79 replies to this topic

[kat73]

Mr. Tee - Hoping this will help with the discouragement:  It took me 22 months to get to 3-log reduction (MMR).  Then I bounced around MMR or below for four years.  That's where I thought I'd probably stay forever, and I was OK with that since it seems to be a safe place to be in terms of no progression, although I was disappointed that I would never get a chance to go TKI-free in my lifetime.  Then, surprise, PCRU on the last test.  Six years.  Can you stick it out that long?  Yes, you can!

[JPD]

Tee - you're alive.  Your CBC is, I assume, good to go.  Your response (like mine) is not OPTIMAL, but there are those with much worse.  The drugs ARE working, just not quite as good as we hope.  Us CMLers are sometimes a spoiled bunch.  Try and look at it that way!  Take the drugs, live your life

[Billie Murawski]

Mr Tee,  Hey maybe that is my problem, or at least it's a darn good excuse.

[Cathy]

I'm a slow one too. its been over 5 years and I've never been MMR yet! I'm very close right now waiting for my results next week! I'm hopfull I will reach it . Still being so close is good enough. and you just move on and take the pill live your life. One year at a time! yes you can!

cathy

[August1]

Yes, I feel like I was on a plateau for about 6 months at around 18 - 24 months of treatment. 

[acl]

Hi All,

Thanks for the support.

I am curious what time of day each of you takes your meds?

I feel I have to make a symbolic change perhaps it might help, if I take it at an different time of day.

Currently I take it at 7:00PM

What time are some of you other slow responders taking your meds?

Hi Mr. Tee, I take 300 mg. Gleevec at 8:00 p.m.

 

acl

[Antilogical]

My PCR results have been near or at a 4-log level since a reduction to 300mg Gleevec (due to side effects).

 

I take the Gleevec after supper. Supper at my house is whenever somebody feels like making something.  Could be 7 pm.  Could be 10 pm.  Whenever.

[Billie Murawski]

AL, I like your style!

[dougbond67]

Hey guys.  It's been a long time since I posted but I thought I'd give an update and ask a question. Firstly, I never changed oncs, and I got him to be more aggressive by talking with him and it seemed to have worked.  He switched me to Sprycel 100mg and I immediately started to respond.  6 months ago I was at PCR .257 and my most recent one, which was about a month and a half ago was .054 which, if I understand the way this works, finally puts me one step away from being undetectable (I think that's .01 or below).  My question is this:  Sprycel is hell on my system, and I was wondering if you guys think I could either reduce the amount, or take mini vacations from taking it, and if so, for how long, and if I did and my PCR goes back up, what can I expect it to go up to and how quickly?  Also, if it goes up substantially if I stop taking the Sprycel for a time, will it go back down if I start taking it again, or will I cause my system to become unresponsive to the drug by doing this?  Any advice is appreciated and I hope you are all doing well.  Peace!

[scuba]

Doug - You have responded very well to Sprycel 100mg. Because of your quick response, you almost certainly do not need to be taking 100mg. I take only 20mg (started at 70mg) at or near PCRU. I stopped sprycel for nine months to test if I could hold my PCR level, but it slowly rose (never lost MMR, however). When I restarted, my levels dropped by next test right back down to below 0.01%. My oncologist prefers daily low dose sprycel vs. interrupting a higher dose.

 

My recommendation to you is for you to drop your dose to 40 mg and see if you hold your PCR level (it may even continue to drop). You will likely notice a dramatic improvement in side effects. If your PCR continues to drop, drop your sprycel dose further to 20mg. and check again. 

 

In my case, my oncologist preferred I drop from 70mg to 20mg right away and work upwards if needed. You could consider trying that approach as well. Regardless, you will not lose "response". Sprycel (TKI's in general) and CML are a biochemical reaction already tuned to your system. Think of it as a hand and glove pairing. Once you find a TKI that fits, they tend to just work - as you found out by switching drugs. What you are searching for is correct dose for you. Very few patients need to be on 100 mg Sprycel. 

[dougbond67]

Thanks for the response, Scuba (I was hoping you'd respond!)  I only have 100mg tablets, so I guess my question is:  Can I just break them in half and start at or about 50mg/day and see how that goes on my next PCR test?  I'm almost certain that if I ASK my onc he'll definitely tell me to stay on the 100mg/day.  If I do this on my own, and then TELL HIM about it, he really doesn't have much of a defense when I ask him to start prescribing me a lower dose.  What do you think about that idea?

[scuba]

I was told not to break the tablets in half. I suspect because it's hard to "dose" accurately that way. One half will be higher than the other. Personally - it probably doesn't much matter. It would be best if you can get your Onc. to prescribe 50mg tablets, however.

 

 

http://www.webmd.com...ay-have-risks#1

[dougbond67]

I should think that since I'm taking a daily dose, and as long as I take one half one day, and the second half from that same split the next day, that they should balance out, since TKI's work cumulatively.  I think that article is more for people who split all of their pills in half at once and then just grab one of the halves each day.  My concern was more about whether or not it might irritate my stomach.

[Jan0080]

I would not split the pills but work with your Onc to reduce your dosage, I have done so and now I am at 40 mg. If I reach PCRU then hopefully I will get my Onc to agree to go down to 20 mg. While Sprycel has weird side effects, all of the TKIs have weird effects. I am very satisfied with Sprycel. I believe that a daily dose is needed to keep the cancer levels down until they are so far down that one can attempt discontinuance.

[kat73]

Doug - I understand your temptation, but I would advise you not to make any dose change in secret.  No matter how it turns out, it will undermine your relationship with your onc.  Trust goes both ways.  I re-read your previous posts in this thread and I see that you stuck with your onc and that he has come round to working better with you.  I wouldn't mess that up.  I don't mean that you be subservient and mindlessly obedient, just be straight with him.

 

A couple more things to keep in mind.  I know it feels like a really long time, but it has only been three years for you.  Sometimes it takes many more years than that to really shove the CML down to the lowest regions of undetectable.  Until then, you can't expect the CML to just hang around indolently while you experiment with how low you can go with the Sprycel.  I had to stop my Sprycel in order to get over a pleural effusion.  I had been consistently below 0.01% IS for a couple of years, treated for about 8 years.  That sucker came roaring back in about 2 months all the way back to 0.4.  I had been MMR for years and years, but it was gone in 2 measly months.  To answer your other worry, though, yes you can get back down.  It only took me 3 months to get back to <0.01% IS.

 

Lastly, although to get below 0.01 is really good, it is NOT undetectable.  My onc once looked me full in the face and barked, "It will SAY undetectable if it's undetectable!"  Message received!  Everything else is, well, detected.  I know you'd like to fool yourself, but you're too smart to try that.  Remission isn't really a term that applies to CML, but response is.  Unless your side effects are too much for you, try to be patient for awhile and let the Sprycel 100 drive the CML farther down.  I wouldn't experiment without your onc knowing about it.  I think it's reasonable that if you've held your PCR to 0.01 or below for a year and your side effects are intolerable, a reduction to 50 would be called for. 

[Trey]

I should think that since I'm taking a daily dose, and as long as I take one half one day, and the second half from that same split the next day, that they should balance out, since TKI's work cumulatively.

 

Some here have split the pills and it works out fine.  I am sure the dosage is evenly distributed in the pill -- all hard medicine pills work that way.

[chriskuo]

In addition to being straight with your onc about dosage, you need to be straight with him about side effects.

He should talk with you about treating the side effects, which could include reducing the dosage. But also know, more people are having success with bosutinib who could not tolerate Sprycel,even at lower dosages.

I recommend this priority until you get good results with manageable side effects
1) Treating your side effects
2) Reduce Sprycel dosage
3) Switch TKIs

[dougbond67]

Thank you to all for the responses.  They are much appreciated and I will give them all consideration.  Good luck on your CML journey.  

[M.A.]

I am hesitant to advise anyone about whether or not to reduce their dose as we all respond differently, but in terms of splitting pills...

 

I was keen to reduce a bit more slowly than halving straight away. I started reducing my dose by slicing off a quarter of a 100mg tablet to get approximately 75mg per dose using a tablet cutter. This was tricky at times as the 100mg tablets can get a bit flakey.

 

I bought a 'digital mini scale'  200G X 0.01G to check that I was as close to accurate as possible.

 

Then when my side effects continued on 75mg per day (including kidney issues) I started cutting the tablets in half and taking 50mg per day. I split a week's worth at a time and as you said dougbond67 I had the first half one day and the second half the next.

 

During this time I actually did monthly BCR ABL tests because I was only going to continue with the reduced dose if my BCR ABL continued to decrease. Had it stayed the same or increased I would have gone back on a higher dose. Fortunately I had some leftover blood test request forms from my original haematologist so I was able to get the tests done sooner than the three month mark.

 

After several BCR ABL tests showed a continuing decrease my haematologist wrote me a script for 50mg. He'd still like me to take two of them a day, but he knows I only take one.

 

Good luck dougbond67. I hope your BCR ABL levels continue to drop and that soon your doctor will agree to reduce. Maybe take the results from the 50mg Sprycel trial at MD Anderson in with you... http://abstracts.asc...199_185127.html

[Red Cross Kirk]

Bump.