35 replies to this topic

[SUE]

After taking Gleevec for 7 months, I switched to Sprycel because of very bad side effects.  I have been taking 50 mg of Sprycel for more than 2 years, have been pcru for 15 months, and close to undetectable for 6 months before that.  I will soon switch to 40mg(2 20's), with the very reluctant approval of my oncologist.  She believes that my having taken 50mg all this time is very unusual--that most people with CML (other than those in clinical trials)  are on the "standard" dose of 100mg daily.

 

I know that many on this board have lowered their dose.  I was wondering if there has been any research into how many CMLers have lowered our dosage, how long after diagnosis, how long after attaining pcru(or not), etc. 

 

I know that we are all different, and that what works for one may not work for another.  But the blanket statement that the great majority are on 100mg did not seem accurate to me.

 

Thanks,

Sue

[scuba]

The sad truth is that many doctors who treat CML don't know what they are doing. They get by prescribing and regurgitating dogma. When a patient is at MMR or below, CML is a slow disease - very slow. Even before you knew you had it - it took years for CML to grow and become symptomatic without ANY medication. As you are PCRU -  you have time to develop a customized treatment plan that adjusts dose to your response. As your own experience shows, you started at 50mg and still remain PCRU. Imagine if you had been "forced" to pump 100mg into your body because the doctor doesn't know any better. 

 

You could very safely lower dose further to 20mg and test monthly to see how you respond. I would bet you would remain PCRU. And imagine when you discover that you can get by on only 20mg. - 1/5th the normal dose. You will never know until you try. And if it doesn't work, you simply increase your dose back up.

 

TKI's are dangerous - only untreated CML is more dangerous;  this is especially true for 2nd generation TKI's. They affect the heart like so many other man-made toxic chemicals. We're only now finding out cardiac related problems associated with long term use. The less one can take of these drugs and still get a response the better and it is the right thing to do. The sooner doctors understand this - the sooner they will be treating patients and sparing them so many unnecessary side effects.

[Buzzm1]

It's always a personal decision, but at some given point in time, we owe it to ourselves to consider reducing our TKI dosage, out of concern for our own longterm health.  TKI's are toxic medications and the less of them we need to maintain our "CML under control status" the better off we are likely to be longterm.  

[SUE]

Thanks, Michael and Buzz.  I had mentioned to the onc last December that since I had been for PCRU for 1 year, I felt ready to go down to 20 mg daily if I remained negative at the next test.  She was not happy, but when she saw I was determined to lower my dose, she "countered" with 40 mg.  I agreed, probably because by nature I am a cautious person.

 

Assuming I remain PCRU, I would like to decrease to 20 mg in 6 or 9 months.  But I don't think she will agree to that, and I'm not sure how to find an onc who is more willing to be flexible.  I know there are a couple "big names" in the Chicago area, but my impression is that they too are hesitant to prescribe 20 mg.  

 

Sue

[scuba]

Sue,

 

Interesting ... Dr. Cortes prescribed 20mg for me almost straight away. His approach was and is ... "let's see how this works".

Last year (February) I even stopped my 20mg altogether to do my own test on remission strength. I went nine full months (time it takes to make a baby eh?) before deciding to resume 20mg. And then my response was more up and down rather than straight up. Dr. Cortes was just fine with me staying on the no Sprycel course preferring to wait until I went above MMR. Although I never lost MMR during those nine months, I wanted to test resuming 20mg would drop my counts back down. And drop they did - right to where it was (i.e. <0.01%) before I started my cessation attempt. Except this time it took only two months to fall back. Nine months for rise and two months for quick drop. That informed me that what we have been learning and reading from the ASH conferences and others is very true; the risk in trying low dose or even cessation is miniscule. Zero - except in science one can never say zero. 

 

You might show your doctor the ASH conference papers on low dose and cessation for MMR and PCRU patients. 

[CML2012]

Well I am one of those standard 100 mg of Sprycel. I have been PCRU since June 2015. I ask my doctor if I could lower it to 50mg. She said absolutely not. She has the fear that if I loose PCRU I will not regain it. I am 45, female and was diagnosed in December 2012. I was also on Gleevec for 9 months before Sprycel but my numbers started to rise so they switched me to Sprycel. If anyone thinks I could cut back to 50mg I was greatly appreciate your feedback?

[Buzzm1]

CML2012, after you have been PCRU for a full year it should be safe for you to lower your dosage to Sprycel 50mg; it's also OK to cut/break the Sprycel 100mg pills in half.  If you read through the various Stop Studies, you will be hard-pressed to find any of those who relapsed (defined as having lost MMR) not regaining MMR, and PCRU, within a few months of restarting a TKI.  My Onc had the same fear as yours.

 

PS:  this Stop Study was designed specifically for patients who had been PCRU for one full year

 

Select patients with CML may safely discontinue dasatinib http://goo.gl/4r2D6G

Dasatinib Discontinuation trial http://bit.ly/1liFp8M November 9, 2015

from an initial 63 with confirmed deep molecular response for at least 1 year

after 6 months, 31 (49%) treatment free

after 20 months, 30 (47.6%) still treatment free

[mdszj]

I have been taking 80 mg Sprycel since Dec 2015.  Just had my latest blood draw and visit w/ local hemo a few weeks ago, and he brought up the subject of whether I want to discontinue my tki this Oct since that will be 2 years undetectable.  I was actually PCRU in Oct 2013 but then a year later in Oct 2014 I had a detectabe blip, which then went back PCRU.  This guy is really up on the latest blood stuff and goes to ASH every year.  He mentioned a German study that showed the stats for going off the TKI.  I have not read it yet but I will try to get hold of it.

 

So I told him I had been planning to bring it up but at this point I am not sure if I want to reduce to 50 mg first for a few (3-6?) months, or go straight cold turkey.  I will see how my next results are in June, maybe that will help me decide.

 

One thing I can tell you - I feel much better on 80 compared to 100.

 

Good luck!!

[gerry]

Though I haven't had any blips since being off, I know of a few people that have had this happen after they have stopped. Apart from one who had CML return after 4 years TFR all others remain off their TKI. This is after that initial six months. I mentioned the occasional blip to my doc and he said that the test can sometimes give an incorrect result as well. The trend is what matters to us.
Good luck with which ever way you choose to go.

[Gail's]

I'm on about week 4 of 100 mg sprycel. GI issues better compared to gleevec. With sprycel I'm way more tired and feel like my muscles are to weak or sore to Move at normal speed. I keep plugging away and hope this will soon get better.

[kat73]

I'm on 70 mg Sprycel.  But I was started at 100 mg; at three months in we reduced it to see if other blood cell numbers would normalize, which they almost have.  (On Gleevec originally and for 2 years; switched because of SE intolerance.)  My onc, also a biggie in CML circles, is adamant about no 20 mg ever.  He is willing to go down to 50, but that's it.

[scuba]

I'm on 70 mg Sprycel.  But I was started at 100 mg; at three months in we reduced it to see if other blood cell numbers would normalize, which they almost have.  (On Gleevec originally and for 2 years; switched because of SE intolerance.)  My onc, also a biggie in CML circles, is adamant about no 20 mg ever.  He is willing to go down to 50, but that's it.

 

"My onc, also a biggie in CML circles, is adamant about no 20 mg ever.  He is willing to go down to 50, but that's it."

 

I have been on 20mg for years and have been <0.01% or "undetected". Dr. Cortes prescribed this low dose when I want not anywhere close to MMR. In his words, 'you want to prescribe the lowest dose that works'. He prescribes 70mg and works down, he started me at 20mg and would work upward if necessary. When he saw that I responded at 20mg (i.e. PCR fell at next test), he told me we'll stay with what works - no need to increase it and invite side effects (such as pleural effusion, heart, etc.) when the trend is in a good direction. 

 

So whose correct - my doctor or yours? Both - neither - who knows. We all have to feel comfortable with our doctors. We have seen on this forum how wrong many of CML treating doctors are in their practice. They don't even follow the NCCN guidelines.

[August1]

Hi Sue,

I have been on 100 mg Sprycel for almost 3 years. PCR results have been good with the usual side effects of fatigue, etc. 

 

I am hoping to get to a dose reduction on my next PCR in about 2 months. Fingers crossed. 

 

Take care,

 

[MMay1234]

I started out on 100 mg of Sprycel and continued that for several years, then began reducing the dose.  Eventually I lost my PCRU status, but my Onc. was unconcerned.  He stated, much like Dr. Cortez (they are friends), that we want the minimum that works.  My numbers bounce around between .01 (IS) and .02 (IS), but never really get out of hand.

 

I do have a significant amount of water retention that has gotten worse as time goes on.  I work hard to take Lasix to help the water move through the system, but it never seems to be quite enough.  I do find that I have less side effects on this particular TKI than I did on any of the others I have taken.

 

I have learned over the years that the PCRU designation is not as important medically, but psychologically have always felt it is important.

[rcase13]

Minimum that works. I can't wait until that is in the official NCCN guidelines. I think if we can at least lower dosages we might actually survive long term. That is really important for those of us unlucky enough to get diagnosed at an early age.

[kat73]

Right you are, Scuba - I was just answering SUE's question.  My experience just shows how differently we are all dosed and often for different reasons (or belief systems of our oncs).

 

More on this:  Printed in Hematology News, from a Medical Roundtable on "Practical Management of CML" on September 3, 2015 between Michael Mauro and Michael Deininger, I quote Dr. Deininger:

 

"What seems to be clear from dasatinib is that the initial recommended dose of 100 mg is quite high, especially in older people . . . apparently the drug excretion in the older individuals is quite a bit slower than in younger people.  I think in our practice and in other peoples' practices as well, about 50% of those people end at doses lower than 100 mg, maybe 50 mg, maybe 40 mg, some even 20 mg per day."

 

"I think in the case of dasatinib you have a lot of maneuvering space.  You can adjust the dose according to tolerability and molecular response."

 

Keep in mind these remarks were in the context of the older CML patient.  But still.  Food for thought here.

 

My onc is unmoved.  Maybe 64 isn't old enough for him to let me reduce dose.   Apparently he has had a patient who tried reduction and progressed and died.

[CML2012]

Buzzm1

 

This is a brief summary of my history....

 

Diagnosed CML December 2012

Gleevec 400 mg

PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013

Sprycel 100 mg

PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015

 

Diagnosed Basel Skin Cancer December 2012, October 2014 (All removed)

Diagnosed Melanoma April 2015 (All removed) 

 

In addition...I am 45 years old and the mother of two (16 and 18 years old)....I want to be grandma some day?1? :-(

[Buzzm1]

Thanks for adding your history/status to your Signature CML2012 ...

it helps myself and others to always know your status whenever you post.

 

Hoping your Onc comes around to your way of thinking .. she may need to educate herself on the issue.

As I mentioned, even when stopping TKI's altogether, if MMR is lost it is easily regained by restarting the TKI.

[scuba]

Buzz - That's a great suggestion that we put our status and drug dose in our signature line. I've added mine - I suggest we all do this as we add info to this forum.

[Gail's]

Scuba, I'm curious why M D Anderson uses its own scale, not IS