Hello ☺️
So my son (13) was diagnosed with CML 21st January this year so this is all new to us. Apparently CML in someone under the age of 20 is unusual so I'm not really sure where to turn to for advice. Stumbled on this site via Google so hello and if anyone else has a child with CML I'd be glad to know how you're managing to keep it all together 🥺
You are here
Hi I'm new 👋🏼
Categories:
Hi Hazel,
I'm sorry to hear about your son's diagnosis. CML is unusual in kids, but not so rare that it's totally unheard of. The average person with CML gets diagnosed in their fifties. I do know a few people who are well into adulthood now but were diagnosed as a young child and are doing just great these days and living a fully normal life. Yunus is one of them, and you can read a bit about his story here: https://eurobloodnet.eu/news/712/rare-disease-day-2026-yunu-s-story - he's in his mid twenties now.
Hopefully someone with shared experience will reply to you soon, but I would also point you to a Facebook called "Children with CML". There are several hundred in that group, and I think you might find it very helpful.
David.
Thanks for your reply David, unfortunately I don't have Facebook ...I have Instagram and X though so if anyone hears of any groups I'd love to be pointed in their direction! We've just started this journey so any information and experiences help as I feel it's better coming from people living in the same type of bodies as my son. He's at that weird age where he wants to be treated as a grown up but also has fun doing the silly stuff with his younger siblings and family members 😂
He's had enough of adults with clipboards walking in front of him, talking at him then leaving a pamphlet for him to read, if I can get information into him in a way he reacts to it will help the both of us.
I admit I've been a lurker on here for a couple of weeks before having the courage to sign up and post...also on the MacMillan pages too. The experiences talked about here are invaluable. Thank you
My son was diagnosed at 18. Not quite an adult, no longer a child. He'd just started university and was living at home. The first 6 months were a blur filled with blood tests, appointments and a very steep learning curve. As a parent, it was challenging trying to figure out how best to support him, and to establish appropriate boundaries. As an adult, all test results and appointment notifications went to him. We as parents were on the sidelines. At the same time, he needed the support of a parent to help him navigate everything.
The challenges for someone so young are many. At a time when their friends are moving forward with life, they are facing an existential crisis. The future they thought they were working towards has suddenly changed. There is a mourning period, for them and their parents. I will admit to high levels of anxiety bordering on panic for the first three years. The logical part of your brain can read all the science and know they are going to be okay, but the emotional Mom part of your brain is devastated and horrified that this has happened to your child. As many have said, if the diagnosis had been some other chronic condition without the word cancer in it, your anxiety level would be much lower. It is that word "leukaemia" that is so frightening. Hard as it may be, try to focus more on the word "chronic".
The good news is it gets better. Four years post diagnosis, my son is doing well. His BCR/ABL test went below 1.0% within the first six months of starting treatment, and it has been on a slow, though occasionally bumpy, decline ever since. He has not yet reached that magic Log3/0.10% level, though he is agonizingly close. I suspect his next test results will show he has finally crossed that threshold. He still goes for bloodwork every three months, and takes one pill a day. It took time, but life did settle back into some kind of normalcy. I think some people have reached the point where they almost forget that he has this.
The hardest part has been watching him struggle with coming to terms with the diagnosis. It has only been in the last year or so that I feel he has returned to himself. His sense of humour has finally come back! I cannot recommend enough making sure that you tap into any peer support programs that you may have available. It took my son three years to get to a point where he was willing to talk to someone, but when he finally did, it was transformative. He was matched with someone in their early 40s that had been diagnosed as a teenager. This meant they knew what he was going through, but could also show him that he has a future ahead of him. Cannot express how grateful I am for that kind of program and the support they provide.
And come back to this forum whenever you need to, even if it is to just lurk. This forum has been my lifeline, with many thoughtful insights and calming voices.
Oh my, it's like you're in my brain!! I'm so glad your son's a lot more stable now, we're only in month 3 and everything is happening either really fast or like slow motion it's the craziest situation to try to explain to somebody. My son has fantastic friends and family fortunately that have offered a lot of support. He's quite shy so getting him to speak to other people with CML is a long way off yet I feel. The aches and pains are hardest for me I think....he was being sick, I rubbed his back but me rubbing hurt his bones - I felt completely lost as his mum, we are supposed to protect our babies 😫
We have just spoken with a support worker and she's helping us a lot however I feel my boy needs to speak to others of a similar age who have lived in his bones. We are going to start with coffee mornings at University College London next week so hopefully that gets us in touch with people face to face. I'm so so grateful for your reply...my lurking paid off!! 😜
Hazel,
If you are in London (presuming so, with the UCL coffee morning planned) then you might want to join our CML patient seminar in May.
You can register here:
The morning is more general blood conditions, but there’s a breakout in the afternoon just for CML where there’ll be something like 30 patients and some doctors and nurses from expert centres.
It’s free, and if you do come it would be nice to say hello in person!
David.
My son is 13 now and he was diagnosed 3 years ago.
I could type a long message on everything we have experienced but a lot of it might be unique to us (esp the psychological challenges). Since your child has just been diagnosed, I'd limit it to what we observed at this stage>
* The first 1-2 months were spent discussing the causes and prognosis for CML. Luckily there are lots of resources on the web. We encouraged him to refer the booklet that LLS has published - https://llsorg.widen.net/view/pdf/8epdjtuzkj/en-booklet-cml-detail-ps31....
I'd rather he gets his doubts cleared here than on a google search
* He hasnt missed a single day of medication except when the doc temporarily stopped (for a few days due to fever)
* The medication went off fine first few months except for the nausea
* He started getting severe leg pain after 3 months. His Vit D3 levels were consistently low and we had to give him supplements. This was the most challenging phase as the pain was intense and at its worst at night. he couldn't sleep well due to the pain - only hot shower helped ease the pain (he used to shower 3-4 times in the night and go back to sleep). This lasted for 3-4 months - the pain improved and he also got used to it (not that he had a choice)
* Every time he had temperature over 101 for over 24 hrs, his onco would put him on anti-biotics. There isnt a choice here as he was immunocompromised
* He got tired faster than he used to. Physical activity reduced a lot. I wish we had pushed him to be more active then but hindsight is 20/20
* There are so many possible side effects (we have seen skin rashes, extreme fatigue, leg pain, joint pain, sleeplessness, too much sleep) that you can only handle once it happens. There isnt a proactive solution.
* Our biggest challenge as parents was to do what was right for his body vs what was right for his mind. We just dont know how much to push. And we dont know when to panic but with time, we figured, as would you
* This is a cancer with no visible signs. No one can tell he has CML unless we tell them. This can be a challenge at times (why isnt he playing with us the way he used to).
Hope this helps.
Hi Hazel,
I am so sorry to hear that your son was diagnosed with CML at such a young age. As both a long-term survivor and a mother myself, I often look back and wonder how my parents, especially my mom, found the strength to cope with their child’s illness during those early years. It is only now, as a parent, that I truly appreciate the emotional weight they carried while trying to remain hopeful and strong for me.
I want to wish your son and your family all the very best, and I hope that sharing a little of my own journey will offer some reassurance about his future. While living with CML does come with its own unique challenges, tremendous advances in treatment over the past two decades have transformed the outlook for patients.
I was diagnosed with CML in 2000 when I was 12 years old. I am 39 now, married, and have twins who were born through surrogacy. I was born and raised in India, but I have been living in the United States for some time now.
Despite being on a TKI for nearly 24 years, I have had normal growth and development and have been able to live a full life. I still feel anxious in the week or two leading up to my oncologist appointments, especially since becoming a parent. There is always a small part of me that worries about what the test results will show. At the same time, I remind myself that I have taken my medication consistently for more than 20 years and have done my best to maintain a healthy lifestyle. That perspective helps me keep the anxiety in check and focus on what I can control. I also notice I am very clinical and not emotional when I speak about my CML diagnosis and treatment, which I think is a coping strategy that I have developed over the years. I also try not to involve my husband in my CML treatment decisions/discussions, as I do not want to cause him any worry about my health.
A little about my medication history, I was treated with hydroxyurea for about two years before starting imatinib in 2002. With imatinib, I struggled with medication adherence due to supply issues, and the treatment also caused significant nausea and severe muscle cramps. Consequently, I relapsed and developed a mutation, which led to a switch to dasatinib in 2007. I have remained on dasatinib ever since and have maintained a MMR4 since 2013. I attempted treatment-free remission twice, first in 2016 when I hoped to become pregnant and again in 2018 while pursuing IVF. Both times, I relapsed within three months and had to restart treatment. In 2022, I also tried reducing my dosage, but I lost my MMR4 response and returned to my previous dose.
I do have my regrets. I wish I had never developed this condition, especially at an age when I should have been focused on enjoying childhood, spending time with friends, and concentrating on school. I watched my parents carry both the emotional and financial stress of my illness, and even today I sometimes struggle with guilt over the sadness and worry my diagnosis brought into their lives during what should have been some of the most productive years of their adulthood.
At the same time, I am grateful that my diagnosis was CML, a disease that has allowed me to live a largely normal life. Most people, including some of my closest friends, do not know that I have CML unless I choose to tell them. Over the years, I have become selective about sharing my diagnosis because I often feel that people treat me differently once they know. Many are surprised when I tell them. I am frequently told that I am "mentally strong," but I have never been entirely comfortable with that description. I see myself as a fairly ordinary working mother and wife doing the best she can with the circumstances she has been given.
One thing I wish I had done differently when I was younger is to stay physically active and prioritize my overall fitness. Shortly after my diagnosis, I contracted chickenpox, and my parents became concerned about my health and immune system. Out of caution, they kept me home, and I was homeschooled for nearly two years and that period led me to develop some unhealthy habits. I became less active, turned to food as a way of coping with stress, and developed behaviors that have taken years to recognize and address. I also wish my parents had treated me normally and had the same expectations out of me as they had for my sibling. Because of my diagnosis, they were often reluctant to push me academically and had lower expectations for my performance in school. I took advantage of that at times and, as a result, did not perform as well academically as I could have. Thankfully, during and after college, I recognized the importance of becoming financially independent and worked hard to get my education and career back on track. I also wish I had been able to take imatinib more consistently during those early years. Because of my inconsistent intake (issues with accessing the drug, so not much that I could have controlled there), I developed resistance to the drug. And studies have shown that Treatment free remission is less likely for those that had treatment failure with prior TKI's.
Despite the challenges, CML has also shaped me in unexpected ways. It has taught me resilience, gratitude, and the importance of family and friends. Wishing your son a healthy future and your family strength and hope as you navigate this journey together.