I have a question. Does anyone's doctor prescribe refills on Tasigna? Our doctor is saying that Tasigna has to be prescribed each individual time and he literally cannot prescribe refills. Which means every single time we need a prescription we have to first call the pharmacy, then they call the doctor, then we wait, then I usually have to call the doctor and pitch a fit, and then we wait some more. Because this med is shipped, this is usually a gigantic pain in the keister and we are usually on pins and needles constantly having to do this dance. I frankly think this is bullshit (please excuse the language I'm just really frustrated) and don't understand why my doctor can't prescribe 3 refills between visits since my husband will be on this for life, it's not like this is Oxy or something. The med is so regulated we can't just go to a pharmacy and pick it up or anything, I don't understand this dance. My husband travels a lot for work, and we are constantly having to do this battle with wondering if we are going to get his meds in time. This is becoming a real hassle and I am trying to understand the logic. I have done some googling, but the pharmacy doesn't seem to think refills can't be prescribed, they keep asking why the doctor doesn't prescribe refills, this is coming from my DOCTOR. Is my doctor just full of it??
Posted 13 June 2017 - 08:22 AM
Posted 13 June 2017 - 09:00 AM
My oncologist at Mayo sends my Rx with refills. Last Rx had 7 refills. My health insurance is UnitedHealthCare and they require that I use their specialty pharmacy BriovaRx. I can only get it shipped from them, which they do next day UPS.
I do not understand why your husband's doctor cannot send in the RX with refills. Good luck straightening this out.
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
Posted 13 June 2017 - 09:08 AM
That's what I thought. I called two different pharmacies and they all said they could find nothing that prohibited prescriptions in the literature. You confirming for me that your doctor writes refills means this is just BS. Thank you. I am calling my doctor today and either he writes refills, or we find a new doctor. Done with this dance. I appreciate the quick response.
Posted 13 June 2017 - 09:44 AM
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Posted 13 June 2017 - 11:37 AM
08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)
Posted 13 June 2017 - 12:56 PM
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
Posted 13 June 2017 - 03:05 PM
Dx July 1, 2015 PCR 100. Chromosomes 19/20. Started on 100mg Sprycel. End of Sept. numbers same as at diagnosis..switched to 140mg Sprycel. Numbers dramatically improved..
May 3 - .89 Also started with side effect of low platelets. Was taken off meds for a week at a time in May, June and July to allow platelets to recover.
July 20...FISH- negative
July 28..switched back to 100mg Sprycel because of continued low platelets
August 30...PCR..2.0, Platelets..44
Oct.25..PCR..1.7, Platelets..41, Still on 100mg Sprycel
Nov.6, 2016..changed to 600mg Nalotinib
Dec.20..PCR- .87, Platelets..117
Jan. 31,2017..PCR- .809
Aug. 21...PCR- .18
Posted 13 June 2017 - 08:56 PM
I go to Mayo and have Blue Cross Blue Shield. My Onc. does 6 refills at a pop. Been doing that way for over two years now. No issues.
Tasigna comes from Walgreens Specialty Pharmacy.
Posted 14 June 2017 - 12:20 AM
Posted 14 June 2017 - 08:40 PM
Could it be that it is a stipulation of your insurance plan? I'd call them and ask.
Posted 15 June 2017 - 08:39 PM
I use CVS specialty. I have refills.
Posted 18 June 2017 - 05:06 PM
I no longer even need to be pre-authorized every year, when I last checked my pharmacy said I have been approved indefinitely. They just keep sending my Sprycel on a monthly basis. Easy-peasy. You have enough stress with this disease without your doctor adding to it. Most docs write scrips with 11 refills.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 26 June 2017 - 05:14 AM
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
Posted 25 July 2017 - 07:57 AM
I want to thank everyone who took the time to respond. I did read everything. We are currently in the process of moving and getting ready to get my husbands one year results so we are a bit crazed here. I do want to thank every one for their help. I ended up going nuclear on the doctor's office and putting them on full blast and got a 90 day prescription with two refills so we should be good for a while at least.
Really thanks again. I don't post a lot because I feel like we are too new into this for me to be any help to anyone but you guys are really great with the help and the info. Thanks so much to everyone.
Posted 25 July 2017 - 05:00 PM
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