12 replies to this topic

[beno]

I've been at 100mg Sprycel for 20 months now.  My response has been very good, but it has come with many side effects.  At my last appt, I asked my onc about potentially lowering the dose to help ease the side effects and he was very emphatic that he would never reduce my dose unless I had a pleural effusion or other serious life threatening side effect.  I've been anemic and dealing with fatigue and mental fog issues in addition to other less pervasive side effects, but he said the anemia and fatigue isn't life threatening so there is no reason to change my dosage.  I was tested for mental acuity and passed the tests so he doesn't even acknowledge that the mental fog problems exist.  My first onc had said she would reduce my dose as soon as I hit PCRU, but she isn't working any longer and the new onc seems to not care about quality of life, but only quantity.

[scuba]

You need a new Oncologist.

 

One size does not fit all in CML treatment. Over and over again this has been shown. Given your PCR level below MMR and your steady decline, reducing your dose from 100 mg to 70 and then further to 40 would very likely result in continued response but with much much fewer side effects. You can always increase dose back up if response reverses. 

[LouiseS]

Hi Beno
My husband is only into his third month of this journey but we experienced the same reaction from his oncologist when I raised a dosage reduction from 100 to 50 mg and cited the really promising study out of Andersen that has newly diagnosed patients on 50 mg responding very well. His response was that patients should stay on 100 mg forever or as long as their bodies can tolerate it. he has only agreed to dosage reductions if patients have put up a fight. I was very frustrated by his response. Our plan is to seek a second opinion regarding dosage reduction in the new year after we get the results of his PCR. We are fortunate that there is a CML specialist not too far away. I believe we just need to have his records faxed over and then they will set up an appointment for him. I have the British sense of embarrassment about offending his doctor by going this route , but then I think about how it's much more important to advocate for my husband. I hope that you can get a second opinion. Best wishes.

[rbrich]

I had to throttle my onc to go from 100 to 70 to 50 and I'll keep doing it until I'm at 20.  What she doesn't know is that I split my pills as well.  I've been PCRU for over a year.  You have to be the boss.  Drs. typically do not have your ailment so they don't know as much as you do about how the medicine affects you, they only know what the tests show.  As Scuba says, you can always go back.

[kat73]

beno - There is a study being presented at the ASH meeting about lowering dasatinib dose (after DMR is reached, I believe, but it may just be MMR) in order to PREVENT pleural effusions.  The directory for abstracts has disappeared online (too close to the meeting?) or I'd link it to you.  My onc also follows the protocol of not reducing unless there is a 1) good response and 2) a good reason.  Fortunately for me, my fatigue complaint was coupled with myelosuppression, so he let me go down from 100 to 70, and those numbers came up along with my PCR continuing to go down.  I have since found out that dasatinib is thought to be the exception to the small dose = resistance model, as it binds especially tightly to the leukemic cell and continues to do so even when it's no longer in the blood.

 

Sad but true:  It's a rare doc who will pay any attention to "misery."  You have to give them something in code that they can use (like myelosuppression).  In my case, the golden gates finally opened when I used the magic phrase, "short of breath."  Out came the heretofore unused stethoscope, appointments made, tests ordered, drug stopped, then drug reduced.  I'm not telling you to lie, of course.  But in my case, I kept talking "fatigue" and finally decided to give more examples and descriptions, finally talking my way around to well, yeah, maybe tuckered out lung-wise at the top of the stairs.  Boom.  That was finally good enough to get attention.  Try it?

[kat73]

PS:  Maybe this will help, beno:  Dr. Michael Deininger said in a Medical Roundtable: Practical Management of CML (Hematology News, Sept. 3, 2015) -

 

"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 up 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."

 

". . . other side effects like pleural effusion or excessive fluid retention may well be cause for dose reduction and yet responses may be acceptable."

[beno]

beno - There is a study being presented at the ASH meeting about lowering dasatinib dose (after DMR is reached, I believe, but it may just be MMR) in order to PREVENT pleural effusions.  The directory for abstracts has disappeared online (too close to the meeting?) or I'd link it to you.  My onc also follows the protocol of not reducing unless there is a 1) good response and 2) a good reason.  Fortunately for me, my fatigue complaint was coupled with myelosuppression, so he let me go down from 100 to 70, and those numbers came up along with my PCR continuing to go down.  I have since found out that dasatinib is thought to be the exception to the small dose = resistance model, as it binds especially tightly to the leukemic cell and continues to do so even when it's no longer in the blood.

 

Sad but true:  It's a rare doc who will pay any attention to "misery."  You have to give them something in code that they can use (like myelosuppression).  In my case, the golden gates finally opened when I used the magic phrase, "short of breath."  Out came the heretofore unused stethoscope, appointments made, tests ordered, drug stopped, then drug reduced.  I'm not telling you to lie, of course.  But in my case, I kept talking "fatigue" and finally decided to give more examples and descriptions, finally talking my way around to well, yeah, maybe tuckered out lung-wise at the top of the stairs.  Boom.  That was finally good enough to get attention.  Try it?

That's the thing that frustrates me.  I've been anemic the whole time I've been on treatment.  I still haven't reached a normal RBC or hemoglobin count (hemoglobin was as low as 5.6 initially, but stabilized in 11-12.5 range and RBC count was under 2 and now is 3.9-4.2) and we talk about the fatigue and breathlessness that it creates, but I've been told I need to accept my "diminished capacity" and need "to embrace my new normal" rather than try to resolve it.  The next closest cancer center beyond this one is over 2 hour drive, so I've been hesitant to switch, but if I don't get better answers at my next visit, I think I will bite the bullet.

[beno]

I had to throttle my onc to go from 100 to 70 to 50 and I'll keep doing it until I'm at 20.  What she doesn't know is that I split my pills as well.  I've been PCRU for over a year.  You have to be the boss.  Drs. typically do not have your ailment so they don't know as much as you do about how the medicine affects you, they only know what the tests show.  As Scuba says, you can always go back.

Splitting the pills hasn't caused any problems?

[kat73]

beno - I'm cheering you on with your course of action.  Many people have noticed a dramatic improvement in side effects with a reduction of 100 mg Sprycel to 70mg or 50 mg.  And this in turn enhances consistent taking of the drug for longer stretches, better compliance - all good.  The key is whether the CML is controlled, but generally they're seeing that it can be accomplished with <100 mg.

[Buzzm1]

Splitting the pills hasn't caused any problems?

in regards to cutting/splitting tablets http://bit.ly/1oHD09v

[rbrich]

beno, sorry to be late in reply.  No, there has been no side effect on the splitting.  I was concerned at first but there are so many people here that do it and I split other pills so why should Sprycel be different.  

[cmljax]

I am also sorry to be late.  I had to literally order my oncologist to allow my first reduction from 600 mg to 450 mg per day Tasigna.  After that, he brought up to other 2 reductions because of my continuing side effects. I am on 150 mg now, I am maintaining PCRU for now and the side effects, while not completely gone, are worlds better than at the higher doses.

 

Scuba is right - either convince your onc to reduce your dose or find one who is more relevant with current TKI dosing practice.  Controlling your CML doesn't have to mean you have to suffer.  Good luck and be vigilant.

[SUE]

Beno,

 

I had to argue with my onc each time I wanted to reduce my Sprycel dosage.  In November, 2016 I was on 50mg, and was diagnosed with PAH (at first it was thought to be severe, but then changed to mild).  I stopped Sprycel for a couple weeks, and told my onc I wanted to go down to 20mg daily.  She  agreed.  Except for a very slight blip several months ago, I have remained PCRU.  

 

Sue