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Treatment Free Remission

Hi my CML brothers and sisters. I have not posted on this Forum for a long time  so I guess I may be unknown to many of you, so a little background.

I was diagnosed in July 2003 and was on Interferon A (Roferon A ) for about 5 months but had to stop due to some serious side effects. Thereafter my treatment was changed to Gleevec 400mg/day. It was a relatively new drug here in South Africa at the time and all testing was by BMB samples for many months using the FISH Tests. No Lab here had the RT-QPCR test available back then. My wonderful Haematologist and a Professor at our National Health Laboratory Services were instrumental in establishing the RT-QPCR testing in South Africa - in fact I was a regular donor of blood samples to this process.

In March 2005 I received my first RT-QPCR  test results and my BCR/ABL1 was "undetectable"

Those results continued until April 2009 when after following the first French STIM Trials, I managed to talk my Haematologist into a private, one off STOP Trial. He agreed and I am very blessed to report that I have remained in deep remission to date - 10 years and 4 months. It crazy how important the months are, but I feel I am in unchartered territory and each day is a victory.

I was also blessed with not having to suffer any of the horrible effects that I experienced on Gleevec.

To celebrated and encourage other qualifying CML Patients to try TFR, I together with Barbara Meunier founded the FaceBook Group, "CML Patients in TFR (Treatment Free Remission) in 2013. At present we have about 370 members and the numbers are growing daily as more and more CML patients who are likely candidates try Treatment Free Remission. 

Please be aware that we only admit CML patients in TFR or have started the STOP Trial. We specifically do this as we are not an Advocacy Group and leave the decision about the patients TFR  STOP Trial to the Treating Doctors as they are the Medical Professionals, and we as members are not.

We are a Closed group so all our discussions are private and confidential. A number of top Medical Professionals are also members as Observers. 

I would suggest that should you qualify, join the Group as you can only increase your knowledge base on problems you may be facing off TKI's.

PS. This CML Support Group was the first Support Group I joined and still remain eternally great full for the information and support  that I was afforded.

Kind regards and best wishes to all.

Basil,

One of the problems with Facebook groups, which are private groups, is that there’s no ability for someone to search them. They don’t show up on an internet search. The knowledge shared in those groups is only shared between your 370 people. No more.

The reason this forum is open, and indexed by Google and other search engines, is because other can gain from previous experiences. 

Last month we had a little under 20,000 visitors. Nearly everyone reads only, not posts. Not a sub-section of 370. If you share your experience here (and I understand that’s not always appropriate) you reach much, much greater numbers of people. And you help more too.

David.

We have purposely created a closed group as we are not an Advocacy Group. We are only trying to attract members who have taken an informed decision to stop taking TKI’s. This decision must be based on the interaction between the Doctor and the patient only. There is tons of information on the Internet about the subject of TFR. 
We also have a closed Group to keep all postings private as we concentrate on post TFR side effects and support for new members. 
I personally get a great deal of enquires from patients who do not meet our entry qualifications but seem to be seeking information on TFR. That is not our function and as previously noted that information is available on the Internet. 
We do from time to time post information about our Group on the other CML Groups to inform qualifying patients about our existence and activities. 
We also have most main Administrators of the other CML Groups as members on our Group. This enables them to access our Group and pass on any relevant information to their own members. Sandy has been a member for years already. As an Administrator you are welcome to join our Group by applying to our Group. 
I sincerely trust that you understand our reason for creating a closed group as opposed to a secret group.
Kind regards

Basil
 

Hi Basil,

I didn't explain myself brilliantly - there's a place for both types of communication, and of course very much driven by the preferences of the individual. I participate in closed Facebook groups too but I do feel lots of valuable information discussed in them doesn't get into the hands of some people who need it.

David.

Thanks for your input David, but we have specifically chosen to keep our Group as a Closed Group to respect the members privacy and to avoid an avalanche of enquiries about TFR. As I mentioned most other CML Groups have a representative in our TFR Group, and they often refer their members  who meet our TFR entrance requirement to us.

Keep up the excellent work on this important Group.

PS. A year ago I was diagnosed with Colorectal Cancer and operated on to remove the cancerous section. My Histology report from the Lab could not identify any spread from the affected area, and fortunately was therefor reported as Stage 2 Rectal Cancer. One year later I have had another Colonoscopy and other tests done and no cancer was detected - in remission. My second "Great Escape".

Quite happy to refer people as appropriate. It’s got me thinking ... perhaps a page on this site directing people to other avenues of support, whether for children with CML or other more niche support needs would be useful. 

That's a very good idea David. 

I would suggest though that in our case the minimum requirement of being in TFR will always be our entry requirement.

Thank you for your thoughts. 

Kind regards.

Hi Basil,

I'm new to this so forgive me. You wrote: We are only trying to attract members who have taken an informed decision to stop taking TKI’s.

Question: Do you mean that the people stopped taking TKI's, because they reached remission, therefore stopped?

Question: What is the motive of the group. To see how long people stay in remission?

As I said I'm newly diagnosed so curious for one, and for two, being new I don't understand a lot of the language in your initial post.

Actually I just read this. https://www.cmladvocates.net/tfr-cml-patients 

It writes: Of those who then stop treatment over some years, about half of them seem to remain in durable therapy-free remission.

THAT, is very interesting to me. 

Thankyou.

Vancouvergirl

Hi Vancouvergirl,

That you for your reply  and the questions you railed. I will attempt  brief answers to the questions raised;

Question1: The process to get into a position to attempt TFR is a long, sometimes difficult journey with no guaranteed positive results at the end of it all.There are International Guidelines and Best practises that most of the leading CML Specialists follow. (the details of which can be found in the Internet and some CML FB sites. ~ Basically the following is a quick synopsis of the condition to be met before even contemplating TFR. A CML patient should be tested using the RT_QPCR blood tests on a regular basis and their results should hover around 4.5 to 5 log reduction (BCR/ABL1 undetectable with the results converted to the accepted International Scale) Some patients stop taking TKI, at this stage, ( 2+ years) but it it's my view that the longer a patient remains in this very low remission stage, the greater the chance of success. I would suggest that you do a little research on the original French STIM Trails to get an idea of the minimal entrance that were required. 

I based my one man Trial on the above results as I met the above requirements of being completely BCR/ABL1 "undetectable" for at least 4 years and had a low SOKAL score start with, as well as initially starting on Interferon A for about 5 months. Then it took a whole lot of convincing my Haematologist to agree to my stopping my TKI. As it was a new development (2009) the unknown was that mutations could evolve. As we all know the translocation of Chromosomes 22 and 9 remain and I believe that my Immune System manages to suppress the CML. But as we grow older our Immune System normally become slightly impaired so one day the CML may pop up again. Last year I had a Colorectal operation to remove a cancerous growth, followed by Radiation and Chemotherapy and my Immune System held strong, and thankfully I remain in remission.

A lot of research is being carried out Internationally on TFR and some trials have been reducing TKI doses prior to stopping. There is still such a great deal learn about this subject as very often results vary from patient to patient. Among the research subjects are Low Sokal Scores, Natural Killer Cells, The Immune System, etc. So a definite answer has yet to be discovered as to why some patients can successful stop treatment over an extended period of time and others fail, normally with 6 months of stopping their TKI,s

NB: A CML patient must always follow the advice of their Doctor, Oncologist or Haematologist before attempting TRF and not on "hearsay advice" often found on some CML Forums. If you are not happy with your interaction with your Specialist, seek a second and maybe a third opinion. There are obviously different levels of knowledge and expertise among these professionals.

Question 2: As to the motive of our Group: We all have different reactions to TRF. About 30 + % suffer from withdrawl symptoms in the form of bone pains, lack of energy, depression, etc. This is often temporary but can last a couple of years. Our goal is to provide these members with a Closed Group where their physical and Mental problems can be discussed in private, irrespective of the subject. We provide encouragement to new members who are just starting their TFR journeys using our own personal experiences. One of the advantages is to motivate members by success stories of some of the more senior members and the time that have been in TFR, but I must stress that this is not a competition but assists in setting the personal goals of the members.

I will be happy to answer any remains questions you may have , but please bear in mind that we are not and Advocacy Group and therefor do not encourage the sometimes reckless decisions to stop taking daily TKI,s without expert Medical opinion.

Kind regards,

Basil

 

 

 

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Hi basil

Your group 370+ member.. In TFR (IN 2019)

THIS TIME, (2021) HOW MANY MEMBER IN TFR...?

HOW MANY MEMBER IN TFR 3 plus year BCR-ABL RESULT UNDETACTABLE AND CONTINUE...

PLEASE REPLY....

Hi Vikram,

We have 578 members to date. 
Not all are CML patients in TFR as we also accommodate a few top Medical Professionals as well as CML Group Admins.

The Admins pass on qualifying CML patients to our Group and the Medical Professionals can gauge the level of Withdrawal symptoms a section of the TFR Patients experience. Most do not post due to professional reasons.  
Our aim is much higher than 3 years TFR. To this end we have formed a 10+ TFR Club and we now have a small but growing number of members in this category. 
I have been in TFR for 12 years and 7 months to date. 
Unfortunately a relatively small percentage of CML patients can remain in long term TFR  but a great deal of research is ongoing to improve this situation. 
Kind regards.