LIVING WITH CML

Inspiring CML patients 
 

"TFR has become the aim of most CML patients. Unfortunately, statistics show that the probability of remaining in TRF on a Trial to stop taking TKI’s is limited percentage-wise.
 
I sometimes wonder if TFR candidates and their doctors are not too hasty taking the decision to stop TKI’s. Until we know more about the suppression of BCR/ABL by the immune system or other factors, that remains unanswered."

In Basil's words, "the TFR Group was founded in November 2013 with Barbara Meunier and myself as the only members. Since then we have grown to 417 members and counting. There are a few notable doctors as members who follow our posts but do not respond as it could be regarded as unethical for them to do so. 

CML patients must be in TFR or on a clinical trial to stop. We have numerous applications from patients just curious to find out about TFR. This information is available on other CML groups or by Googling TFR ( Treatment-Free Remission)
We are not an advocacy group and therefor leave those decisions to the medical professionals.
 
Most of the leading CML groups also are represented by an administrator who can act as the conduit linking the groups. I have started a +10 years TFR subdivision and we have five members presently: we are in unchartered territory and find it exciting to be so blessed.
 
Also, running the Facebook Group “CML Patients in TFR” along with Barbara is tremendously uplifting to know that the combined personal experience of all the “seasoned” members can help others cope who are new to treatment-free remission."

"As is well-known, side effects, if any, can vary from patient to patient. Approximately 30% of patients do experience mild to severe withdrawal symptoms when starting TFR.
 
Often these side effects are not fully understood by their treating physician, oncologist or hematologist and the group gives us an opportunity to interact with members who may have or are experiencing similar issues and what they have found to minimize their discomfort. 
 
These issues can be discussed and personal decisions made on their own prognosis. This information should then be discussed with their medical specialist and solutions decided on."