25 replies to this topic

[JohnFromChicago]

Today I got my PCR results back after 27months on 100mg Sprycel I am at 0.01 (IS%).  At my most recent appointment my oncologist agreed to reduce my dose to 70mg and retest in six weeks. At the appointment previous to this I had brought up dose reduction and she had told me she does not do dose reduction only cessation at PCRU. Now at this most recent appointment she brings up dose reduction on her own, someone did a little research I have been on 50mg for the last six days due to increase ALT/AST which has now normalized. (she brought up dose reduction before knowing my AST/ALT #s) I would really like to continue on 50mg till my next PCR which is now five weeks away. Anyone with similar PCR numbers want to share their dose reduction experience? Is there any protocol or guideline for an initial dose reduction amount which I could show to my oncologist that would support a 50mg dose reduction?

[scuba]

I went from 70 mg Sprycel to 20 mg Sprycel and tested at four weeks following the reduction. My PCR level was above 50.0%.

I have been on 20 mg. ever since except for my own cessation attempt a few years ago. I am PCRU now.

 

Knowing what I know now - you are quite safe in reducing your dose to 50 mg. and then test at 4-6 weeks to verify PCR stability or continued reduction. My own feeling is that you will continue to see PCR fall below 0.01% If it continues to fall - consider dropping your dose further to 20 mg and keep it there until you are PCRU for two years - and then you can try stopping.

 

More Sprycel is not better. Some people need more, but many patients can have outstanding response on much less than the 100 mg starting dose. Sprycel is toxic and interferes with other kinases.

[JohnFromChicago]

I went from 70 mg Sprycel to 20 mg Sprycel and tested at four weeks following the reduction. My PCR level was above 50.0%.

I have been on 20 mg. ever since except for my own cessation attempt a few years ago. I am PCRU now.

 

Knowing what I know now - you are quite safe in reducing your dose to 50 mg. and then test at 4-6 weeks to verify PCR stability or continued reduction. My own feeling is that you will continue to see PCR fall below 0.01% If it continues to fall - consider dropping your dose further to 20 mg and keep it there until you are PCRU for two years - and then you can try stopping.

 

More Sprycel is not better. Some people need more, but many patients can have outstanding response on much less than the 100 mg starting dose. Sprycel is toxic and interferes with other kinases.

 

 

Thanks for your reply scuba. When you went from 70mg to 20mg did you have any raise in your PCR level. I know you were much higher than .01 (more low hanging fruit) so it may be comparing apples to oranges, but I am just curious. 

[scuba]

Thanks for your reply scuba. When you went from 70mg to 20mg did you have any raise in your PCR level. I know you were much higher than .01 (more low hanging fruit) so it may be comparing apples to oranges, but I am just curious. 

 

No. My PCR never went upward once I started taking Sprycel consistently. The rate of decrease was no different whether I was on 70 or 20 mg, but I was not on 70 mg very long.

[carrie]

I go to the onc today (1/24/2017).

I started Tasigna 800 daily and it kicked my butt.

I was put down to 600.

I am hoping if my numbers stay low or get lower that he will reduce again.

600 Tasigna is very difficult with side effects and having to teach school all day.

400 would be nice.

See my signature.

[JohnFromChicago]

I go to the onc today (1/24/2017).

I started Tasigna 800 daily and it kicked my butt.

I was put down to 600.

I am hoping if my numbers stay low or get lower that he will reduce again.

600 Tasigna is very difficult with side effects and having to teach school all day.

400 would be nice.

See my signature.

 

Good luck at your appointment! Seems like you had a great response on Tasigna so I am sure you will continue downward on 400mg, if your onc allows it  

[JohnFromChicago]

I felt perfectly fine the first year and a half on Sprycel but the last 9 months have been pretty tough. I can still get up go to work go and go to the gym five days a week but I feel like I am 85 now not 30 have been dealing with...

 

-constant tiredness - feels like it's 10pm all day long

-constant brain fog - forget people's names I know well, I have to write everything down

-constant gas - farts all day every day

-rash around my eyelids top and bottom - lasted 8 months

-lost all my muscle and gaining fat despite eating clean 3000+ calories a day - lift 5 days a week, no cardio, sit at a desk all day (pre-CML 190lbs mostly muscle now I am 165lbs mostly fat)

 

...for a single 30 year old guy these are not fun to live with. My oncologist's assistant said my side affects were mostly cosmetic so they would not do a dose reduction for them. This upset me quite a bit, I am glad my actual oncologist thoughts were different.

[scuba]

John - at your PCR level, you might consider 20 mg. As long as your blast count is zero, you can experiment with a lower dose and test if your PCR rises in three months. If it does not rise, you have a new lower dose = lower side effects = greater energy = better life.

 

You have to be comfortable with the psychological risk. We're trained to think more is more effective and less is less effective. That is not the case here (Sprycel, in particular). Sprycel (sorry Trey) is a threshold drug. Each of us has a different threshold level where this drug takes dramatic effect once we take enough of it at a time. More is not necessary to get a terrific response (response is not linear as it is with other drugs). For many people who respond very well to Sprycel - a lower dose is sufficient. A higher dose leads to problems (pleural effusion for one).

 

Just a thought.

[JohnFromChicago]

John - at your PCR level, you might consider 20 mg. As long as your blast count is zero, you can experiment with a lower dose and test if your PCR rises in three months. If it does not rise, you have a new lower dose = lower side effects = greater energy = better life.

 

You have to be comfortable with the psychological risk. We're trained to think more is more effective and less is less effective. That is not the case here (Sprycel, in particular). Sprycel (sorry Trey) is a threshold drug. Each of us has a different threshold level where this drug takes dramatic effect once we take enough of it at a time. More is not necessary to get a terrific response (response is not linear as it is with other drugs). For many people who respond very well to Sprycel - a lower dose is sufficient. A higher dose leads to problems (pleural effusion for one).

 

Just a thought.

 

 

I definitely plan to get down to 20mg as quickly as possible! I really hope this gets me back to my normal pre-CML self. I remember when I first got diagnosed I said to myself I will be PCRU at the first 3 month test because I am young and healthy. Then after 2 years PCRU in January of 2018, before my 31st birthday, I'll be off the pill and forget this ever happened. Not quite as I had planned. None the less I am grateful to be alive and am staying positive as always. 

[JohnFromChicago]

My oncologist actually does not check my blasts. One time a while back I searched through all of my old results and the only mention of blasts was on my initial dx labs "blasts: not an increased number". I meant to ask my oncologist about why she does not check them but I forgot (brain fog haha). Im guessing she doesn't check them because they were not increased in the first place.

[LouiseS]

Hi John

Perhaps you could quote the MD Andersen study showing great success with newly diagnosed patients starting on 50 mg to your doctor link here: https://ash.confex.com/.../paper105980.html

I also keep thinking of Scuba doing so well on 20 mg, and there are many others out there as well.

You aren't wrong to want the best life possible for yourself. I hope 50 mg works really well for you.

Best Louise

[JohnFromChicago]

Hi John

Perhaps you could quote the MD Andersen study showing great success with newly diagnosed patients starting on 50 mg to your doctor link here: https://ash.confex.com/.../paper105980.html

I also keep thinking of Scuba doing so well on 20 mg, and there are many others out there as well.

You aren't wrong to want the best life possible for yourself. I hope 50 mg works really well for you.

Best Louise

 

Thanks Louise for the kind words. This is exactly the kind of ammunition I needed. I had actually read this a while back and completely forgot about it (more brain fog). I am sure she will come back with the argument that I am a slow responded and I did not even do as well on 100mg as those in the study did on 50mg. (eg. all 10 of the patients in the study reached MMR in 6 months where as it took me almost two years) However I am definitely going to give it a shot. If it were up to me I would go straight to 20mg at this point but 50mg would be nice too.

[LouiseS]

John my other recommendation is if you haven't got one already and you can manage it, a dog ! Such a great comfort especially on those downer cancer days:)

[tazdad08]

I am such an advocate for dose reduction. Ive been pcru for almost 6 years now with the exception of 1 test. That was about 2.5 years ago and after my own attempt at cessation. I was taking 600mg of Tasigna per week. I'm now on 200mg once a week. My dr is now aware that I am taking such a dose. I've stayed pcru on that dose for over 2 years. Not all of us need to eat the entire buffet to get the same benefits. I agree with Scuba. Experiment,even if your dr isn't fully aware of what you are taking. But don't hesitate to raise it back up if needed. The fear of mutation because of lower doses has just about been put to rest.

[cmljax]

I had multiple bad side effects almost from the beginning on Tasigna 600 mg.  Once I reached MMR (for me less than 90 days), my oncologist was willing to permit dose reduction in order to lessen the side effects.  He required PCR test 6 weeks after dose reduction and then again 6 weeks after that.  Side effects got better after first dose reduction but not better enough so we did a second dose reduction, then a third in rather rapid succession, each time requiring a PCR 6 weeks after and then another 6 weeks after.  I am now at 150 mg and side effects are almost all gone - I still have occasional heart arrhythmia and mild dry mouth, but I am worlds better. Throughout all the reductions, my PCR continued to go down and I have now been PCRU for 4 months.

 

My oncologist made it clear to me that he was allowing dose reduction only because of my side effects.  I think that is still the accepted protocol amongst many oncologists, but it is changing.  Sounds like your oncologist is a lot like mine, so do not downplay your side effects with him.  Good luck

[kat73]

JohnFromChicago - I am so glad you are zooming downward!  Many of us from the older days were accustomed to waiting ever so much longer for the results you have now.  (Turtles get there eventually!)

 

I'm sorry to hear that you are starting to see the cumulative side effects that our beloved Sprycel often provides.  I share them all except for the gas.  It's very hard to convince anyone about the muscle wastage/weakness, fat increase, tiredness - they love to blame it on age (me, not for you) and sedentariness (as if we don't all spend most of our time in front of screens, doctors included).  When I point out that no variables in my life have changed except the introduction of a TKI, they just don't want to hear it.  Largely, I think, because they don't have any solution to offer - we simply HAVE to take these pills.  Or die.  That's the way they see it.  Reasonable, intellectually.  No help in the real, immediate, emotional world of the patient, though.  Sigh.

 

On this forum it isn't just old-timers like me who provide info - it often will come from younger or newer people like you who are trying something new, like dose reduction.  It will help us all to see how you do at 50 mg and maybe even 20 mg.  To see if you can overcome the side effects and not become resistant to the drug at 20 mg will help provide data, even if anecdotal.  (My onc, a CML expert, still believes in the resistance mechanism, but we have Trey and Scuba and others who are doing well on 20 mg.)

 

One caution - It's at about the point where you are in time that pleural effusions show up with Sprycel.  Whenever you have a chance with a doctor with a stethoscope, be sure and get them to listen to your lungs VERY LOW DOWN ON YOUR BACK.  That's the best way to find a pleural effusion early.  I was symptomless for my first two and they were caught only by accident on chest x-ray. 

[carrie]

Saw the Doc yesterday---numbers are down more---he reduced my dose again YEAH!!!!!!!!!!!!!!!!!!!

6/5/17        Before New Chemo              14.109

10/16/17    New Chemo 3 months         0.141    800 reduced to 600  Tasigna

1/15/18      New Chemo 6 months         0.066    600 reduced to 400  Tasigna

 

John from Chicago, Wow 0.01% is great. I don't know anything about Sprycel, but I am happy for you with your results.

 

Cmljax, I have hope knowing that someone is down to 150 a day on Tasigna and doing well. When I first started on 800 a day, I was really not tolerating it well but I just hope and pray I can keep lowering the dose.

 

Tazdad08-HOLY MOLY......200 ONCE A WEEK......that would be amazing. Maybe I can keep reducing until I start having some quality to life.

 

I am worried about my Cholesterol, Triglycerides, Glucose, ....as they are going up each time I have blood work done.

Yesterday was the first time I noticed my Red Blood Cell count was high and so is my Hematocrit. I don't know what that is. I will have to look it up.

Carrie

[cmljax]

Carrie:

Wonderful results - I really hope you can continue to reduce your dose.  My glucose went from 94 to 117 when I was on 600 mg, it is back down to 108 on most recent test, so the Tasigna definitely affects this. My oncologist was not concerned even at 117.  Get the A1C test if you are at all worried about diabetes.  My cholesterol also popped about 20 points but is now back in normal range.  Talk to your doc about going on a statin to help control this if you are worried about it.  I have taken Simvastatin for years. To complete the story, my ALT and bilirubin were also slightly elevated after about 4 months, but these both corrected on their own before my first dose reduction. RBC, WBC and other CBC results have all been in the normal range since about 1 month after I started therapy.

[JohnFromChicago]

John my other recommendation is if you haven't got one already and you can manage it, a dog ! Such a great comfort especially on those downer cancer days:)

 

I recently had to put my 6 year old pitbull down. Of all things he got spleen cancer I miss him alot. I live in a highrise apartment and it's hard to acclimate a dog to living in one. Someday when I buy house I will definitely have another.

[JohnFromChicago]

I am such an advocate for dose reduction. Ive been pcru for almost 6 years now with the exception of 1 test. That was about 2.5 years ago and after my own attempt at cessation. I was taking 600mg of Tasigna per week. I'm now on 200mg once a week. My dr is now aware that I am taking such a dose. I've stayed pcru on that dose for over 2 years. Not all of us need to eat the entire buffet to get the same benefits. I agree with Scuba. Experiment,even if your dr isn't fully aware of what you are taking. But don't hesitate to raise it back up if needed. The fear of mutation because of lower doses has just about been put to rest.

 

This is really encouraging I had no idea you were on a once weekly dosage. First I have heard anyone doing it actually. Even once a week 100mg Sprycel I feel would be amazing. Maybe someday I will get to try it.