Wanted to record/share my journey to stop taking Gleevec. After reading about the testing and trials conducted in France and the UK to see about stopping therapy i'm going to give it a try. Since Feb. '07 I have been undetectable without a change. My Onc emailed Dr. Druker and got his permission to try, provided that we send another PCR test to a secondary lab for verification of my status. Afterwards, I will start a therapy-free life. My next PCR test will be in Feb. 2012 which brings me out to a full five years. Dr. Druker doesn't recommend this any sooner than two years of consistant PCR undetectable. Wish me luck and any input is welcome.
Looking to stop Gleevec after five years of PCRU
Posted 07 September 2011 - 06:14 PM
Good luck, and keep us posted. I'm sure that lots of folks will be interested to follow your data.
Posted 07 September 2011 - 08:14 PM
Yes, good luck to you. Will be interested to see how it goes.
Posted 07 September 2011 - 10:06 PM
Hope for the best... Are you on 300 mg or 400mg Gleevec since treatment, I was wondering if you try lowering dosage prior to your STIM plan. Good Luck... Hope u could share your successfull journey every now and then..
Posted 08 September 2011 - 12:16 AM
I have been on 400mg from the start of therapy. I will give update as soon as I receive them
Posted 08 September 2011 - 06:06 AM
Good luck for you. Hope for the best.
By the way, do you consider increasing the frequency of PCR test? , just to be safe
Posted 08 September 2011 - 06:50 AM
Please keep us posted!
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Posted 08 September 2011 - 07:16 AM
you mentioned Dr Druker does not recommend STIM trial less than 2 years' time of PCRU. Wondering if you have data on the correlation between PCRU time before trial vs STIM success rate duration ?
Personaly I think it is related to personal immune system able to handle any reoccurance, I hope there is a way to strengten our immune system before starting STIM to ensure success rate..
Posted 08 September 2011 - 09:34 AM
Best of luck, i hope you will continue to post as you get your PCR tests. I will be looking forward to see how your status is holding up over the next 1-2 years. I think you have a good shot if you have been PCRu for 5 years. To me that seems like a solid amount of time. I hope this works for you. Enjoy the time off from treatment.
Posted 08 September 2011 - 09:35 AM
BTW - are you considering any supplementation when you stop? Anything like Curcumin or FeverFew?
Posted 08 September 2011 - 09:44 AM
Joel - All the best to you on this journey. I very much intend to join you assuming I can get to PCRu myself and can stay at that level for one year. My plan is to rely on Curcumin to see if it can keep me PCRu. Not a cure, just a maintenance mechanism that may work for years before I have to resume. If it doesn't work and a subsequent PCR test shows detectable, I'll just go back on therapy and then do what you are doing - and stay on it for 5 years - then try again. And try again and again and again.
Please keep us posted on your follow-up tests.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Posted 08 September 2011 - 10:56 AM
Yes, we are awaiting recommendations for increased PCR testing from Dr. Drucker. If we don't hear from him then we'll go with every three months for about a year then maybe increase the time beyond that.
Unfortunately, I don't have conclusive data guiding my decision. I don't intend on supplementing my diet any further than I already have. I use turmeric and apple cider vinegar in my food but don't wish to skew the test results if I don't maintain it.
Posted 08 September 2011 - 03:25 PM
Joel - I am very interested in the results. I am 2 years PCRu and looking forward to the day when I can put sharts, cramps and eye sight problems behind me. I truly wish you the best, and eagerly await your updates.
Posted 08 September 2011 - 03:40 PM
Thank you for everyone's support! I'm definitely looking forward to feeling 100% again Not to diminish what the drug has done for me or to seem ungrateful. I know this study is in the back of everyone's minds since it came up so I will be sure to catalog my results as soon as I get them.
Posted 08 September 2011 - 08:21 PM
Very interested in your results. I am almost 6 years PCRU.
Posted 08 September 2011 - 10:08 PM
You said your intention if to go off TKI in one year, however base on present recommendation on STIM data is to be PCRU for at least 2 yr before stopping. Dont you think 1 yr is too soon to even try eventhough u wana try Ayurvedic Curcumnoid 8 g daily. Was wondering did you discuss with your doc on your intention, and what he had to say.
Posted 08 September 2011 - 11:17 PM
I have been undetectable for 2 years now on Sprycel and am thinking about doing the same thing. Did your Onc go for it with some good conversation? I have suggested this to mine and he says no way. The Sprycel does wonders for my counts but I have no quality of life anymore.
Posted 08 September 2011 - 11:59 PM
I wish you, and everyone feeling to give it a good try, all success! And offer all support to those who shudder to even think of doing it: steady on and good health!
I'm looking to stop Sprycel after two years of PCRU.
It happens that I had a consultation at Stanford a couple of weeks ago specifically to request permission to stop Sprycel, after my onc/hem felt that it was necessary to have back-up on such a decision. I'd begun my presentation to him a year ago in preparation for this move.
I knew to bring to the consultation my history of test results, and any relevant studies, and to carry along inside me all that I've learned here on this board. I strained my brain for a few days prior to the consultation to bring only what was clear and simple as my presentation.
It worked. I'm approved to stop next week, the second anniversary of testing PCRU. There are no local studies to become part of, so it's just me giving it a go, with monthly bw and fingers crossed.
They (MD, Ph.D assistant and the specialist) asked everything, challenged everything, and with what I presented and all the answers I had and the good test results, in the end were happy for me to give it a try, as my test results have been 0.000, a more than 5-log reduction, never any returned trace of CML, since four months after starting Sprycel. Can't ask for a better chance at success.
Yes, I do count my blessings everyday and thank God repeatedly.
Last pills: Sept. 13
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 09 September 2011 - 02:08 AM
Congratulations on your choice, ChrisC. I wish you MUCH success and look forward to hearing about your results.
Posted 09 September 2011 - 02:55 AM
Hope u will have a successfull stop TKI journey. Pls provide us update every now and then so that we can followup.
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