Query / Rant
Posted 15 December 2017 - 07:57 PM
l was diagnosed in 11/2013 and have been on Sprycel ever since. The majority of the time, I have used CVS Specialty pharmacy, but lately i am grown tired of their invasive survey practices. Originally was on 100 mg, then 70, then 80, and after a switch of Oncs last Nov, finally am on 50 and nearing undetectable. My insurance will only allow 30 day scripts which necessitates monthly conversations with CVS. Every single order they ask me to detail any new or worsening side effects, or changes in my health.
QUERY - does your pharmacy drive you crazy with a litany of invasive questions about your possible side effects and general health? Does it bother anyone else that this is a pharmacy, basically collecting survey data.
RANT -They are not my physician much less my oncologist and they are collecting personal information for some undisclosed purpose? Further, they ask how many pills do you have left? which is really none of their business. I have taken to telling them that i appreciate their concern but i already have a Dr. that i pay handily to treat and manage my disease process and i dont need another one. What ever happened to just filling the prescription and checking for drug interactions? I feel they are over stepping their role, potentially for a fee, or for the purpose of selling this monthly individual data back to BMS. Do all pharmacies do this? Who can i try that does not turn every order into a 5 minute 2 page survey?
Posted 15 December 2017 - 09:41 PM
When I was on Tasigna I got the same thing from CVS Specialty Pharmacy. I'd try to refill from work and go through the minimum of at least a 15 minute grilling. I never just outright refused to answer the questions, but I would think as a patient you would reserve the right to refuse. I think they ask you how many pills you have left not only to check compliance, but to assess exactly when they need to ship. IIRC, for a while the calls would end with a recording about the drug to which I'd just hang up the phone,but I think that stopped at some point. I agree it was a hassle and took way too long. Sometimes I'd tell them what meds had changed only to ask the next time... Well, what meds do you have listed that I take and they had not updated my home med list from the previous call. I'd say the patient has the right to refuse. Oh, and of course, if you detail your side effects, they are of absolutely no help. It isn't quite as bad on the Gleevec. I don't even get a manufacturer's package insert with G.
Posted 15 December 2017 - 09:43 PM
I have Sprycel from CVS Specialty delivered to our local CVS, they call when it arrives. When I pick it up I sign for it, no questions asked and off I go. I also get calls at 15 and 8 days letting me know they are shipping.
Posted 15 December 2017 - 11:31 PM
Deb - Great to see you doing so well!
Yeah, I hear ya. But still, I think this is less invasive nosiness or free research and just caution (aka CYA). These are powerful, expensive drugs and they are (relatively) new. Everybody's a little jumpy about the future and they just want to follow all the procedures so that nobody misses a step. I think they truly do want to catch problems at the small stage. It's tiresome to have to go through the same old questions, so I try and call when I am fairly calm and not stressed or in a rush. I try to be kind and courteous - it's a human being, after all, on the end of the line. I'll tell you what DOES ring my chimes like you - EVERY DOCTOR VISIT I have to go through ALL my meds, spell them for them, update the unupdated updates from the last time (why bother asking me, I wonder?) Jeez, what is the USE of computers????
For awhile years ago I was repeatedly offered a nurse's call to check on me and give me advice about lifestyle choices and preventive crap and managing my chronic illness. Man, I told her off fast - take a hike, lady - do NOT remind me on a good day that I'm chronic! I followed it up by calling the higher ups and telling them how dispiriting and patronizing this is - it's NOT helpful.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Posted 15 December 2017 - 11:37 PM
Posted 15 December 2017 - 11:57 PM
I wonder if their behavior varies based on which insurance company is paying for the drugs. I get Sprycel from CVS Specialty and they send 90 days worth at a time. They usually ask how many I have left (I fill out an online questionnaire), but then they ship the next batch to a local CVS about 20 days before I'll run out.
3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
Posted 16 December 2017 - 05:41 AM
Gleevec 400 - 10/2013 to present
CCyr - 3/2014
MMR - 9/2015
PCRU - 12/2015
.01525 - 3/2016
.024 - 5/2016
PCRU - 8/2016
.015 - 11/2016
.015 - 3/2017
PCRU - 9/2017
God is in control. I will trust Him.
Posted 16 December 2017 - 08:24 AM
I use Briova Rx which is the specialty pharmacy for Optum which in turn is the pharmacy provider for UnitedHealthcare. I can order when I have one week left, but this counter restarts after each order, so I have been able to build a small buffer. I have to get my Tasigna mail order (UPS), which I hate because I either have to request a signature and wait all day or have them leave a lot of $$$$'s on my front door step. I get a 28 day supply with each order. They call me with reminders when my refill is due. I get the same questions, but like Silvertabby, I have learned to say that everything is just peachy. When they ask how much I have on hand, I fib a little.
I am going on Medicare on April 1st and will be switching to either CVS or Walgreen's so that I can have the Tasigna shipped to the local pharmacy and then pick it up there on my schedule. We're lucky to have these TKI's, so to me it's all background noise.
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 18 December 2017 - 03:00 PM
I have Briova also. I just say I don't have any new side effects. I think they are great. They call me when it is time to reorder. It takes 5 minutes on the phone. I don't say that I have to sign for it. I live rural and someone is usually home. I have no complaints with Briova.
I have some extra building up also.
DebDoodah22.....Just tell them everything is fine and that you don't have any side effects. I save all my side effect info for my oncologist.I have Blue Cross Blue shield and with a copay card from Novartis...I pay 10.00 a month and Briova does an outstanding job. When I had Walgreens mail order, they had to do an override on the high cost of the medicine, it had to go to a committee, I had to call several times for a week or more just for a 3 month supply. It was a nightmare!!!!
Just tell them everything is great.
On Gleevec for 10 years
Results from 2007-2012 not shown below
International Scale from 2012 until now
Never went to 0
14.109 Changing to Tasigna 7/7/17
7/28/17 800 mgs Tasigna
10/5/17 600 mgs Tasigna (Lots of bad side effects)
10/16/2017 PCR down to 0.141
1/15/18 PCR down to 0.066 Dose reduction again. Now 400 mgs daily.
Posted 18 December 2017 - 09:09 PM
Posted 19 December 2017 - 02:58 PM
YES!!! It drove me crazy, I always said I'm not going to tell you if I do have issues, you aren't my Dr. I wouldn't want to speak to your nurse!!!! Now I just get them at Sloan because I am in the clinical trial, they are free. That's about the only good thing about picking up my meds.
"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins
Posted 19 December 2017 - 04:28 PM
I get my Sprycel through the pharmacy at the hospital where I go. The pharmacists call and ask questions every month and they also have a pharmacist visit me in person while I'm waiting to see the doctor at his office for my quarterly checkups. I guess it never bothered me since the pharmacist specialized in cancer patients. I even asked the pharmacist to advocate for me to get a lower dose from my onc, but that didn't work either.
DX 3/30/2016 WBC 484.2 FISH 95.3
took Hydrea 3/30-4/11
taking Sprycel 100 mg since 4/5
10 day break from Sprycel for platelet count of 12 4/26-5/8
7/07/2016 1.47% (IS)
9/30/16 BMB PCR .1259 switched to new onc
12/30/16 PCR .1569
4/7/17 PCR .0904 MMR
7/14/17 PCR .0520
12/1/17 PCR .0148
Posted 19 December 2017 - 08:15 PM
Posted 28 December 2017 - 11:28 AM
Depending on what they are asking you, it is typically associated with regulations. The reason I can't get auto renewals, etc. is because Sprycel has a black box warning and the pharmacist is required to ask a list of questions. While it may seem annoying it is done for the purpose of trying to ensure patients on potentially dangerous medications are properly reporting their issues. Both so they can be treated properly and ensure other patients are benefiting from the information.
Posted 28 December 2017 - 12:53 PM
".... The reason I can't get auto renewals, etc. is because Sprycel has a black box warning"
You can not get an auto renewal because you take Sprycel?
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Posted 28 December 2017 - 03:31 PM
I am using CVS specialty pharmacy and also doing 30 day refills but I use the app on my phone and I don't have to talk to anyone. It's very quick and my imatinib comes a few days later to the house. Have you tried the app?
Previously, my insurance used Acredo and I had to get on the phone monthly to renew my scrip. This is much better.
Diagnosed Age: 45
Diagnosed Date: Feb-19-2015
Drug/dose: Imatinib 300mg (reduced from 400mg on 1/31/2017)
Drug/dose: Imatinib 200mg (reduced from 300mg on 11/15/2017)
0 Month PCR = 20%
3 Month PCR = 0.3%
6 Month PCR = 0.03%
9 Month PCR = 0.019%
12 Month PCR = 0.0095%
15 Month PCR = 0.0104%
18 Month PCR = 0.0095%
21 Month PCR = 0.0038%
4/5/2017 PCR = 0.0057%
8/23/2017 PCR = 0.0096%
12/13/2017 PCR = 0.0114%
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