Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
Just wondering if there is anyone out there who is a teenager or young adult who has been diagnosed with CML? or parents or carers of young persons with this type of cancer ? My daughter was diagnosed last year in May, but things are not going so well at present. I have been told by doctors that CML is rare in children and young persons, so we feel a bit alone! Most young persons we have come across seem to have been diagnosed with acute types of leukaemias, or other chronic forms that are more common in young persons. Still happy to hear from ANYONE who has experience of CML though. Doesn't seem to be that many people out there!
She is resistant to Imatinib and nilotinib, two bone marrow biopsies and blood tests have not detected a mutation, she has been brilliant at taking her medication every day on time, and has avoided certain foods etc that can affect it, currently on Dasatinib to try to reduce the number of cancer cells in her blood and bone marrow as they are too high at present. seems to be going Ok at present, but she is being prepared for stem cell transplant next month. She is still in the current phase which is good news.
She seems to cope with it all better than I do, she just seems to take everything in her stride, and is quite matter of fact about it, she is very knowledgeable about it, as she has done alot of reading and is always asking alot of questions when she goes to haematology clinic to see her Consultant, which again is great. When she was diagnosed, she was sitting her GCSEs, and still managed to pass them all despite everything that was happening at the time, i am very proud of her and admire her resilience.
I am still finding it difficult to get my head around it all; I know it sounds odd, but she has never looked unwell or suffered any weight loss or side effects of any of her medication, she was diagnosed by a routine blood test for anaemia because she had heavy periods and a couple of dizzy spells, she said she never felt unwell either, despite the fact that her haemoglobin was at 4 at the time of diagnosis, and she was still playing netball, running around etc! So it was a massive shock to everyone when we were told she had CML. She was in hospital for a week, had treatment, and commenced A TKi shortly after. I am so pleased and grateful that she didn't experience anything painful or adverse; But sometimes none of it seems real! I know that a person doesn't have to look unwell or take on the "sick role" to have a life threatening disease; Maybe I have been conditioned by media, as alot of people probably associate leukaemia with chemotherapy and side effects, hair loss, nausea, vomitting, and CML is very different. in the way it is treated. Am I making any sense?
Although there are no guarantees with any treatment, we tried to remain optimistic about everything, but to tell the truth, I am teriified, There is also the additional issue of me being called an overprotective mum by my daughter, who will be 17 this month.
I have two other children aged 19 and 24, my 19 year old is at university, so have experience of raising teenagers. I have my daughters best interest at heart and want to be there to support her in every way i can, But feel sometimes like she is shutting me out! she gets very annoyed if i ask her if she is Ok! I sometimes feel like nothing I do is right. I try to put myself in her shoes, and think about how she might be feeling; cancer is a massive life changing experience, it would be difficult for an adult to deal with it, so I could only imagine how hard it would be for a very young person, she has had her life turned upside down. and has had to put her plans on hold, which I know frustrates her.
Would love to hear from any parent of a teenager or young person who has had cancer or still being treated, would like to know about your experiences, any tips would be greatly appeciated
Hi, first of all you are not alone and secondly congratulations for supporting your child.
I was diagnosed with CML just before I become 19 year old, two years ago. Now I am really well. I understand it seems weird and lonely to have a type of Leukaemia which is common to old people. All the sites on internet for support where speaking about old people with CML and I felt really bad and weird in the beginning. As a young person with CML I can tell you that all we want is our family to be there for us and not change everything we want a normal life full of love. I remember my mum crying in the beginning but when she saw me fighting and doing well she understood that I am still there and I can be ok.
Do not think or let your child think that everything is over because it is not. It will get better at some point. She need to study and do things that makes her happy. Stress is not good at all. I was in my first year in the uni and I failed my exams because I could not attend the lectures I was terrible sick most of the times. But the second year I did much better, I had to repeat my first year but who cares, I was alive and well. I couldn’t really got to parties etc because I used to get infections really easy, but I did other things. It was hard in the beginning, but now I am ok. I met my boyfriend a year ago, and after few dates I decided I had to tell him about my health. I was expecting him to walk away, but he just hold me and stand by my until today. People can surprise you, even your self can surprise you.
Don’t feel bad or lonely you are not. Everything is going to be fine. I know it doe not really make sense now but it is truth. Support your child as much as you can, but do not be overprotected, I needed a lot of time alone the first year, and I felt that my mother was all over me because she felt sorry about me and I didn’t like it. It sounds unreasonable but is how I felt, we still need our space especially after this because we suddenly grow up, we she our life with expiration date the moment when we thought we can do everything forever.
always remember to live every day of your life like it the last. Because I personally believe that is what I learned from cancer, that every min is important and can be magical and amazing J.
If you have any questions let me know, I am here if you need me
Hello. I am sorry to hear about your daughter. I have cml but I am 58. However I would recommend that you check out the cml Facebook support group. There are several members who are in their late teens and early 20s. Everyone is fantastically knowledgeable and supporting. There is also a cml support website. Good luck.
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