNAGAR,HOWRAH-711105
    WEST BENGAL, INDIA

    • hi.. im malaysian.to Arun Banerjee, i was APML patient too. i just want to ask since when u felt compleatly fit? did u go thru the maintenaince stage? thanks for answering my question.

  13. hi, im joey garcia from philippines, i was doiagnosed of apml lasr october 2009, i also treated of atra for 3 months and chemo for 6 cycle, now its my last session of my chemo, in the HELPS OF ALMIGHTY GOD, and doctors, i will survive this kind of illnes, now im filling good partialy im going to works, KEEP PRAYING ITS CAN HELP,.

    joey

  14. hi ,we are from england,my 8 year old daughter was diagnosed with apml 10 weeks ago,,she has just finished her 2nd lot of chemo and atra.altho she is not yet in remission i am still thinking positive as she is doing so well…she has to do this…i would love to hear from other parents,children who have gone through this devasting time x

    • hi leanne
      im a parent of two daughters one with apl and the other with hodgkins lymphoma, although they are not young like your daughter they are 28 and 21, both diagnosed within 25days of each other, and i can relate to the anxiety of what you are going through
      we also live in england cumbria, my daughter with apl is being treated at freeman hospital in newcastle, she was diagnosed on the 15th of nov 09, she is on a trial her treatment is arsenic and atra this is chemo free, and she got into remission on day 60 of induction, she has another 2 cycles of consolidation to go through, which will take her up to end of july, then she will go on maintenance, as the docs all say if your going to get a leukemia this is the one to get, very treatable, im sure your daughter will do fine its a long haul but we have to stay positive, when my girls were diagnosed i thought it was the end of the world, i feared the worst but both are doing very well my youngest has chemo and has 2 more treatments to go, she has lost her hair and feels tierd for a few days then picks up and is out and about as much as she can, what part of the country are you ? please write back if you want to talk or chat im here.

    • Hello – we are from Malaysia. My 8 year old son was also diagnosed with APML – Feb 2010 – he is in remission now. We are now in maintenance phase. He is taking Methotrexate weekly, Mercaptopurine daily and bactrim as antibiotics weekly. ATRA every three months. He is doing very well. We were devastated but now we are very hopeful and pray he will make it to the 5 years mark. Be strong. My email is pspaulinelee@gmail.com.

  15. My husband was tentatively diagnosed with leukemia this past Sunday and preliminary tests indicate APML. He is being treated at MGH. We will know for sure tomorrow. It is wonderful to hear that so many people have achieved remission. You are all now in my thoughts and prayers and for those of you still fighting, don’t give up.
    With love from Braintree, MA

    • Hi Cara,
      I hope your husband is doing well. I’m amazed to hear so many stories about APML. I was diagnosed with APML at the age of 23 and also treated up in Boston. 13 years later my life is in full swing and very much back to normal! I underwent ATRA, chemo, arsenic and a bone marrow transplant at DFCI and B & W. I was also the 12th person in this country to receive arsenic on a trial (in 1998) before it was approved by the FDA. It was a long haul, but everything worked out fine. They have come so far with the research and treatments now! Good luck with everything. You and your family are in my thoughts and prayers.

      • Hi Maura-First of all. congratulations on 13 years of being “cured”! My husband is doing very well-he spent about 5 weeks in the hospital, had one week of chemo there (cytarabine and idarubicin) and is now in the middle of his arsenic therapy. This will be followed by two rounds of outpatient chemo (Idarubicin)-then he is done! He is very lucky because after his first round of chemo he was in the third level of remission-the correct term escapes me-but it means that his DNA is no longer making the protein responsible for the genetic mutation that causes the APML. There isn’t much in the literature regarding survival rates beyond five years, so hearing form you is wonderful and I will pass this on to John.
        Thank you and have a wonderful rest-of-summer!
        Cara

  16. Hello there, I am from Australia. I was diagnosed with APML in October 08. I was receiving my treatment at Brisbane Private Hospital by a wonderful team of Doctors & Nurses (my angles). From my first round of chemo & ATRA I acheived complete remission. I had my other rounds of chemo that finished in the January 09. Iam still on my maintenance programme & doing well. I still worry that the monster will return, as you do, especially when its time for a bone marrow test, but I try very hard not to think about it. Good Luck to you all & God Bless.

    • Hi, I too am from Australia and was diagnosed 22 Jan 2008 with APML. Sudden bruising and bleeding gums made me head off to my doctor. Hospital next day. After initial treatment with idarubicin, Arsenic and ATRA, went into Complete Remission after about 30 days. Followed up with more Arsenic and ATRA, still in CR. Just about to finish my trial in a few weeks, then no more chemo tablets!! Feeling fine, life is good, but will never be quite the same since diagnosis. Relapse is always in the back of my mind, but somehow I know that I have won this fight for good. Thank you to the Alfred Hospital medical staff in Melbourne, without whom I would not be here.
      To newly diagnosed people….my two towers of strength were my trust in myself and my doctors.
      Best wishes to everyone x

      • Hi Jodie, My name is michelle smith I would like to ask about the arsnic treatment you had. The reason I ask is my hemo doc said if i have a relapse that was the treatment I would would receive.I am still on my atra every 12 weeks & other chemo tabs at the moment & doing fine but you are correct in saying you will never be the same again since diagnosis.How are you feeling since you have stopped taking your chemo tabs, do you have more energy?I hope you are doing ok!& best wishes.

      • Snap Jodie! I was diagnosed the day before you and was treated at Box Hill. (Can I ask who your doctor was/is?) I too have finished my medication and feel so much better for it. I still get tired, but that may have something to do with the effect everything has had on my liver (not to mention the effect from the amount of “beveridges” consumed during my celebratory period when I got off the pills :S) Nowadays, if I bump myself I say out loud “Ooooooh, that’s gunna bruise” but my heart still skips a couple of beats when I find one that I don’t remember. I have nothing but the fullest confidence in the amazing doctors and medical staff who have got me this far and assure me that I can go on to lead a full life from hereon in. I’m actually writing a book about my experience and it is so cathartic! It brings back some painful memories but also some funny ones as well. Maybe one day I’ll finish it and have it published. Maybe :)

      • Hi My daughter also is being treated by staff at the Alfred Hospital Melbourne. She is now an out patent being treated on ATRA and arsenic tri-oxide. Induction was achieved a month ago and she is on round one of Consolidation with a month on, a month off then another month of chemo. Apparently now there is no maintenance protocols and after a successful bone marrow after two rounds of consolidation, the patient is considered cured. Just had that said by her haemo specialist yesterday when I was with her in HOC….. it is a new protocol regarding APML treatment…. I cannot praise the professionalism, care and *love* the staff have shown my girl and the consideration towards her family. Also the Head Haemotolgist, Steven Ting told us that the Alfred has 100% remission rate and 100% survival over 5 years! that is so encouraging! Blessings to you all…. keep fighting!

  17. Hi my name is Cynthia and I was diagnosed with APML in November 2008. Big shock as I thought I was was tired and lazy. Until my mouth filled up with blood clots and ulcers and I could notlift my head from my pillow. I had chemo and Atra and I am still on the maintanence program. I have a bone marrow aspiration every 3 months. I was in remission after the first round of chemo and now feel free of it. But yes it is in the back of my mind”what if it comes back”. I still get tired and grumpy as the pills affect my Liver. It is good to read all the positive comments above. Here”s to all of us.

  18. Hello,

    I am from England and I was diagnosed with APML July 13th 2009. I can gladly say I have been in full remission since November 2009. I am 38 now, was 37 at the time. Its a relief to come across this site and read about survivors of this horrible illness. The advice I would like to give to people is to be positive and don’t give up. The treatment is horrible but its worth it. I could say absolutely loads, if anyone wants to email me, please do, peachydezell@blueyonder.co.uk.

  19. My name is Danielle, and I was diagnosed with APML on April 7,2008. I am now 19 years old, so at the time I was 15 and getting reeady to turn 16 in August. I was treated with Arsenic and Atra. I finally got completly off medicine in October of 2009. I have back problems mostly because of all the spinal taps I had. I was not able to receive the regular spinal taps, I had to have the Lp (Lumbar Puncture) under the big machine everytime I needed a spinal tap done because that was the only way the doctors could get a sample of my bone marrow, but thankfully I was put to sleep everytime. I was told by my doctor that I had a rare case that was written about in a book (but I was unnamed). I had a great amount of cancer cells around my optical nerves, so for a short time I couldn’t see while I was in the hospital. I had to have radiation, chemotherapy, and physical therapy because I lost a great amount of strength. I lost alot of weight and at 1 point in time I could not eat because the chemo caused me to have mouth sore and my throat was really sore and I couldn’t keep anything down. I was amazed by how the little kids stayed so positive. I remember this one little girl that had both leukemia and ADD and she brought me a pack of gum. The kids at Riley had so much positive energy which gave me the motivation to stay strong. I was in the hospital (Riley Children’s Hospital) from the time I was diagnosed to sometime in June, then I stayed at the Ronald McDonald House for a while. Thankfully I did not have to get a bone marrow transplant and I am prying that my cancer doesn’t return. I vist my doctor every 6 months now.

  20. Hello Amanda,
    How do you do.I read your reply.In the year 2009 i was a APML patient. But now in 2010 i don`t have any problem and i spent my life normaly.Now i am a student of M.Com. In the morning i teach some student then i go to my job. In the night i prepare my lesson.Whole day i am busy.Now i spent my life just like others.I want to thank my parents and my doctor Ashis Mukherjee. Today is my 24th birthday and now i have a bright future.
    My Contract No. 9239583343
    My Address= Kashipur (saner ghat), Dasnagar,
    Howrah = 711105, West Bengal, India,

  21. Hi,

    congrats for all those are completely cured. iam udergoing treatment for for my 7th relapse, with arsenic (for the 3rd time). Have tried chemo, Atra for previous relapses. love to hear abt treatment options

    • Dear,

      May god Bless You.

      It is unusual to hear about 7th relapses, may be others had no courage or will to share this information. My wife is undergoing treatment for 2nd relapse at AIIMS, New Delhi. She cant tolerate Arsenic, therefore, She is being given Daunamycin with ATRA. Her first relape was in June 2010 and the remission after the first episode lasted for about three years.
      Would like to have your feedback about your five relapses and treatment. my email is pathaklawyer@rediffmail.com.

      regards

      • God bless both of you and your families! My thoughts are with you all and I hope to hear about remissions for both Nitha ans Sanjai’s wife.

      • Hi Sanjay,

        How is your wife doing? May god bless her.

        You are right. I have been surfing the net to see if there are cases like me with multiple relapses but never found much. Maybe iam a rare one.

        You are true about the courage part. Even iam worried to share my experience thinking it might loose other’s confidence.

        I was diagnosed when i was 11 yrs old. Now iam 28yrs old and a doctor. :)

        I have finished my induction with Arsenic and my PML RAR is 0.001. Now iam on Arsenic maintainance. Keeping my fingers crossed.

      • Sanjai-How is your wife doing?

    • Nitha-I hop this email find you doing better-let us know.
      Cara

  22. Been 3 weeks since my partner diagnosed with apml. She had all same symptoms article has given me more insight to her illness as because she been so critical medical staff are not saying to much. Thanks for posting given me hope made me feel bit more at ease chemo stage 1 done 3×4 attra (and the test) per day. Dedicated to my pumba get well soon everything will be ok love and miss you here for you always xxx

    • Hi J-
      Just checking in to see how your partner is doing. This time last year I was just about in your shoes-my husband is in the middle of his maintenance treatment; he has been in molecular remission since his induction, so we are blessed. May you and your partner be as well.
      Take care, Cara

  23. My daughter aged 13 was diagnosed with APML on 19/6/2010 and is now on maintenance therapy and is back at school. ATRA syndrome at first but nothing on subsequent ATRA courses. Literature is still pointing to complete remission after 2 years of maintenance so fingers crossed. Good luck to everyone else who is newly diagnosed (it is a terrible time for the first 6 months) but it should get much better after that.
    David

  24. I posted to this site about 2 years ago when my son was first diagnosed. It was a scary time. There has been much to consider since then.

    My son underwent induction therapy of anthracycline and cytarabine then consolidation of AT0 and ATRA in 2009 with ATRA maintenance through 2009 into 2010.

    A routine blood test in September, 2010, showed relapse.

    Since then my son has underwent a second round of ATO for 10 weeks then underwent an autologous stem cell transplant.

    We are T+46 days into the transplant. He has been struggling with TEC (toxic erythemia of chemotherapy) for the past four weeks but we are moving forward.

    We are hopeful.

    • Hi Mom-Hang in there-my thoughts and prayers are with you and your son-statistics are on his side. Here is to a full recovery!
      Cara

  25. Hello,

    I was dxed at 28 & treated at BWH & Dana-Farber in Boston…was VERY ill at the induction period with the ATRA etc…lost the ability to walk…had to relearn & was on a clinical trial for over 2 years…BUT ! I have since been blessed with two wonderful kids & have been in remission for over 7 years ! It was NOT an easy road at times….but I’m.still.here !!! I also received upfront arsenic as I was on that clinical trial. GOOD LUCK to anyone out there who is going through this or (worse !) is seeing someone they love go through…please,please let me know if I can be of help !

  26. Hi all,
    Was diagnosed in oct 2006. 17 days before my babys first birthday. Missed that but so worth it to spend a lifetime of birthdays together. Had to leave a little 3 year old too but grateful for a fabulous husband, mother and father plus many friends who all helped and made life so much easier. I am writting this to give hope to many young women. Despite not being able to have eggs collected as i was too ill and being told not to hold my breath when trying to have another child. Our family 8 mths ago was blessed with a beautiful baby girl. The final piece to our family puzzle. As she fast approaches her first birthday my 5 year remission anniversary is not far behind.

    Good luck to all those who are on the journey, my thoughts and prayers are with you. Please do not think this is the end of life as you know it but the beginning of something much greater. Hope is the greatest gift one can have

    • Hi Michelle-Your outlook on life is very inspiring-be well!
      Cara

    • Very inspiring to hear your story. God Bless you and family :)

      Love

    • OOO it’s so hopefull to read it! If God will allow me to survive all that fear and cope with relapse, I’ll do my best for my kids to be the happiest or to give birth to a newlife, if that possible after translant)))

  27. My 86 year old grandmother was diagnosed Friday, June 24th. She has started the atra and we are learning of the chemo possbilities. Anyone with any experience with APML in the elderly. We are very concerned about secondary infections given her age. ~Heidi

  28. I was diagnosed with apml the day before my 12th birthday, and I have been in remission for 4 years. I have always wondered if there are any long term effects from the chemo treatments. I took the ATRA, ARA-C, Methotrexate, bactrim, and vesanoid (tretinoin”). Can anyone help me?

    • Please write at present what is your physical condition and what are you doing now. Also write your daily diet maintain.

  29. my name is Siobhan, 33 yrs old. from Boston, was diagnosed april11th ’11. after noticing crazy bruises and all kinds of blood “blisters” inside my mouth, I knew “something” was wrong. After 2 trips to the ER, they said it was leukemia. I freaked. Then they tried to tell me it was the “good kind”APML. But it has been almost 6 months. I started with ATRA, then I did 5 week rounds of 5 day a week arsenic. and now I’m starting 3 days a week, 3 weeks of “donarubison”?…so far so good. I get treated at MGH Cox cancer center, and the nurses are wonderful. Hopefully, by April I’ll have real hair back and this will all be in the past! I remember being sooo sick after a month in the hospital, but now my life is normal. I work a little, take great care of my 5 year old girl and work hard at living a normal life. My only fear..one day way in the future..they’ll tell me all this chemo..has brought on a new cancer….One day at a time tho :)

  30. HI Siobhan-
    My husband was diagnosed with APML in May of 2010 and is receiving treatment at MGH as well. He has been in remission since his inpatient stay last spring and is finishing up the maintenance phase of treatment. You couldn’t be in a better place than MGH! I will be thinking of you a lot today…..

  31. Hi there….all I can tell you is that I have been in Remission since 2004 ( I was 28 when dxed & went in to Remission a month later) & all is going well….I am very lucky….but the prognosis is good …& like you say, it IS one day at a time….& life is sweet…..as hard as all of our roads have been we’re SO lucky to be here. GOOD LUCK to you…..if ya ever need to chat you have a lot of friends here !!! Thinking of you.

    • 4 years ago my treatment was completed. Now i am feeling head attacked , Please tell me brain mets is possible
      Arun

  32. Hi my name is Hayley and I was diagnosed with APML July 2008 and treated at St Vincent’s Hospital Sydney, Australia (the Nurses and Doctors there are fantastic). I was on the trial of Idarubicin, Arsenic & ATRA followed by maintenance and just reached my 4year remission mark. Other than getting tired a lot more easily, I have had no real side effects after treatment. However I did have migraines, was quite depressed and felt like I was hungover when going through maintenance but since I’ve been off the treatment that has disappeared.
    To celebrate my 4 years in remission (or just plain crazy!!) I am running a marathon on the 16th of September and I am currently training with can too (raises money for cure cancer Australia), so there is light at the end of the tunnel.

  33. Just want 2 say I had apml in january 2007 . I am still in remission and only have to go to hospital once a year . I would like to know if that would be classed as cured .

  34. hi, everybody. i was diagnosed with apl in july 2011. i was awfull, HGB-41, WBC- 16, PLT-10!!!! but they saved me. 13 months i was in CR!!! had fun time again with my two kids, but now i’m relapsed(((

    • Dont worry Irena, what drugs are you taking now. Wish you all the best. Be brave.

      • thanks for support, now I have treated Ara-C low doses+idarubicin+ATRA. the day before yesterday ara-C was stopped the day yearlier cause WBC 0.9. Now I am waiting what doctors say next and pray God for the 2nd complete remission.

  35. thanks for support, now I have treated Ara-C low doses+idarubicin+ATRA. the day before yesterday ara-C was stopped the day yearlier cause WBC 0.9. Now I am waiting what doctors say next and pray God for the 2nd complete remission.

  36. Hi there ,

    I have APML also and am 7 weeks into the 2 year maintenence treatment I feel sick all day everyday from the medication. Did others suffer from this for the full 2 years ?

    • Hi Tina-My husband, who received treatment for APML in Boston, MA, had one year of maintenance that initially wiped him out. His doctor made what seemed to be a few minor tweaks to his regimen – he slightly reduced the dosages – and it made a huge difference. Good luck – you have come so far and there is a light at the end of the tunnel! – Cara
      PS-He has been in remission for almost 3 years!

    • Hi there I’m sorry 2 hear yer feeling so sick all the time I pray u get well very soon . I am 6yrs in remission from APML , I didn’t have the treatment yer talking abot . Its an awful illness plz keep in toch lots of hugs Ann xx
      Sent from my BlackBerry® smartphone on O2

  37. Hello…I was diagnosed back in April 2004 when I was 28 & was also on the maintenance Program….I did sometimes feel tired/lousy but I do encourage you to speak with your dr. as maybe the dose can be tweaked ? Are you on Atra ? that took me awhile to get used to but then I did & ,for the most part, I did well on it. I have been in Remission for 8 years & was lucky enough to have two wonderful kids following all of this….there IS light at the end of the tunnel ..please believe me & hang in there !

  38. I was diagnosed with APML on May 2, 2013. I was admitted to the Smilow Cancer Hospital at Yale New Haven in CT later that day. The first few days were a blur. I was started on Atra that first night with Arsenic started 10 days later. It has been a little over 6 weeks and on June 14, I was told I am in remission. I am now out of the hospital and will be starting the consolidation part of the treatment as an outpatient. My doctor told me this will be for the next 8 months.

    I am very thankful for the positive stories shared on this site. I am remaining very positive and upbeat. I have been lucky not to have any major side effects from the treatment.

    I look forward to being able to post a successful outcome in a few years. Stay strong and god bless everyone fighting this or any other types of cancer.

    • Just a quick good news message. On February 13, 2014 I was told that I am in complete remission. My doctor’s exact words were, “Bone Marrow Biopsy came back completely clear down to the molecular level.”

      I will be having my port removed on 2/27 and it will be just blood work every 3 months for the next couple of years.

      So excited to be starting my new life.

      • That’s SO great!!!

  39. GOOD LUCK to you…..thinking of you !

  40. Hi, your story had just brought tears to my eyes, tears of happiness that is.
    My 19yrs daughter was diagonosed with APML 4 weeks ago and still in hospital receiving treatments.We are coming up to the end of our 1st cycle and apart from being nauseous 24/7 she’s showing great signs.
    Wish you good health x

  41. My 3 year old daughter was diagnosed with apml on 12/9/13. It rocked mine and my wife’s world. It all happened so fast..She is currently on round 2, just completed first half, 5 weeks on, 2 weeks off..had a 3rd marrow biopsy yesterday. Hoping that she is in remission.. It’s nice seeing some hope on this page. Thank you.

    • My 3 year old daughter was diagnosed with apml on 12/9/13. It rocked mine and my wife’s world. It all happened so fast..She is currently on round 2, just completed first half, 5 weeks on, 2 weeks off..had a 3rd marrow biopsy yesterday. Hoping that she is in remission.. It’s nice seeing some hope on this page. Thank you. Donation website is .. http://www.gofundme.com/5nvwvw

    • This must be SUCH a hard time for you & your wife…please be assured there is hope….I have been in Remission for almost 10 years!

  42. My husband has APML in 2010 and is now a survivor! I can only imaging how hard this is on a little girl. There will be a positive end to this – the prognosis for APML is generally excellent. xoxo

  43. I had apml in 2007 was doin really well , but then in april 2013 i took beast cancer , had a masectomy chemo and radiotheraphy am gettin there slowly xx

  44. Hi there , it must be reallyhard on your family i will pray for you , tge , i am 7 years in remission and .
    Lots of love from Belfast …Ann xx

  45. Hi Everyone, Wow so many APML’ers :( We are from Australia and our son (now almost 8) was dx in June 2012. So far he is on maintenance therapy and has recovered really really well. We have been really fortunate that apart from a few hospital admission for febrile neutropenia, the only other problem has been benign inter-cranial hypotention. That has been managed successfully with Diamox (and with no long term problems with vision). I would like to wish everybody dealing with treatment all the best with their journey and wish everybody great health for the future.
    Xx

  46. Lots of prayer to your family , as i said i am 7 years in remission fro apml , but took breast cancer in april 3013 , i have had my masectomy , more chemo and radiotherpy , but so i am doin well .
    Stay stronge lots of luv xx Ann

  47. Hi everyone. I’m from the UK and was diagnosed in Feb 2012 aged 42 after visiting the doctor with a persistent cough and bruise. Was admitted to hospital that night for 5 weeks and was treated with chemo & artra. I’m so grateful to the NHS for the care and treatment I received. I’m now 2 years in remission and feel great, except for the odd bouts of fatigue. My check ups consist of bmbs every 3 months. I wish fellow apl patients the best of health.

  48. Hi everyone, I was diagnosed with APML in August 2013, 6 days short of my 38th birthday and I am about to start my last round of consolidation. I presented to the hospital with platelets 13, WBC 1.3 and haemoglobin 84. My treatment has been ATRA and arsenic trioxide. I received complete remission roughly around 40 days into induction. Consolidation has been 4 weeks on, 4 weeks off.

    I am from New South Wales in Australia and would be happy to hear from anyone who has had APML as it is very rare you dont get to speak to anyone about their experiences.

    I have a bone marrow boiopsy coming up which will hopefully show molecular remission.

    • Hello Andrew. I was diagnosed with APML in May of 2013, 3 days after my 43 birthday. I too went through the same treatment you are in, with induction treatment lasting 40 days and consolidation treatment of 4 weeks on 4 weeks off ATRA and Arsenic. I finished my treatment in January of this year and found out after another bone marrow biopsy that I was in complete molecular remission. From here on in it should be just blood work.

      I was treated in New Haven, Connecticut, USA. I also had no other patients to talk to there who was going through the same battle. I did meet a lot of wonderful people, but I agree with you that there is a need to talk with someone in the same situation. I do get a lot of strength from reading the post on this site.

      I am hoping that everything comes out good for you after your biopsy. If your treatment and experience was anything like mine you will be fine for years to come.

      Jose

      • Hi Jose

        Thanks for your reply. I’m glad to hear that everything is going to plan. It’s great to hear from someone else who is/had been treated with the same medicines.

        Thanks,
        Andrew

  49. Hello….I was diagnosed almost a decade ago when I was 28. I received Chemotherapy as well as Arsenic & ATRA first at Brigham & Women’s Hospital & then at Dana-Farber Cancer Institute in Boston. I would be more than happy to answer any & all questions you have!

  50. Greetings. Thank you all for being so brave and sharing your stories. My 26-year-old son was sent to the ER with WBC 1, Hemaglobin 4, and platelets 3 on April 5, 2014. His doctor started him on ATRA the next morning and added arsenic once the bone marrow biopsy confirmed APL. He’s on day 15 (of 60) of treatment and his numbers have improved but are fluctuating. He’s also having an allergic reaction to something that is being treated with benadryl and atarax. His white blood count dropped again this morning to 3.5 and they gave him another transfusion. I’m worried that the treatment is not working. Did anyone experienece ups and downs during the initial phase of treatment or do the successes have a continuous improvement?

    • Hello Karen.

      When I was first diagnosed my blood counts were not that low but after being treated for a couple weeks my counts dropped also. My counts dropped low enough where everyone needed to wear masks and I had alot of restrictions when it came to contact with other people. As far as reactions I was pretty lucky. The worst ones I had were to the platelet transfusions. My doctors told me that the toughest time was going to be the first 14-21 days of the induction part of treatment.

      I hope this helps because I saw how my family and loved ones were very worried and concerned for me during that time.

      Thoughts and prayers coming your.

      Jose

    • Hi Karen,

      My experience was the white blood cells would go up and down for the first three weeks or so and then they stayed very low for a period of time. I also had to receive regular transfusions of red blood cells and platelets. My platelets were the first to recover around the 4th week then my haemoglobin and the last thing to recover was my white blood cell count which was around day 40.

      Everyone’s journey is different so I hope your families journey goes well. It’s an emotional roller coaster.

  51. Hi Karen, I experienced a lot of side effects from the ATRA for the first three weeks or so, but once I turned the corner everything slowly, but surely improved. I am so sorry that your son and all of you are going through this time. I know it’s very,very scary ,but there is light at the end of the tunnel.

    • Thank you, Jose. He’s made it to day 18 on treatment. Aside from some hives and fluid retention, he’s feeling pretty well. We’re hoping he may come home this weekend.

  52. Andrew, your experience sounds similar to what we are seeing. The nurses were telling us that his white blood count might spike to a dangerous level and it did climb for several days though never above the normal range. Now it’s very low again, as are his platelets. Even so, he’s feeling all right. It’s frightening how many transfusions he’s had! I am so grateful to all the generous people who donate blood.

  53. Thank you, Ber. My so is being treated with ATRA as well. And arsenic trioxide. We received a letter from our insurance company today that they will not cover the ATRA. Tomorrow should be fun!

  54. I am INCREDULOUS here Karen re: the Insurance Co. refusing to cover ATRA! …PLEASE let me know if I can be of help….I will get in touch with any Congressperson or Senator to tell them my story & how vital the meds were to me…I am so very sorry…as if you don’t have enough to deal with right now! I was on ATRA first & then also received arsenic trioxide…..a decade later I am healthy with a beautiful five year old daughter and four year old son. I meant every word…I will do anything should you need someone to vouch for the necessity of his treatments. You are not alone!

  55. Truly, I’m touched beyond words by the kindness of strangers. Thank you, Ber! Jeremy will continue on the treatment for sure. I’m thinking the ins. co. will come around – we just may have to have some heated conversations. BUT … I appreciate the offer and may just take you up on it if things don’t go well. And congratulations – sounds like a beautiful and treasured family!

    • Well, if you do need anything (& I sure hope that they see sense & you don’t!!) then please let me know . I am sure I speak for many here when I say we are more than happy to at least be able to answer any questions you may have. Take care…thinking of you & your family.

  56. Hi.. Im an apml patient too, 24 yers old.. I got diagnosed last january 2014..my heart really sank upon hearing it. Go through chemo for the past 4 months. my counts really dropped as expected..I am now waiting for the result of the bone marrow aspiration for the maintenace therapy .. Do u guys have some do’s and dont’s during ths stage? :))

    • Hello Scarlet. I am happy for you to make it this far.

      I finished treatment in January 2014.

      I did not have many restrictions. One of the things I was told to avoid was direct sunlight because of the ATRA. Also the ATRA gave me really bad headaches so I was always taking something for them. If I did not get in front of them it made the day really long.

      I tried to avoid anyone that was sick or had a cold, even though your blood counts may be fine you may react a little differently when going through therapy. I did end up getting a cold towards the end of my treatment and it lasted for about 6 weeks, was not fun.

      On the positive side, I tried to get back to doing what I was doing before. It was a little slow going due to having lower energy levels. I did go back to work after the first round of therapy.

      The best advise I can give you is to take things slow. Everyone’s journey is a little different.

      Hope this helps.

      Jose

    • Hi Scarlet, sorry to hear about your APML. Everyone’s journey is different, for me if I felt up to something I did it. Obviously if blood counts are down you need to be a bit more careful.

      For me I finished my treatment 4 weeks ago and got the all clear with molecular remission. I wish you well.

  57. Thank you for the reply jose.. It means a lot to me. I got no one to talk to with the same illness as mine.. Im still very anxious to my health .. I’ll have my appointment with my doctor this sunday for the bone marrow’s result.. U went to work already? For how long you’ve been resting after the treatment then going to work? Care to give me more advice? And by the way.. U have any contacts? Thank you!

    • Hi Scarlet,

      It is now Sunday and I hope you got good news today from your doctor.

      I know what you mean by not having anyone to talk to. When I was going through all the treatment last year I wished there was someone to talk too one on one about what was happening who had been the through the same thing.

      My email is jlopez86@tvcconnect.net if you would like to talk more in depth about our experiences.

      Jose

      • The doctor told me the results is normal already.. He gave me ATRA for 15 days and will go back to him again after 2 weeks to see the result on how my blood reacts with the atra and will then continue with my treatment… If i will go to work.. Will i put my health to danger again?

  58. Congratulations.

    I went back to work full time right after my first round of maintenance treatment. After that it was tough during the 4 weeks on treatment due to having to go for 4 hours everyday, but I made it. Some of my doctors were amazed that I did go back full time. As for my health it did not hurt me in anyway. I am lucky that my side effects were not that severe and that I tolerated the medications well. I did feel rundown and my energy levels were not what they used to be but my employer did what they could to help.

    Hopefully your job is not that strenuous and they work with you.

    One added benefit was that when the treatment was over the transition was a little easier due to having a routine in place.

    Hope this helps.

    Jose

    • Oh reaally?? Well . Good for you jose.. X)) il tell u again what will be the result after 2 weeks.. Hmmn, after hearing ur at work already, perhaps i may try too.. Hehe.. But my work will be like 8 hours.. OhGod!

  59. Camping one weekend, diagnosed with APML the next Tuesday. Surreal! !! Seven weeks in patient, too many transfusions, plates, and reactions to most daily ATRA therapy along with a long induction of arsenic treatments When I finally went home I was weak exhausted and struggling. 16 weeks of consolidation treatment and I was finally given the green light to breath again Thanks to many friends, great kids and wonderful doctors I am a survivor. It is hard to believe that for the last 10 months I was so sick but I guess I was. I only hope and pray i have the long term remission rates that you have

  60. I finished my last cycle in March of this year. I was diagnosed with APML in June 2013. I am currently in Remission thanks to my amazing Oncology Team at Dana Farber & Brigham & Women’s Hospitals, Boston MA. Tomorrow is my 5th Bone Marrow Biopsy. It’s amazing how far science has come with this particular blood cancer. I am confident that my results will show No Leukemic Cells-Don’t get me wrong, it’s always in the back of my mind but the Doctors & Nurses do their job and we as survivors must do ours by leading healthy lifestyles and remaining positive. To all who have dealt with this disease or have a family member or friend dealing, I wish you Health, Happiness, and Peace. Thank You for listening. Joelle Driscoll 💪

  61. Hello all, ten years after & I am beyond grateful…& hopeful/positive that I will live to a ripe old age to spoil(& or annoy!) My grandchildren & maybe great-grandchildren! Hoping only the best for us all…we deserve it !

  62. It is so uplifting to read all these positive results. I was diagnosed in 2008 and still kicking :) Unfortunately due to the treatment, it has affected my genetic make up and I have myelodysplastic syndrome (Myelodysplasia) which to date has no cure other than a bone marrow transplant. I had one lined up but for whatever reason, he didn’t work out. I have full faith in the fact that somewhere in the deep dark bowels of a research laboratory, scientists and experts are working away at developing a tablet that will only have to be taken once a day to keep the nasties away. In the meantime, even though the treatment I have every month is not pleasant, it’s bearable and doesn’t affect my life too much and on the whole I enjoy pretty good health. It’s more of an inconvenience than anything else :) but it’s all still better than the alternative! Carpe diem everyone!

  63. I was diagnosed in October 2012 and treated by the angels at Beth Israel in Boston. Vy main treatment was ATRA combined with five months, off and on, of chemo. I was diagnosed as being in remission that following April. I am feeling great and told that my chance of relapse is 2% I will take those odds! I feel blessed that I had such a treatable form. A dear friend was diagnosed with ALL at the same time as me and he is not doing well. Best to.you all.


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