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News from Basil in South Africa

I have just seen that I have been a member of this Forum for 13 years and 3 months. Gosh how time flies! I was diagnosed in July 2003 and this was the first Group I joined, and what an inspiration it was to be at that time.

I was first on Interferon A for 5 months and had to switch due to extreme side effects. Fortunately my Medical Aid agreed to pay for Gleevec so 400mg per day was to be my future treatment. In April 2005 I tested "undetectable" for BCR/ABL using a RT-QPCR test. (This was the first time PCR tests became available in South Africa, so I can't tell if I was "undetectable" before that date.)

In April 2009 after following the French STIM Trials I convinced my wonderful Hematologist to allow me to stop my Gleevec and give Treatment Free Remission a trial.

I test 6 monthly and my last test was on 1 November 2019, which also came back BCR/ABL "Undetectable".

So to date that's 10 years and 6 months in TFR.

I have been so blessed though it all as my side effects that I had whilst on Gleevec all disappeared within a month or two.

So my heart-felt thanks to all the support I received from this Group in my early stages of CML and I hope that my ongoing good results in TFR serve as an inspiration to all. Unfortunately we are not all as fortunate as I have been to remain in TFR, but if you qualify to stop TKI's and do not take take the leap of faith, you will never know what the outcome might have been.

PS. We have an amazing Group on FaceBook for all CML patients who are in TFR or on a Trial to stop their TKI's. It is a Closed Group so all discussions are private, but the entrance is reserved for TFR and TFR Trial CML patients only. The reason for that is that we are not an Advocacy Group and do not suggest stopping TKI's as this is a Medical Decision that must be made between Doctor and Patient. 

"CML Patients in TFR (Treatment Free Remission"

Kind regards and best wishes to all.

 

10 years in TFR - that’s amazing Basil. Congratulations. 

I wonder who is the person who has been in TFR the very longest? Do you know?

David.

Mission accomplished - this post is very inspirational.  I am only 3 months into this journey and hopeful but still very scared at times about the long road ahead.  Seeing that you have had this amazing result means there is hope!!! Thanks for sharing these words in your post - reading it is more valuable thank you can imagine.

Thank you very much for your very kind reply. 
That is why I formed the TFR support group along with Barbara Menieur to provide inspiration and a forum to discuss amongst the members the initial side effects of TFR on stopping TKI’s which in about 30% of the cases are very real. (Withdrawal symptoms) Most are manageable and disappear over time.

Good luck and best wishes for a successful TFR journey.  

 

 

Hi David, 

I am far from being the longest in TFR in the world. I based my decision to stop on the results of the French STIM trials, so those successful participants will have longer TFR times than mine. But I believe I am in South Africa and definately Africa. 
Kind regards and keep up your good work on this Group. 
PS: Don’t forget about the 6 months as it can be a very long time in terms of TFR. 

Pleased to hear all is well! 

Thank you Mick. 

Congratulations basil

Thank you very much. 

Wow Basil. tremendous news. many, many congratulations. Your success gives us all hope for the future and is especially helpful and optimistic for "newbies".

Best

Chrissiex

Thank you for you kind words. I try to use my good fortune to inspire and encourage all CML patients to achieve what was initially thought as unachievable. 
Our special FB Group called “CML Patients in TFR (Treatment Free Remission)” has at least 350 members globally who are in TFR or on a Trial to stop their TKI. 
There are very specific targets to meet in order to even consider TFR. In my own case I had a low SOKAL Score, was first on Interferon A, BCR/ABL undetectable at very low levels of testing for 4 years, on 400 mg Gleevec daily  out of a total of 5.5 years of treatment and lots of good fortune and blessings from above. 
Kind regards abs best wishes.