9 replies to this topic

[Lori's okay]

In Trey's blog on the cessation issue, he says, "That is why it is better to reduce dosage before going into a TKI cessation program."

 

I've read this several places.  How long do people suggest this dose reduction take?

 

My Tasigna dose has been half the normal for several years, was taking 150 mg twice a day most of this time.  My doctor suggested doing once a day for a week or two, then once every other day for a week or two.  That seems like a very short time to reduce the dose.  This is mostly to hopefully minimize the withdrawal pain some have.  (I know we are experimenting here, with no definitive answers.)

 

Any thoughts?

 

Also, Buzz, would it be better for me to ask this in my other topic on stopping?  or in the main cessation topic rather than starting a new topic?

[Buzzm1]

Lori's okay, we don't have separate topic-related areas to post in, only threads..

 

Not everyone experiences withdrawal side-effects.  I think I read that only 38% of us do.  It is my belief that it is better to reduce one's dosage gradually before cessation to possibly minimize withdrawal side-effects, or to at least spread out those withdrawal side-effects over time.  It's also less of a shock to the body.

 

Gradual dose reduction also serves to confirm the depth of one's undetected status; not everyone who is undetected on a full TKI dose, might remain undetected on a lesser dose.

 

Many, among us, aren't able to tolerate a full dose of a given TKI, and reduce out of necessity ... suffering is overrated ... if issues with TKIs don't resolve themselves within a given period of time, consult with your oncologist about a dosage reduction, or a possible switch to another TKI.  

 

There isn't any hard and fast rule on how gradual reduction should be, or how long one should remain at any reduced level, but after remaining undetected on a full dose for at least a year, two quarterly testing cycles at each level when going to three-quarters, a half, or a quarter, might be a good rule of thumb.  Some, who have been on a TKI for over a decade, might find it preferable to extend the time at each level.  Some, who have been on a TKI for over a decade, and have attempted cessation, have had to return to their TKI, due to the severity of withdrawal side-effects ... to attempt a course of gradual dosage reduction to lessen the impact of withdrawal side-effects.  

 

Play it by ear.  We each have a unique experience with our TKI.  What works for someone else may not work for you.  

 

Good Luck.

[Buzzm1]

One other thing, even if not stopping, I think it is important that we reduce our TKI dosage to as low a level as possible, as soon as possible.  This is especially true for older adults as our body isn't as tolerant of toxic drugs, and TKIs are toxic drugs.

[cmljax]

Lori:

You certainly qualify for cessation based on the various STOP trials. I do not qualify, but have cut my Tasigna dose from 600 mg 1 year ago to 150 mg recently. The reductions were done because of multiple nasty side effects, most of which have improved markedly, and because of my rapid and deep response. My onc tests me every 6 weeks following each reduction.

 

If I had your length of treatment and response history, I would first reduce to 150 mg and test PCR in 6 weeks and then 6 weeks again and if you are still PCRU, then stop.  But that's just me. Many people just stop cold turkey so to speak.

 

Good luck whatever you decide.

[tiredblood]

I stopped the TKI on 10/12/15, cold turkey, and went about 4 days before the TKI withdrawal syndrome symptoms began. Pain in shoulders, hands, hips, knees and feet.  Mostly shoulders and hips, terrible pain-- just like I later read the TKI syndrome is described.  It lasted for about 3 months. I had contacted a CML expert in France who told me, "The withdrawal syndrome is difficult to treat If common medications are not efficent, the best results are observed with low dose steroids (10 to 20 mg/d) followed by a slow dose decrease."  I'm not sure how slow of a decrease he was talking about.  I had tried heat, Tylenol, ibuprofen, tramadol, Cymbalta with minimal, if any relief.  My hem/onc is not good at replying to my calls (although otherwise a great doc).  I had called asking for a low-dose steroid and never got a call back. By the time my next appointment had arrived, the symptoms had somewhat abated. If I had to go through it again, I'd try a very slow decrease, after having a low-dose steroid prescription in hand.

 

I've had pain almost the entire time I've been on a TKI. Within a week or so of first initiating a TKI, I had some horrible pain.  This was my first experience where I called, now my former doc, and was told, the pain wasn't caused by the TKI or CML.  I sat outside my workplace on a bench after that call and boo-hoo'd until time to go into work.  I had never, ever hurt like that and the only thing new in my life was the TKI.  

 

With that in mind, I wonder....

 

1) If a person has experienced TKI withdrawal symptoms in the past, would they experience them again when they restarted and stopped taking the TKI?  I imagine very likely.

 

2)  Why do some people experience the pain and others do not?

 

3)  If a patient is among those who experience pain shortly after first initiating the TKI, are those generally the same people who experience TKI withdrawal symptoms?

[tiredblood]

Buzzm1 posted, Gradual dose reduction also serves to confirm the depth of one's undetected status; not everyone who is undetected on a full TKI dose, might remain undetected on a lesser dose.

 

My hem/onc had told me that patient's who loose their response after stopping the TKI, tend to relapse within 6 months of cessation and I think the data backs that up.  It does seem to me like a *very* slow reduction with cessation as the end goal may be wise. Perhaps a dose reduction no less than every 6 months.  What are your thoughts on this?

[Buzzm1]

Buzzm1 posted, Gradual dose reduction also serves to confirm the depth of one's undetected status; not everyone who is undetected on a full TKI dose, might remain undetected on a lesser dose.

 

My hem/onc had told me that patient's who loose their response after stopping the TKI, tend to relapse within 6 months of cessation and I think the data backs that up.  It does seem to me like a *very* slow reduction with cessation as the end goal may be wise. Perhaps a dose reduction no less than every 6 months.  What are your thoughts on this?

 

That is what I wrote:

 

There isn't any hard and fast rule on how gradual reduction should be, or how long one should remain at any reduced level, but after remaining undetected on a full dose for at least a year, two quarterly testing cycles at each level when going to three-quarters, a half, or a quarter, might be a good rule of thumb.  Some, who have been on a TKI for over a decade, might find it preferable to extend the time at each level.  Some, who have been on a TKI for over a decade, and have attempted cessation, have had to return to their TKI, due to the severity of withdrawal side-effects ... to attempt a course of gradual dosage reduction to lessen the impact of withdrawal side-effects.  

 

Play it by ear.  We each have a unique experience with our TKI.  What works for someone else may not work for you.  

 

Good Luck.

 

That being said, I also consider it unnecessary to undergo additional BCR-ABL testing when going through dose reduction.  Simply begin each dose reduction six weeks before your next quarterly test, and then test again after a full three months, before going on to another dose reduction six weeks before your next quarterly test.  During dose reduction, It isn't as if your BCR-ABL level is suddenly going to run rampant while you are still on a substantial TKI dose, and when you have gone through a gradual dosage reduction, if, and when, you get there, even one-fourth TKI dose is still a substantial dose.  

But, if you, or your oncologist, insist, you are welcome to test more frequently; I just don't happen to see it buying you anything under normal circumstances.  

[Buzzm1]

Another reason why it is good to go through dosage reduction before cessation is that, in the event of a relapse during your cessation attempt, you can safely restart at a lower dosage.   

[Trey]

There is no magic formula.  I would simply reduce the dosage by about 25% each week over four weeks until at zero.  The pill dosage is often an issue for doing anything so exactly, so whatever comes close to that.

[ROMO]

I did my own dose reduction. Three months after my DX with two of those

months spent house bound and very sick I decided that I didn't want to

live this way and started breaking my 100mg Sprycel in half.

 

After a while I realized that any changes in my condition would be slow.

I went to my five months PCR test and all was good. It worked for me.

I was concerned about this and researched a study by some pediatricians

and Bristol Meyers on how to administer Sprycel to infants that can't

swallow pills. Bristol Meyer suggested to crush the dose and give in baby

food. Care needs to be made not to get the powder in the eyes as this can

be irreparable. Get it in your eyes and it's bad.

 

Our fortunes are not day to day there are chronic. A slow motion concern.

We are seekers of our best solutions. it's our job.

 

My numbers are good, my DR's happy ( I haven't told him) and I'm moving

on. We are our own Doctors.

 

Romo