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Stop taking meds...what do you think???.

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#1 lala


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Posted 07 February 2012 - 06:45 PM

Hi......had my 6 year check up.....doc says I can lower my dosage to 200 if I want and we will see what happens...omgosh!!!!!!!  What a decision!  Gleevec has worked for six years....fatigue has changed my life......he said if you want a better quality of life, you can try it and we'll watch your blood.....it is a risk.......TREY, I may be joining your 200 CLUB!  I'm not sure my family wants me to risk this......just heard this news this afternoon!!!!!!!!  When you did it, Trey, how often did you check your blood?????  Should I add that spice that Scuba takes??????  Lucky, we talked about lowering the dosage once, what do you think?????  Thanks!  Lala

#2 GerryL


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Posted 07 February 2012 - 07:13 PM

Hi Lala,

I haven't reached that point yet - but if I get another PCRU, then the countdown of 2 years of PCRU begins for me. I've spoken to my doc about it and he is okay with the idea, so I am debating whether to drop to 200 straight away. But then again I'm also thinking if they have identified the markers for who can come off by then, I might have a try at coming off meds altogether.

When I spoke my doc about the potential reduction, I said I'd probably go for 3 monthly blood tests which means in Australia I have to pay for every second one, but I'm happy to do that.

Results from the trials appear to show that people who ceased taking their TKIs and the CML started to make an appearance that once they started their TKI they very quickly returned to their original level of PCRU.

Good luck with whatever you choose.

#3 hannibellemo


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Posted 07 February 2012 - 10:23 PM


Only you can make that choice, of course, but I'm just so darned excited for you that you have the option!




"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#4 Trey


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Posted 07 February 2012 - 11:11 PM


Your Onc must have read my postings, since no one else has ever suggested this.

To reiterate, I was PCRU in less than a year, remained PCRU for another 3 years, then went from 400mg Gleevec down to 200mg and have remained PCRU for the 3 years while on 200mg.  Side effects are minimal on 200mg Gleevec. 

I think it is a low risk strategy, and better than stopping drugs entirely.  The theory that led me to do this (on my own without my Onc's agreement) is that after several years of PCRU we are only trying to keep a "handful" of leukemic cells under control.  So if 400mg works well when our blood is full of leukemic cells, why would we need 400mg when we have only a few remaining leukemic cells to keep under control?  I think 3 years PCRU is the right timing.  I also think that the person should be a "quick responder", meaning they achieved MMR and PCRU fairly quickly.  This shows that the person has unusually good absorption and cellular uptake of the TKI drug.  So a lower dosage actually acts like a higher dosage would for most people.  That combined with the better than average uptake of the drug allows for taking a lower TKI drug dosage in very low state minimum residual disease.

I have PCRs and blood tests every 6 months.  For me this lower dosage has been the right approach.  I can't say it is right for everyone.

#5 tiouki


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Posted 08 February 2012 - 04:17 AM

Hello Lala,

It's funny because I had my 6 months checkup yesterday and I met a 10 year CML guy that was on gleevec, PCRU for 4 years, and it was it's first day entering in a trial to completely stop the treatment.

In his trial they will look at his blood (PCR) every months for 6 months and at the end they will decide to restart med or not. The idea is that even if PCR gets slightly positive it does'nt mean that you have to restart gleevec (in other words your body may be able to control remaining CML by itself)

In your case in don't know if you have been PCRU, but if it is the case' I think it is not dangerous at all to lower your dosage. You'll need PCR and blood tests regularly but I am sure it will work fine

Hope it helps.

Good luck


#6 NotJack?


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Posted 08 February 2012 - 08:10 AM

My onc reported to me what he found at the last CML meeting that he attended, and he said that there was a study where I believe it was 50 patients were taken off their TKIs.  Half of them during the length of the study stayed without indicators and half had their indicators rise.  The great news was that when the patients who lost PCRU were put back on their meds they ALL responded well to the TKIs again.  I have no other details of the study. 


#7 Cathy


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Posted 08 February 2012 - 08:57 AM


Wow what exciting news! Congrads  I'll be pulling for you to eventually get off TKI completely . Did you become PCRU fast in the beginning. I don't remember your history.

great news!




DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!


#8 CallMeLucky


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Posted 08 February 2012 - 12:38 PM

I think the strategy makes sense, but my onc has a big problem with it.  Told me in a polite but direct way, if I wanted to reduce my dosage I would need to find another doctor.  I'm not sure how she would feel after 6 years of PCRu, but I got the sense it wouldn't make a difference.  I think she is in the conservative camp on this, but I don't think she is alone in this thinking.  I have had another CML specialist tell me something similar, basically along the lines of "until it is studied properly in a trial, I wouldn't recommend it".  Since I have some time to go I haven't given it much thought, but in the future I may find myself changing doctors if I see more people doing it, I am lucky to hold PCRu going forward, and nothing else comes along that suggests it is a bad idea.  If I try to understand my doctor's position, although I certainly can't speak for her and she likely has a more technical reason, it appears to be based in the fact that PCR is not accurate enough to define a true absence of CML.  Her position appears to be if there is a chance CML is there then there is always a risk it could relapse, therefore, the drug should be continued, and it should be continued at the dosage that was determined most effective during a trial.  Again, this is a very conservative view, but I can appreciate the sensitivity to the seriousness of the disease.  I'm not sure if I want to be the one to take treatment into my own hands and take the chance of something going wrong.  Of course with the other drugs available and the results we do have from the STIM trial, it seems like it is not a very high risk.  I'm hoping over the next few years the thinking on this subject will evolve and we will have a better idea of just how risky it is.  In the mean time, it seems like it is low risk and depending on various factors, I might consider it myself if I were in the situation.  For me specifically given my situation with young children I might be a little more conservative and take the approach that if it ain't broke, don't fix it.  I could see myself a little later in life more willing to take a chance.  For today as much as the side effects bother me, I can function with them, and therefore I would likely hedge my chances and stay the course.  I equate it to skydiving, something I enjoyed trying before I got married and had kids.  I would love to go skydiving, and statistically it is actually pretty safe, but I'm not willing to take the chance while I still have young children.  Likewise I would approach this decision the same way.  I would like to have reduced side effects, but I don't know that I would play it right now given the stage of life I am in.

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#9 Susan61


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Posted 08 February 2012 - 02:41 PM

Hi Lucky:  You sound a bit like me.  I am PCRU now for 9 years, and I just saw my doctor 2 weeks ago.  She did not want me to cutback on my 400mg. dose as long as I can function.  I do get very fatigued along with some other stubborn side effects that I get, but I just keep going.  I am sure you have seen posts to me from Scuba who swears I am cured, and never need a drug again.

     I think its how each person feels.  From the time I was diagnosed, nothing was going right for me except when I got onto the Gleevec.  I just feel it has been a life saver for me without doing any damage to other organs like other Chemo's do to you.  Something just keeps me wanting to stay on it.  My Oncologist did say something about some kind of test that they can do 5 years from now that will be able to tell if we can go off and stay off our TKI.  She did not explain it to me very well.  I guess I am going to stay on it and like you said  If It Ain't Broke Don't Fix It.

   I have so many other problems that bother me more than my CML.   Last year this week I was in the hospital with a DVT, and now due to a bad fall in December I am dealing with Phlebitis in the other leg.  My husband just cannot believe the things I go through all the time.  Thats why I always say I am so blessed.

   I do wish anyone who has the nerve to stop or cutback on their TKI to continue to do well.

   I do value everything Trey says, and his explanation is so simple regarding how the TKI would work even at a lower dose.  Its just me, and afraid of change.

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