Acute Myeloid Leukemia (AML)

Here’s a free collection of resources on Acute Myeloid Leukemia (AML)- blogs, support groups, first-hand experiences and advice from people who’ve had Acute Myeloid (Myelogenous) Leukemia, etc.

*Resources about other types of leukemia: ALLCLL, CML.

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Acute Myeloid Leukemia Blogs

Here’s a list of Acute Myeloid Leukemia blogs- written by people with AML, or about AML.

****Email to submit your blog to this list.***

Dianne 2017
Grace Ward 2017
 Ronni Gordon>  2017
Allison Eberhardt 2017
Anna Mamwell 2017
Brooke 2017
David Thornhill 2017
Maureen Staudt 2017
Superman Sam 2017
Be The Match 2017
Dominic’s Journey With AML 2017
Little Air Bear 2016
Elisha Searl 2016
Alice Byron 2016
Amy Marsh 2016
Constanze’s Leukaemia Blog 2016
Cures Rock 2015
Deb Hubsmith 2015
Cancer Is Not An Option 2015
Spud’s Bug 2015
Julie’s Blog 2015
Muhammed Shahid 2015
The McKay Family 2015
Rooster’s Blog 2015
The Plog 2014
Erin Bodechon 2014
Shelley Nolden 2014
Jade Amarah 2014
Savannah Rollins 2014
Lexe Kicks Leukemia 2013
Healing Hunter 2013
Steele Strong 2013
Jaymun’s Journey 2013
Come What May, And Love It 2012
Tanner ~ Forever Strong 2012
Aubree’s Fight 2012
Hope Renewing 2012
Kimberly Nelson 2011
Mar510 2011
Oliver Trasen 2011
Our Little Jessie Bee 2011
Red’s Daily Dish 2011
Cancer: A Spiritual Journey 2010
Erica Murray 2010
Amy Wilhoite 2009
Brad Aspel 2009
Amy’s Army 2009
Seattle Times 2009
Ted Wilcox 2008
Cancer Talk 2006

Acute Myeloid Leukemia Support Groups

AML Support Groups On Facebook

  1. AML (Acute Myeloid Leukemia) Group (3,262 members)
  2. AML Leukemia Survivors Group (1,594 members)
  3. (AML) Adult Acute Myelogenous Leukemia support group (986 members)
  4. AML (Acute Myelogenous Leukemia) Support for Spouses/Caregivers Group (280 members)
  5. AML Acute Myeloid Leukaemia Support Group (242 members)
  6. Acute Myeloid Leukemia Info Share Group (178 members)
  7. AML Network – Leukaemia Foundation Group (137 members)
  8. AML Support Group (117 members)
  9. (AML) Fitness Page Group (85 members)
  10. ALL/AML LEUKEMIA Support Group (80 members)
  11. A.M.L Cancer Support Services Australia Group (27 members)
  12. Acute Myeloid Leukaemia UK AML Uk Group (5 members)
  13. Acute Myeloid Leukemia (AML) Group (4 members)
  14. Acute Myeloid Leukemia Group (4 members)

Google Plus AML Support Communities

  1. none found yet.

Other AML Support Groups And Forums

  1. DailyStrength Acute Myelogenous Leukemia (AML) Support Group (116 members, 1,085 members)
  2. Acute Myeloid Leukemia Support Group (18 members, 17 questions)
  3. Leukemia & Lymphoma Society Acute Myeloid Leukemia Forum
  4. CancerFocus Acute Myelogenous Leukemia Forum
  5. CancerCompass Leukemia (AML) Discussions
  6. MDJunction Acute Myelogenous Leukemia Support Group
  7. CancerConnect Leukemia Community
  8. Leukemia Forums
  9. Cancer Care Blood Cancers Patient Support Group
  10. HealthBoards Leukemia Message Board
  11. Cancer Research UK Cancer Chat
  12. eHealth Leukemia Forum

General Leukemia Support Groups

  1. Leukemia Survivors Group (4,647 members)
  2. Cancer Survivors and Supporters Group (4,384 members)
  3. The Leukemia Foundation Charity Auction Site Group (2,764 members)
  4. FadlCarda Leukemia Foundation Group (1,085 members)
  5. Leukemia & Lymphoma Society-Woman of the Year Campaign Fundraiser Group (527 members)
  6. Leukemia & Lymphoma Society of Canada (Westisle Fund Raiser) Group (454 members)
  7. Leukemia & Lymphoma Society Team in Training Group (398 members)
  8. Leukemia & Lymphoma Society and TNT: Triathlon!! (393 members)
  9. The Leukemia & Lymphoma Society, Lehigh Valley Branch/EPA Group (327 members)
  10. Infant Leukemia Support Group (311 members)
  11. Leukemia & Lymphoma Society, Tri-State Chapter Group (299 members)
  12. Leukemia Support Group – Philippines CML, ALL, AML, etc. Group (261 members)
  13. Leukemia Survivors Google Plus Community (189 members)
  14. Leukemia Relief FB Group (182 members)
  15. Help Fight Leukemia Cancer Group (152 members)
  16. Friends Who Like The Leukemia & Lymphoma Society – OCIE Chapter Group (138 members)
  17. Leukemia Awareness Group (123 members)
  18. No One Fights Alone – Leukemia Awareness Group (111 members)
  19. Fighting Leukemia Group (99 members)
  20. Cancer Support Group/Leukemia Support Group (97 members)
  21. Beat Leukemia! Group (89 members)
  22. Leukemia Support/Love Google Plus Community (73 members)
  23. Leukemia/Lymphoma Group (70 members)
  24. We help fight leukemia! Group (61 members)
  25. Leukemia and Lymphoma Awareness Club Group (59 members)
  26. Guardians of Leukemia Fighting Angels Google Plus Community (52 members)
  27. Leukaemia & Transplants UK Google Plus Community (23 members)
  28. Cancer & Leukemia Center Friends Group (9 members)

In-Person Support Groups In The United States

  1. Leukemia & Lymphoma Society Support Groups (Click link to see if there are any local meet-ups, fundraiser events, etc.)
  2. Cancer Support Communities

Acute Myeloid Leukemia Survey

We are surveying  people about their experiences with Acute Myeloid Leukemia. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)

**Click here to share your experience with Acute Myeloid Leukemia**

Free resources on other types of Leukemia: ALLCLLCML

Acute Myeloid Leukemia Subtypes

Leukemia subtype/stage:

  • M0. (Kay, diagnosed at age 24)
  • Begging. (Sibhash, diagnosed at age 25)
  • Very beginning. (Amol, diagnosed at age 26)
  • M1. (Michael, diagnosed at age 45)
  • FLT3. (Patt, diagnosed at age 55)
  • First MDS RAEB1, which became AML. (Michelle, 60 years old)
  • M0. (Apostolos)

Acute Myeloid Leukemia Genetic Mutations

Genetic mutations found:

  • -5q. (Kay, diagnosed at age 24)
  • No. (Amol, diagnosed at age 26)
  • Flip 3. (Caroline, diagnosed at age 36)
  • ITP. (Patt, diagnosed at age 55)
  • No. (Apostolos)

Acute Myeloid Leukemia Risk Levels

Were you (or your loved one) considered low, moderate or high risk?

  • Low risk. (Kay, diagnosed at age 24)
  • Moderate risk. (Sibhash, diagnosed at age 25)
  • Moderate risk. (Amol, diagnosed at age 26)
  • High risk. (Caroline, diagnosed at age 36)
  • High risk. (Laurie F., diagnosed at age 41)
  • Moderate risk. (Michael, diagnosed at age 45)
  • High risk. (Patt, diagnosed at age 55)
  • High risk. (Jack, diagnosed at age 57)
  • Moderate risk. (Frank, diagnosed at age 63)
  • High risk. (Apostolos)

Acute Myeloid Leukemia Symptoms

What AML symptoms have you (or your loved one) experienced?

  • Non-clotting blood, stomach pain, bruising, feeling tired. (Kay, diagnosed at age 24)
  • Fever. (Sibhash, diagnosed at age 25)
  • Red violet mark on leg. (Amol, diagnosed at age 26)
  • Tiredness, bleeding gums. (Caroline, diagnosed at age 36)
  • Fatigue, muscle aches and pains, restlessness. (Brandy, 39 years old)
  • Bleeding gums, headache, severe hip and joint pain. (Laurie F., diagnosed at age 41)
  • Fatigue, Weakness, Flu-like symptoms, Low blood counts. (Dawn, 46 years old)
  • Pre BMT- Fatigue, difficulty breathing, chest pain, gray tint to my skin, weight loss. Post BMT- Chronic back pain, GURD, fatigue, dry eye, mouth sores, cataracts. (Marlene, 55 years old)
  • At the time of diagnosis there was just a fast heart rate. (Patt, diagnosed at age 55)
  • Exhaustion, weakness, chills, fever, nausea, lack of appetite. (Jack, diagnosed at age 57)
  • Tired, weak, bruised easily. (Michelle, 60 years old)
  • Faint. (Apostolos)

Acute Myeloid Leukemia Causes

Is there anything you believe contributed to your (or your loved one’s) AML?

  • I wish I knew. (Kay, diagnosed at age 24)
  • Pollution, and the game plan on industrial giants. (Amol, diagnosed at age 26)
  • I never smoked or drank alcohol, nor took any drugs. So no, nothing. (Caroline, diagnosed at age 36)
  • Yes. I had carbon monoxide poisoning a year before I found out I was diagnosed with Leukemia. (Brandy, 39 years old)
  • Swimming in the Hudson River as a child.. Later was determined to be toxic! (Laurie F., diagnosed at age 41)
  • My dad has been around a lot of second hand smoke since my mom smokes. That has Benzene in it and I hear Benzene can cause AML. (Dawn, 46 years old)
  • Some test was run and my doctor said that my chromosome probably split because of a huge stressor within the previous 5 years. Gee my divorce, work stress or a major medical issue that hit? Pollution of air, food and water. Smoking in my younger years. (Marlene, 55 years old)
  • No, I have no idea, but would like to know. (Patt, diagnosed at age 55)
  • Environmental exposure through benzines. (Jack, diagnosed at age 57)
  • Sometimes I think that my husband was around Diesel engines and asbestos in his work- not directly in contact, but it was there. (Michelle, 60 years old)

Acute Myeloid Leukemia Interesting Facts

What are some interesting things you’ve learned about AML?

  • How helpless you feel. (Kay, diagnosed at age 24)
  • It’s a life changer thing. I check myself every month for CBC and PBS..just to keep it away, or if it’s detected again, I will be able to fight it in its early stage. (Amol, diagnosed at age 26)
  • Cord cell transplant. (Caroline, diagnosed at age 36)
  • That no one knows why a person gets this disease. (Brandy, 39 years old)
  • It’s the most under understood cancer, and not well described or defined in any area. (Laurie F., diagnosed at age 41)
  • Just how the whole bone marrow thing works when it comes to making the blood cells and how cancer cells invade. I have learned so much. (Dawn, 46 years old)
  • People can live through it! Who my friends truly are! (Marlene, 55 years old)
  • Even though two people can have the same type of AML, their bodies and minds will react differently. (Patt, diagnosed at age 55)
  • It takes no prisoners. (Jack, diagnosed at age 57)
  • I learned a lot about blood! I learned that Oncology Nurses and Hospice Nurses are angels in disguise. I learned that it’s important that Oncologists have good bedside manners. I learned that I am stronger than I thought. (Michelle, 60 years old)

Acute Myeloid Leukemia Pain Relief

What are effective ways to relieve your (or your loved one’s) AML-related pain?

  • Morphine did not help. I ended up on dilaudid and other strong drugs. Even made butter out of “pot” to help with appetite, nausea and pain (it worked). (Kay, diagnosed at age 24)
  • Hard work. (Sibhash, diagnosed at age 25)
  • Always do what you love to do..don’t think too much, just do it.. (Amol, diagnosed at age 26)
  • Pain killers. (Caroline, diagnosed at age 36)
  • Pain meds and rest. (Brandy, 39 years old)
  • Support in all areas. Intervention in all areas- mind, body, heart, spirit and soul! (Laurie F., diagnosed at age 41)
  • My dad takes Hydrocodone and Gabbapentin. He has Neuropathy. (Dawn, 46 years old)
  • Oxycontyn. (Marlene, 55 years old)
  • First round of chemo I had a pain pump as my liver was bleeding too. For the rest of the time I took the odd pain pill or by IV. But not much, (Patt, diagnosed at age 55)
  • Heavy pain meds, massage and hot baths. (Jack, diagnosed at age 57)
  • My husband’s pain was controlled by the prescriptions he was given. He only needed them toward the end. (Michelle, 60 years old)
  • Pain meds. (Frank, diagnosed at age 63)
  • Exercise. (Apostolos)

Acute Myeloid Leukemia Difficulties

What are the most difficult aspects of living with AML?

  • No control…feeling helpless facing possible death/mortality. (Kay, diagnosed at age 24)
  • GvHd. (Sibhash, diagnosed at age 25)
  • Expecting the unexpected, unwillingly. (Amol, diagnosed at age 26)
  • Tiredness, infections, pain, vomiting and the effects on my family. And also that I have a high chance that it is going to return. (Caroline, diagnosed at age 36)
  • The battle in itself to keep fighting. (Brandy, 39 years old)
  • The long term effects on my body! (Laurie F., diagnosed at age 41)
  • Watching your loved one suffer with this horrible disease. (Dawn, 46 years old)
  • Fear of reoccurring. (Barb, 46 years old)
  • Being forced to retire, paying medical bills, a post BMT infection became discitis and osteomyelitis, so the spine damage has made me unable to walk very far or stand very long. I am retired but I can’t do much to enjoy the life I fought for. I have to take pain medication every 12 hours just to feel normal and not be in unbearable pain. Depression. (Marlene, 55 years old)
  • Fatigue, forgetfulness, PTSD, fear it will come back, emotional problems. (Patt, diagnosed at age 55)
  • Not knowing what tomorrow holds, and finances. (Jack, diagnosed at age 57)
  • Sleeping a lot. Keeping meds and appointments straight. Long hospital stays. Transfusions. Loss of appetite. (Michelle, 60 years old)
  • Infections. (Apostolos)

Acute Myeloid Leukemia Advice

What words of advice/encouragement could you give someone recently diagnosed with AML?

  • Stay as positive as you can, keep living, and exercising your heart and lungs. (Kay, diagnosed at age 24)
  • Think positive. Always live for today. (Sibhash, diagnosed at age 25)
  • I just want you to think positive, and nothing but POSITIVE. Life is full of surprises. Some are good and some are bad. And everything counts as an experience. Whatever happened right now, you don’t need to think why this happened to you or me only..there is no need to analyze the situation because there is no point..the most important thing in this situation is to accept the CHALLENGE..I am sure you have surpassed all your hurdles of life before, be it your education degree or job and so basically YOU ARE THE WINNER. The only thing that’s between who you are and who you want to be is YOU..always remember that.. We are so blessed to have so many good hearted people around us..Be it your wife or kids or your friends..they all LOVE you and SUPPORT in times like this, more than us, it’s hard for our loved ones too, to see what we are going always try to pull your strength together and try to stay will be hard in the beginning but trust me, you will be surrounded with all that positive energy around you and it will make you feel better and heal better.. In times like these, one needs to do what he or she loves the most..find a hobby or an activity that will keep you busy but at the same time will not overstrain in my case I used to enjoy food and watching tv.. and in between I used to follow my passion of just keep yourself busy with reading or any passion that you follow, so that you can avoid all the unnecessary thoughts.. Take one day at a time. By this what I mean to say is that dividing your goals into smaller goals makes you deal with the situation better..In my case, whenever I used to wake up in the morning, I used to thank Almighty. Then I used to plan what all I needed to do in order to spend that the end of the day you should feel happy..THAT’S ALL..and if it doesn’t happen, it’s ok, you always have next day to work on I still follow the same..I try to live life in the best possible way.. Times will come when you feel lonely or less positive, it’s ok, it’s normal, but again, all these emotions come from within yourself, so again..if you are in your control, this will also get sorted.. Soon this phase of treatment will be over successfully..200% it will..if you believe this, the job is half done already..I used to take my cancer as something very stupid, cold or fever, for which I just needed to take some rest and eat basically being childish also works a lot, it worked with me and I’m sure it will work with you as kick Cancer’s a** and move on in life..because YOU ARE THE WINNER AND NO ONE ELSE IS!! Finally, I just want to say, please recover soon and BE THE INSPIRATION FOR OTHERS AROUND YOU..because when you will be out of this, you are gonna be the HERO already…and life will be larger than we ever imagined.. Well, thanks for reading this with patience, whatever I’ve said is from my wishes. 😊😊 (Amol, diagnosed at age 26)
  • Stay positive and live life as much as you can. (Caroline, diagnosed at age 36)
  • Don’t give up. (Vickie, diagnosed at age 39)
  • Please fight the battle. You will win. Don’t let cancer know who is boss. (Brandy, 39 years old)
  • Fight the fight! Be aggressive about your care, and don’t ever give up! (Laurie F., diagnosed at age 41)
  • Stay strong, don’t believe the statistics, everybody is different and reacts to treatment in their own way. Don’t be afraid to ask for help from anyone that can provide it to you. (Dawn, 46 years old)
  • People do live. There will be a new normal and you need to find some joy within it. (Marlene, 55 years old)
  • Find a good doctor. Trust them and follow their instructions. Take one day at a time. (Patt, diagnosed at age 55)
  • Have faith in God. (Jack, diagnosed at age 57)
  • Move fast, it’s crucial! Get a number of opinions! Teaching hospitals are the best! Record you doctor visits! Write down your questions for the doctor (you’ll forget). Record your loved one, keep a journal, take care of yourself! Get a good thermometer and pulse oximeter. (Michelle, 60 years old)
  • Stay positive. Let people help if they offer. (Frank, diagnosed at age 63)
  • Don’t lose your faith, and hope that you are going to win this battle. Drink a tons of water, and be patient. (Apostolos)

Acute Myeloid Leukemia Recommendations

Anything you would recommend for someone with AML?

  • Keep your lungs and heart in good shape (walk daily). If you’re having ANY concerns or trouble…tell nurses/doctors. (Kay, diagnosed at age 24)
  • Be strong. (Sibhash, diagnosed at age 25)
  • Stay healthy, eat fresh, avoid bad habits. (Amol, diagnosed at age 26)
  • Stay strong and positive. (Caroline, diagnosed at age 36)
  • Don’t give up. (Brandy, 39 years old)
  • FIGHT! (Laurie F., diagnosed at age 41)
  • I would recommend MD Anderson Cancer Center. They have been very supportive and helpful during this trying time. (Dawn, 46 years old)
  • If you don’t know God, find Him! Find a Facebook support page! Listen to your Doctors and Nurses! Try to stay positive. Physical therapy. Someone to talk to when you are down. (Marlene, 55 years old)
  • When you feel like giving up, just go to bed and start new the next day. They do get better. (Patt, diagnosed at age 55)
  • Do your own research, don’t believe every word out of the doctors’ mouths. (Jack, diagnosed at age 57)
  • Caregiver counseling at the onset. (Michelle, 60 years old)

Acute Myeloid Leukemia Remission and Relapse

What’s your (or your loved one’s) history of remission and relapse?

  • 1st induction – failed, 2nd induction – remission, MUD stem cell transplant, 149 days later – AML back, tried new trials/treatments, never reached remission again. Died 21 months after diagnosis. (Kay, diagnosed at age 24)
  • Not yet, and hopefully it won’t. (Amol, diagnosed at age 26)
  • No relapse YET. (Caroline, diagnosed at age 36)
  • 21 years remission. (Vickie, diagnosed at age 39)
  • I’m in remission..Chemo only. No relapse! (Laurie F., diagnosed at age 41)
  • In remission since 8/9/2016. (Michael, diagnosed at age 45)
  • AML in remission since 2010. (Marlene, 55 years old)
  • Blood test November 20th at 4 pm. 12 hours later at 4 am my doctor called and said be at the hospital at 8 am, an oncologist will be waiting. He said I have leukemia. At 8 am they did a bone biopsy and at 3 pm I started chemo. 4 days later I had a code blue, later that day I went into a coma for 2 1/2 months. When I woke up it was February and I was in remission. I also could no longer walk and I had a trach in my throat. In May I had induction chemo. It went textbook. In July I had one more chemo and full body radiation followed by a stem cell transplant from my sister as a donor. Still in remission 13 months later. (Patt, diagnosed at age 55)
  • BMT and six months remission, then relapse, then SCT, then death 6 weeks after SCT. (Jack, diagnosed at age 57)
  • 2014 treatment and remission. Relapse 2016 and had BMT. At day 95. (Frank, diagnosed at age 63)

Acute Myeloid Leukemia Treatments

What’s been your experience with treatments (chemotherapy, transplants, etc.)?

  • Chem. – some side affects. Bad reaction to Reglan. Ativan – helped with many things. Radiation before transplant- raw digestive tract, could not swallow for days, on TPN for two weeks, Antidepressant helped. (Kay, diagnosed at age 24)
  • BMT. (Sibhash, diagnosed at age 25)
  • Chemo gave me sleepless nights..but I enjoy the I faced them with all my strength. (Amol, diagnosed at age 26)
  • Chemotherapy +4, Radiotherapy full body, Cord cell transplant. (Caroline, diagnosed at age 36)
  • 3 rounds of chemo. (Vickie, diagnosed at age 39)
  • Chemotherapy is rough, but it’s needed to kill the cancer cells in the body. Stem cell transplant was even more rough, but it’s a journey I’d do all over again to save my life. (Brandy, 39 years old)
  • The infections in between my courses of chemo were death defying.. (Laurie F., diagnosed at age 41)
  • Chemo only. (Michael, diagnosed at age 45)
  • It’s a roller coaster ride. My dad has been through 4 rounds of chemo and I almost lost him once. He was in the hospital for 14 days with a deadly fungal infection, but pulled through. It was very scary. (Dawn, 46 years old)
  • 49 bags of chemo (1 round was experimental) and a SCT. Throat stretched 2x, plugs in eyes many times, numerous biopsys, many MRIs, CT scans and X-rays, cataract surgeries, 21/2 years of ECP. (Marlene, 55 years old)
  • First chemo nearly killed me, second chemo went exactly like it was supposed to, third chemo was very strong and combined with radiation made me very sick. The transplant went smooth, but I was still very ill from chemo. (Patt, diagnosed at age 55)
  • Aggressive and can kill on their own. (Jack, diagnosed at age 57)
  • Nausea, but it was controlled by meds. Loss of appetite. Hair loss. (Michelle, 60 years old)
  • Limited problems with chemo until a week after it stopped. One time chronic cough. Second time diarrhea. (Frank, diagnosed at age 63)

Acute Myeloid Leukemia Resources

What specific AML resources have you found most helpful?

  • The nurses and PA’s. Most organizations (AMS, LLS, etc.) are so general, and so focused on other cancers- not much help with AML. (Kay, diagnosed at age 24)
  • God’s grace and positive thinking. (Sibhash, diagnosed at age 25)
  • Nothing. (Amol, diagnosed at age 26)
  • Talking. (Caroline, diagnosed at age 36)
  • Support groups. (Vickie, diagnosed at age 39)
  • The American Cancer Society housed me for two weeks so I could be closer to my doctor. (Brandy, 39 years old)
  • The Leukemia and Lymphoma Society.. (Laurie F., diagnosed at age 41)
  • (Michael, diagnosed at age 45)
  • MD Anderson Cancer Center in Jacksonville, FL, AML groups on Facebook. (Dawn, 46 years old)
  • GOD, U of M social worker, 211, Children’s Leukemia Foundation of MI ( they help adults too). Leukemia Lymphoma Society and Facebook support pages. (Marlene, 55 years old)
  • Talking with my Dr. and Therapist. (Patt, diagnosed at age 55)
  • Feedback from Facebook groups. (Jack, diagnosed at age 57)
  • Having a spouse who doesn’t work outside the home is pretty crucial. Hospice was very important at the end. Also hospital patient advocates were very helpful. (Michelle, 60 years old)
  • Material from doctor. (Frank, diagnosed at age 63)