For those who are interested in my progress, here goes.
I was on Gleevec 400mg per day until end April 2009. Due to a few rough side effects, and based on a minimum of 4 log reduction over a 2 year period I decided to follow the path of the STIM trials and stop Imatinib.
Well the good news is that I am now 1 month away from 3 years off all treatment.
My last QRT-PCR test done on 19/3/2012. The result: "undetected" (BCR/ABL 0.00011%)
Over this period of 11 tests, I had 5 detected results and 6 undetected results.
The last 4 over a period of 12 months were "Undetected"
My lowest BCR/ABL % result was my last test.
I am now on 4 month intervals between tests and feeling extremely confident about the future.
BTW. I am 67 years old and was diagnosed in July 2003.
Unfortunately there are no official trials like STIM in South Africa so valuable data is being lost. There should be an International Data Bank which could store this valuable information and be used to determine how and why certain patients can achieve these results and others not.
I hope that one day all can achieve this type of response.
Kind wishes to all
Basil
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News from Basil in South Africa
Hi Basil,
Many thanks for sharing this with everyone. It gives everybody hope and confidence and it will be particularly re-assuring for anybody recently diagnosed.
Your news as awell as others who have success on the STIM trial shows that we are moving closer and closer to a 'cure' for CML.
Please keep posting on the site.....it uplifts everybody with news like this.
Best Regards
Dave M
That potentially CML can be driven out, is good news for us all.
Glad to hear your good news Basil.
I would like to express my sincere thanks to all on this forum for the encouraging words.
Sandy thanks for keeping this sanctuary going for so many years.
The STIM trials gave us all hope for the future of a drug free period once CMR had been achieved and maintained for a few years.
My Hematologist now has two other patients off Gleevec. They have just passed the 6 months mark so it will become interesting from here onwards but I pray they maintain their status.
Richest blessings to all.
Have you guys ever thought of the patent expiry date of Gleevec. I believe it is somewhere around 2015. After that we can expect cheaper generics which will drive the cost of treatment down in poorer countries. Man, what a history changer Gleevec has become, thanks to Dr Druker and his team.
I just wanted to add to this discussion since Basil isn't the only one following the STIM trials (unofficially). Yesterday was my anniversary -- the third year since discontinuing Gleevec in 2009. I was diagnossed with CML in June, 2000, was on interferon until December of that year until I was in the expanded clinical trial at Stanford University in California and started Gleevec. I reached PCR-undetectable in September, 2002, and have remained so over the years. I stopped Gleevec, with my doctor's permision April 9, 2009, and have remained PCR-U with every three-month check up. I am followed by Dr. Neil Shah at the University of Califoria at San Francisco, and we're both delighted with my progress. I'll continue (indefinitely? who knows?) having a PCR every three months. I hope that I might be one of those fortunate people who have been actually "cured" with Gleevec. Again, who knows.
Nancy B from California
Dear Nancy.... thanks so much for sharing your experience about STIM trials- unofficial or not, you are still monitored by your doctor and like Basil I am sure you would agree, nobody should do this without the agreement/knowledge of their doctor.
What a fantastic response you have had to imatinib. Many many congratulations. Both yours and Basil's experiences will give many people more hope that one day we will understand why some people respond to TKIs on a more profound level with the effect that perhaps (a lay understanding here) their immune system 're-learns' how to recognise the rogue cells that cause havoc and shuts them down.
Very best wishes to you Nancy,
Sandy
Hi Basil
Congratulations on doing so well stopping the Imatanib. I have been undetectable for the past 18 months and the last time I saw my consultant he said we were going to try and cut down my dosage of Gleevec,with the hope of eventually stopping it. Reading the results you and other members of the forum have had stopping, it gives me great hope that I may be one of the lucky ones. We will have to wait and see. Good luck for the future.
Sue
Hi Nancy. Wow I virtually have a twin in the time aspect perspective. You stopped taking Gleevec on the 9th, and I on the 30th of April 2009.
I will certainly like to follow your posts on a regular basis to "compare notes".
I guess we can really count ourselves as very fortunate indeed.
Best wishes
Basil
Hello everyone, this is my very first post after reading many on my quest for information and research into stopping Glivec. I wish continued good luck for you Basil and Nancy and any one else who has stopped. I am very excited to say that I am on my 3rd Glivec free day and already I have my eyelids back!! I was diagnosed chronic phase in August 05 and have maintained CMR since Jan 07. A few years back I asked my original haematologist his opinion of the French STIM trial results and while they were excited initially he said that the anxiety of wondering about relapsing was not worth it and I agreed at the time. A few years on and I found I was increasingly thinking about long term effects of therapy (like another 40 years!!) I have just turned 53 and hope to live a long life (hope I am not tempting fate...) During my research I contacted various experts to finally find a trial here in Australia, not so much for stopping Glivec but for any patients who are changing their therapy for whatever reason, including stopping therapy. I will be very closely monitored with monthly PCR testing. For anyone in Australia reading this, it is the ALLG CML 10 Resist trial. My current haematologist thought I was crazy (even knowing I was going on a closely monitored trial...) so we parted ways and it just further reinforced to me the fact that as a patient we need to be proactive. I had done enough research and had been in contact with the trial investigators and felt very confident I was making an informed decision. I am really excited to see how I go and how others go being Glivec free too. Merry Christmas!
Kathy
Hi Basil,
Many thanks for sharing your experience with imatinib discontinuation. You have to see this new video about the Stop trials.
Can we safely stop TKI therapies? Experience from the STOP trials
by Delphine Rea, Hôpital Saint-Louis, Paris, France
By the way, see also this link: The French trial called STIM (Stop Imatinib)
There are some articles that give an idea of the situation of CMLers in South Africa.
Recommendations for the management of adult chronic myeloid leukaemia in South Africa
Chronic myeloid leukaemia in South Africa
South Africa: Helping CML Patients Access Effective Treatment
Very best wishes to you Basil