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#61 Buzzm1

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Posted 18 April 2014 - 01:53 PM

Thanks Mark, I'm surprised that there is a variation in prices .. thought we would all pay the maximum .. my end of March fill was $8214 ... under Medicare


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#62 winespritzer

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Posted 18 April 2014 - 02:13 PM

Hi,

My last Sprycel was $9134.29 for end of March. My co-pay is $480.75.

I am on Medicare and my pharma ins is Express Scripts.

YIKES!

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#63 Buzzm1

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Posted 18 April 2014 - 02:26 PM

winespritzer that's 28 days at what dosage?

thanks for the info


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#64 winespritzer

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Posted 18 April 2014 - 03:47 PM

Hi Buzz,

It's 100g of Sprycel. I forgot that that might make a difference in pricing.

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#65 chriskuo

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Posted 18 April 2014 - 04:04 PM

Sprycel should be for 30  days.  Tasigna is packaged by the week, so 28 days.



#66 chriskuo

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Posted 18 April 2014 - 04:09 PM

Drug prices are not negotiated by the government, but by the health plan, with the manufacturer.

Under Part D, drug companies are required to provide discounts during the donut hole.

The 5% copay kicks in at the catastrophic phase and the government pays the rest, not the plan.



#67 Buzzm1

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Posted 18 April 2014 - 05:48 PM

Thanks winespritzer ... 9134.29 + 480.75 = 9615.04 ..  ($9615.04 X 5% = $480.75) ..  $321 per 100mg pill

Sprycel 50mg $174 (Chris)

Sprycel 50mg $203 (Pat)

Sprycel 100mg $321 (winespritzer)

Sprycel 100mg $360  (0vercast)


your $480.75 co-pay must be a nightmare ... I'm very fortunate to have a partly company sponsored Medicare Advantage plan that provides drug coverage, with no donut hole; still. for whatever reason, the initial, beginning of the year, $20 co-pay, dropped to a $10 co-pay, in March .. it's somehow related to the donut hole


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#68 Buzzm1

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Posted 18 April 2014 - 06:35 PM

Hi Chris,

Thanks for your feedback

The problem with Obamacare is it didn't do much to fix healthcare .. not looking forward to the changes and effects over the next 2-3 years as it all gets phased in ..especially when they begin taxing us on employer funded healthcare

Buzz


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#69 chriskuo

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Posted 19 April 2014 - 12:25 AM

My copay for Sprycel 50mg has been as follows:

January  $10

February  $10

March  not yet billed (they wanted to charge me over $500 in the donut hole despite my employer retiree coverage in the donut hole, so they withdrew the billing and, a month later, they have not yet proposed a new billing)

April  $261 (catastrophic phase)



#70 chriskuo

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Posted 19 April 2014 - 12:29 AM

The excise tax on employer sponsored health plans will apply only to Cadillac plans and will not take effect until 2018 (4 years).

Probably not good for people with Cadillac plans, but how many of us have Cadillac plans?

There will be a lot of water over the dam between now and then.



#71 Buzzm1

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Posted 19 April 2014 - 01:20 AM

Thanks for your Sprycel price info Chris ..


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#72 mark1963

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Posted 19 April 2014 - 06:51 AM

Chris, what is considered a cadillac plan?

mark



#73 Happycat

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Posted 19 April 2014 - 01:23 PM

Mark,

At the time Obamacare was being debated, I believe a Cadillac plan was defined as "premiums costing more than $18,000" per year.  (That's my dim memory, I remember doing a calculation to see if we were over or under that amount.)  What is unclear to me is if that is what the employer pays on the employee's behalf, or if they do a combo of both employer and employee premium payments.  If it is just the employer, we should be fine, but if they combine employer and employee, then we would be in a Cadillac plan.  Which is not too surprising, since we live in MA and have pretty high premiums just due to the market.  Also unclear to me is if the Cadillac amount is tied to inflation.  What you got for $18K back in 2010 is a lot different than what you get for $18K today.

Traci



#74 chriskuo

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Posted 19 April 2014 - 05:06 PM

Here is a summary from the UHC website:

Beginning in 2018, a 40 percent excise tax will be imposed on the value of health insurance benefits exceeding a certain threshold. The thresholds are $10,200 for individual coverage and $27,500 for family coverage (indexed to inflation). The thresholds increase for individuals in high-risk professions and for employers that have a disproportionately older population.


The threshold will be indexed from 2010 to 2018 based on inflation. 



#75 winespritzer

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Posted 19 April 2014 - 06:03 PM

Dear Overcast,

What is your co-pay? Am wondering if I read it right. Mine is $480.75/month for 100mg.

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#76 RayT

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Posted 27 April 2014 - 11:07 PM

Hi, all.  I'm a newly diagnosed CML patient (Jan 2014) who's been on Gleevec for 2-1/2 months now.  A BIG thing that my doc did was to make sure my insurance company (Excellus Blue Cross in NY) treats Gleevec as a cancer chemotherapy treatment, NOT a prescription medication.  That is saving me $40/month in co-pays. 

I found out about this website yesterday while attending a free CML seminar yesterday that was sponsored by Novartis.  ("Team Ph+ CML Game Day," http://www.cvent.com...d0-f562136624d7 )   I was expecting to be hit with a push to switch to Tasigna, but was pleasantly surprised.  While there was a short time that was an obvious Tasigna advertisement, including a personal appearance/talk by Kareem Abdul-Jabbar (CML patient since 2008,) Tasigna was only "pushed" as the alternative for patients who aren't responding to treatment with Gleevec or Sprycel or can't tolerate side effects of those 2 drugs.  It was a very useful seminar for someone newly diagnosed, even me who works in healthcare.  Presenters included a physician, social worker and dietitian.  There was some very "up front" and honest discussion regarding the costs of CML treatment.  The current studies, RE: stopping TKIs after prolonged PCRU results, are partially driven by the desire to cut costs of long term TKI treatment, as well as patient noncompliance due to OOP costs.



#77 Buzzm1

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Posted 28 April 2014 - 12:27 AM

Welcome to the forum RayT -- 4 years ahead of you on Gleevec, which is scheduled to go off patent in January, 2015 ... thanks for the link .. hoping you tolerate it well and it works well for you...

Buzz


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#78 chriskuo

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Posted 28 April 2014 - 01:30 AM

I went to this program last year in SF.  It was held on Memorial Day weekend and I was surprised by the low turnout even with Kareem there.

I guess it is a reflection of how well most people on doing on their treatment.  When the LLS has their annual program in SF in January, about 800 people

turn out, of whom only about 25 attend the CML break-out.






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