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Best time to take the Golden Bullet

Hi all

As in my intro that I posted recently , I am quite new to all this as I was Dx in Dec 2007. I was pointed in the direction of this site by a fellow CMLer here in Australia, and the posts and discussions have been very informitive. I aslo didnt want to be in this club but as with all of you we had no choice. I have quite a few hobbies and really didnt need another one.

My question to you is this,
What is the best time to take the daily dose, currently I take 400mg in the morning and I have minimal to no side effects. My Dr was not fussed when i took it as long as I did ( with some sort of food), usually I take it with a bowl of cereal and a coffee. Is this adequate to protect my stomach or should I have it with a more substantial meal.(ie dinner)Any advice would be appreciated.

The other question I would like to pose is alcohol now out of the question? Again my Dr didnt seem to think that the occasional drink would matter only thing I need to stay away from was grapefruit juice , but I read on www.newcmldrug.com that alcohol should be avioded.

The main aim for me is to achieve a minimum 3 log reduction hopefully I am on my way.
I have no other mutations only the PH+ Chromosone (can mutations occur once you are taking Glivec).
My first result in Febuary showed a decrease from 100% bcr/able to 35% this exeeded my Drs expectations my next test is end of April and I want to keep beating them. Any advice from those of you who have achieved a 3 log will be very carefully considered.

Sorry for all the questions but I want to be in the Zero Club aswell.

Ivan
Age 41
Dx Dec 07
Perth WA
Australia

Hi Ivan,

You can take the drug with any meal and many take it with their biggest meal...but if you are not having any stomach or digestive upsets, then what you are doing is fine. You don't want to take the drug and lie down, and some seem to think that being physically active, such as walking, makes them feel better.

The Golden Bullet as you may know was developed by Dr. Druker at OHSU and he thinks a glass or wine or a beer is OK.....and you back this up with periodically (like every 3 months) checking your liver enzymes with a blood chemistry. That will let you know if the alcohol is a problem.

OHSU does not give an absolute NO on grapefruit juice....just not when you take the drug, probably not within 2 hours of taking the drug. It competes in the liver for an enzyme needed for it's breakdown, so it could cause the drug to stay a bit longer in your system.

You have had a very good response in 3 months, a major cytogentic response to the drug. You can't really influence how well the drug works for you, other than generally maintaining good health....but you have an indication that the drug is working very well.

I would say invest your time in your other hobbies....this one might be a bit boring!!

Nancy C.
dx 1998
Eugene, Oregon

Hi Nancy
Thank you for your response, Im glad to hear that a veteran such as you seems to think that I'm doing OK, that means a lot to me. I'm also glad to hear you think that I will become bored with my new hobby. (I'll look forward to that one)
I think that what you say is true if I have had such a good response why change what I'm doing. But I wanted opinions from others that have been through it before.

I have edited my original post slightly, Still look forward to hearing other points of veiw.

Ivan
Age 41
Dx Dec 07
Perth WA
Australia

hi Ivan, and welcome to our group.
when i took glivec i found that for me the best time to take it was after dinner. this solved any problem with nausea and also meant that any tiredness i felt was dealt with without cutting into my normal daily activities.
as far as alcohol is concerned i think that the feeling is that you should not put any undue strain on your liver. glivec is synthesized by the liver... so is alcohol. it turned out that i sort of lost my taste for 'drink' anyway so it was not too much of a problem. i would advise getting into the habit of drinking lots of plain water as this helps support the kidneys and generally helps with side effects.
best of luck for your next result ;o) you have had a very good initial response.
sandy ;o)
sandy C ;o)

HI THERE IVAN,

MY HUSBAND WAS 42 LAST MONTH AND WAS DX JULY 2004. HE HAS CHANGED NOTHING IN HIS LIFESTYLE APART FROM EATING MORE FRUIT AND VEG BUT AS TO ALCOHOL, NO CHANGE. WE HAVE FOUND THAT HIS TOLERANCE HAS BEEN SIGNIFICANTLY AFFECTED BUT A RECENT LIVER FUNCTION TEST SHOWED COMPLETE NORMALITY. GARY IS CURRENTLY TAKING 600mg GLIVEC PER DAY, AN INCREASE FROM 400mg SINCE OCTOBER LAST YEAR AS HIS PCR COUNT IS NOT AS LOW AS THE HAEMATOLOGIST WOULD LIKE. ALTHOUGH IT IS DROPPING VERY SLOWLY, HE MAY GO ONTO DESATINIB IF IT REMAINS TOO HIGH. HE HIT CCR WITHIN 6 MONTHS OF TAKING GLIVEC BUT THEN IT HAS RISEN LITTLE BY LITTLE EVER SINCE, STABLISING AT ITS CURRENT LEVEL. I DON'T KNOW THE FIGURES. WHAT I WOULD SAY IS, CARRY ON AS NORMAL. GARY IS A DOUBLE GLAZIER AND WORKS VERY HARD PHYSICALLY. HE HAS NOT HAD TO TAKE TIME OFF DUE TO HIS DIAGNOSIS AND SUFFERS WITH CRAMPS MOSTLY, FROM THE GLIVEC AS WELL AS THE USUAL PUFFY EYES. GARY TAKES HIS PILLS AT NIGHT TIME, AFTER HIS MAIN MEAL. YOU SEEM PRETTY CLUED UP ABOUT THE DISEASE AND THIS WEBSITE IS A GODSEND FOR CMLers AND THEIR PARTNERS. I WISH YOU WELL FOR THE FUTURE AND HOPE THAT YOU KEEP LOGGING ON WITH UPDATES AS TO YOUR SITUATION. RACHEL

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