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Any one in age group 16-25 being treated for CML, or parents of persons in this age group?
Hi! I'm new here. Was Just wondering if there is anyone out there who has been, or is currently being treated for Chronic Myeloid leukaemia, in the teenage and young adult group, or any parents of children in this category with this condition? My 16 year old daughter Kim, was diagnosed with CML last year in May. Docs told us that it is rare for this age group to develop this type of leukaemia; It is more common in males, and mainly affects older persons in the 60's and upwards, according to statistics. Kim has taken TKI's Imatinib, but was resistant to that drug, she tried Nilotinib, but it wasn;t successful, two bone marrow biopsies and tests haven't detected a mutation in the cancer cells,she is currently taking another TKI (Dasatinib) to reduce the level of cancer cells in her bone marrow and blood, she is still in the chronic phase of the disease, seems to be going ok so far, now being prepared for Stem cell Transplant next month.
I would still be happy to hear from anyone, regardless of age, who has experience of CML, still finding it difficult to get my head around it all, Kim just seems to take it all in her stride, she is quite" matter of fact" about it! Seems to be dealing with it better than I am. looking forward to a reply!
I would still be happy to hear from anyone, regardless of age, who has experience of CML, still finding it difficult to get my head around it all, Kim just seems to take it all in her stride, she is quite" matter of fact" about it! Seems to be dealing with it better than I am. looking forward to a reply!
Comments
I also wondered whether your daughter might find the CLIC Sargent online community useful - it's aimed at people aged 16-24 years? I have been in touch with their community manager and he said that they do have members with CML posting on their. The link is
http://community.clicsargent.org.uk
Take care
Anneliese
Thanks for your reply! My daughter is known to ClicSargent, as she was referred to them when she was first diagnosed. May will be a year since my daughter was diagnosed with CML, and we were given so much information,(very useful) and so overwhelmed with everything that was happening, particularly as things haven't been going as well as we hoped with the use of TKIs, that we are just starting to take things in! We will contact them, cross with myself that I didn't think of that!
Thank you very much!
Kindest regards
Debra
I couldn't believe it when I read your post; my daughter is 18 and was also diagnosed with CML last May. She also has proved resistant to imatinib, and has been on nilotinib for 7 months, just now showing a late, and also not brilliant response to it, so that is being monitored. She hasn't the mutation either, and transplant is still very much on the cards, and we are also waiting to be contacted by the Transplant Team. Like your daughter, Emma is dealing with it brilliantly, and very matter of factly, although it has come at a very pivotal point in her life - A levels coming up, and she was hoping to go to college in September. I, though, am finding the waiting and uncertainty quite a strain. Did your Transplant Team get in touch quite quickly, and how long was it from first contact to where you are now?
HelenB