26 replies to this topic

[5tigercubs]

I just got back from a little walk. I am hoping to take them every day the weather permits now that I have some strength back after the PE. and going off of topomax. No headaches in the 3 days since stopping so hoping for good things there.

the doc monitored my first dose of Gleevec in the office/cancer center today and it was good. All the EKG's were fine, I got nauseaus and pale but that was pretty much it. slight numbing in lips. so they let me go after the labs for everything else were drawn and a workup to see where the clots came from.

dosing starts at 100mg 1x per day for 3 days ; 100mg 2x per day for 4 days. after that doc will decide if she takes it right to 400mg per day or if we stay at 200mg per day for a while longer.

so now i am queasy, and  headachy which was my daily norm for 6 mths before dx anyway. trying not to think about side effects. i figure if they are bad i wont be able to not notice them and then i will deal with whatever comes up.

trying to use the zofran only when i get desperate or cant eat from the nausea. thanks for being here

[knoppl]

I have been on Gleevec for a little over a year. I still have side effect and somedays I feel better than others but overall I feel ok. My life has not changed too much other than I pace myself more and do get tired a bit easier.  I hope you feel well and as time goes on you will adjust and hopefully side effects will be minimal. I will never forget the first day I took my first Gleevec, it was a tough day but yet good to start getting the cml under control.  I have to say that I feel so much better now than before I was diagnosed, I didn't realize how rough I felt.  Wishing you all the best!

[CallMeLucky]

Congratulations on the beginning of your journey.  I remember when I took my first pill (wasn't that long ago) I was handling the bottle like it was a grenade.  Anyway I took the first pill and figured I only had 15,705 more to go

All the best, I hope your side effects are minimal

[cyclejoy]

I started Sprycel a week ago and today, my WBC was not changed at all, though platelet count is down some. Side effect from drug - dry eyes (am drinking more water as onc says with a high WBC very important to stay hydrated).  Tired in pm. I had no symptoms of CML - just sent to a hemo onc specialist when my WBC came back at 57,000.  Now that I am on Sprycel, I feel tired in the pms. Onc said ok to try taking it in pm instead of am.  I am training for a 1/2 marathon at the end of Feb and literally felt great when dx. How weird is that?

My question is, has anyone had an elevated calcium count with CML?  Mine has been high 10.2 - 10.7 for a few years and we thought it could be a hot parathryroid.  High calcium counts can be indicative of cancer.

I hope my WBC is lower next week. A  little overwhelming but thankful for drugs and a support group. 60 years old and definitely not ready to leave the party any time soon!

[5tigercubs]

hahaha a grenade....sorry , i shouldn't laugh. I felt that way when the gave me first the tasigna and then sprycel... but after the short time with those 2 and all the craziness in between in was happy to start gleevec. the doc gave me a good break from meds and i get to start fresh so to speak.

the quivery stomach is gonna take some getting used to. it is wonderful to be her on the boards. when the doc first said gleevec i came here freaked out but all of you sent me in ther confident. many thanks!!

cyclejoy, i didnt feel sick till i started meds either or so i thought, cause when i thoiught back i had been nauseaus and had migraines all summer into fall and winter 2010 wich my doc says are symptoms.    i am hoping your counts start dropping.

[jenn]

LOL @ The Grenade...my husband still does that after 6 months,he won't touch it. We are very pleased hough 6 months on Gleevac and  BMB shows CCyR,still waiting on pcr results for 3 weeks !!!!

[hannibellemo]

Lucky, that was great! Wonder how many of us took our first pill and just waited for the lightening to strike?!

Pat

[5tigercubs]

Jenn, awesome results!!! good to hear.

[CallMeLucky]

First pill was quite anti-climatic.  I took my pill and then just sat there waiting for my head to explode (actually I was wondering which end would explode first given all that I had read about it ).  Basically I just sat there, nothing happened, I had an itch, wondered if it was caused by Gleevec, then just decided to go to sleep.

Overall my side effects have been reasonable with fatigue and sore muscles being the worst of it for me.  Stopped exercising for a while, although the snow shoveling has more than made up.  Hope to work up will power to start again in next couple of weeks.

[5tigercubs]

You are all so great!!! Thanks for being here. cant say that enough.

Got a walk in early this am before the cold sets in again. loss of appetite seems to be the worst, then some leg and back pain. but no worse than before dx when i thoiught i was just stressed out over holidays.

[5tigercubs]

oncdid not raise me to 200 mgs gleevec today as planned. actually wanted to hold til monday due to a nasty side effect. i said i wanted to keep going on the 100mg and give it a chance to settle in. she agreed.

[Stevea]

I had problems with my stomach also when I first started so I ate more food before taking the Gleevec and then everything was fine.  I started on Gleevec in 2002 (I was 19 years old).  I don't remember taking my first pill because I was in the hospital sleeping 20 hours a day, so I took whatever they gave me.  I had no idea what was going on.

[5tigercubs]

stevea, i will try harder to get real food into my stomach b efore taking the pills. thanks for your input.

[GerryL]

Hi 5tc,

I take my Glivec with breakfast - a bowl of rolled oats and a banana (which for me seems to help with the diarrhea), that way I know it is over an done with for the day and I don't need to worry about what I am eating for the rest of the day. I do find I can feel a bit nauseous about 1/2 hour later, but getting out into some fresh air for a short walk seems to help.

I'm hoping this is the drug for you, as you've been through the wars with the other two TKIs.

[5tigercubs]

  i am hoping too. the stomach issue has been a problem long before dx or any meds. is just gets worse i guess. i am still having an aversion to food all day so the best i do right now is the boost then gleevec with bottle of water. it takes me the rest of the day to drink a whole can of giger ale. i prepare food to eat and then cant stand the thought of putting it in my mouth. i swtarted doing boost am and pm just for cals and iron. i have a feeling that given time this too shall pass. i eat about 1 decent meal once every 4 days. but i try everyday. i am finding that the worst sides are emotional/ depressive. the gastro stuff i have had for a year now anyway.

whatever sides i have at moment are doable, i just have to be calm when we start raising dose and give each raise enough time to settle in befor next raise. then its all about the blood work. take care,

robin

[knoppl]

About a month ago I started splitting my Gleevec and taking 200mg twice a day. It has made a  difference in nausea and overall how I feel. I am not sure how it has helped other than I don't take a big dose in the morning.

[GerryL]

Hi 5tc,

To be honest, I think you're going to need more than Boost if you're to increase your Gleevec dose eventually. Twice now I have misjudged the amount of food I have eaten prior to taking my Glivec and both the Glivec and the meal have come back up. Mind you I felt great straight after.

You've probably been through everything with your doctors, but here are two suggestions from me.

- I would think you have diarrhea due to the fact you're not getting any fibre into your system, have you tried any of the soluble fibre supplements, since you can't face eating food at the moment?

- My GP gave me a script for Maxolon and told me to take it half and hour before my Glivec meal, so far my nausea hasn't been that bad that I've had to take that step.

[5tigercubs]

My onc says she has a couple patients that split the dose like that as well and it has helped them alot.

I am still only at 100 mg once a day and i take it around 10 am. that is the earliest i can put anything in my mouth or stand to be in the kitchen.

[5tigercubs]

I  have not had any diarhea at all which is surprising. my onc and i havent talked much on the eating thing but she did say she would like me to get solids in before the gleevec if i can. i will have to spend some time in the grocerey store and try to come up with something i may eat. thanks for that tho i hadnt thought eating habits would also effect raising the dose on schedule.

[GerryL]

I think I'm just so used to taking my Glivec in one dose, I wonder would there be anything preventing you taking 100mg four times a day?