34 replies to this topic

[pamsouth]

Ok Trey,

Help me out, what is it about taking Gleevec at 100mg and spacing it 3 or 4 times a day.  Is it less side effects for some folks?  Another words why are they taking 2 100mg at one time and 2 100 mg latter instead of just cutting the 400 mg in half and taking 1/2 in the morning and 1/2 in the evening. 

PamSouth

[simone4]

Pam, I think your oncologist can prescribe the 100mg tablets. You could take

200mg am and 200mg. pm. Does that make sense?

I would not cut a 400mg in half, however.

Good luck.

Simone

[pamsouth]

Simone,  Why would you not cut a 400 mg Gleevec in 1/2?    I have asked onc to give me the 4 100mg daily based on my kidney and liver.  He said No, it all has to go thru the liver and kidneys anyhow.  But I guess I was thinking it would help to space them.  My kidneys filteration are at a stage 3 GFR.  That is one stage from dialysis.

On basis of what or how would I approach the oncologist to give me $100mg tablets?  I have asked him twice over a period of 1 1/2 years, I must not be phrasing my words or rational in the right language.

However yesterday I just received my shipment of Gleevec 100mg 3 x a day.  I had to really fight and complain to get that, as my Fish and PCR were 4 % in June 2013.  For me I am happy to stay there.  I have been on Gleevec for 8 years.  I am 65 years old and other health problems have been creeping up, I just wanted to have more of a quaity of life, was even hoping to get this house ready to sell and move to Florida while we are still able to, but to many doctor appointment, to much going on. 

I believe lowering the dose just a little will help me a great deal, rather then changing TKI'S and going thru all those serious side effects and not knowing what new side effects are lurking about..  I tried 50 mg of Sprycel last week and it was horrible!!!!  I called the drug company for Sprycel and they took down the name and number of onocologist and my pharmacy.  The doctor called me in about 15 minuets they must have gotten his attention right away, as I usually go around and around with his nurse, sometimes I wonder if she even tells him that I call.  She argues with me instead.  Since when to the nurses take debate with you I thought that was the docftors job.

Anyhow am temporarily happy to get the oncologist to order 300mg of Gleevec, but if PCR & FISH are not within CCYR he will be on me again to increase dosage or change.  I have been in low CCYR for 8 years and I gold him I am 65 years, he says that is young, hug, he isn't feeling, my  every arthritic pain there is.  Thank God my kidney doc gave me a scrip for Vit D2 at 50,000 units, it has been like a miracle drug.  It is a gel so it helps to absorb.  The vit B12 goes under the tongue to absorb thru the blood stream.  I think since my kidneys are damage some of my problems are not getting nutrition.  So I can't afford anymore kidney damage.  I don't how much of a roll Gleevec play in my kidneys.  But I am only taking diuretic once a week and hopefully lowering my dosage will help, if the onclogist will continue to keep me at 300mg.  Kidney doctor said I don't have fluids in ankle and feet,  so don't need to take diurectic if I don't have to.  Thurs I am thinking it would help if I could take a lower dose of Gleevec and take diurectic once a week for sweeling in arthritic hands.  Kidney are such a major role in everything, from heart, thyroid, electrolytes, vitimins, waste everything.  I don't see the point in being at PCRU if it is truly causing kidney filters to be damaged. I mean at this age what is the cost, there is something to say about quality of life and sutting down my other organs.   I guess I am the only one on the board who feels this way.  But I stayed with a friend of mine in Florida for a week and she is on a dialysis.   On the days she was off dialysis we tried to do some things on the beach and eat out, just small things, and she was a terrible mess.  I hope and pray her kidney donor works out.  Trust me reality set in as to what kind of life that would be and it just freaked me out!!   I understand the oncologist have guideline by the Drug Maker or FDA or whoever, and I am not playing by their rules, but it is still my life, and I want to spend the last years of them enjoying life not falling apart little by little. 

PamSouth

Thanks for the advise, Pamsouth

[Susan61]

Hi:  Keeping your hair short does help.  I had problems in the beginning, but then my hair thickened up and actually got curly more on my right side than the left.  I always had very straight hair.  I take Vitamin D-3 everyday, and it has brought my level up to normal.

    The kidney functions is a whole new subject with me.  I still have a low GFR.

[Ray99]

Susan,

   I have hair thinning problem taking Tasigna.  If D3 help to restore some hair loss, I am willing to try.  What dosage of D3 do you take?  Do you prefer any particular brand?

[Trey]

At first I cut my 400mg Gleevec in half and took half twice per day, then eventually switched to 100mg tablets.  When taking half a pill I always chewed food until ready to swallow then put the pill in the middle of it and swallowed.  Went down easier that way.  Otherwise the jagged end going down first was an issue for me.

[TeddyB]

I have cut the 400mg pill in half myself with a pill cutter, it looks just the same as the 100mg when broken in half, and they are scored. (There is no coating where the pills are split, neither on the 100mg or the 400mg) I didnt actually swallow the split 400mg pills, i just disolved them in water and pretended it was a lovely beverage, even though it tasted like SHIT

Thank god i manage to swallow the 100mg pills fine now, even though from time to time i "enjoy" a nice glass of Gleevec juice, just to use up the few 400mg pills i have left. (Cant let them go to waste)

Maybe i will try to cut a 400mg pill in half, and try Treys suggestion of chewing food before swallowing them, if that works, i might switch back to 400mg again.

Sorry for hijacking the thread, but Trey, if you read this, why do you think i get diarrhea from swalloing 4x100mg tablets of gleevec, while i get more or less constipated when disolving one 400mg pill in water and then drinking it? I eat the same food, and use the same amount of water each time, around 2dl.

Each time i know i am driving for a few hours, or going to some event, i usualy disolve in water, and everything is fine, if i dont, i usualy have to take Imodium/Loperamide.

Teddy

[Trey]

Teddy,

As for why the diarrhea when taking 4 x 100mg Gleevec tabs, the only difference is that you get more iron with the 4 x 100mg than 1 x 400mg.  Gleevec is coated with rust (iron oxide), and 4 small pills have more coating than 1 large one.  Iron can cause diarrhea in some people.

http://www.livestron...cause-diarrhea/

Maybe there are other variables, but this is one possibility.

[TeddyB]

Thank you Trey.

I will try to have the pills in my mouth for 3-4 seconds and spit out some of the coating before swallowing them. Sounds like a bad idea, but i will try it, the trick will be to spit before the gleevec comes off.

If it helps, it will be worth a bit of bad taste in my mouth, ugg.

Teddy

[Trey]

Interesting technique.  Do you also do that with your Lutefisk?

Personally I would wash them off, but hey, I'm not Norwegian.  Lykke til!

[TeddyB]

Takk Trey

Actually i dont eat much Lutefisk, well maybe if i get it together with lots of Aquavit and bacon to hide the taste, but it is not something i would recomend to anyone as it actualy tastes worse than gleevec

Update: My Gleevec mouth trick worked just fine, now to see if it helps with the big D.

[TeddyB]

Almost a month has passed since i started with this, and it seems to have helped a lot.

The first week after i started i stil had some D, but after a week it helped, and i havent had to RUN to the bathroom since.

Might be a coincidence, but still, i will continue this routine for now. The trick is to swallow the pill before you feel the awfull taste, 2-3 seconds is enough for a little of the coating to come off, but some is still left on

Thanks for the great tip Trey!

[Trey]

If your plants need some iron to green them up you could spit the coating out on them.  And if your Bilirubin is high you could also pee on them.  Sounds very Norwegian.

http://en.wikipedia....plant_disorder)

[TeddyB]

Spitting on plants, hmm i wonder what the people at work would say if i started doing that around the office

I think its best to hide out in the bathroom for this routine, even in Norway, hehe.

Of course on a Friday night, anything goes

[August1]

I just moved over to Sprycel after one year on Gleevac. The main reason for doing so was fatigue, muscle weakness, and GI issues. I've been on Sprycel for two weeks and my bloodwork (CBC, CMP, LDH) looks great. I also think the fatigue has diminished somewhat and the GI issues have improved a lot. I do notice that I've developed a sort of nonpruritic rash on my abdomen which we are watching. Other than that no complaints. If you think about it, It's pretty amazing to be able to make a "lifestyle" choice for medication when dealing with this disease. I feel very lucky to have to option to try the Sprycel.

My only advice would be the obvious: Make sure you get regular blood work to track progress. Keep your CML in remission first!

Best wishes,

Bill