April 6, 2017

Chronic Myeloid Leukemia (CML)


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

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Chronic Myeloid Leukemia Blogs

Here’s a collection of Chronic Myeloid Leukemia blogs- written by people with CML, or about CML.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Rachael Bell stickittoit.blogspot.com 2017
Jon Gershon jongershon.blogspot.com 2017
Recovery From CML recoveryfromcml.blogspot.com 2017
Patti Moonis pattimoonis.blogspot.com 2016
Living With CML livingwithcml.blogspot.com 2015
My Life With CML mylifewithcml.blogspot.com 2015
Jonathan Ting william-jon.blogspot.com 2015
Michael’s Mouthpiece cmlblogmouthpiece.blogspot.com 2014
Matthew Sinclair matthewsinclair.blogspot.com 2014
Rita’s CML Journey ritascmljourney.blogspot.com 2014
Laura hollowmeout.blogspot.com 2013
My Leukemia Journey myleukemiajourney.blogspot.com 2013
Bledsoe Battle bledsoebattle.blogspot.com 2013
Joe Thornburg joethornburg.blogspot.com 2012
CML Journey mattcml.blogspot.com 2012
Hans Loland ftbwtw.blogspot.com 2012
Jody Ferguson jflivingvictoriously.blogspot.com 2011
Trey’s CML Blog treyscml.blogspot.com 2010
My Blood Hates Me hatefulblood.blogspot.com 2010
My Leukemia Blog mycml.blogspot.com 2008
Strength Today strengthtoday.blogspot.com 2008

Chronic Myeloid Leukemia Support Groups

CML Support Groups On Facebook

  1. CML Survivors Group (2,803 members)
  2. Chronic Myeloid Leukemia (CML) Group (2,336 members)
  3. Living with CML…Chronic Myelogenous Leukemia Group (2,150 members)
  4. Chronic Myeloid Leukaemia UK – CML UK Group (1,535 members)
  5. CML Survivors and Caregivers Closed Group (1,397 members)
  6. CML (Chronic Myelogenous Leukemia) Group (1,052 members)
  7. CML For Australians Group (259 members)
  8. CML Fitness and Weight Loss Group (191 members)
  9. CML Chronic Myelogenous Leukemia CML Group (121 members)
  10. CML Group (115 members)
  11. CML Patients in TFR (Treatment Free Remission) Group (113 members)
  12. Chronic Myeloid Leukaemia CML Worldwide (Leukemia) Group (83 members)
  13. CML Florida Group (68 members)
  14. CML California Group (68 members)
  15. Friends Who Like CML Home Care Group (53 members)
  16. CML Texas Group (46 members)
  17. CML Ohio Group (43 members)
  18. CML Virginia Group (43 members)
  19. CML New York Group (40 members)
  20. CML Illinois Group (39 members)
  21. CML Pennsylvania Group (36 members)
  22. CML Michigan Group (29 members)
  23. CML Washington Group (27 members)
  24. CML Missouri Group (24 members)
  25. CML Indiana Group (22 members)
  26. CML North Carolin Group (20 members)
  27. CML Connecticut Group (19 members)
  28. CML Alabama Group (19 members)
  29. CML Tennessee Group (19 members)
  30. CML Iowa Group (14 members)
  31. CML Wisconsin Group (14 members)
  32. CML New Jersey Group (14 members)
  33. CML Louisiana Group (14 members)
  34. CML Colorado Group (13 members)
  35. CML South Carolina Group (13 members)
  36. CML Maryland Group (13 members)
  37. CML Pakistan – Chronic Myelogenous / Myeloid Leukemia Group (12 members)
  38. CML Kentucky Group (11 members)
  39. CML Utah Group (10 members)
  40. CML Massachusetts Group (10 members)
  41. CML Cancer Killers Group (9 members)
  42. CML Maine Group (9 members)
  43. CML Arizona Group (9 members)
  44. CML Mississippi Group (8 members)
  45. CML Nevada Group (8 members)
  46. CML Oklahoma Group (8 members)
  47. CML Arkansas Group (7 members)
  48. CML Nebraska Group (6 members)
  49. CML Idaho Group (4 members)
  50. Hematology: Treatment for Chronic Myeloid Leukemia Group (4 members)
  51. CML Alaska Group (3 members)

Google Plus CML Support Communities

  1. none found yet.

Other CML Support Groups And Forums

  1. Asian CML Yahoo Support Group (1,158 members)
  2. DailyStrength Chronic Myelogenous Leukemia (CML) Support Group (48 members, 440 posts)
  3. Drugs.com Chronic Myelogenous Leukemia (CML) Support Group (74 members, 82 questions)
  4. Leukemia & Lymphoma Society Chronic Myeloid Leukemia Forum
  5. International CML Foundation Forum
  6. CML Support Forum
  7. CancerFocus Chronic Myelogenous Leukemia Forum
  8. CancerCompass Leukemia (CML) Discussions
  9. Macmillan Chronic Myeloid Leukaemia Forum
  10. CancerConnect Leukemia Community
  11. CancerForums.net Leukemia Forums
  12. Cancer Care Blood Cancers Patient Support Group
  13. HealthBoards Leukemia Message Board
  14. Cancer Research UK Cancer Chat
  15. MDJunction Leukemias Forums
  16. 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. CML Advocates Network
  2. The National CML Society “CML Connection”
  3. Leukemia & Lymphoma Society Support Groups (Click link to see if there are any local meet-ups, fundraiser events, etc.)
  4. Cancer Support Communities

Chronic Myeloid Leukemia Survey

We are surveying  people about their experiences with Chronic 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 Chronic Myeloid Leukemia**

Free resources on other types of Leukemia: ALL, AMLCLL


Chronic Myeloid Leukemia Subtypes

Leukemia subtype/stage:

  • Chronic. (Ryan, diagnosed at age 9)
  • Chronic. (Ryan, diagnosed at age 10)
  • Blast phase. (Jaycee, diagnosed at age 23)
  • Chronic. (Jayden, diagnosed at age 23)
  • Chronic. (Joyce, diagnosed at age 24)
  • Chronic phase. (Islam, diagnosed at age 25)
  • Chronic. (Sadie, diagnosed at age 26)
  • Chronic. (Daniel, diagnosed at age 28)
  • Chronic. (Itai, diagnosed at age 29)
  • Chronic. (Kim, diagnosed at age 29)
  • Chronic. (Agnieszka, diagnosed at age 29)
  • Chronic. (Balasubramanian, diagnosed at age 29)
  • Chronic stage. (Jennifer, diagnosed at age 32)
  • Blast crisis. (Katherine, diagnosed at age 32)
  • Chronic. (Kennet, diagnosed at age 33)
  • Chronic. (Iqbal, diagnosed at age 35)
  • Chronic. (Judy, diagnosed at age 40)
  • Molecular remission. (Jennette, diagnosed at age 40)
  • Chronic. (Andy, diagnosed at age 42)
  • MMR. (Catrin, diagnosed at age 43)
  • Chronic. (Julie, diagnosed at age 44)
  • Mmr. (Michelle, diagnosed at age 45)
  • Undetectable. (David, diagnosed at age 45)
  • First. (Ajay, diagnosed at age 46)
  • Chronic. (Terri, diagnosed at age 47)
  • Chronic. (Louise, diagnosed at age 48)
  • Chronic (Toni M., diagnosed at age 48)
  • Ph+. (Carol, diagnosed at age 50)
  • Chronic. (Stuart, diagnosed at age 50)
  • Chronic. (Tom, diagnosed at age 51)
  • Chronic. (Kathryn, diagnosed at age 52)
  • Crisis. (Pamela, diagnosed at age 52)
  • Undetectable. (Debra, diagnosed at age 52)
  • Ph+. (Euzebiusz Jan, diagnosed at age 53)
  • Chronic. (Paul, diagnosed at age 53)
  • Chronic. (Karin, diagnosed at age 53)
  • Chronic. (Lisa, diagnosed at age 54)
  • Don’t know. (Dwayne, diagnosed at age 56)
  • Chronic Phase. (Richard, diagnosed at age 56)
  • Chronic. (Robin S., diagnosed at age 66)

Chronic Myeloid Leukemia Genetic Mutations

Genetic mutations found:

  • P 210 and P 190. (Ryan, diagnosed at age 9)
  • 9/22 chromosome. (Jaycee, diagnosed at age 23)
  • Philadelphia chromosome 9 & 22. (Joyce, diagnosed at age 24)
  • Ph +ve. (Islam, diagnosed at age 25)
  • No. (Sadie, diagnosed at age 26)
  • No. (Daniel, diagnosed at age 28)
  • Untested. (Itai, diagnosed at age 29)
  • Ph+. (Kim, diagnosed at age 29)
  • Yes, two. (Agnieszka, diagnosed at age 29)
  • Yes. (Balasubramanian, diagnosed at age 29)
  • None. (Jennifer, diagnosed at age 32)
  • Monosomy 7. (Katherine, diagnosed at age 32)
  • None. (Moira, diagnosed at age 38)
  • Philadelphia chromosome. (Judy, diagnosed at age 40)
  • 11 and 22=PC. (Lena, diagnosed at age 41)
  • Yes. (Sally, diagnosed at age 41)
  • Philadelphia. (Carol, diagnosed at age 42)
  • Ph+. (Andy, diagnosed at age 42)
  • No. (Sue, diagnosed at age 43)
  • None. (Catrin, diagnosed at age 43)
  • Philadelphia Chromosome. (Jo-Dee M., diagnosed at age 43)
  • No. (Julie, diagnosed at age 44)
  • Nil. (David, diagnosed at age 45)
  • Yes. (Ajay, diagnosed at age 46)
  • Ph+. (Terri, diagnosed at age 47)
  • Yes. (Louise, diagnosed at age 48)
  • None. (Carol, diagnosed at age 50)
  • None. (Tom, diagnosed at age 51)
  • None. (Kathryn, diagnosed at age 52)
  • Philly+. (Pamela, diagnosed at age 52)
  • None. (Paul diagnosed at age 53)
  • No. (Karin, diagnosed at age 53)
  • Philadelphia chromosome. (Lisa, diagnosed at age 54)
  • None. (Yvonne, diagnosed at age 54)
  • None yet. (Dwayne, diagnosed at age 56)
  • Philadelphia Chromosome. (Richard, diagnosed at age 56)
  • Philadelphia. (Laurie, diagnosed at age 57)
  • Philadelphia Chromosome. (Donna, diagnosed at age 57)

Chronic Myeloid Leukemia Risk Levels

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

  • Low risk. (Ryan, diagnosed at age 9)
  • Low risk. (Ryan, diagnosed at age 10)
  • High risk. (Jaycee, diagnosed at age 23)
  • Low risk. (Jayden, diagnosed at age 23)
  • Moderate risk. (Joyce, diagnosed at age 24)
  • Low risk. (Islam, diagnosed at age 25)
  • Moderate risk. (Sadie, diagnosed at age 26)
  • Moderate risk. (Daniel, diagnosed at age 28)
  • Low risk. (Zaryn, diagnosed at age 28)
  • Moderate risk. (Tabeth, diagnosed at age 28)
  • Moderate risk. (Itai, diagnosed at age 29)
  • Low risk. (Kim, diagnosed at age 29)
  • Low risk. (Agnieszka, diagnosed at age 29)
  • Low risk. (Balasubramanian, diagnosed at age 29)
  • Low risk. (Jennifer, diagnosed at age 32)
  • High risk. (Katherine, diagnosed at age 32)
  • Moderate risk. (Kennet, diagnosed at age 33)
  • Low risk. (Iqbal, diagnosed at age 35)
  • Low risk. (James, diagnosed at age 37)
  • Low risk. (Moira, diagnosed at age 38)
  • Low risk. (Anonymous, diagnosed at age 39)
  • High risk. (Judy, diagnosed at age 40)
  • Moderate risk. (Jennette, diagnosed at age 40)
  • High risk. (Lena, diagnosed at age 41)
  • Low risk. (Sally, diagnosed at age 41)
  • Low risk. (Carol, diagnosed at age 42)
  • Low risk. (Andy, diagnosed at age 42)
  • High risk. (Sue, diagnosed at age 43)
  • Low risk. (Catrin, diagnosed at age 43)
  • Low risk. (Jo-Dee M., diagnosed at age 43)
  • Moderate risk. (Julie, diagnosed at age 44)
  • Low risk. (Michelle, diagnosed at age 45)
  • Moderate risk. (David, diagnosed at age 45)
  • Low risk. (Ajay, diagnosed at age 46)
  • Low risk. (Ann, diagnosed at age 47)
  • Low risk. (Terri, diagnosed at age 47)
  • Low risk. (Louise, diagnosed at age 48)
  • Moderate risk. (Toni M., diagnosed at age 48)
  • Low risk. (Carol, diagnosed at age 50)
  • Low risk. (Stuart, diagnosed at age 50)
  • Low risk. (Tom, diagnosed at age 51)
  • Low risk. (Laura, diagnosed at age 52)
  • Low risk. (Pamela, diagnosed at age 52)
  • Low risk. (Debra, diagnosed at age 52)
  • Moderate risk. (Euzebiusz Jan, diagnosed at age 53)
  • Low risk. (Paul diagnosed  at age 53)
  • Low risk. (Karin, diagnosed at age 53)
  • Low risk. (Lisa, diagnosed at age 54)
  • Low risk. (Yvonne, diagnosed at age 54)
  • Low risk. (Dwayne, diagnosed at age 56)
  • High risk. (Richard, diagnosed at age 56)
  • Low risk. (Corinne, diagnosed at age 60)
  • Moderate risk. (Steve, diagnosed at age 60)
  • Low risk. (Anonymous, diagnosed at age 60)
  • Low risk. (Mary, diagnosed at age 61)
  • Moderate risk. (Rita, diagnosed at age 76)

Chronic Myeloid Leukemia Symptoms

What CML symptoms have you experienced?

  • Headaches, stomach aches, muscle aches, bone pain, nausea, vomiting. (Ryan, diagnosed at age 9)
  • Fatigue, loss of appetite, bruising. (Jaycee, diagnosed at age 23)
  • Odd fatigue. (Jayden, diagnosed at age 23)
  • At diagnosis – Headaches, flashing spots, dizzy spells, flu-like symptoms, fatigue, headaches. Side effects from TKI treatments – chronic muscle/joint pains in hips, calves, ankles and feet, fuzzy brain, fatigue, low energy, gastritis, headaches, memory impairment. (Joyce, diagnosed at age 24)
  • Severe fatigue, priapism, severe muscle pain and repeated chest infection. (Islam, diagnosed at age 25)
  • Fatigue, joint pain, cognitive decline, headaches, weight loss, night sweats and fevers. (Anonymous, diagnosed at age 25)
  • Diagnosed during pregnancy, pain in arms. (Sadie, diagnosed at age 26)
  • Fatigue. (Daniel, diagnosed at age 28)
  • Extreme fatigue, body aches especially hips and below, weird muscle pulls, water retention especially face, and brain fog (chemo brain) i.e., I forget things easily. (Zaryn, diagnosed at age 28)
  • Enlarged spleen. (Tabeth, diagnosed at age 28)
  • Night sweats, bone aches, joint pain, headache, fatigue, acne, heat in legs, nausea and vomiting, diarrhea, feeling full. (Itai, diagnosed at age 29)
  • Bone pain, night sweats, fever, buzzing in bones, exhaustion. (Kim, diagnosed at age 29)
  • Tiredness, constant fatigue, bruising, infections. (Agnieszka, diagnosed at age 29)
  • Spleenomegaly weight loss and hair loss. (Balasubramanian, diagnosed at age 29)
  • Weight gain, fatigue, confusion, nausea, bone pain, muscle pain, headache. (Jennifer, diagnosed at age 32)
  • Nose bleeds, headaches, bruises, pulmonary embolism, tiredness, swollen ankles. (Katherine, diagnosed at age 32)
  • Hip bone pain. (Iqbal, diagnosed at age 35)
  • None. (Moira, diagnosed at age 38)
  • Fatigue, weight loss, easy bruising, bone pain. (Anonymous, diagnosed at age 39)
  • Fatigue. Nausea. Bone pain. (Judy, diagnosed at age 40)
  • At diagnosis, weight loss and tiredness. Now GVHD of gut post BMT twenty years ago. (Jennette, diagnosed at age 40)
  • Dizzy spells, bone pain and chronic myalgia. (Lena, diagnosed at age 41)
  • Fatigue, chest pain, abnormal blood results. (Sally, diagnosed at age 41)
  • None. (Carol, diagnosed at age 42)
  • Fatigue, weight loss, increased number of infections, grey spots in vision. (Andy, diagnosed at age 42)
  • Sickness, bone and joint pain, blurred vision, dizziness runs, infections. (Sue, diagnosed at age 43)
  • Fatigue, bone pain. (Catrin, diagnosed at age 43)
  • Tired. Sweats. (Jo-Dee M., diagnosed at age 43)
  • Shortness of breathe, bone pain, fatigue, night sweats, hip pain. (Julie, diagnosed at age 44)
  • Fatigue. Weight gain, sickness, diarrhea, muscle weakness, insomnia, sore throat continuously, lack of confidence. (Michelle, diagnosed at age 45)
  • Tiredness, weakness, nausea, gvhd. (David, diagnosed at age 45)
  • Dizziness. Abnormal blood results. (Alison, diagnosed at age 46)
  • No…diagnosed through routine checkup. (Ajay, diagnosed at age 46)
  • Swollen stomach, weight gain, chronic fatigue. (Ann, diagnosed at age 47)
  • Fainted; high wbc. (Terri, diagnosed at age 47)
  • Tiredness mainly. (Louise, diagnosed at age 48)
  • Fatigue, sweat. (Tony M., diagnosed at age 48)
  • Bone and joint pain, fatigue, night sweats. (Carol, diagnosed at age 50)
  • Bone pain, itching, tiredness, vomiting. (Stuart, diagnosed at age 50)
  • Fatigue, brain fog, bone pain, photosensitivity (rash, sunburn). (Tom, diagnosed at age 51)
  • No symptoms before diagnosis (found by blood test), but lots of side effects from meds. (Kathryn, diagnosed at age 52)
  • Heat surges/sweats, fatigue, bruising, bone pain, itchy skin, sleep issues. I thought I had a bad case of menopause. (Pamela, diagnosed at age 52)
  • Blood pressure high, really just didn’t feel “normal”. (Debra, diagnosed at age 52)
  • All typical symptoms for CML. (Euzebiusz Jan, diagnosed at age 53)
  • Anxiety, joint pain, depression. (Paul, diagnosed at age 53)
  • Bone pain, night sweats, fatigue, loss of appetite, bruising and bleeding. (Karin, diagnosed at age 53)
  • Fatigue. (Lisa, diagnosed at age 54)
  • Fatigue, headaches, nausea, flu-like feeling, generally feeling ill, loss of appetite, bone and joint pain. (Yvonne, diagnosed at age 54)
  • Fatigue, anemia. (Dwayne, diagnosed at age 56)
  • Tiredness, nausea, muscle spasms, rash, gout, anemia. (Richard, diagnosed at age 56)
  • WBC-334,000. Splenomegaly, weight loss, fatigue, night sweats. (Laurie, diagnosed at age 57)
  • Fatigue, tiredness, depression. (Kim, 57 years old)
  • Fatigue and joint pain in particular. (Mike, diagnosed at age 58)
  • Nothing. (Julianna, diagnosed at age 59)
  • Prior to diagnosis, I was suffering from right hip pain, and easy and severe bruising. (Corinne, diagnosed at age 60)
  • Bone pain, nausea, fatigue. (Steve, diagnosed at age 60)
  • Tiredness, pains in legs. (Mary, diagnosed at age 61)
  • Weight loss, tiredness. (Robin S., diagnosed at age 66)
  • Nausea, vomiting, diarrhea, bone pain, nose bleeds, eye bleeds, bleed into knee meniscus, fatigue, shortness of breath, depression. (Rita, diagnosed at age 76)

Chronic Myeloid Leukemia Causes

Is there anything you believe contributed to your CML?

  • No. (Ryan, diagnosed at age 9)
  • Bad luck. (Jaycee, diagnosed at age 23)
  • Nope. (Jayden, diagnosed at age 23)
  • Stress, hectic lifestyle and poor work/life balance. (Joyce, diagnosed at age 24)
  • I often wonder if this is due to a severe Mono infection (epstein barr) or black mold. (Anonymous, diagnosed at age 25)
  • Don’t eat pomegranates and citric fruit. (Sadie, diagnosed at age 26)
  • Smoking. (Daniel, diagnosed at age 28)
  • No. (Tabeth, diagnosed at age 28)
  • I was never right after I got preeclampsia with my first son. (Kim, diagnosed at age 29)
  • Chernobyl disaster. I lived in Poland when the explosion happened. The Polish government didn’t inform Polish citizens when the radioactive cloud came over Poland. No wonder that myself and my family members were finding 4 leaf clovers up to two years after the explosion and we all know that 4 leaf clovers happen when exposed to radiation. Another cause I think was my pregnancy. (Agnieszka, diagnosed at age 29)
  • Don’t know. (Balasubramanian, diagnosed at age 29)
  • Grew up on a farm. (Jennifer, diagnosed at age 32)
  • Stress. Maybe aspartame from Diet drinks. (Katherine, diagnosed at age 32)
  • Yes….aspartame. As I got diagnosed with diabetes in 2012, I switched to light and no-sugar products. 2013- Leukemia. I noticed a scientist has tested higher risk due to aspartame. (Kennet, diagnosed at age 33)
  • Maybe smoking. (Iqbal, diagnosed at age 35)
  • No. (Moira, diagnosed at age 38)
  • No. (Anonymous, diagnosed at age 39)
  • Stress. (Judy, diagnosed at age 40)
  • Worked in a printing factory, there were several cases of leukaemia over short period of time. (Jennette, diagnosed at age 40)
  • Radiation from x rays, also I already had chronic anemia most of my life. (Lena, diagnosed at age 41)
  • Stress. (Sally, diagnosed at age 41)
  • No. (Carol, diagnosed at age 42)
  • Being a classified radiation worker. (Andy, diagnosed at age 42)
  • Stress. (Sue, diagnosed at age 43)
  • No. (Catrin, diagnosed at age 43)
  • No. (Jo-Dee M., diagnosed at age 43)
  • Stress. (Julie, diagnosed at age 44)
  • Work. (Michelle, diagnosed at age 45)
  • No. (David, diagnosed at age 45)
  • Stress. (Ajay, diagnosed at age 46)
  • No. (Ann, diagnosed at age 47)
  • No. Sheer dumb (bad) luck. (Terri, diagnosed at age 47)
  • Unlucky. (Louise, diagnosed at age 48)
  • No. (Carol, diagnosed at age 50)
  • No. (Stuart, diagnosed at age 50)
  • Imaging, possibly (radiation). (Tom, diagnosed at age 51)
  • No. It’s completely random and just luck of the draw!! (Kathryn, diagnosed at age 52)
  • Not a clue. I was not exposed to chemicals, radiation or unknown factors. I have no history of any cancer in my family, so I was truly shocked. (Pamela, diagnosed at age 52)
  • No. (Karin, diagnosed at age 53)
  • Not that I know of. (Lisa, diagnosed at age 54)
  • Not that I am aware of. (Yvonne, diagnosed at age 54)
  • Nothing anyone knows of. (Dwayne, diagnosed at age 56)
  • Stress. (Laurie, diagnosed at age 57)
  • Not that I can find. (Kim, 57 years old)
  • Preservatives/chemicals in food. (Donna, diagnosed at age 57)
  • Not known. (Mike, diagnosed at age 58)
  • Long lasting inflammation. (Julianna, diagnosed at age 59)
  • If anything, probably stress. Don’t know if that is possible. Worked for a Cardiology group and was exposed to nuclear medicine??? (Corinne, diagnosed at age 60)
  • Possibly working close to electricity. (Steve, diagnosed at age 60)
  • Stress. (Mary, diagnosed at age 61)
  • Exposure to radioactive materials in my youth environment. (Rita, diagnosed at age 76)

Chronic Myeloid Leukemia Interesting Facts

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

  • CML is so different from other cancers. Before diagnosis, I didn’t realize that all cancers are lifelong in that you have to be monitored closely and there is a risk of relapse as well as long term side effects from the treatment. (Ryan, diagnosed at age 9)
  • Slow spreading. (Jaycee, diagnosed at age 23)
  • That you can lead a normal life. (Jayden, diagnosed at age 23)
  • The resilience of malignant cells, especially stem cells. (Islam, diagnosed at age 25)
  • It is now common and treatable. (Sadie, diagnosed at age 26)
  • Life is too short. (Daniel, diagnosed at age 28)
  • You can live like a normal person. (Tabeth, diagnosed at age 28)
  • It always progresses if you live long enough. (Itai, diagnosed at age 29)
  • The breakdown of cancer cells creates an influx of uric acid that can result in the original symptoms of the cancer. ie, Your oral chemo can give you bone pain, fevers, night sweats, etc. (Kim, diagnosed at age 29)
  • Didn’t know there are four types of Leukemia. (Agnieszka, diagnosed at age 29)
  • In 1,00,000 (lakh), one can get this. I’m the one in 1,00,000 (lakh). (Balasubramanian, diagnosed at age 29)
  • How completely random it is. (Jennifer, diagnosed at age 32)
  • It can affect anyone of any age. (Katherine, diagnosed at age 32)
  • I hate it :). (Kennet, diagnosed at age 33)
  • How far treatment has developed. (Judy, diagnosed at age 40)
  • It sucks. (Lena, diagnosed at age 41)
  • Everything, I knew nothing. (Carol, diagnosed at age 42)
  • It’s very emotional. (Sue, diagnosed at age 43)
  • How many different forms of Leukemia there are. (Catrin, diagnosed at age 43)
  • Anyone can be a sufferer. Met lovely people from support group. How included up GPS are. (Michelle, diagnosed at age 45)
  • It’s a silent killer. (David, diagnosed at age 45)
  • Learned how Tki’s work- fascinating! (Terri, diagnosed at age 47)
  • Lots as I didn’t know much. I am a nurse but have never worked in oncology. It is all very interesting. (Louise, diagnosed at age 48)
  • Each person has different side effects. (Toni M., diagnosed at age 48)
  • Side effects of medication and how to deal with them. (Carol, diagnosed at age 50)
  • Amazing how this works to bring you to zero. (Stuart, diagnosed at age 50)
  • The prognosis for CML is excellent. You probably will die from something else. (Tom, diagnosed at age 51)
  • Too numerous to mention. It’s no longer a death sentence. (Kathryn, diagnosed at age 52)
  • Everything and anything. I had no idea what to ask or what some things meant, so it was a steep learning curve. (Pamela, diagnosed at age 52)
  • There are new therapies with new generation drugs. (Euzebiusz Jan, diagnosed at age 53)
  • That it’s treatable. (Karin, diagnosed at age 53)
  • It’s very manageable and not a death sentence. (Lisa, diagnosed at age 54)
  • How well managed it can be thanks to extensive hard work and research by scientists. (Yvonne, diagnosed at age 54)
  • The history of CML and the way they found Gleevec. Read the Philadelphia Cromasome. (Dwayne, diagnosed at age 56)
  • That there are so many different types of Leukemia. (Richard, diagnosed at age 56)
  • How quickly the disease can change and the daily battle involved. (Kim, 57 years old)
  • There is an end. (Julianna, diagnosed at age 59)
  • It’s a forgotten cancer. I look normal, therefore I am treated as though there is little or nothing wrong. I am just expected to be my old self and suck it up. (Corinne, diagnosed at age 60)
  • Not many people are aware of it and how it effects you. (Steve, diagnosed at age 60)
  • That there are many types of blood cancer. (Anonymous, diagnosed at age 60)
  • There are more types than I realized. (Mary, diagnosed at age 61)
  • Development of tkis to control CML. (Robin S., diagnosed at age 66)
  • The treatment of chemo pills which I will take forever, are actually poisoning me. (Rita, diagnosed at age 76)

Chronic Myeloid Leukemia Pain Relief

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

  • Epsom salt baths. (Ryan, diagnosed at age 9)
  • Don’t let them see you give up. (Jaycee, diagnosed at age 23)
  • Hot relaxing bath, try to stay away from pain killers. (Jayden, diagnosed at age 23)
  • Healthy eating, sports, regular stretching helps with fatigue and muscle/joint pains; ibuprofen if the pain becomes unbearable or affects mobility. Magnesium/calcium tablets for cramps. Espresso to kick start the fuzzy brain. Omeprazole for gastritis. (Joyce, diagnosed at age 24)
  • Be in a good mood. (Islam, diagnosed at age 25)
  • Sleep seems to be critical. Probiotics. Possibly CBD. (Anonymous, diagnosed at age 25)
  • Pray, then Glivec. (Sadie, diagnosed at age 26)
  • I have no pain. (Daniel, diagnosed at age 28)
  • Sleeping. (Tabeth, diagnosed at age 28)
  • Ibuprofen, avoid narcotics. (Itai, diagnosed at age 29)
  • I refuse to take prescription pain killers. Magnesium helps some. (Kim, diagnosed at age 29)
  • Paracetamol. (Agnieszka, diagnosed at age 29)
  • The pain is controllable. (Balasubramanian, diagnosed at age 29)
  • Heating pads, hot baths, opioid pain pills once in a great while. (Jennifer, diagnosed at age 32)
  • Talking/discussing. Pain killers. (Katherine, diagnosed at age 32)
  • Pain medicine and rest. (Kennet, diagnosed at age 33)
  • Paracetamol. (Iqbal, diagnosed at age 35)
  • Never had any pain from CML. (James, diagnosed at age 37)
  • Sleep. (Moira, diagnosed at age 38)
  • Meditation diet. Conventional pain medication. (Judy, diagnosed at age 40)
  • Lots of painkillers. (Jennette, diagnosed at age 40)
  • Being compassionate and understanding. (Lena, diagnosed at age 41)
  • Keep moving. (Carol, diagnosed at age 42)
  • Rest and pace yourself. (Sue, diagnosed at age 43)
  • None. (Catrin, diagnosed at age 43)
  • Deep tissue massage. (Jo-Dee M., diagnosed at age 43)
  • Hot baths, heating pads, walking and rest. (Julie, diagnosed at age 44)
  • Magnesium. (Michelle, diagnosed at age 45)
  • No pain. (David, diagnosed at age 45)
  • To get involved in other activities, and not to think much about the illness. (Ajay, diagnosed at age 46)
  • Having a bath, sleep, rest, do things little and when you can, otherwise you get exhausted. (Ann, diagnosed at age 47)
  • Good question. (Terri, diagnosed at age 47)
  • For my headaches just paracetamol. I suffer back restless legs (more so after sports), but I think it is more related to IDA. (Louise, diagnosed at age 48)
  • In my case there is no pain…it’s fatigue, not being able to do all that I would like…not having power enough to have a normal life. (Toni M., diagnosed at age 48)
  • Exercise, heat, massage, Epsom salt baths and analgesia. (Carol, diagnosed at age 50)
  • Strong pain killers, but doesn’t always work. (Stuart, diagnosed at age 50)
  • No pain. (Tom, diagnosed at age 51)
  • Pain killers as necessary, warm microwave bag for cramps, magnesium citrate for cramps, mag oil for running. (Kathryn, diagnosed at age 52)
  • Rest. Breathing. Exercise. Nutritional foods. Keep hydrated!! I drink a lot of water. I also take Vitamin D and Vitamin B. Sometimes, doing less. I know when I have over done things … (Pamela, diagnosed at age 52)
  • Using TKI for the treatment. I have no any problems with the pain. (Euzebiusz Jan, diagnosed at age 53)
  • Pain pills, massage and rest. (Karin, diagnosed at age 53)
  • No pain so far. (Lisa, diagnosed at age 54)
  • Co codamol is the only thing that helps with my pain. (Yvonne, diagnosed at age 54)
  • Norco, sleep. (Dwayne, diagnosed at age 56)
  • Drinking lots of water helps with the cramps and nausea. Exercise when possible. (Richard, diagnosed at age 56)
  • Activity, heating pad, massage. (Laurie, diagnosed at age 57)
  • Found atopical CVS brand rub to put on feet and legs. (Kim, 57 years old)
  • Not pain, but nausea and cramps. Taking a nap and Mg with Ca. (Julianna, diagnosed at age 59)
  • Try working through it. I feel as though I already take too many drugs. (Corinne, diagnosed at age 60)
  • Rest. (Steve, diagnosed at age 60)
  • Pain meds, management, and just living with it. (Anonymous, diagnosed at age 60)
  • Magnesium spray helps a bit. (Mary, diagnosed at age 61)
  • Seek professional advice- someone who will listen and is kind and patient. (Rita, diagnosed at age 76)

Chronic Myeloid Leukemia Difficulties

What are the most difficult aspects of living with CML?

  • Side effects of meds, fear of progression (Ryan, diagnosed at age 9)
  • The treatment meds. (Ryan, diagnosed at age 10)
  • Remembering to take medication. (Jaycee, diagnosed at age 23)
  • Weight gain. (Jayden, diagnosed at age 23)
  • Fatigue, fuzzy brain and joint pains. (Joyce, diagnosed at age 24)
  • Fear and waiting for tests’ results. (Islam, diagnosed at age 25)
  • The fear and uncertainty whether treatment will work and for how long. Seeing the decline of my child. (Anonymous, diagnosed at age 25)
  • Taking whole life glivec. (Sadie, diagnosed at age 26)
  • Fatigue and medication. (Daniel, diagnosed at age 28)
  • Fatigue and ache. (Zaryn, diagnosed at age 28)
  • Just knowing that you have it. (Tabeth, diagnosed at age 28)
  • “You look fine,” but feel bad because of meds. (Itai, diagnosed at age 29)
  • Daily oral chemo side effects. (Kim, diagnosed at age 29)
  • Tiredness and constant fatigue. (Agnieszka, diagnosed at age 29)
  • Splenomeglay hair loss RLQ. Pain. (Balasubramanian, diagnosed at age 29)
  • Fatigue. (Jennifer, diagnosed at age 32)
  • Fatigue. (Katherine, diagnosed at age 32)
  • Side effects of the medicine…fatigue…muscle pain…joint pain. (Kennet, diagnosed at age 33)
  • Side effects. (Iqbal, diagnosed at age 35)
  • No difficult aspects. (James, diagnosed at age 37)
  • Tiredness and pain. (Moira, diagnosed at age 38)
  • Tiredness. (Sarah, diagnosed at age 38)
  • Fatigue. (Anonymous, diagnosed at age 39)
  • Uncertainties. (Judy, diagnosed at age 40)
  • Lifelong taking of TKI with awful side effects. (Jennette, diagnosed at age 40)
  • Chronic pain and fatigue. (Lena, diagnosed at age 41)
  • Understanding you have cancer. (Sally, diagnosed at age 41)
  • Knowing it’s there. (Carol, diagnosed at age 42)
  • Side effects and their effects. Extreme fatigue, memory loss, cognitive problems, whole body pain and muscle weakness. Loss of income: poverty. Depression. (Andy, diagnosed at age 42)
  • Not working due to side effects. (Sue, diagnosed at age 43)
  • Fatigue. (Catrin, diagnosed at age 43)
  • Worrying about getting the medicine. (Jo-Dee M., diagnosed at age 43)
  • Side effects from medications. (Julie, diagnosed at age 44)
  • Fatigue, despair, no confidence. (Michelle, diagnosed at age 45)
  • Tiredness. (David, diagnosed at age 45)
  • Fatigue. (Alison, diagnosed at age 46)
  • Weight gain. (Ajay, diagnosed at age 46)
  • Pains in legs and joints, and the fatigue. (Ann, diagnosed at age 47)
  • Side effects of Gleevec (joint pain, leg cramps, extreme fatigue). (Terri, diagnosed at age 47)
  • Tiredness. Am also IDA with Ferritin and Iron both 8. (Louise, diagnosed at age 48)
  • Fatigue, asthenia. (Toni M., diagnosed at age 48)
  • Workplace acknowledging that I have good days and bad days/lack of support. (Carol, diagnosed at age 50)
  • I just get on with life. (Stuart, diagnosed at age 50)
  • Fatigue. (Tom, diagnosed at age 51)
  • Not knowing. (Laura, diagnosed at age 52)
  • Drug side effects- cramps, aches, fatigue and anxiety. (Kathryn, diagnosed at age 52)
  • Living a normal life with fatigue, tki drug side effects, etc. I live by myself, so it is hard for me to do everything when I need to do it for living & work. I have been forced to cut back and let some things go. (Pamela, diagnosed at age 52)
  • Just worries  of it coming back. (Debra, diagnosed at age 52)
  • Awareness of living with a dangerous disease. (Euzebiusz Jan, diagnosed at age 53)
  • Side effects of tki. (Paul, diagnosed at age 53)
  • Fatigue, anemia, joint pain. (Karin, diagnosed at age 53)
  • Scheduling medication. (Lisa, diagnosed at age 54)
  • Not being able to do what I used to without becoming chronically fatigued, bone and joint pain, side effects of meds, being dismissed by consultants as long as blood counts are within normal range. (Yvonne, diagnosed at age 54)
  • Taking the Chemo 2x7x365. (Dwayne, diagnosed at age 56)
  • Tiredness. (Richard, diagnosed at age 56)
  • Thinking about the future. (Laurie, diagnosed at age 57)
  • Constant need for transfusions associated with chemo, deprived immune system, loss of interest, always tired. (Kim, 57 years old)
  • Fatigue. (Mike, diagnosed at age 58)
  • Being ill for life. (Julianna, diagnosed at age 59)
  • Severe fatigue, stress, financial limitations, drug costs, chemo brain. (Corinne, diagnosed at age 60)
  • Fatigue. (Steve, diagnosed at age 60)
  • Fatigue and loss of many life aspects. (Anonymous, diagnosed at age 60)
  • Side effects of drugs. Constant fatigue. (Mary, diagnosed at age 61)
  • Tiredness. (Robin S., diagnosed at age 66)
  • Not being able to plan ahead. Each day is different. (Rita, diagnosed at age 76)

Chronic Myeloid Leukemia Advice

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

  • Be strong, hope is a powerful thing. (Ryan, diagnosed at age 9)
  • Mind over matter. (Jaycee, diagnosed at age 23)
  • Everything is going to be fine, stay positive and ask questions you want answers to. Question everything that is happening so you are not left out in any decisions. (Jayden, diagnosed at age 23)
  • I am grateful to be alive, therefore I have accepted the necessity of treatments and all the side effects with them. A positive mental state is important and helps take things in stride. Once I was emotionally unprepared and a standard BMA procedure overwhelmed me; I was in tears from the pain and felt helpless and alone. Keep faith, active and positive- you’re doing an amazing job and life can still be fulfilling and full of wonders. (Joyce, diagnosed at age 24)
  • Stay strong and positive no matter what. (Islam, diagnosed at age 25)
  • Everyone has a story. It is ok to tell people you can’t listen to their cancer stories. (Anonymous, diagnosed at age 25)
  • Take glivec or tasigna as soon as possible. (Sadie, diagnosed at age 26)
  • Stay strong, keep smiling. (Daniel, diagnosed at age 28)
  • Be strong. Take it a day at a time. (Zaryn, diagnosed at age 28)
  • Don’t give up taking your medication. (Tabeth, diagnosed at age 28)
  • Seek others, and a specialist who works on your type. (Itai, diagnosed at age 29)
  • Take time to process your diagnosis. (Kim, diagnosed at age 29)
  • You will be okay. It gets tough sometimes, but you will be fine, just make sure you look after yourself and that you have someone to talk to as at times everything might be overwhelming. My husband left me when I stopped responding to Leukemia medication and bone marrow transplants were considered, but guess what I’m still alive, I have a beautiful daughter, I’m still working full-time managing a medical center and and I’m still here…you will be fine. (Agnieszka, diagnosed at age 29)
  • Nothing is impossible. (Balasubramanian, diagnosed at age 29)
  • Do not feel guilty that you cannot do all that you used to. Ask for help. (Jennifer, diagnosed at age 32)
  • Try to remain positive and enjoy like the best you can. (Katherine, diagnosed at age 32)
  • Have faith and give your body time to adjust. It’s okay to be scared. Find people/groups/psy to talk to. You might be reacting without knowing. (Kennet, diagnosed at age 33)
  • Don’t worry. There is hope. (Iqbal, diagnosed at age 35)
  • Don’t let it define you. (James, diagnosed at age 37)
  • We can beat this. (Moira, diagnosed at age 38)
  • You have leukemia, but leukemia doesn’t have you. (Anonymous, diagnosed at age 39)
  • Learn all you can about your disease. (Judy, diagnosed at age 40)
  • Keep taking the needs as directed. (Jennette, diagnosed at age 40)
  • We are CML Warriors now, therefore we must continue to fight this disease. (Lena, diagnosed at age 41)
  • Talk about it, don’t bottle up your feelings. (Sally, diagnosed at age 41)
  • Always ask for information. (Sue, diagnosed at age 43)
  • Treatments are improving all the time. (Catrin, diagnosed at age 43)
  • It doesn’t have to be a death sentence. (Jo-Dee M., diagnosed at age 43)
  • Every person reacts differently to our medications. Learn to know your body and listen to it. Have a great patient/doctor relationship. I’m 8 years strong. (Julie, diagnosed at age 44)
  • Try to keep going, life’s for living. (Michelle, diagnosed at age 45)
  • Big range of medication and if they work for you, you will die from old age, not CML. (David, diagnosed at age 45)
  • Just stay strong and be alert. (Ajay, diagnosed at age 46)
  • Sleep, talk to others. (Ann, diagnosed at age 47)
  • You’re not going to die. It won’t be the same, but it’ll be alright. (Terri diagnosed at age 47)
  • Research has helped CML significantly and most of us lead a pretty normal life with treatment. (Louise, diagnosed at age 48)
  • You’ll not die due to CML…but please, realize asap, your life will change. (Toni M., diagnosed at age 48)
  • You can live with this. It’s a new normal, but you will adjust. (Carol, diagnosed at age 50)
  • It’s a shock at first, but it’s your new normal life now. (Stuart, diagnosed at age 50)
  • Turn to your faith for support. Get info from your doctor and other leukemia patients, rather than the internet. (Tom, diagnosed at age 51)
  • Be positive. Listen to the experts and do as they tell you. Join a support group for when you feel alone. Be open with your friends/family so they can support you. (Kathryn, diagnosed at age 52)
  • Hope! There have been a lot of advancements in the recent years with the tki drugs to treat the leukemias. Many people are living long & productive lives. You will fight & beat your cancer!! (Pamela, diagnosed at age 52)
  • Do not worry and believe that CML will be definitively defeated. (Euzebiusz Jan, diagnosed at age 53)
  • Tki will keep you alive. (Paul, diagnosed at age 53)
  • Hang in there, it does get better. (Karin, diagnosed at age 53)
  • Consider it an opportunity to learn your priorities. Don’t feel sorry for yourself. If you find yourself having a bad day, do something for someone else. (Lisa, diagnosed at age 54)
  • Stay positive, take your meds, join a support group, talk to your loved ones. (Yvonne, diagnosed at age 54)
  • If you have CML, it’s like Type 1 diabetes in that if you take your medication as instructed and live a relatively healthy lifestyle, you can live an otherwise normal life. (Dwayne, diagnosed at age 56)
  • Try and stay calm, there is (long) life after diagnosis of CML. Today with the right treatment you are more likely to die of something else. Go with the flow. (Richard, diagnosed at age 56)
  • Take back your life. Knowledge is power, so get informed about your disease. Let others know what you’re feeling. Know that you are not alone. (Laurie, diagnosed at age 57)
  • You have to learn to live in the moment. (Kim, 57 years old)
  • There have been so many treatment advances. Although your diagnosis is a shock, it is not necessarily a death sentence. (Corinne, diagnosed at age 60)
  • Meet it head on. Try and live your life as you did before being diagnosed. (Steve, diagnosed at age 60)
  • Don’t give up. (Anonymous, diagnosed at age 60)
  • Life carries on. You find a new normal. (Mary, diagnosed at age 61)
  • Talk to support group. (Robin S., diagnosed at age 66)
  • Be strong, accept it and be positive. You will beat it. (Rita, diagnosed at age 76)

Chronic Myeloid Leukemia Recommendations

Anything you would recommend for someone with CML?

  • Take your meds, research, choose to live despite daily side effects. (Ryan, diagnosed at age 9)
  • Persevere through med side effects. (Ryan, diagnosed at age 10)
  • Mind over matter. (Jaycee, diagnosed at age 23)
  • Head up, don’t give up. (Jayden, diagnosed at age 23)
  • Normalcy of life can be maintained by keeping active both mentally and physically, but be patient and gentle with yourself and close ones when the side effects or frustrations, or fear get the better of you. They will pass; stay positive. (Joyce, diagnosed at age 24)
  • Live your life as if you had never been diagnosed. (Islam, diagnosed at age 25)
  • Find a specialist in your specific leukemia and add alternative healing modalities to your health plan. (Anonymous, diagnosed at age 25)
  • CBC after every six months. (Sadie, diagnosed at age 26)
  • Keep active. (Daniel, diagnosed at age 28)
  • Don’t just use general oncologists. (Itai, diagnosed at age 29)
  • Find someone who specializes in it. (Kim, diagnosed at age 29)
  • Take it easy. (Agnieszka, diagnosed at age 29)
  • Be strong. (Balasubramanian, diagnosed at age 29)
  • Take naps, give yourself a break. (Jennifer, diagnosed at age 32)
  • Listen to your body – rest when you need to. (Katherine, diagnosed at age 32)
  • Don’t accept living with too many side effects. There are more types out there. And, a change might improve your living. (Kennet, diagnosed at age 33)
  • Doctor’s advice. (Iqbal, diagnosed at age 35)
  • Don’t google! Join the Facebook group. (Moira, diagnosed at age 38)
  • Never give in. (Anonymous, diagnosed at age 39)
  • Keep going. (Jennette, diagnosed at age 40)
  • Don’t give up, yes continue to fight this condition, for we can’t let cancer win. (Lena, diagnosed at age 41)
  • Don’t Google it. (Sally, diagnosed at age 41)
  • Not experienced enough yet to give tips! (Carol, diagnosed at age 42)
  • Stay strong. (Andy, diagnosed at age 42)
  • Join a support group. (Sue, diagnosed at age 43)
  • Speaking to others with the condition. (Catrin, diagnosed at age 43)
  • Stay positive. (Jo-Dee M., diagnosed at age 43)
  • Educate yourself and see a CML Specialist. (Julie, diagnosed at age 44)
  • Facebook support group. (Michelle, diagnosed at age 45)
  • Don’t have a bmt unless your life depends on it. (David, diagnosed at age 45)
  • Stay strong and positive. (Ajay, diagnosed at age 46)
  • Sleep. (Ann, diagnosed at age 47)
  • Light exercise, sleep!! Read all you can. (Terri, diagnosed at age 47)
  • Have more time off work and don’t rush back. Talk to people. (Louise, diagnosed at age 48)
  • Read real experiences…the doctors are “far away” from real life. (Tony M., diagnosed at age 48)
  • Read accurate information. (Carol, diagnosed at age 50)
  • Remember you have CML, and it doesn’t have you. (Stuart, diagnosed at age 50)
  • Get answers from experienced CML patients. (Tom, diagnosed at age 51)
  • Positive attitude, always take the meds as instructed, be open and inform friends, family and colleagues of your problems. (Kathryn, diagnosed at age 52)
  • Ask questions, read and keep notes for reference when meeting with doctor. Your memory may become poor during the initial shock and early stages of test & treatments. It is a good idea to have someone drive you and be with you at all appointments. There is stress from the unknown, waiting to hear updates and a lot communicated. It can be hard to hear it all when you are not feeling well and/or are stressed. Be prepared to accept all kinds of help. Everyone reacts differently when they hear someone has cancer. Lower your expectations and then when someone offers to help, no matter how big or small, it will be a bonus. Early on with treatment, there will be days you will be able to do a lot and then other days you will not be able to get out of bed. Your body needs extra rest every day! You will learn your new normal. I was not a passive person before cancer and I am not willing to slow down because of it. I may do less each day but I keep going & doing. I take naps, get extra sleep, eat more clean and try to be good to myself, and I am living life. Quality of life is important to me. Hope! Peace. Live life! (Pamela, diagnosed at age 52)
  • Try to live normally. (Euzebiusz Jan, diagnosed at age 53)
  • Live your life as normally as you can. (Paul, diagnosed at age 53)
  • Educate yourself, and ask lots of questions. (Karin, diagnosed at age 53)
  • Know your limits but don’t let it hold you back. (Lisa, diagnosed at age 54)
  • Stay positive because the prognosis is good, even though you may struggle with side effects. (Yvonne, diagnosed at age 54)
  • Get plenty of exercise and eat healthy. (Dwayne, diagnosed at age 56)
  • Check out the support groups for a great source of help. (Richard, diagnosed at age 56)
  • Keep trying to live your life back. Reach out to others. Learn as much as possible about this disease. Know your enemy. (Laurie, diagnosed at age 57)
  • I recommend keeping self aware of Tx options so as to make the best informed decisions for yourself. (Kim, 57 years old)
  • Don’t panic. (Mike, diagnosed at age 58)
  • Try to keep your old life. (Julianna, diagnosed at age 59)
  • 1. See a leukemia specialist. 2. Don’t miss a dose. (Corinne, diagnosed at age 60)
  • Tackle it head on. Do not bow down to it, treat it with contempt. (Steve, diagnosed at age 60)
  • More information and understanding from doctors, nurses, the whole medical team. (Anonymous, diagnosed at age 60)
  • Ask questions, try to focus on the other stuff. (Mary, diagnosed at age 61)
  • You need an understanding support system. (Rita, diagnosed at age 76)

Chronic Myeloid Leukemia Remission and Relapse

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

  • Diagnosed Sept 1,2015. Recent PCR came back non-detect in blood. (Ryan, diagnosed at age 9)
  • Almost in remission. (Jaycee, diagnosed at age 23)
  • MMR. (Jayden, diagnosed at age 23)
  • 14 years on Imatinib with over 10 years in remission; achieved MMR within 2 months of switching to Nilotinib due to deterioration in quality of life from high level intolerance to side effects. (Joyce, diagnosed at age 24)
  • None yet. (Islam, diagnosed at age 25)
  • She was diagnosed two months ago, so no history. (Anonymous, diagnosed at age 25)
  • I am in remission phase after 7 months of diagnose, by taking proper glivec. (Sadie, diagnosed at age 26)
  • Only one year with CML. (Daniel, diagnosed at age 28)
  • Never achieved remission yet. (Itai, diagnosed at age 29)
  • I haven’t hit remission yet. (Kim, diagnosed at age 29)
  • Diagnosed in 2011, been on gliveec until 2015, then it was discovered that I developed two mutations and now I’m on sprycel. (Agnieszka, diagnosed at age 29)
  • Only found recently (Balasubramanian, diagnosed at age 29)
  • Been in remission once and lost it after pregnancy. (Jennifer, diagnosed at age 32)
  • Diagnosed April 2013. Started on imatinib – didn’t work – went to blast crisis. Flag-Ida chemotherapy to get back to second chronic phase. Transplant October 2013 from unrelated donor. Been in remission ever since. Still take Nilotinib. (Katherine, diagnosed at age 32)
  • 3 medicine chances, and it’s below the golden number and moving towards not showing in the blood….date 25/7/2016. Diagnosed 27/12/2016. (Kennet, diagnosed at age 33)
  • Remission after 6 months. No relapse. (James, diagnosed at age 37)
  • Diagnosed 1992. Bone marrow transplant 1993. Relapse 2004. Glivec for 8 years. Treatment-free for the past 4 years. (Judy, diagnosed at age 40)
  • Remission briefly achieved post BMT and then only more recently through TKI. (Jennette, diagnosed at age 40)
  • Still on daily chemo pills. (Lena, diagnosed at age 41)
  • Just gone into remission. (Sally, diagnosed at age 41)
  • Only six weeks post diagnosis. (Carol, diagnosed at age 42)
  • PCR remains low with just a couple of blips. (Andy, diagnosed at age 42)
  • Both. (Sue, diagnosed at age 43)
  • Remission within 6 months. (Catrin, diagnosed at age 43)
  • My numbers continue to go down. Completely undetectable. (Jo-Dee M., diagnosed at age 43)
  • I go back and forth. I’ve accepted that I will only be able to maintain where I am and I’m great with that. (Julie, diagnosed at age 44)
  • Got into remission year into treatment. Had blip along the way with numbers. (Michelle, diagnosed at age 45)
  • After bmt in 2005 by 2008 relapsed, been on nilotinib since January 2009. (David, diagnosed at age 45)
  • Only been in remission once, but never quite get there now. (Ann, diagnosed at age 47)
  • Slow responder; numbers reducing, but not in remission after 18 months. (Terri, diagnosed at age 47)
  • No experience on that yet. (Tony M., diagnosed at age 48)
  • BCR-ABL has dropped from 96% to undetectable within 9 months of starting treatment. (Carol, diagnosed at age 50)
  • Still undetectable. (Stuart, diagnosed at age 50)
  • Progressing nicely toward undetectable. (Tom, diagnosed at age 51)
  • Had CML for 5 years and been undetectable for more than 2 years. (Kathryn, diagnosed at age 52)
  • No official remission for CML. I achieved major molecular response (MMR) within my first 5 months of daily Sprycel 100mg (never missing a dosage). It was not easy, but the results made the side effects not seem as bad … I continue with my daily dosage. (Pamela, diagnosed at age 52)
  • 4 1/2 years in remission. (Debra, diagnosed at age 52)
  • My CML has been at the same level for 13 years. (Euzebiusz Jan, diagnosed at age 53)
  • I haven’t been able to get past CMR. (Karin, diagnosed at age 53)
  • None. I’ve only been diagnosed for 5 weeks. (Lisa, diagnosed at age 54)
  • Deep response to meds, reduced in May, but increased slightly, so back on higher dosage. (Yvonne, diagnosed at age 54)
  • None yet. (Dwayne, diagnosed at age 56)
  • Diagnosed 2000, remission 2001, undetectable 2007. (Richard, diagnosed at age 56)
  • Only diagnosed in May 2016, fingers crossed. (Laurie, diagnosed at age 57)
  • I’m currently treatment free. (Mike, diagnosed at age 58)
  • Within six months I achieved complete molecular response. (Julianna, diagnosed at age 59)
  • Getting there. (Steve, diagnosed at age 60)
  • There is no such thing as remission with CML. It’s a RESPONSE. As long as you take chemo every day, it cannot be considered remission. (Anonymous, diagnosed at age 60)
  • Tried going drug-free after 6 years, but relapsed so had to return to TKis. (Mary, diagnosed at age 61)
  • On nilotinib in major remission, thank God. (Robin S., diagnosed at age 66)
  • Currently in MMR. (Rita, diagnosed at age 76)

Chronic Myeloid Leukemia Treatments

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

  • We “just” take daily Tki (sprycel). (Ryan, diagnosed at age 9)
  • Tki meds – sprycel. (Ryan, diagnosed at age 10)
  • Chemotherapy and Sprycel. (Jaycee, diagnosed at age 23)
  • I haven’t really had side effects, I’ve been changed once off my chemo from imatinib to dasatinib. Other than that, pretty normal. (Jayden, diagnosed at age 23)
  • In the main, my experience has been positive with manageable side effects. I responded well to Imatinib and Nilotinib; PCR results between MMR and DMR. (Joyce, diagnosed at age 24)
  • I have taken chemo called Cytosar once. It was an awful experience. But my oral treatment now is just fine. (Islam, diagnosed at age 25)
  • Sprycel 50 mg trial. (Anonymous, diagnosed at age 25)
  • Just medication. (Sadie, diagnosed at age 26)
  • Tablet Chemo. (Daniel, diagnosed at age 28)
  • I can’t tolerate tkis for more than one month at a time. (Itai, diagnosed at age 29)
  • I am having a hard time tolerating the side effects of TKIs. I have yet to find one I can take. (Kim, diagnosed at age 29)
  • No transplant, no chemotherapy so far. (Agnieszka, diagnosed at age 29)
  • I’m taking Imnitab controllable. (Balasubramanian, diagnosed at age 29)
  • Taken gleevec since diagnosis, gained 80 pounds, always tired. (Jennifer, diagnosed at age 32)
  • Flag-Ida chemotherapy, Total body irradiation, Transplant from unrelated donor. (Katherine, diagnosed at age 32)
  • It’s been a tough ride. Lots of side effects. (Kennet, diagnosed at age 33)
  • Imatinib then switched to Nilotinib. (James, diagnosed at age 37)
  • Nasty side effects. (Moira, diagnosed at age 38)
  • Transplant was very difficult. Relapse was devastating. Glivec was very effective, but the side effects were often difficult to deal with. (Judy, diagnosed at age 40)
  • BMT twenty years ago, was on hydroxyurea for a few months and interferon for a few months, now Glivec from early days of it post trials. Also needed treatment for shingles in eye and cytomegalovirus. (Jennette, diagnosed at age 40)
  • Hardship. (Lena, diagnosed at age 41)
  • Tki treatment. (Sally, diagnosed at age 41)
  • Chemo tablets and now TKI’s. No side effects apart from bone pain. (Carol, diagnosed at age 42)
  • Reduced Dastinib to minimum amount to try to offset side effects. It worked incredibly well despite the effects and low dose. Easy to take. (Andy, diagnosed at age 42)
  • Although they work, the side effects are not nice. (Sue, diagnosed at age 43)
  • Nilotinib works well but does impact quality of life. (Catrin, diagnosed at age 43)
  • One med the entire eight years. (Jo-Dee M., diagnosed at age 43)
  • In almost 8 years, I’ve been on 4 different TKI’s. Treatments come and treatments go, but I’m still here. (Julie, diagnosed at age 44)
  • Side effect are hard to endure. But at least I’m alive! (Michelle, diagnosed at age 45)
  • Bmt on 1/12/2005. (David, diagnosed at age 45)
  • Gleevec. Makes me nauseous. (Alison, diagnosed at age 46)
  • Tki. (Ajay, diagnosed at age 46)
  • Been on three different drugs. (Ann, diagnosed at age 47)
  • Nilotinib intolerable (pancreatitis); Gleevec tolerable, but works slowly. (Terri, diagnosed at age 47)
  • Oral chemo very tiring (50 days) and then Dasatinib which initially caused really bad headaches for 6 months but gradually subsided. Now I am OK. My hair also thinned considerably, but it grows. (Louise, diagnosed at age 48)
  • I’ve got 9 months of Gleevec, and then changed to Sprycel due to nod fast reduction of BCR-ABL. (Tony M., diagnosed at age 48)
  • The side effects are sometimes worse that Leukaemia. Treatment is for life. (Carol, diagnosed at age 50)
  • Loss of body hair, vomiting, but over all it’s not been too bad. (Stuart, diagnosed at age 50)
  • Oral chemo side effects have varied in intensity, and are now minimal and manageable. (Tom, diagnosed at age 51)
  • TKI – Imatinib – works well for me, but gives side effects. (Kathryn, diagnosed at age 52)
  • We caught this early. I take one chemo pill each night. My side effects were really hard at first, but now they are less. (Pamela, diagnosed at age 52)
  • Chemo- very good. (Debra, diagnosed at age 52)
  • I have been using Gleevec for 11 years and then Tasigna (for the last 2 years). (Euzebiusz Jan, diagnosed at age 53)
  • Imatinib- diarrhea, nausea, fluid retention and joint pain. (Karin, diagnosed at age 53)
  • Tasigna is working very well with no noticeable side effects. (Lisa, diagnosed at age 54)
  • No transplants required, oral chemo daily. (Yvonne, diagnosed at age 54)
  • Sprycel nearly killed me with pleural effusion. Tasigna is working but it controls 6 hours out of your day. (Dwayne, diagnosed at age 56)
  • Luckily got on the first UK trial for Glivec, never looked back. (Richard, diagnosed at age 56)
  • So far so good on Gleevec 400mg daily. The side effects are easing up. (Laurie, diagnosed at age 57)
  • Multiple failed oral chemo medications. (Kim, 57 years old)
  • Only TKI’s. (Mike, diagnosed at age 58)
  • Newer and newer symptoms of side effects appear. One disappears, another comes. (Julianna, diagnosed at age 59)
  • After two and a half years, six months of PCRU. (Corinne, diagnosed at age 60)
  • I’ve been lucky and have only had to take a daily tablet. (Steve, diagnosed at age 60)
  • Many side effects. (Anonymous, diagnosed at age 60)
  • Well controlled firstly by Imatinib and then Nilotonib. (Mary, diagnosed at age 61)
  • Chemo is brutal and dictates your life. (Rita, diagnosed at age 76)

Chronic Myeloid Leukemia Resources

What specific CML resources have you found most helpful?

  • CML Facebook groups, especially those for children with CML. (Ryan, diagnosed at age 9)
  • Family. (Jaycee, diagnosed at age 23)
  • NZ Blood Foundation books. (Jayden, diagnosed at age 23)
  • Support from loved ones. (Joyce, diagnosed at age 24)
  • Mayo Clinic website. (Islam, diagnosed at age 25)
  • Still looking for something- my wonderful support network. CMLSupport.org. (Anonymous, diagnosed at age 25)
  • Novartis. (Sadie, diagnosed at age 26)
  • Leukemia Care. (Daniel, diagnosed at age 28)
  • Taking medication. (Tabeth, diagnosed at age 28)
  • CML specialist. (Itai, diagnosed at age 29)
  • CML support groups. LLS. (Kim, diagnosed at age 29)
  • Facebook groups where I can share my worries or concerns. (Agnieszka, diagnosed at age 29)
  • Waiting for resources. (Balasubramanian, diagnosed at age 29)
  • Facebook groups. (Jennifer, diagnosed at age 32)
  • Blood Cancer Charities. (Katherine, diagnosed at age 32)
  • A good laugh and friends/family to talk to. (Kennet, diagnosed at age 33)
  • Facebook groups. (Iqbal, diagnosed at age 35)
  • CML group on Facebook. (Moira, diagnosed at age 38)
  • Support group. Particularly online ones. (Judy, diagnosed at age 40)
  • Facebook forum. (Jennette, diagnosed at age 40)
  • Support groups. (Lena, diagnosed at age 41)
  • Facebook support group. (Carol, diagnosed at age 42)
  • CML support group. Counseling. (Andy, diagnosed at age 42)
  • Support groups. (Sue, diagnosed at age 43)
  • Facebook group. (Catrin, diagnosed at age 43)
  • My Doctor’s staff. (Jo-Dee M., diagnosed at age 43)
  • National CML Society. (Julie, diagnosed at age 44)
  • Facebook support group. (Michelle, diagnosed at age 45)
  • FB CML groups. (Alison, diagnosed at age 46)
  • Family and friends. (Ajay, diagnosed at age 46)
  • Facebook circle of friends, cancer center support. (Terri, diagnosed at age 47)
  • CML Facebook group and the internet. (Louise, diagnosed at age 48)
  • Explanations about side effects. (Tony M., diagnosed at age 48)
  • CML pages on Facebook, McMillan and St. David’s Hospice. (Carol, diagnosed at age 50)
  • None. (Stuart, diagnosed at age 50)
  • CML Facebook groups. (Tom, diagnosed at age 51)
  • Facebook support group. (Kathryn, diagnosed at age 52)
  • My family, friends, self read, my network of doctor friends, Facebook pvt groups & the Dr. managing my treatment. I am very thankful to everyone! (Pamela, diagnosed at age 52)
  • Hope to get rid of the CML effectively. (Euzebiusz Jan, diagnosed at age 53)
  • Support group. (Karin, diagnosed at age 53)
  • A great doctor and daughter who is an R.N.. (Lisa, diagnosed at age 54)
  • Facebook support group, patient/carer groups. (Yvonne, diagnosed at age 54)
  • Facebook. (Dwayne, diagnosed at age 56)
  • The Internet, CML Support, Macmillan Support. (Richard, diagnosed at age 56)
  • The Living with CML Facebook page. (Laurie, diagnosed at age 57)
  • CML support group online. (Kim, 57 years old)
  • CML Facebook site. (Donna, diagnosed at age 57)
  • CML Facebook page. (Mike, diagnosed at age 58)
  • CML-IQ. (Julianna, diagnosed at age 59)
  • Facebook groups. (Corinne, diagnosed at age 60)
  • Macmillan and Facebook group. (Steve, diagnosed at age 60)
  • Communication with others who also have this disease. (Anonymous, diagnosed at age 60)
  • Moderate exercise, drinking water. (Mary, diagnosed at age 61)
  • Informed wife’s support. (Robin S., diagnosed at age 66)
  • Support groups online. (Rita, diagnosed at age 76)