Hi all,
It's so great to have all these wonderful groups (Forums) for CML patients to turn to for support, information ( whether shared or given ), TLC, etc.
We have all learnt so much during our own personal journey with CML about this unwanted intruder in our lives from forums like these and posts by the members. I my case the internet and these Groups (especial this Forum) were my inspiration, source of knowledge and constant companion during those dark, early days.
A number of Groups were started to cater for the specific need of CML patients and have been sucessfully assisting their members.
But progress against CML has been made with new drugs since the life-saving Gleevec was marketed and became a life line for many. Unfortunately not without some serious side effects. But the researchers were encouraged but the break-through and soon other more powerful TKI's entered the market which were able to restore many more CML patients to their utopia, PCRU.
Encouraged by trials in France in stopping treatment and keeping patients in a PCRU state, other countries entered this arena with similar results.
There are now a few hundred patients around the world who have passed the 12 month barrier and have sucessfully retained their PCRU status.
I feel we should try and get these people together in a special group to monitor their progress and to provide a home for their special needs.
With this in mind Barbara Meunier and I have established such a Group and encourage all who have stopped taking TKI's successfully for longer than 6 months to send us a pm with your email address so that we may add you as a member.
The Group is known as "CML Patients in TFR ( Treatment Free Remission )" and operated as a "closed group" to provide and element of privacy to our forum posts.
Of course we will still post in the other CML Groups and provide regular status reports and updates but our discussions will be private for qualifying members only.
Membership of this group is not available to BMT survivors, who have their own forums. The medical approach in their case have been different to TFR.
Kindly note that the "CML in TFR Group" does not advocate the cessation of TKI's outside of an official trail or without the blessing of a patients treating Oncologist, Haematologist, etc. The strict guidelines as prescribed by these Professionals must be adhered to at all times.