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#1 Gail's

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Posted 19 February 2016 - 01:45 PM

Druker on drug prices

http://www.oregonliv...ience_univ.html
Diagnosed 1/15/15
FISH 92%
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

#2 Buzzm1

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Posted 19 February 2016 - 03:06 PM

Imatinib Cost/yr. USD

U.S. Gleevec $132K
U.S. Generic $119K
Canada Gleevec $46K
Canada Generic $6.5K
 

Senate Health Committee - House Oversight Committee

 

02-08-2016 Experts reveal 'troubling' industry-employed strategies to delay availability of generic cancer drugs http://bit.ly/20KUwpf

 

The delay of a generic form of the leukemia drug imatinib (Gleevec, Novartis) provides an example of pay-for-delay, Kantarjian told HemOnc Today in an interview. 

"The patent for imatinib was supposed to expire in July of 2015," Kantarjian said. "Novartis made a deal with Sun Pharmaceuticals — which was the first company that would introduce the generic to the U.S. market — thereby delaying the introduction of generic imatinib by another 6 months, until February 2016."

A generic version of imatinib was introduced on Feb. 1, 2016, according to Kantarjian; however, the generic version has 180-day exclusivity in the U.S. This, therefore, results in an additional 6-month period where only two companies — Novartis and Sun Pharmaceuticals — decide on the prices of these drugs. 

"Because of these arrangements and perceived 'oligopolies' that persist for another 6 months, the generic company was able to set the price of the generic at 70% of the patented price for an additional 6 months," Kantarjian said. "The yearly cost of imatinib is around $130,000, so the generic cost will be about $90,000, which is what the patented drug cost us just 2 years ago. Moreover, the effective additional 1 year of high drug price extension will cost the U.S. health care system up to $3 billion for this one drug, and prevent thousands of patients from having access to an affordable drug."

 

NOTE: Generic Gleevec, expected to be priced at a 30% discount to the brand name, was instead priced at only a 10% discount to the brand name price.


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


#3 houtex54

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Posted 19 February 2016 - 03:16 PM

Druker and Kantarjian are right:  Extortion is not too strong of a word to describe the price gouging that drug companies are perpetrating on Americans.  The Congressional committee responsible for drug regulation and approvals is abetting this piracy.  There is little opportunity for direct action - a boycott would be a choice between fighting the drug companies and dying from the disease the over-priced drug is prescribed for.  Competition between different manufactures won't bring down prices either.  The windfall profits reaped by the gouging company are so great that it only amounts to an economic incentive for the competition to align their prices with what the market will bear.  



#4 Buzzm1

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Posted 20 February 2016 - 09:36 PM

Sun expects competition in gGleevec market post exclusivity: Post exclusivity, management believes some players will enter the market given that it is a large opportunity and there a few known companies who have settled their litigation with innovator. Other players could be Apotex (has tentative approval for gGleevec), Dr. Reddy's (is site-transferring) and possibly Teva (has launched gGleevec in around 10 outside US markets). http://bit.ly/1Rf2dlh

 

Note: Both, Apotex and Teva are approved for gGleevec distribution in Canada

Canada Teva Generic Gleevec $6.5K/yr USD


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


#5 chriskuo

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Posted 21 February 2016 - 11:43 PM

Houtex54,

As mentioned before, directing anger at drug companies is a waste of energy. The price of drugs is entirely a POLITICAL problem.
The drug companies provide subsidies to many patients to limit the political outrage. Very few companies in the US operate under price controls.

The drug companies have been successful with their strategy so far and given the platforms of the this year's candidates I would not hold my breath for a change in the near future. The only candidate proposing radical change in health care is a socialist and that brand is not going to fly with the majority of Americans. If you are from Texas, you should do all you can to sabotage your state's contribution to this fiasco.

#6 r06ue1

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Posted 22 February 2016 - 06:27 AM

Politicians are on the payola of the drug companies, if they don't do what they are told, they don't get re-elected.  

Drug company execs are held accountable by the board and shareholders, if they don't do what they are told then the board finds someone who will.  

 

So who really is to blame?  Everyone wants a nice fat 401k, shares that increase in price not decrease and bigger dividends every quarter.  The entire system is engineered in such a way as to lead everyone to Hell.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#7 Kali

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Posted 22 February 2016 - 03:01 PM

We get diagnosed with a serious disease due to no fault of our own and become a moneymaking machine for all of the "theys" who are in the profiteering racket.

Regardless of who "they" are who enable the profiteering, it amazes me that "they" can sleep at night with a clear conscience.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%


#8 Kali

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Posted 22 February 2016 - 03:15 PM

Regardless of this tragic financial issue, I am grateful for the researchers who pioneered the development of meds that help us. I hope the cessation trials lead to success and I still hope the researchers find a cure.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%


#9 Kali

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Posted 22 February 2016 - 03:16 PM

Regardless of this tragic financial issue, I am grateful for the researchers who pioneered the development of meds that help us. I hope the cessation trials lead to success and I still hope the researchers find a cure.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%


#10 Kali

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Posted 22 February 2016 - 03:22 PM

Regardless of this tragic financial issue, I am grateful for the researchers who pioneered the development of meds that help us. I hope the cessation trials lead to success and I still hope the researchers find a cure.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%


#11 Buzzm1

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Posted 22 February 2016 - 07:23 PM

When I was first suspected of having CML in late October, 2009, I priced Novartis's Gleevec at $39,000/yr.

 

By the time of CML BMB confirmation in early February, 2010, Novartis had already increased the price of Gleevec to $43,000/yr.

 

Since that time, Novartis, for the most part, has increased the price of Gleevec twice a year, in February and then again in August, approximately 10% each time.

 

From a $24,000/yr. initial price when Novartis's Gleevec was first introduced in 2001, to $132,000/yr. in 2015.  It isn't as if Novartis needed to recoup its investment.  R&D costs for Gleevec http://keionline.org/node/1697  It's outright greed by a slimy Pharmaceutical company.

 

Then with collusion between Novartis and Sun Pharma http://bit.ly/1T2E6ty generic Gleevec was introduced on Feb. 1, 2016 at $124,000/yr., more than the price of Gleevec in February, 2015.

 

There ought to be a law.   Martin Shkrelli has absolutely nothing on Novartis, and Sun Pharmaceuticals, for that matter.  

 

Imatinib Cost/yr. USD

U.S. Gleevec $132K
U.S. Generic $124K
Canada Gleevec $46K
Canada Generic $6.5K
 

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


#12 Buzzm1

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Posted 22 February 2016 - 07:45 PM

Imatinib Cost/yr. USD

U.S. Gleevec $132K
U.S. Generic $119K
Canada Gleevec $46K
Canada Generic $6.5K
 
I'll be sending the above to each member of the following committees:
 

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


#13 rcase13

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Posted 22 February 2016 - 08:05 PM

I commend you on your efforts. I just wish it would amount to something but our entire infrastructure is based on this greed. To change it would mean changing the fabric of our country. Too many people profit from it for anything to change. Our current president's entire presidency was based on changing that greed. I honestly think he tried but we all know the power of change in this country rest almost totally with the corporation's.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#14 Buzzm1

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Posted 23 February 2016 - 10:29 AM

I emailed Dr. Kantarjian the above and received this short note back:
 
I agree with you. I have written on this and will continue to do so. 
Can you help get more signatures on the petition in " change. Org"?
 
Protest High Cancer Drug Prices so all Patients with Cancer have Access to Affordable Drugs to Save their Lives

https://www.change.o...ave-their-lives


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


#15 SUE

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Posted 23 February 2016 - 01:11 PM

Buzz,

 

I signed the petition, and I also emailed my senator, Mark Kirk.  Since I had to choose one topic in the email I chose Medicare, and asked him to do everything in his power to allow Medicare to negotiate prices with pharmaceutical companies.

 

Will it do any good?  Who knows?? 

 

But this is a very strange political year, so maybe it will help.

 

Sue


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#16 MarCap73

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Posted 23 February 2016 - 01:26 PM

 

Protest High Cancer Drug Prices so all Patients with Cancer have Access to Affordable Drugs to Save their Lives

https://www.change.o...ave-their-lives

 

 

 

Awesome!  Thanks for the link Buzz.  I am emailing this to family and friends!


Dx: 11/2015

Sprycel: 100mg

 

May-17: 0.0095% IS

Aug-17: 0.0048% IS

Nov-17: 0.0066% IS

 

 


#17 Buzzm1

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Posted 23 February 2016 - 09:39 PM

Buzz,

 

I signed the petition, and I also emailed my senator, Mark Kirk.  Since I had to choose one topic in the email I chose Medicare, and asked him to do everything in his power to allow Medicare to negotiate prices with pharmaceutical companies.

 

Will it do any good?  Who knows?? 

 

But this is a very strange political year, so maybe it will help.

 

Sue

thanks Sue ... Mark Kirk is up for re-election this year ... one of the most likely to lose his seat


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


#18 Buzzm1

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Posted 23 February 2016 - 10:03 PM

Awesome!  Thanks for the link Buzz.  I am emailing this to family and friends!

Thanks MarCap, we can all help to make a difference.  


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

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#19 r06ue1

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Posted 24 February 2016 - 06:32 AM

People have been trying to change the system from within the system for decades, has it gotten better or worse in all that time?  ;)


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#20 chriskuo

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Posted 24 February 2016 - 02:16 PM

I agree. If you live in Illinois, the most effective thing you can do is vote Kirk out of office. His seat is in the path of getting a more responsive Senate.




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