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Going to be w/o medicine for a couple of days...advice?

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#1 Taylor



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Posted 08 June 2012 - 10:01 AM

I've been taking Tasigna since Feb 2011 and it's always been shipped to me straight from Novartis because I didn't have insurance and was placed on their assistance program. 

As I had finally gotten insurance, my place on the program lapsed and last month I placed an order for the meds from my oncologist's specialty pharmacy. No problem at all, I picked it up the next day.  This morning I called because I'm almost out again (I have 8 days left, not including tonight's dose).  They said it was no problem and I could pick it up Monday or Tuesday. 

They then called back and said that the prescription was rejected.  I had to call CuraScripts and figure it out, turns out that they just don't have it in supply so they have to verify my benefits and prescription...which could take 24-72 hours, and it's Friday.  I wasn't in their system...yet my onc's pharmacy used everything to get my prescription last month; not sure what's different. Then they said it would take 5-7 days to get the meds to me after that.  Thankfully they marked it as "urgent"...but who knows what that will do.

I reached FISH negative in August, 6 months after treatment, and was PCRU in September.  Last PCR from March showed 0.001% on PCR so I'm still good with that.

So let's say I go four or so days without meds at the worst...is that okay?  Or the last few days should I drop down to a half, almost "maintenance" dose so I can still have a decent supply in my system.  My onc's nurse said a couple of days would sure be fine but I'd like more peace of mind... 

Thank you all!

#2 Trey


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Posted 08 June 2012 - 08:15 PM

I would probably alternate full and half dosage every other day until it runs out.

#3 tranier


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Posted 08 June 2012 - 08:17 PM

please email me at tranier@nortonschools.org...I think I could help...

#4 Happycat


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Posted 08 June 2012 - 08:28 PM


It's likely fine. Many people stop TKIs before surgery, etc., and that's a few days off, plus many more have to take a month or so off with low blood counts or side effects. Should be fine.

Now, that said, my big piece of advice is to make a PITA out of yourself with curascripts. Call them Monday, make sure the paperwork is going thru. Call them the next day for a progress report, etc.  Ask questions about all the steps in the process, and write it all down so you can throw it back at them if they start dawdling.  Get timelines, and make sure they stick to them.  And remind them it is "chemo" and you still have cancer. (yes, I know, KNOW, mind you, it's not chemo, but I'll shamelessly use it to my advantage when needed!)

I tell you this because I didn't do that for my dd's asthma meds when in a similar situation ( had to get it all reapproved, which the dolts didn't bother to mention until I noticed it was 2 wks late and started calling). I had Express Scripts. They dropped the ball  on it twice, and I stupidly trusted them to get it done. When I realized it had been a week with no drug, I found out they had f'd it up again. It was just sitting in someone's mailbox somewhere. Then another couple of days, no action, etc. I finally had to pitch a fit and insist they overnight it ASAP since she was out and had been off the meds for 10 days.

The point is, don't trust them to get it right, or to move it with the alacrity and patient-focus they should have. You need to keep on the case. Daily.  Be polite, of course, but spend some quality time with the customer service staff. It will pay off.



#5 Taylor



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Posted 13 June 2012 - 12:53 PM

Hi all,

Thanks for all the help!  I was persistent and after some snags everything is good and I'll get the meds this weekend.  Thanks again!

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