10 replies to this topic

[jenz]

So I have been on some TKI treatement for 9 months and have NEVER missed a dose.  Tonight I was distracted and talking during my normal time and I honestly cannot remember if I took it or not.  The glass of water I got from the fridge is sitting on the table next to me ready to take it.  But my mind is telling me I already took it? Or was it another night at home I am getting confused with.  I immediately counted my pills to find that the two I would have taken tonight are still in the bottle.  So now I am really confused my brain is telling me I already took it while the bottle is saying no you didn't.  I am panic'd because what if I double dose on Tasigna at 400 MG that could be a really ugly site.  So I have been trying to decide what to do for over 30 minutes. I was scheduled to take it at 10:15 and that has come and gone.

Like I said I am anal about this and never miss a single dose.  I know missing tonight just to be safe will not hurt but man it sucks being on a drug your life depends on.  This is really scary.

I felt missing a dose is safer than double dosing.  I also look at this as an opportunity to change my dosing schedule anyway.  So I will be moving from 10/10 to 6/6

Jen

[Susan61]

Hi Jen:  Missing the dose will be okay.  You do not want to overdose.  I am sure a lot of people have forgotten to take one pill at one time or another.  I probably did it myself somewhere along the way.  Just get back on your schedule tomorrow.  I am on Gleevec, not Tasigna.  Don't get upset over it.

If the glass of water was sitting there, you probably forgot.  Hope your doing well, as I see your only doing this for 9 months.  I have been doing this for 11years.  You will be fine.

[ChrisC]

Hi Jen,

We've (mostly) all been there. In almost three years I've missed perhaps four doses, and lived to tell about it. I don't think I ever took twice the dosage.

What has worked for me is that soon after my dx, a good friend bought me one of those pill scheduler boxes: little snap-shut portions covering seven days of the week + four times per day.

Anyway, when I get my medication each month, I portion the month's pills out into the pill box. I don't take any other medication so each portion is one day's dosage. If it's Thursday and my Sprycel is in the Thursday allotment, then I haven't taken my Sprycel this evening.

Maybe such a box would not work for Tasigna? I read someplace it comes in push-through sheets, so if they can't be taken out ahead of time and put into such a box, maybe there is a way to tag each day's pills? With our brain fog, any system that works for us is worth setting up.

Good luck with it all,

ChrisC

[CallMeLucky]

Its scary, but you are in no harm missing one dose.  In 14 months, I missd one pill one night - I'm on Gleevec, which is only one pill a day, so I missed the whole dose for the day.  It will have no impact on your treatment missing one dose.  Remember that CML is a chronic disease so you are in no immediate danger if you miss a dose and the one dose missed will not hurt your progress in the long run.

[PhilB]

Been there, done that, ate my fingernails.

The only thing that keeps me (even vaguely) sane is keeping track of the pills so I can count up and convince myself that I really have taken it.  I've only forgotten 2 pills in 2 1/2 years, but many more times than that I've got out of bed, gone downstairs and checked that yes I really had taken the pill.

Will missing one pill hurt you?  No.

Will not being able to prove whether you have taken your pill result in you being fitted for one of those nice white coats with the extra long sleaves and the buckles?  Very probably.

My pills come in push out sheets of ten, three to a box.  Whenever I start a new sheet / box I write the day on the outside of the box.  When I go to bed I count the pills against the days.  Twice.

[GerryL]

Hi Jen,

When I went overseas I had to juggle my tablets around a little bit as I still wanted to take them in the morning - in the end I preferred to miss a dose rather than double up - I still went on to achieve MMR.

Gerry

[Happycat]

Jen,

I'm on Gleevec, so only take 1 pill per day.  However, I've had a heck of a time remembering it.  I take it with dinner, but since I'm usually doing the prep work, serving, getting drinks, etc., I'm the last one to sit down, and I have a very hard time remembering to get that pill!  So I've done two things.  I've tasked my kids to remind me (works ca. 50% of the time).  The other thing I did was set an alarm on my phone, so it goes off every night at 7 pm.  That's my final reminder, and it always prompts me if I forget.

It has helped some, but like you, I end up asking myself - I  took it at dinner, right?  Didn't I?  Yeah, I think I did.  Then I ask my husband or the kids - you saw me take this, right?  Then I've had to count the pills in the container.  But I'm never sure when I started the bottle.  So I've actually been counting the days since I was diagnosed back in April, because that's the only date I can clearly remember!  I've been counting out days for 4 months now (count to 30, then start over).

So, I am starting a new bottle of pills tomorrow. And I finally got smart and wrote the start date on the pill bottle.  At least now the maximum number of days I have to count is 30. 

Yeah, I'm on a roll!  Only took me 4 months to figure that out!  Now THAT'S the value of having a PhD....

Traci

[lala]

Hi......I wish we had a LIKE button!  I laughed......so many of us forget the pills!  I had to get a pill box.....sigh!  . Lala

[SunNsand]

  I sat down at my computer desk the other day and there were 3 Gleevec pills laying on the desk staring at me, no glaring at me. I'm wondering where they came from, who put them there, did I miss a dose? The sad part is I have one of those plastic pill containers but I can't remember to fill it each week.

[PhilB]

That will have been the work of the Gleevec Fairy.  Besides hiding pills and moving them about so you get a different answer each time you count them, this mischievous little creature also makes those gurgling sounds that keep you awake at night by sitting on your belly playing a very small tuba.  She also takes a particular delight in stealing the last of the toilet roll from the bathroom.

[lala]

You are funny!   Lala