26 replies to this topic

[Lynne D]

Question. I never put my meds in a pill case but my mom got all over me to set myself up for the week. So I have been doing it for a while and then it finally happened to me. Without physically taking my meds out of the pill bottle and knowing what's left, I just snagged the day of the week it is only I didn't realize I was near the end. I order from Aetna Specialty pharmacy it is sent overnight wont be here until Monday because I called after the time to get it out today. So I am on 400 mg of Gleevec (4/100mg pills/day), I have 600mg left and it's Thursday. My pills won't be in until Monday late afternoon. I need 1600mg to make it until Sunday.(NOT A MATH QUIZ I SWEAR!) 2000mg until Monday. Problem is I am not sure how to dose the 600mg I have. Should I do 200 today and tomorrow but skip Saturday and take 200 on Sunday? Or take 400 today 200 tomorrow and nothing on Sat or Sun? Gahhhh, All opinions wanted please,

Thanks so much, Lynne

[Trey]

There is no panic.  Personally, I would take 200mg per day and pick any one day to skip.  But there is no real right answer.

[Marnie]

Don't panic, and don't stress out (easier said than done).  Missing a dose is not as big a deal as it seems. . .there are many folks on here who have taken drug breaks.  I won't give recommendations on doseage, but there are lots of people here who will jump in and give you educated advice.  I toook a 4 day drug break when switching from Gleevec to Sprycel.. .and it was stressful.  But it was necessary.  Also, keep in mind that Gleevec has a fairly long half-life, so it remains in the bloodstream for awhile.

Marnie

[Marnie]

Whoops, Trey. . .you beat me to it.  I figured you'd have good advice!

m

[Tedsey]

If you are really worried, you could get a hold of your onc and see if he or she could write you a script to cover the day(s) you will not have pills.  My insurance, (also using online pharmacy), has an "emergency" clause where I can get my meds at a regular pharmacy to cover me until my order arrives via mail.  My insurance majorly messed up my last order and I would have been out of meds for many days.  Needless to say, this caused me much stress.  But my onc and her nurse came to the rescue.  I called them and they put in a call to my insurance.  Although you forgot to order, your insurance may have a clause like this.  You may be able to get your meds.

Good luck,

Tedsey

[Lynne D]

Thanks, that is the direction I went anyway before reading it. I do stress out to go 2 possibly 3 days without my meds. I have not had good experience going on and off any drug and I seem to be sensitive to Gleevec, but it could be worse.

[Lynne D]

I live in a very small town, lol, I wish I could do that. It happened once before...UPS didn't deliver it so it wasn't my fault so they had someone track the package, go get my meds and bring them to me. That was cool and they were more than cooperative, but this time??? Clearly all my fault, so I doubt my insurance company would have gone out of their way this time.  Sigh. I am just not going to really think about it because I am off for 3 days and the weather is going to be beautiful, so I won't have to think about it.

Thanks all.

[Susan61]

Hi Lynne:  I also have Aetna specialty pharmacy, and you know how efficient they are with delivery. When they give me the date, I know it will be here with  my UPS.  Don't panic.  You still have some, so if you want to split them up like you said you would do then do that.  You will be okay.  So many people have missed doses due to finances, or even being too sick with another illness where they could not keep their medication down.  I was in the hospital back in February, and they did not have any Gleevec available.  They actually told me to let my husband bring my  pills from home so I would not miss a dose.

I guess they would have had to order it in or something.  I wonder what they would have charged me on my hospital bill for those pills. Don't get upset,just do the best you can with the ones you have.

     I only take the one 400mg pill a day, and I always take it right after breakfast.  I find it so easy to keep track that way.

Susan 61

[Marnie]

Hey, Lynn. . .

Here's what I do, because I get pretty paranoid about running out of pills.   First of all, I get a 90-day supply, which makes it much easier to relax about the whole thing.  I use the calendar on my computer (Microsoft Outlook) for everything.  The day my pills arrive, I count ahead on my calendar and mark "Order Sprycel."  I color code it so it stands out.  I push my order date ahead as much as the insurance company will allow. . .at first I assumed you really had to wait 30 days before you could order for the next 30 days. . .but your mail order pharmacy (if that's how you do it) will be able to tell you exactly when you can order.  Curascript is great. . .they give you a phone call when it's time to order. . .but I usually order a couple of days before I get their call.  I go by my calendar date, and I always have it marked on my calendar WAY ahead of time.  This way, I build up a supply of extra pills.  So my ordering gets pretty out of synch with how many pills I actually have. . .but boy does it take the stress level down when you've built up a cushion of extra pills.

Good luck, and I hope your stress level has dropped somewhat.

Marnie

[Lynne D]

LOL, Marnie you seem sooo effecient. I used to keep closer track but I guess since it's been so long it isn't first thing on my mind (which is a good thing). Susan I always did take the 1 400mg pill but my dr. and I decided that I should try to take the dose split, 200 in the a.m. and 200 in the p.m. due to side effects. It's all just a  pain in my butt. I am not too concerned at this point.  I just feel so sick very quickly and I hate using days at work because I use so many I don't have enough for vacation. UGH. Anyhow thanks for everyone's advice.

[hannibellemo]

Lynne,

I'm so glad you posted because I forgot to order my Sprycel this week, too. I have enough to get me through next Tuesday and I intended to order this past week and totally forgot. I, too, keep my pills in a daily pill dispenser - otherwise I forget if I took it at all and then I have to count them, figure out when I started them, etc., etc. - such a hassle!

So I called this morning and they could get them to me overnight for tomorrow (they always ship overnight but I'd been told in the past they didn't do weekends), but I decided to wait and have them shipped to work like always on Tuesday. I won't cut it this short in the future, I'll take a lesson from Marnie and put my re-order on Outlook. I don't know why I've never done that in the past. I have a daily reminder set up so I don't forget to take the darn thing!  Brain fog? Who, me?

Anyway, thanks for the timely reminder!

Pat

[Marnie]

I freely admit that I am a geek.  I color-code all of my cml appointments and medication order reminders in orange on my calendar (orange, because Gleevec is the "golden bullet").    I use a pill box because it makes it so easy to see if I've actually taken the damned thing.  I can't believe how easy it is to forget if I've taken it or not.  Also, it keeps me more aware of when re-order time is approaching.  It's a ritual. . every Saturday night after I take my pill, I refill the thing for the next week, and then I see how many pills I have left in the bottle.  I get a real kick out of seeing how many extra pills I can build up. . .almost up to an extra month now, and I've only been on Sprycel for 3 months.  It will be harder to build up my cushion once I start the 90-day supply, because there's only 1 shot to order early every 3 months, rather than every single month.   Since we travel extensively in the summer, I really like to have as many extra pills as I can have.  I remember thinking the year that the volcano blew in Iceland, or wherever it was. . that if you were on vacation overseas, and the planes were grounded for a week. . that would be a real problem.  So I am super vigilant about building up as much of an extra supply as I can, and taking mondo extra pills with me when we are on the road.  Yikes. . .what if you got kidnapped and held for ransom??!!  At least I'd have enough pills to be a hostage for an extra week!  After that I'd have to play the sympathy card!!

[Lynne D]

LOL so true. My insurance company won't allow a 3 month supply. I had a cushion but guess I used it up. I really thought i had a bottle with some in it but my memory is so bad, I could have used them already. So maybe I will get color coded. Thanks

[Susan61]

Hi Lynne:  You said you have Aetna Specialty Pharmacy which is Accredo like I do.  I do get a 90 day supply, and there has never been a change in how I get them.  I wonder why they only give you a 30 day supply.

     I do things very similar to how Marnie does hers.  They always call me when I am due, but I stay ahead by almost a month with my pills.  I write down on my calendar when I need to order.  If they call me, I just tell them that I have another week or whatever it is before I have to order.  I just always ordered weeks in advance of running out, and thats how I stay ahead with my supply. They insist on giving me another reminder, and I just say fine.  You will find a good system that works for you.

Susan 61

[Lynne D]

I'm usually pretty diligent in ordering my meds. Maybe it's the plan that's different? Not sure but beginning to think I might fight for a 3 month supply.  But I am a totally disorganized person so no matter how much I try to stick to some kind of protocol, it gets dropped somewhere along the line. Maybe it's just too much other stuff on my mind too, who knows. I better learn fast so this doesn't happen again.

[Happycat]

Will the pharmacy call you if you're Rx is due to be filled?  I'm getting my G at the oncology dept, and their pharmacy will call me I need a refill (so they tell me), and will also mail order it for me so I don't have to run into Boston.  But nice to know I can always run into the city if I do mess up somehow.

Traci

[Marnie]

Lynn. . .check in your insurance coverage book.  It should tell you if you can get a 90-day supply.  My copay is lower for 90-day supply than it was for 30-days (well, I mean for 3  30-days).  Perhaps all it will take is having your oncologist write a script for 90-days, though making the change will certainly require a pair of scissors for cutting through the red tape.   Also, specialty pharmacies usually have a direct line for physicians to call in prescriptions so that you don't have to have the time-delay for mailing it in.  Once you get the mail order thing lined up, it's a very smooth operation.  Thank goodness!!

[Susan61]

Hi Lynne:  You know you are right about having so much on your mind.  My sister just called me from Montana, and we talked for the longest time about how much everyone has going on in their lives.  Our minds go nonstop trying to deal with various situations everyday.  I feel like I never take a minute to just clear my  head.  I would ask about the 90 day supply, and if  you read my other post I said I am not as organized as Marnie.  I found that the calendar on my desk where I write out all my bills I write down everything regarding medication, appointments.  I also started carrying one of those Pocket Calendars in my purse.  I usually order it from Walter Drake or one of those mail order places. I have so many friends using them now too, and thanked me for the idea.No matter where I go, and I need to make an appointment I just pull it out to be sure I do not already have something planned for the day. I write my appointment down in the calendar, and then I do not even need the card they give you that I usually lose anyhow.

I think we just need to learn the best way to organize ourselves in the way that fits us best.

Susan 61