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Sprycel & Low Platelets


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#21 Tedsey

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Posted 04 November 2012 - 12:54 PM

Since I will be dx 3 years this Thanksgiving, I guess I qualify somewhat as a "vet".  I have had a lot of extra issues with CML most don't experience, so in my 3 years, I guess it could equal a decade (it sure has aged me that much anyway). 

When I was first dx, I was given Hydroxyurea and Gleevec (actually, I had to ask the onc after a couple of weeks if I still needed to keep taking the Hydroxyurea--a chemo drug---with the Gleevec and she told me "by all means" to just take the Gleevec, like I should have known this...).  I was also shot up with Wafarin daily for about a week, (my PLT at dx were just above 600,000).  My PLT, WBC and ANC became very low after the drugs.  So, in my first weeks on Gleevec, I was given a break.  It was around 2 weeks and my counts did not recover much.  Went back on Gleevec.  A week or two later, I was off again due to low counts, (this is an approx. I don't remember exactly how long my breaks were, but they totaled about 4 weeks 2 months after dx).

My counts did not recover off the drug.  So, the onc I saw at the time emailed Dr Druker.  He advised that I not go off Gleevec at all despite how low my counts got.  So, I was given cell stim shots to raise my ANC and told to never go out (but the never go out thing was terrible advice--I had a 1 year old and 3 year old and could not shop, take them out or do what I needed to do to maintain a household).  For months my WBC and ANC stayed low, even on the shots.  My PLT stayed low too. 

After a while, my counts slowly recovered and got to a point where they were low, but somewhat stable.  I was able to stop the shots (Neupogen and Neulasta).  After that, I had a serious bout of anemia and bleeding (well, I started bleeding since taking the TKI, but it got worse and I needed transfusions and painful shots of Aranesp).  After 9 months on G and very little movement in cytogenics and PCR, I was switched to Sprycel (the onc also thought a drug change was worth a try--it was a shot in the dark, but couldn't really hurt).  Miraculously, the anemia improved and the bleeding stopped (also with the help of birth control pills).  My WBC and ANC improved.  However, my PLT stayed very low.  I am still in the 20-70 range (yes, it fluctuates that much). 

Nevertheless, I do not have any problems with clotting and injuries heal normally.  I don't bruise easily.  So, whatever PLT I have, they seem to work well.  That is key.  It is possible to have low PLT that do their job and high PLT that don't work well.  If PLT get too low for your onc's comfort level, there are PLT transfusions and there is a shot for it too.  Most CMLer's blood counts improve on their own over time (without transfusions and shots).  Drug breaks often work.  However, if things get worse, there is the road less traveled that I was told to take.

So, basically, all an onc can do is keep a close eye on things.  Drug breaks are a common practice.  I got all freaked out when my counts were plummeting.  However, it was all needless anxiety.  Basically, there is nothing we can do about it.  Hopefully, we are and feel we are in good hands with our oncs.  In time, things usually get better for most CMLers.  Low counts in the beginning is very common, esp. low PLT.  I am an unusual case where my counts are still pretty low.  However, it has not changed anything in my life.  I still run, run around with my kids, volunteer in my son's Kindergarten, the community, take care of my family, etc.  At this time, life is very good.  I wish I was told not to freak out as I did in the beginning.  I just needed to hear, "Live your life.  We will take care of the rest with your input."  It wasn't until I found this board that I began to relax and feel well informed. 

In the beginning no one would be normal if they didn't freak out at dx or feel extreme terror and anxiety.  It passes as low counts usually do. 

I wish you all quick healing and good health,

Tedsey



#22 Johnc

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Posted 11 November 2012 - 12:07 PM

Platlets went down to 36 from 40 even after being off Sprycel for  a week. Hope they start moving back up from this point. What have folks who stopped taking TKI because of platlets seen as far as the drug breaks? Is it 3 weeks, or 3 months?

Here is  a link on foods that may help with platlet production

http://www.healthali...f-vitamin-k.php

Johnc



#23 ritan/

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Posted 11 November 2012 - 02:32 PM

my platelet count dropped to 46 and i was off gleevec for 3 weeks i believe.



#24 Sneezy12

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Posted 11 November 2012 - 07:34 PM

Vitamin K has nothing to do with Platelet production. Regards, Frank



#25 Trey

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Posted 11 November 2012 - 07:44 PM

The problem with trying to check on platelet levels is that the spleen plays games with the counts.  Most platelets are not floating around in the blood on a regular basis.  The spleen holds (sequesters) platelets until they are needed, then releases them in large quantities when a wound occurs.  So a person may have plenty of platelets even with a low platelet count (don't automatically assume you do, however).  The best way to show adequate platelet count is by seeing how fast a wound stops bleeding.  If you are a "bleeder", then you may have either low platelets, or possibly dysfunctional platelets.  CML can cause poor platelet function in some people even when the platelet count is adequate.  So just saying that trying to figure out if someone has adequate platelets and function is not so simple as a blood test. 



#26 Johnc

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Posted 26 November 2012 - 08:16 PM

Well all that good Turkey helped my Platlets Gobble Gobble Gobble

Taken off Sprycel when plt went to 40

1 week off - plt 36

2 week off - plt 48

3 weeks off  - plt 94

A few post I have read indicate 3 weeks appears a norm for the TKI breaks

Onc reduced Sprycel from 100 mg to 70 mg the price break should you have to buy the TKI when from $8,200 to $4,100 for 30 day supply. Thought I would ask when I ordered them.

Johnc



#27 hannibellemo

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Posted 26 November 2012 - 08:32 PM

Wow, that's good, John, I didn't get a price break until 50mg.

Pat


Pat

 

"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>


#28 Johnc

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Posted 19 December 2012 - 11:52 AM

What a flipping roller coaster

Platlets went back up to 94 then I went on 70 mg and watch out below

Week 1. 140

Week 2. 112

Week 3.  75 today

At this rate it may hit 50 next week,  Trey is there a special test to be taken on platlets if the platlets are just low in blood?

I have no side effects on the 70 mg but it is killing my platlets

Has anyone experienced this rapad rise and fall or will I be taking a 3 week break every 3 weeks?  don't want to go any lower on the mg's as I think the results have a worse chance of being positive.

Thanks

Johnc



#29 scuba

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Posted 19 December 2012 - 01:20 PM

John,

Going lower on the dose is fine - and you should consider it as a plan to deal with platelet suppression.

You want to have your body adjust to the new drug (and dose).

I take 20mg. Sprycel after having started at 70mg. I am almost to PCRU on just 20mg. Dr. Cortes mentioned to me that when patients have a strong myelosuppression response to Sprycel it usually means a strong anti-cml response as well. Patients like us just need less drug to get a good result and to maintain response.

Instead of stopping therapy, consider lowering the dose first. My platelets hover around 130. Neutrophils hover around 1.5. And on 20mg.


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"


#30 Ray99

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Posted 19 December 2012 - 02:11 PM

Johnc,

   My experience with Tasigna is that after resuming at half dose, PLT started to drop for about six weeks.  But at a slower rate and did not go lower than before the drug break.  After that it started to rise slowly to around 130 and bounce around a little.  My recent PLT is 170.  You may see the similar trend.  It just takes time.

   Hope this helps.

Ray



#31 Trey

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Posted 19 December 2012 - 08:08 PM

No other test for platelets sequestered in the spleen or anything.  You may need to stay on a lower dose for a while.



#32 Johnc

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Posted 19 December 2012 - 08:55 PM

Scuba, Ray and Trey

Thanks for your comments,  I sincerely appreciate them. I thought 30% less potency would have taken longer for the platlets to  drop to any downside meaningful number. The 100 mg was three weeks and wait and see but 70 mg could be after four weeks.

Johnc



#33 Tedsey

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Posted 20 December 2012 - 03:48 AM

Wow!  I am beginning to really like this Dr. Cortez guy.  Now that you are down to 20mg, what was your last PCR?  Just curious. Wish my oncs didn't rush to shoot me up with all kinds of cell stim drugs, but it was really on Dr. Druker's advice.  As a matter of fact, I was told just the opposite about strong myelosuppresion (which I had and have on both G & S).  I was told it was the disease and it was still baaaaad in me.  Anyway, figured out some decent news on my own.  I will have to post it, but I need to get to bed.  Have to run a party at school tomorrow for a bunch of Kindergartners.  Hope I am able to survive that to return to the board.

For everyone else, recently, I hit a high of 75,000 PLT in the last 3 years since dx.  I seem to be OK.  Bleeding, bruising, etc. has never been an issue and it still isn't.  I have come to a point where I just expect the PLT to be low and am OK with it.

Teds 



#34 Johnc

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Posted 27 February 2013 - 09:21 PM

Just an update

The 70 mg of Sprycel took my platlets to 32k in a 5 week period. I took my second drug break for a 4 week period. In the interim I went to a Luekemia. Specialist instead of my regular Onc. As the general Onc has never dealt with this situation before.

The specialist ran a battery of test, one was a PCR on blood which came out at 2.34%IS and the bone marrow PCR came out at 29.1%IS. The difference in the numbers was explained as it is because of the drug break. Luckily, i have no mutations and the new Onc is comftorable going down to the mid 20k in platelets should it happen again but is determined to keep me on Sprycel with no breaks. This will be done thru transfusions or Stim shots. In an older post It was stated  that blood PCR will generally follow bone PCR so no need to have a blood PCR for a while.  I have also seen some post where the blood and bone PCR are more closely aligned as I was very shocked to see mine 27% apart. Drug breaks are good but there is a cost. Three steps ahead and then two steps back.  Has anyone had two drug breaks within a 4 month period similar to my situation?

Johnc



#35 scuba

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Posted 28 February 2013 - 05:42 AM

Hi John,

You could try a different approach. Instead of drug breaks, stim shots, transfusions. You should consider lowering your Sprycel dose. Lowering it to 20mg and monitor your platelets weekly.

I had a similar problem to you. I had severe myelosuppression with Sprycel at 70mg. Platelets fell to 40 and were dropping and Neutrophils were almost zero. Instead of stim shots or transfustion, Dr. Cortes wanted me to try a very low dose of Sprycel and then monitor results weekly for the Platelets/Neutrophils and then the first six weeks for PCR. If the lower dose didn't work, then they would go to Plan B (another drug, stim shots, etc.). Before I started the low dose, I was on a drug break for over 3 months to get my normal blood levels back up (Platelets above 100 and Neutrophils above 1.0). When my blood returned, I started the low dose regimen.

The intent was to stay at 20mg to test my blood tolerance (see where my platelets/neutrophils normalized) and then increase the dose to 40mg and then back to 70 mg. The belief is that over time the body will adjust - especially as the blood systems re-populates with normal blood replacing the leukemic blood.

http://www.ncbi.nlm....pubmed/21069865

After 7 months on 20mg Sprycel, I went from PCR 55% (IS scale) to .1%. Almost a Major Molecular Remission (MMR). Dr. Cortes told me it was MMR even though it wasn't a full 3 log reduction. The next test after that my PCR dropped further to .01%. Currently I am at 0.001% - close to PCRU (next test in two weeks) and have been hovering around that level. Dr. Cortes does not want to increase my dose. I have practically begged him to let me increase it to 40mg. so I can hit the CML harder. He said no. He was pretty emphatic about it. He said, the drug is working for me at 20mg. so leave it there. It's been almost 3 years since diagnosis (almost two years with Sprycel).

I have been able to achieve this fairly dramatic drop on only 20mg. Apparently I am sensitive to Sprycel. You may also be as sensitive.

One big benefit to the lower dose is that I have no apparent side affects. I still live with a 25% lower red blood level than normal.

I do take Curcumin (8 grams) which may have an augmenting affect on the Sprycel (help Sprycel indirectly do its job better) as well as delayed my blood recovery (3 months drug break instead of 1 month or less). Jury is out on whether Curcumin is having any effect, but I have had a lot of other benefits taking it so I will continue.

Consider lowering your dose before stim shots or repeated drug breaks. Best to have some TKI inhibitor active in your blood than none. And none only if you can get to PCRU and maintain it for a few years - which is my goal.

Michael


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"


#36 Melanie

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Posted 28 February 2013 - 03:19 PM

Hi Johnc,

Thought I would share my experience with the low platelet issue. I've been on all the TKI'a and am now on Bosutinib. I suffer from cytopenia (severe low blood counts), so we keep trying many different treatments and doses. At present I'm taking my first drug break from Bosutinib due to low PLT (34). I was only on 20% of the standard dose when we stopped 6 days ago, so we've been playing the balancing game (lowering the dose to see if we could control the PLT) for a couple months. I've been controling the ANC to stay above 0.5 with neupogen shots every 3 days. As for the HBG, I just had a transfusion yesterday.

I just came back from MD Anderson, seeing Dr Cortes, on Tuesday and he wants me to consider a clinical trial on Eltrombopag to control the platelets.  It's a study designed for patients of CML being treated with a TKI who also have chronic low platelets. I'm still reading about it and haven't decided. I live in Arizona and the study has to be done at MDA.  One of the good points is it's already shown some positive results, with minimal side effects...plus it's a daily pill.  The other drug for low platelets is an injection called Neumega, which is also an alternative, as well as a platelet transfusion.  About managing the platelets with transfusions though, Dr Cortes used the example of filling your car with gas...it continues to run out until you fill it up again.  With the clinical trial drug, the hope is to have your body actually produce the platelets and eventually stop taking the drug.  Who knows?

Of course the other option is to continue the stop and go routine, which in my case is believed to be getting more and more dangerous as time goes on. Dr Cortes wants to manage the cytopenia with transfusions for the HBG, the trial drug for PLT, and the shots for ANC, so I can stay on a TKI long enough to gain and maintain a decent response. My local Onc/Hem agrees, yet thinks eventually if a balance isn't found soon I'll need a SCT. So to the question if it's safe to keep taking the drug breaks, I think for each person it's different. Back in 2011, when I was first dx, taking the breaks weren't such a big deal. The thought being that my body just needed to adjust. Dosage adjustment also worked at times for a while. In the end it always comes down to doing whatever it takes to keep enough TKI in you to control the CML and that magic balance or treatment may be different for everyone. Taking breaks, reducing dosage, whatever...sometimes you just have to keep trying different treatment plans to see what works for you. As long as you're being monitored well along the way and have a good Onc/Hem, you'll find the treatment plan that's a good fit for you.

Hope this helps,

Melanie


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#37 Johnc

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Posted 28 February 2013 - 04:47 PM

Melanie and Scuba

Thanks for taking the time to share your experiences. I asked my specialist about the reduced dose that Dr. Cortes provides some of his patients and she said that he probably would not being dozing that low and her thought is the lower dose could create resistance and possibly  mutations. She was going to meet with the other specialist at the Cleveland Clinic and go over my entire case and get some suggestions along with what her methodology is. She is very good and confident and indicated her CML patients do very Well. I gotta trust her instincts and she has personnally called me back on a number of occasions to talk about results since I am 40 or so miles away. My father was a physician and he always told me doctors are "practicing medicine" coupled with as you indicated above we are all different so one recipe does not fit us all.

Once again thanks,

Jhnc



#38 CallMeLucky

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Posted 28 February 2013 - 06:40 PM

My doctors also subscribes to the resistance model.  When I pressed I was told they have seen it with Gleevec at low dose but not yet with Sprycel (in their experience).  Some people say it does not work that way, but resistance does happen and no one really knows why someone can be PCRU for years and suddenly relapse.  That is rare but it does happen.  So it is a gamble.  I think we have to look at it as borrowed time and do the best we can to live as long as we can with best quality of life.  Trying to bank on a strategy today based on what you think it may result in down the road is kind of a fool's bet.  So go with your gut and if you trust your Dr then go with that because at end of day you have to live with the decision and accept the rewards or consequences of that decision so it better be on your terms.  The one thing I will say is that her statement that he is probably not dosing that low suggests that she thinks people are lying about their treatment which is not fair.  She should email Cortes and just ask him.  Then she can at least factor that into the scenario.  He might share data that he has that could sway her decision.  Good luck


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%
 

 


#39 Johnc

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Posted 28 February 2013 - 07:05 PM

CallMeLucky

Your analysis is correct it is a gamble and you go with the best info you at the time as again they  are practicing medicine. She probably will email him or  talk to him as she said she knows him. At the time I thought it was unfair for her to say what she did but she said it matter a factly and moved on. She is so much more professional than my local Onc. If she is employed at the Cleveland Clinic she has to be Top Notch!

I take Diovan for my slightly elevated BP and depending on what webiste you look at they talk about it can reduce platlets. I have been cutting my doses in half for three weeks and now take a half every other day and will stop next week. I will keep tabs on my BP but want to see if my platlets level out or don't tank to the 30k level level or below. I already feel less sluggish to and need to lose some of the 15 pounds I have gained over the last year.

Any info on BP meds reducing platlet counts?

Johnc



#40 Trey

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Posted 02 March 2013 - 09:34 AM

There is no data indicating that low dosage TKI drugs induce resistance, and it is also not logical.  I personally believe it is a myth that has been repeated out of ignorance.  Dr Druker now recommends low dosage Gleevec for longer term maintenance.  I have written a more complete rationale previously:

http://community.lls...age/61058#61058






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