18 replies to this topic

[luvmybees24]

I have been in MMR and CcyR since August 2012 after being dx in Novmeber 2011. I currently take two 150 mg Tasigna pills twice a day. Do we ever get to reduce the amount of meds? My doctor says no. That I will always be on this dose.

Laura.

[Susan61]

Hi Laura:  It depends on the doctor, and at what stage your at.  I am at PCRU, and my doctor will not lower my Gleevec dose which I have been on 400mg of Gleevec daily since Oct. of 2000.  She feels that if I am holding my own, and tolerating side effects that she does not want to take a chance on me losing my PCRU status.  She said she has to see more proof before she will cut my dose.

     She did say that as long as this is working for me I would be on it for life unless they find a cure.

Susan

[sandimartini47]

Hi Laura,

I found the same  situation that happened to Susan is what happened to me.  I have been on400mg of gleevec for 5 years now and I have been to 2 doctors and they both agree that I should stay on the medicine, same dose. If the medicine and dose is working, usually your doctor will not lower the dose or change the medication. Sandi

[Trey]

There are some clinical trials being started for reduced "maintenance" dosage.  Some day the docs will catch up with reality and realize reduced dosage is OK for the longer term for those who respond well to the drugs.  There will some day be guidance on who can reduce dosage.  Until then we are on our own if we want to push it with our doc.  As you probably know, I did that and am doing very well (PCRU) on half dosage for several years now.

[Susan61]

Hi Trey:  I use you as an example when I speak to my doctor, but she will still not budge on the reduction.  I sometimes think maybe the doctor are afraid of being put to blame if it does not work with a reduction.

[mariebow]

I started Tasigna I believe in March of last year after  being diagnosed in Jan 2012.  I was on 300 mg twice a day but my bones and muscles hurt, and my onc took me off it for a week, then he put me on 150mg twice a day , he said that he would see how that would do and would put me back on after a week or so, but left me on the lower doses as studies show that a low dose works for some patients, and I have been on half a dose ever since and reach complete cytogentic response in about 8 months of taking the tasigna.

[CallMeLucky]

I was PCRu for over a year went to half dose 50mg Sprycel and lost PCRU within a few months.  I would suggest if you are going to try this that you be PCR negative for a while and be prepared if your numbers go up.  It's not a good feeling to go from undetectable to detectable at your own hand.  Hopefully increasing dose will get me back where I was.  Assuming it does it will be a while before I try anything like that again.

Just my experience your mileage may vary.

[lizy1013]

I currently take 200 mg. of Tasigna per day and will continue to do so until my bloodwork indicates an increase is needed.  I started Tasigna at 400 mg. per day and had problems with fatigue and bone pain. 

[hannibellemo]

I had been at 100 mg. of Sprycel for 2.5 years when I developed a grade 3/4 pleural effusion. (I'd been a Gleevec for 8 months before that but my liver did not tolerate it.) I've been on 50 mg. Sprycel for over a year now. I regained CCyR and I'm just slightly above regaining my MMR status.

I personally don't worry about PCRU - my theory is if I don't worry about reaching it - I don't have to worry about retaining it!   I, on the other hand, do not have a young family to worry about like so many others on here. That would probably change my tune somewhat.

Quite frankly, doctors above all, should know never to say, "Never". There are too many changes taking place right now. Success begets success and we're lucky to have a cancer that usually responds to our medications. So, many scientists are on the bandwagon to find a "bigger and better" treatment - we can only benefit from that!

Pat

[pamsouth]

HI LUVMYBEES24,

I Just went to my oncologist yesterday, which is at the Indiana Univer Simon Cancer Center.  Strrange we just had this dicussion.  I will be switching from Gleevec (been on since 2005) and starting at Sprycel 50 mg for two or three montes.  Hopefully I will have a good response and not need to move to a higher dose.  However if I do not have a good response and I am tolerateing it Ok, I will move to 70 mg and hopefull will have a good response and be able to tolerate it without moving to the standard 100mg.  Now we have been talking about this for some time and bumping heads because this is not the standard protocol.  The standard protocol is to go directly to Sprycel 100 mg or start Sprycel 50 mg 1 week, than directly to 100mg.  However I have refused to do that.  But last week I ask him to meet me 1/2 way and do the above starting at the Sprycel 50 mg for 2 ? 3 months, give it a chance, than if I am able to tolerated Sprycel, but not a good response, move to the 70mg, hopefully that will get a good  enough response and I will be able to tolerate.  Don't think I would ever want to go as high as 100mg, I don't take medicine well at 65 years and my kidney are stage 3 CKD, however he says that GFR is Bull S because it is an estimate and based on age/weight/creatine, etc.  So he has r reluctantly agreed.  We are DC the Blood Pressur/Diruetic Triamterene/hctz 37/5/25, so that should help keep my kidney from getting dyhydrated. (now what to do for the occassional sweling of the hand, see hand doctor?) I have not taken Gleevec for a week. I am waiting for insurance to approve the switch.  It has to go thru are UAW CHRYSLER RETIREE Board, that is where are Prescription Drug Money is held and controlled. 

Now we (oclogist and me) discussed the BIG CURE!  I told him about these charts, you know the ones that Trey has put out and most of us have studied.  Where our bone marrow creates this mutate or bad stem cell then all the blood lines are made from this bad stem cell and are nuclous or have had the Ph+ at one time, but at the bottom stage the white cell is the only one with the PH+, therefore the TKI are only killing at this level, so therefore we still have a lot of Leukemia cell even at PCRU.  So I says that is far from a cure and where is the promised cure as I was told back in 2005.  He got up and said maybe in 50 years. and I said yea it won't be in this lifetime, and I'm not taking a standard dose and risking my organs from the toxic effects, I'm 65 years and my organs have some wear and tear. 

Lots of you may not agree with me, that is Ok.  This is just my humble honest opinion, and my body/life.  I want some qualtiy of what is left.  I really don't see a cure in site, now that is not optimistic, but from what I'm hearing from these specialist they don't either.  Some will say Oh were working on it, the cure, but YOU will be on these for these TKI'S for the rest of YOUR life, so at 65 years old, I will not see it, the cure, in my life time, just anothe TKI that kills at the bottom level, far from a cure!  To much money made on these drugs!!

PamSouth

PamSouth

[sandimartini47]

Hi,

Could you please put the charts out that trey set out for other to look at.  Somehow I missed that,  thank you sandi. Maybe just tell me the date and I can find it.

I would be very interested in it.

[matt92711]

I am in a similar situation. Was diagnosed Sep 2011 and went MMR in early 2012. Still in MMR. My doctor, Dr. Feldman at Weill Cornell, told me that they are now considering patients who maintain MMR for 2+ years for stopping medication. This is based on the data from the STIM study in Europe. They expect 50% of patients who stop to be able to stay in MMR. I am sure as more data becomes available on this, over the next few years, it may become standard protocol to attempt to have patients go off the drug to see if they are able to maintain MMR without it.

My wife is not to keen on me stopping the drug (I have at least a half year to go before I am eligible for this so not a major issue now), but frankly she is not the one taking this poison into her system and I am getting sick of having my brain feel foggy and my skin itching.

Matt

[Nades]

I was diagnosed in 2002 and had been on Gleevec.  I was doing ok (side effects, etc.) but my onc said my numbers were up and down and we could get better results with Tasigna.  Started that but had elevated bilirubin levels, fatigue, muscle soreness, etc. Stopped for a week and then resumed again on Monday. So far ok but I can feel certain side effects returning.  I get monitered rather often and go in this Fri for another blood test.  My understanding is these meds are pretty much for life but hannebellimo is right - lots of changes taking place.  It seems many of you here have been rather newly diagnosed - I've had this for a while.   

Quick Tasigna question:  in the two hours before taking the afternoon/evening dose (where you're not supposed to eat anything), can you drink (not alcohol - I mean, water, tea or coffee, etc.) or do you have to really have *nothing* for those 2 hours (and the hour after?)  Thx!!

[LLawrence]

You can drink water/coffee/tea during the 3 hour window of Tasigna.  I have occasionally slipped a little wine in there  as well.

Leesa

[Nades]

Thanks, LLawrence!  A 3 hour window before the second dose?  I thought it was 2.....?

[CallMeLucky]

Three hour total window, 2 hours before, one hour after.

[LLawrence]

No, I was unclear.  It's no food two hours prior and one hour after doseage.  I tend to snack, so I have to plan ahead: 3:30 last potential snack time, 5:30 med time, 6:30 or later, supper.

[LLawrence]

We must have been typing in unison!

[mariebow]

    I drink water,juice,tea, whatever during the two  hour after dosage.