12 replies to this topic

[Mayra]

Ok so since diagnosed I have never forgotten to take my pill! Ever! I don't know what happened last night.  I woke up this morning and that's the first thing I thought of.  What do I do? Do I just wait until tonight? Is one missed pill going to affect me a lot?  I swear I'm jittery this morning.   I will be more careful and set an alarm every night now.  Has this happened to some of you guys too?

Mayra

[CallMeLucky]

It happens to everyone.  Just skip it and take your next scheduled dose.  Missing one pill is not going to hurt you.  Missing one pill every week would not be a good idea:)

If you have a smartphone there are apps to help you track your meds and send reminders when time to take.  I use RxmindMe for iPhone, but there are dozens available depending on platform and preferences.  The one I use is free.

[hannibellemo]

It happens, just try not to let it happen too often. I use my smartphone calendar. I have a reminder set for the rest of my life! 

Pat

[0vercast]

Don't sweat it, just don't make a habit of it. Considering your reaction, I don't think that's going to be a problem.

I know you're taking Sprycel, but for what it's worth, I read somewhere that some Gleevec researchers believe that missing 6 daily doses per year might prevent a person from reaching PCRU, but missing fewer than 6 will not have a noticeable effect.

[Mayra]

Of course it has happened again.  It's almost one in the morning and I'm lying awake because I can't remember if I took my pill.  So I started counting the bottle only to not remember the date I opened it.  Darn smartphone!!! It didn't ring tonight because I had the phone on silent.  Why does this drive me crazy.  My husband said turn off the light and my answer to him was OK I will as soon as I take me medicine.  So the light is now off the water left in my cup is not empty and I have 29 pills left in my bottle.  Do I take it?  I'm guessing it's better to under dose than over.  What could happen if you take to many?

[GerryL]

Hi Mayra,

I've missed around four or five doses of TKI (Gleevec) over the 3 1/2 years I was taking it - two of them were due to being ill and vomiting up the tablet. I still went on to being PCRU.

[Marnie]

Hi, Mayra. . .it happens to everybody.  Were it me, I would take the dose as soon as I remember, rather than waiting until my regular dose time, and then take the following dose 24 hours later.

I use a weekly pill box.  It's the only way I can remember if I've taken my pill or not.  I hated buying it. . .seemed like an "old folks" thing. . .but it works great for me.  I have a phone alarm (which goes off even if the phone is set to vibrate), and my husband has his watch alarm set.  He's my teammate in reminders.  He hasn't gotten very involved in my cml, but that's the one thing I asked him to do and it makes him feel good to be my personal reminder.  If either one of us are not around when my 7:00 reminder goes off, that's the first thing he asks me when he sees me. 

Good luck finding a system that works for you.  I always carry 4 extra pills in my purse just in case 7:00 rolls around and I'm not home.  They have saved my butt (and my anxiety level) many times.

Marnie

[Tom1278]

I second the pill container.  I have a iPhone reminder for the Gleevec, but the pill container is the best way to track my medication to ensure I took it. 

If my spouse passes by the pill container at night and the Gleevec is in there, I get a stern reminder. 

I've been on G for 20 months, and I think I've missed 1 or 2 doses. 

[hannibellemo]

Ditto on the pill container! I fill mine every Sunday, otherwise, I'd never remember if I took it or not. I've never forgotten to take a pill - yet... but I have been all the way to work when my alarm goes off on my phone and had to turn around and go home to take it. I also have an alarm on my work computer.

I took an extra weeks worth just in case I couldn't get home from vacation; unfortunately, I didn't have to use them!

Pat

[CallMeLucky]

For smartphone you can download Rxmindme.  What is good about this one is not only does it remind you but it also keeps track of your pill count, so when you start you set how many pills you have.  Each time you take one you enter into phone and it lowers the count.  I always know how many pills are in the bottle and if I can't remember if I took it I look at the count and count was is in the bottle.  If bottle count is higher than phone I know I didn't actually take it.

I have found lately I can't remember swallowing the pill.  I can see myself take it out of the bottle and I know I drank water but can't actually remember swallowing the pill.  Guess I've just done it too many times at this point.  So the counter is good.  I would also recommend the daily style pill box.  I have a set with 7 pieces, one labeled for each day of the week.  Every Sunday you fill up for the week and then there is no question.  If not sure just look at the pill box for that day and you'll know if you took it.

[Mayra]

Those are all great ideas.  I got up and counted the pills left and the counted back to when I started and it turns out I would have started a new bottle last night.  It's weird you'd think I would remember that I opened up the container and took one.  So my calculations said last night I opened up a new container so I should have 29 pills left and that's what I had.  It's just weird that I couldn't remember taking them.  I will ask my husband to help me remember. I've only missed two doses and I'm a year in.  So I'm over 99% compliant.  If I'm taking these pills for the rest of my life it would make sense that I get a system that's fool proof.  I think sometimes I have TKI brain.

[tazdad08]

well... I have been a bad boy. I was on 100mg of Sprycel for 1 year. Then I was changed to Tasigna. My onc put me at 400MG  of Tasigna daily. I couldn't handle the side effects. I watched my results of the blood tests and started taking only 200MG per day. My onc still doesn't know that I am only taking the half dose. I am doing this for two reasons... Trying to have more good days for my 5 year old, and stocking up on meds just in case Obamacare doesn't work. I go back in two weeks for a follow up. we will see then.