16 year old with CML

Hi, new to this site, my 16 year old son got diagnosed with CML yesterday, I was just wondering if anyone else of the same age has had the same diagnosis? We were told that is very rare in his age group to have CML, we are going to see a specialist on Monday and hopefully will find out more then and have some questions answered along with setting up his treatment.Hopefully we can hear some of your journeys that will help us through this journey. I am going to set my son up on this site himself once he is ready.

Thank you x

  • Hi  and warm welcome to this little corner of the Community but sorry that you had to find us and especially sorry to hear about your son's CML diagnosis.

    I am Mike and I help out around our blood cancer groups. I was diagnosed back in 1999 with a rare incurable skin Non Hodgkin’s Lymphoma so my blood cancer is rather different but have been on this journey rather a long time.

    There have been a small number of folks over the years come through the community in the same position so lets look for them to still be looking in.

    Gathering clear information is very important so can I highlight Leukaemia Care UKs top Leukaemia support and information charity.

    The Teenage Cancer Trust will also be a good place to connect with as well

    We also have our Parents of children with cancer group as well - it's not a busy group but do join and put a a post and see if you connect in with someone.

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

    Talking to people face to face can be very helpful but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing especially with teens.

    Always around if you need further help in navigating the community.

    All the very best ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • My son also 16 was diagnosed 2 days ago, what a whirlwind we have been in this last week. I can't think what to write but just wanted to say hi. 

  • Hi 

    How are you and your son feeling? I send you a big supportive hug as i know it will be very much needed.

    We are nearly 5 months into our journey now and it still feels like a whirlwind although things have settled down slightly now. We are still confused quite often and don't fulling understand CML still as it's all such a lot to take in.

    If it would help I can tell you abit about Kieran and his journey so far, if your not ready then no worries, here when you need us 

    Take care x

  • I would love to hear kierans journey so far. Is there a way of private message I'm new to forum as well as cml!!!!!!

    Thank you for replying xxx 

  • Hi  and welcome to the Mac Community. Let’s hope that  picks up on your post. Folks initially find the community and put up a post but the complications of life overrides them coming back to the site.

    Do check out the links I put up on the intake pat as these are good sources of information and support.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Thank you Mike, yes I've started looking at the links.

    All the best

    Sarah

  • Hi Sarah.

    My daughter Jessica was diagnosed with ALL ( acute lymphoblastic leukaemia on May 13th of this year.

    She is being treated on a teenage cancer trust unit in Yorkshire after initially starting her treatment in Barts hospital London. I know how devastating it is to hear the words that your child has cancer and I am here if you need somebody to talk to. I have posted four blogs so far detailing our journey if you want to give them a read. I am trying to document the journey in hopes of helping other parents who finds themselves in the same situation.

    I hope your son is doing as well as possible right now and that you are as well.

    Best wishes and a virtual hug being sent.

    Loulou. x x

    • Thank you so much for taking the time to reply. I shall look for your blogs. I think it would help me. Best wishes to Jessica and a virtual hug right back to you too xxx