Has anybody been able to reduce their dosage of Sprycel?

Yes, I dropped from 100mg to 70mg six months ago. Results are holding, so after a good discussion with my doctor last week, if nothing changes in the next while we'll drop again to 50mg. Who knows after that? 

David 

My husband’s doctor was very negative when we first discussed reducing his dosage. He said that he would be on 100 mg for the rest of his life , or as long as he could tolerate the dosage, which was v disheartening given all the side effects that may develop, esp after a couple of years. 

At our our most recent appointment he could tell I had really done my homework and he was happy to accept the research papers I brought along. He emailed after to say we can discuss dosage reduction at the next appointment which will be 7 months after diagnosis if test results are good. I think what made the difference was taking along peer research. 

I hope this links to the paper that I got from Kirk that specifically talks about reducing dosage to 50 mg in newly diagnosed patients. 

http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e18551#affiliat...

best louise 

I’ve read studies that lower doses of Dasitinib have equal
efficacy as the standard dose on >60 year old patients.
Younger patients have not been studied. Or at least to my
knowledge. It seems that CML at a younger age is more robust
or medicine is more strong depending on the age of the person
Mutations notwithstanding.

This is not a hard and fast rule. It’s Statistical data.
I lowered my dose from 100 to 50, and it’s A-OK.
But then I’m older and don’t got much to loose.
“CML is the most exciting thing to happening to me
since I lost my virginity. And I’m an agnostic.”

(It’s O.K. to have some fun...)

Romo

An 89% to 0.7% drop in three months is an outstanding result. Your husband can certainly reduce his dose by half and his PCR will continue downward.

http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e18551

Dr. Cortes is my doctor (co-author of paper linked above), he never started me at 100 mg. I was started at 70 mg and then for only a week. My dose was dropped to 20 mg. My PCR continued to fall and leveled off at < 0.01% for a couple of years and now it has fallen to "undetectable". I continue on 20 mg.

Sprycel is a "threshold" drug. It is not as dose dependent as other TKI's (notably Gleevec). Threshold means that a minimum amount of drug is necessary for response to occur. Once response occurs, more drug is not better (or cause faster response). The key is finding what that threshold level is for each patient. Clinical trials by their nature are averages tied mostly to safety first and efficacy second. 100 mg is what came out of the statistics. What they are finding now (with many more data points - which is us!), is that 100mg is not necessary and potentially much more toxic. 50 mg is likely a better starting point (see paper). There will always be patients who need more drug to get a response (some as high as 140mg), but many don't even need 50 mg (I am one of them). Part of the reason for Sprcyel's threshold response is its very quick half life (5 hours). The drug is quckly absorbed, does its job and is then metabolized quickly. It is a very potent drug. 100 mg is simply not necessary for many patients.

Given your husbands outstanding results, he can certainly consider cutting dose - maintain his response trend and likely avoid side effects he can feel.

I have no side effects that I can feel. I look forward to when I stop taking Sprycel altogether.

(full disclosure: I am not a doctor. Comments made by me are my opinion based on much reading and study. I am a scientist)

I started on 100mg/day on February 2.  I was feeling pretty crappy by the 13th so I started cutting them in half.  I think I'm feeling better now.   Oh, and it's a good thing I've been cutting them because UPS lost my Sprycel and I'm running low.

It could very well be that you need a higher dose, but given your current  PCR level,  you are doing very well on 50 mg.

Any PCR < 0.1% is very good and has excellent long term prognosis. You could stay the course and over time your PCR could resume dropping. Plateau's can last years.

Likewise - increasing your dose is not likely to change your plateau hence the 'threshold' already being  passed.

I only take 20 mg Sprycel and I am currently PCRU ("undetected").

Patients should find the lowest possible dose that works. More is not better. More is more toxic.

Thanks scuba

I always appreciate your input, advice and inspiration.

I do know that Hannibellemo from the old US site was at around BCR ABL 0.02 IS for a year and a half and then dropped down to PCRU. I think she, and a couple of others including Marnie, got sick of pleural effusions and did not want to increase their doses from 50mg (Marnie may have been as low as 25mg). 

Then there are others like CallMeLucky from the old site who reduced down from  100mg Sprycel per day but found their BCR ABL levels crept up so increased back to 100mg and have now been PCRU for some time.

I guess there are all sorts of reasons people respond differently and also some of us have other health issues to contend with, meaning we can't always take 'full dose'. I'm just hoping that one day I can take less Sprycel so I can get back onto the strength of enalapril I need to protect my kidneys. In the meantime, I'm taking Curcumin :)

Scuba, Thank you for this information! My doc dropped me from 100 to 70 after 3 months of treacherous side effects but only after I had a mini breakdown in his office. He said he would only drop me to 50 if forced to by a PE.  I was 89% at diagnosis and went into MMR at 3 months and 6 months it is still completely undetectable.  This 70 mg is crushing me with side effects.  May I ask who your Dr. is?  I may travel to him for treatment.  I am searching for another doc in my area but all roads keep leading back to my current group.  I am very frustrated at the current moment because I have had 2 hospital ER visits where I had phantom chest pain going to my shoulder and am now the ower of 2 heart murmurs.  I also deal with inflammation and exhaustion every day. I think it's time to switch docs!

Mamjo

i am so sorry to hear about your doctor. We are in Northern California. My husband’s oncologist agreed to reduce his dose to 50 mg at 6 months. His PCR at that time was 0.15. 

have you shown your doctor any research papers showing lower dosages can work? This is what persuaded my husband’s doctor. 

Dont give up trying to get a dosage reduction. It may be worth trying to see a CML specialist if your oncologist won’t budge.

louise 

I started splitting mine with a pill splitter a few months ago and haven't noticed anything different from handling/splitting them. I know it says on the bottle not to - but I'm thinking that may be a generic warning about chemotherapy drugs.

Does your doctor know of your results while on 50 mg?

Can you provide links for these trials.  I have had CML since 2005, started on Gleevec 600 mg, went into remission then it stopped working.  In 2007 I was switched to 50mg Sprycel and have been in remission since 2008 (10 years).  During that time frame I have seen 3 different drs and all have told me I cannot stop taking it as trials have shown that no matter how long you are off it the CML eventually comes back.  If there are trials out there now showing that you can come off it and be "cured" so to speak, I would love to know and shop this to my doctors as both the Gleevec and the Sprycel have caused me severe bone pain which, due to the amount of pain meds I am on required me to go on to disability.  Believe me I would love to have no more pain.  Thank you, Wendy

Yes, I have been able to reduce the dosage of Sprycel.

Diagnosed with CML Feb 2018.

I started out with 100MG daily- ( March 2018)  and it was miserable regarding side-effects

I had had enough after  3 weeks!

No appetite, fluid in lungs, no energy what so ever. I could not even lean over to put on a pair of socks with-out having to catch my breath or walk maybe 10 feet  and felt like I just ran a marathon!

Dosage was dropped to 80 MG and after 5/6 weeks- again bad side effects- loss of appetite, fluid in right lung.

Dosage was dropped to 50MG about 1 and 1/2 months ago and the difference is amazing.

Appetite is back, have much more energy, very little fluid detected in right lung, no loss of breath etc and the WBC, BCR/ABL etc numbers so far are real good from July.

I have new blood work scheduled for the end of Aug.

All the best,

Chuck

"He says if we go too low, I could develop resistance just like we do with antibiotics."

Your doctor is mis-informed. There is no such thing as "resistance like antibiotic resistance" in cancer.  Cancer is the result of a genetic mutation. Targeted specific drugs work on that mutation. It is a chemical pairing/reaction. In the case of Sprycel, taking a lower dose might actually be MORE effective since Sprycel also suppresses the natural immune system needed to fight CML in the first place.

I do agree with your doctor on one idea - stopping Sprycel altogether to test 'treatment free remission' (TFR). Given your PCRU status and quick response - you are an excellent candidate for trying this and having success. There is no risk to trying as you can simply resume Sprycel if you lose PCRU. You will quickly regain PCRU if you have to resume. On the other hand, you might find that you remain in remission without taking a toxic side effect induing drug month after month after year after year. How nice that would be.

(note: I did try cessation myself and I was only MMR at the time - PCR < 0.01%) and went nine months without taking my 20  mg Sprycel. Although I never lost MMR, my PCR did rise from a barely detectable level to around 0.08%). It went up and down during this time. I decided to resume Sprycel to test that it would drop me back and it did - within a month. I will try cessation again once I hit the two year mark of PCRU. And I will test cessation again and again until it works!).

I was left with a bottle of 100 mg Sprycel when my dose was lowered to 80. Hoping to eventually drop to 50. I phoned the pharmacist at the special pharmacy for CVS (USA) and asked about problems that might occur with cutting Sprycel.  It is not extended release so that is OK.  The other question is that it might degrade or be dangerous to take in cut form. She did not think so,

i would advise anyone thinking of splitting these $$$ pills to check with pharmacists.    Gitel

I agree with Kirk.

Sprycel is film coated with I presume a digestible wax.
Formulated to degrade in hydrochloric acid. The Stomach.
When I took my 100mg tabulates I could feel it break up
in my stomach within a few minutes. I took it in the AM before food.
I heard it described as like a bullet to the gut. Perhaps that’s a little
exaggerating but I could feel it unmistakably breaking up and a body flush followed.

The coating is to keep the pill intact in humid environments.
And so it won’t transfer to the skin if the hands are wet.
It has nothing to do with a time release feature.
The medical community will not recommend breaking pills
because it’s like allowing the patients to assign their own dose.
I respect their position on this. They are wonderful dedicated people.

Romo

Yes, I agree with Romo! And, I concur with Scuba!

Sometimes my onc finds me disagreeable, but we're working it out.