Good Morning All

A Global request has been emailed to me from the Canadian CML2 Bulletin Board - similiar to a chat group.

I was wondering if you know of someone who may fit this CML Client (Patient) profile so that the two can speak with each other. (It would be preferable that someone has CML but not essential but more to the fact that the person is a young adult and a sports person perhaps at an elite level.

If anyone can assist in anyway it would be appreciated.

I have posted the information as received.

If you are interested please forward the information to myself
by email and I will pass on.

Sue Hurt
CML Client

Please Note: Names of Imatinib; Sprycel; Tasigna that you may not recognise are drug names as mentioned in posting. Refer to below

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Posted 15th Jan 2009


Dear group,

I have just been contacted by my Haematologist here in France 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 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 DAHYOT, yes Gaelic name.

Thanks for your help in this matter Barbara.

Cheers,

Franck

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So guys and gals, if anyone can assist this guy and be a buddy
and perhaps mentor it would be really appreciated.

Sue