Why drug stop working.....???
In future drugs failear (how many chance)
Last 7 years UNDETACTABLE.... (IMTINIB)
SORRY MY ENGLISH NOT GOOD.....
I hope Lifetime UNDETACTABLE... LESS DOSE
(FULLY CURE IN NEAR FUTURE... Miracles happen EVERYDAY... FINGER CROSS)
BUT I WORRY ABOUT FUTURE (DRUG FAILURE) ( ONLY THINKING.... HORRIBLE....) (I am brave..... I am fighter very positive..... one day in future I fully cure......)
In google many sites not updated..... No latest information....... Irritating...
But this group and member good knowledge..... Thank you all members help me.... Every time.. I already 11 years experience (diagnosed 2008)
I try every food / item help in Cml ( vitamin D, k2, A, c, termeric, wheat grass juice + Aelovera juice , giloy (not know English name),yoga 2 hours a day (kapalbhati, anulom vilom)..... (help me last 7 years UNDETACTABLE)
drug failure in future ( only thinking.... HORRIBLE)
No data available.... How many chance drug failure after many years UNDETACTABLE.......???? (any data available please reply)
Last 30 days (DRUG Holliday) (CONTROL side effects hair thinning problem) (not doctor suggest) (myself)
Start dose again tomorrow..... (full dose of IMTINIB)
ONLY LIFE is not important
QUALITY LIFE IS METER....
Any suggestions please reply....
Hi scuba..... Thank you for reply....
MY QUESTION not about TFR...
MY QUESTION on drug failure chance in future.....
30 day drug Holliday (only because.... Hair thinning problems.... ) (without doctor advice)
Today.... Full dose of IMTINIB (DRUG Holliday over) (pcr test every 8 months... No changed)
I m not interested in TFR this time (next 2 years) (Cml returns....chances) (risk) (mentally not prepared this time)
MY QUESTION on drugs failure .... (worry)
DRUG working good.....after some year... Why drug fail??? Some people......
Any data available......???
How many chance....???? (after long time UNDETACTABLE status)
Any information, Any suggestions... Please share......
Sorry.... My English not good...
There is always a chance a TKI drug can stop working. Odds of that happening in your case are so low as to be insignificant. But it is not "zero". And there are other drugs should that occur.
To put in perspective - you have a much greater risk of diseases such as heart disease affecting you much more than CML returning. CML is never going to kill you. Ever. It has been caught, arrested, and banished from you.
Focus instead on your immune health (diet and exercise) and enjoying your life.
Vikram I agree with Scuba. If you want to try TFR sometime, I would suggest looking at Prof Clark's talk from the last patient day. I followed the Destiny protocol of halving my dose of imatinib for a year before stopping. I stayed in MR4, and most of the side effects I had disappeared at 200mg. The most recent work Prof Clark talked about in Leeds shows that how you get on at 200mg is a good predictor about whether TFR is a good option for you.
Can I also say something harsh?
You seem to worry too much, about several things, including drug failure. You really shouldnt!
Please note that the main cause of a TKI failure when it has been working well in the past is BREAKS in treatment (for those of us without DESTINY). And you mentioned you took a break for a superficial reason like hair loss - honestly!!
Worry is useless unless it inspires change. If you are worried let it spur you to take your meds daily, work on your health and diet and work at relaxing.
Very, very true - I am in South Africa and it is really hard to have these sorts of dosage reduction discussions as there is a great deal of resistance and reluctance to switch patients. I would give anything to try 20mg Sprycel!
Hi Eva, I understand that doctors are reluctant to deviate from established practice in their different countries. However, there is a significant improvement in my sense of well-being have so far successfully stopped taking my TKI for 13 months. One of the purposes of this forum has to be to help CML patients world-wide be aware of developments in treatment protocols. We can provide them with evidence to bring to their doctors to examine options which can 1) ensure their disease gets to and stays in remission, and 2) minimises the impact of treatment on their lives.
Thanks for reply......
SORRY MY ENGLISH NOT GOOD....
(1,80,000 wbc in cbc) (400 mg dose)
(in 2010) (600 mg dose)
(in 2011 pcr UNDETACTABLE) (and continues 2012, 2013, 2014, 2015, 2016, 2017, 2018) (10/2019 blood sample collect results Feb 2020 next visit)
(pcr every 8 months last 4 - 5 years)
Check-up ones every 4 month)
GLEEVEC (IMTINIB) 600 mg dose (2010 to 2019 (and continue) ( no big side effects) (2011 to 2018 UNDETACTABLE) 2019 pcr test october collect results next check-up Feb 2020....
Last one year hair fall problem (little but continue...) (irritating)
Doctor not allowed discrease doss...
(asked many time...) (answer same no)
WITHOUT doctor advice discrease dose.... (because I think hair problem side effects solution is lower dose little time ( I think) (I am wrong or right...(50-50 chance)....
Last 6 months.....[end of 5/2019 to december 2019 (and continue)
600 mg dose 1 months
400mg dose 10 days
Drug free (no dose) 1 months
400mg dose 10 days
600 mg dose 40 days
(cbc test normal.... pcr test sample collect ...... Result Feb 2020)
400 mg dose 10 days
Drug free..... 40 days
400 mg dose 10 days.....(+2 days (9-10 december)
11 December... Continue full dose (600 mg dose.......
Hair fall problem gone but recovery new hair regrowth very slow......but regrowth...
Fully risk..... Because without doctor advice dose discrease....
Worried about drug failure this reason....
Over all health good (fully good like normal person) last eight years...
Only hair fall problem.... No pain..
Last eight years UNDETACTABLE.....
Feb 2020 pcr results (UNDETACTABLE) (blood sample collect all ready october 2019)
Thanks ones again all member......