Have just been contacted by my haematologist who's trying to find people willing to help a young patient of his who is looking for someone to talk to here's the mail :
Dear Barbara,
I am contacting you on behalf of a new CML patient of mine sent by a colleague from Rennes in Brittany, because I think you might be able to help him.
He is 22 years old, CP CML diagnosed 2 years ago. 1 brother, 1 sister HLA different. Looking for a donor on the registries.
Unfortunately he was severly intolerant to Imatinib (diarhhea+ liver), and then Sprycel (same), and he is now on Tasigna with less diarrhea but his liver is still not fully normal. He is in MMR.
He is an athlete (professional) and is working in a school for athletes in Chambery. His Tasigna has not stopped him from doing sport ( he still manages 5-6 hours every day) but he is very frustrated at not being able to stay at his peak performance level. He is desperately looking for some other athletes with CML on Glivec, Sprycel or Tasigna, who will be able to understand his frustration.
I have sent a mail to the whole CML community in France and he might have some contacts (many responses pending) but could you please ask on the on the english speaking websites if there are any CML patients with a similar profile who might be able to help him. He is not fluent in english but able to correspond by mail.
His name is Maëlan, yes Gaelic name.
Thanks for your help in this matter Barbara.
Cheers,
Franck
