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News from Basil in South Africa

Hi all,

Just a little update on my status after stoppimg Imatinib at the end of April 2009 due to a few unbearable side effects.

Latest  Quantitative PCR Test. (9/11/2011)

"Not detected"    Detection limit for this specimen = 0.00012%

My results seem to be getting better - Thank God!

Unfortunately we do not have any STIM trials here in SA, so this is just a personal adventure for me. But I would love to meet Dr B Druker and thank him for his pioneering work, as well as Dr X Mohon to discuss my results with him.

I am being treated by the best Haematologist in South Africa - Dr David Brittain.

Love to all,

Basil

 

Brilliant news, Basil.  I've been following your results for a while...

As a potential candidate for a stop/reduce trial in the UK, I'm interested to know how often you are seen (and if less often now, how often you were seen when you first stopped Glivec..).  I'm not sure i want to go on the trial as I don't really have side effects, and am not sure I am quite ready to take the risk, but I'd be interested to know how you're monitored..

Best

Richard

Hi Basil,

good news from you and thankyou for sharing it with us here. I will email you with some contact details- likewise Richard- so you can contact and update clinicians with your personal experience of STIM- even though it is outside a trial it is still significat for the clinicians involved.

Regarding the possible STIM 'lite' trials here is UK. Prof Steve O'brien updated us at the conf. last weekend- he talked about the UK trials which is to be called 'Destiny-  which will differ slightly fromthe STIM protocol (more detail in my notes on the seminar which I hope to finish and upload here this coming weekend).  However, they are unlikely to start soon... owing to delay with ethics committees.

However it is very interesting stuff- even though it will probably only be around 10% of CML population that will benefit from STIM-

Destiny- owing to its more cautious protocol- might prove to be of advantage to a slightly higher percentage of complete molecular responders, in the long run.

Congratulations Basil... and best wishes,

Sandy

Hi Richard,

The approach I took was not as cautious as the STIM trials. PCR tests were only done every 3 months and what we were looking for was a continous upward trend in the results. I did have a few positive results along the way, but nothing to panic about. At the moment I see my Haematologist once every 4 months. 

My last test done 2 weeks ago was BCR/ABL "undetected" with a 0.00012% ratio. The lab that does my test have done all the testing since I went off Gleevec. The results are tabulated in terms of the existing International Standards.

Should you wish to have a copy of my results over the past 30 months, kindly advise and I will be happy to oblige.

What I found important was the finding of Dr Mohan that all patients who relapsed were soon back on track on restarting Gleevec. This helped me to make up my mind to give it a go. I took some convincing to get my Haematologist to go along with it though.

Kind regards

Basil