what about our tki's aren't they just as life saving as the epipen?
#1
Posted 31 August 2016 - 07:47 AM
Sometimes it's hard not to be angry when I hear things like this. I find my rage getting worse lately. .... I wonder if it's cml or my lack of coping skills,or both. I need help. Not enough of us to make a big stink? Who knows. ...
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#2
Posted 31 August 2016 - 09:14 AM
This subject just pi$$es me off also. I don't know if it is "government oversight" or if people are paid to turn the other cheek. The huge profit margin by the big pharma companies is nothing less than a disgrace of the American society. It shows how money runs the lives of so many while it cause grief and distress to the ones that are in need. There is such a difference in "need" and "want". I want money but I need my meds.... so which do choose? This greed leaves to many of us having to chose whether to live or just survive!!!
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!
#3
Posted 31 August 2016 - 09:19 AM
Isn't that what Capitalism is all about, making a profit (and larger profits every year to keep the shareholders happy)?
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
#4
Posted 31 August 2016 - 03:22 PM
The executives at Mylan will get $77 million in bonuses if they hit certain targets and Epipen is one of their major products.
http://money.cnn.com...id=hp-stack-dom
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
#5
Posted 31 August 2016 - 04:20 PM
The solution lies in greater competition - (see graph below). We need a way to generate faster competition.
Right now, big pharma, and big government create competitive hurdles.
For generics, competition is already driving down cost. But for novel new targeted drugs such as TKI's, the monopoly they enjoy is becoming unaffordable. The solution here lies in shortening patent times, allow cross border sales and regulatory oversight during the patent period.
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"
#6
Posted 31 August 2016 - 05:38 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
#7
Posted 31 August 2016 - 06:14 PM
Hear, hear. Regulation is not anti-capitalist. All human activity, including business and government, requires the oversight and checks and balances that regulation implies.
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.
#8
Posted 01 September 2016 - 12:13 AM
#9
Posted 01 September 2016 - 05:31 AM
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
Posted 01 September 2016 - 06:20 AM
Keynesian economics lead to where we are now, with the idea of government intervention, debt, consumption and bailouts. Where we are now is Crony Capitalism, where economic interests control the government and can do pretty much what they want, when they want. Keynes himself warned against Crony Capitalism but what he failed to see (or live to see) is that his economic theories are exactly what lead to it.
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
#11
Posted 03 September 2016 - 06:45 PM
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)
#12
Posted 06 September 2016 - 02:34 AM
Thatguy,
Using the buzzwords socialism and common decency do not advance the discussion,
May I ask who is paying for your TKI?
Do you call Medicare socialism? Government provides much of the funding, but the providers are mostly private.
VA is an example of a mostly socialist system.
Medicaid and county health care are hybrid systems.
Providing health care is much more complicated than throwing around ill-defined buzzwords.
Capitalism is not successful without reasonable regulations. It is an art and a science in balancing the costs and benefits of regulations.
#13
Posted 06 September 2016 - 08:57 AM
thatguy, hate to burst your bubble there but most innovation has come from government grants to universities, not from private industry. Private industry does contribute, but the really exiting stuff comes from universities working with public and private donations. One such example is the possible CML cure which was developed at the University of Glasgow, not a private corporation, and much of the immunotherapy research going on today is also being done at universities.
Policymakers and corporations alike rely on universities to convert publicly funded science into knowledge and ultimately new products that drive economic growth.
http://www.reuters.c...N0RG0CX20150916
Gleevec paid for itself back in 2004 and the price has risen over 500% since then. The question then becomes, where do all of these huge windfall profits go to? Do they go to research or do they go into someone's coffers? My bet is the later and it is all of us that pay for these huge profits together (everyone with private insurance and also through taxes). The only difference between this system and Socialism is a few people get very rich in this one and it isn't the one's making the discoveries (Scientists) that are getting wealthy.
But not to worry about those huge price increases! With 3D printed medicine on the way, I can see the end of Big Pharma not too far behind.
https://3dprintingin...ight-now-42867/
https://www.theguard...rints-out-drugs
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
#14
Posted 06 September 2016 - 06:32 PM
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
#15
Posted 07 September 2016 - 11:42 AM
Now that three companies (Sun, Teva, and Apotex) are marketing generic Imatinib/Gleevec in the U.S. I am hoping that anyone on the generic will post the price and manufacturer. As posted previously, Novartis has recently increased the price of Gleevec to $138,000/yr. from $132,000/yr.. Thanks in advance.
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#16
Posted 09 September 2016 - 12:46 AM
Thatguy,
Using the buzzwords socialism and common decency do not advance the discussion,
May I ask who is paying for your TKI?
Do you call Medicare socialism? Government provides much of the funding, but the providers are mostly private.
VA is an example of a mostly socialist system.
Medicaid and county health care are hybrid systems.
Providing health care is much more complicated than throwing around ill-defined buzzwords.
Capitalism is not successful without reasonable regulations. It is an art and a science in balancing the costs and benefits of regulations.
I had a much lengthier reply, that I've since deleted. All I will say is, the solution isn't larger government, or more government intrusion, it's the removal of laws which restrict medicine availability, and increase operational costs. I Don't care to waste any more time, nor emotions on the matter, when opinions won't be swayed.
Note: I didn't know "socialism" and "common decency" were buzz-words. That's intriguing.
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)
#17
Posted 10 September 2016 - 11:43 PM
June, 2016 Gleevec (Novartis). Walgreen's Specialty billed amount: $12,146.92. Premera BCBS paid $9,851.15
July, 2016 Imatinib (Sun Pharm). Walgreen's Specialty billed amount: $11,839.77. Premera BCBS paid $9.602.05
August, 2016 Imatinib (Apotex Corp). Walgreen's Specialty billed amount: $11,839.77. Premera BCBS paid $9,602.05
After almost 3 years, I received my second PCRU result. The first one was last December. The next two were .015 and .024. I am praying the cost will come down substantially very soon. I feel like I am single-handedly bankrupting Premera. I do not like depending on others to pay for my meds.
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
.015 6/2017
PCRU - 9/2017
God is in control. I will trust Him.
#18
Posted 11 September 2016 - 01:01 AM
Buzz,
June, 2016 Gleevec (Novartis). Walgreen's Specialty billed amount: $12,146.92. Premera BCBS paid $9,851.15
July, 2016 Imatinib (Sun Pharm). Walgreen's Specialty billed amount: $11,839.77. Premera BCBS paid $9.602.05
August, 2016 Imatinib (Apotex Corp). Walgreen's Specialty billed amount: $11,839.77. Premera BCBS paid $9,602.05
After almost 3 years, I received my second PCRU result. The first one was last December. The next two were .015 and .024. I am praying the cost will come down substantially very soon. I feel like I am single-handedly bankrupting Premera. I do not like depending on others to pay for my meds.
Silvertabby, thank you very much for that information ... the July Sun and August Apotex prices, being exactly the same, show collusion between Sun and Apotex on the price of generic Imatinib ...
Assuming that the prices shown are for 30 X 400mg, the generic price of $11,839.77 calculates out to $144,050/yr.
I'm a little confused at this point because the price I obtained a few weeks ago from Kaiser for Novartis Gleevec 30 X 400mg was $11,371 which calculates out to $138,347/yr. ... the $12,146.92 that you were charged in June calculates out to $147,788/yr.
Glad to hear that you have hit PCRU ... it's not unusual to bounce in and out of PCRU at first .. did the same thing myself ... Good Luck to you and thanks again for the pricing information. I hate the thought of the greedy Big PhRMA companies raking us over the coals ...
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#19
Posted 11 September 2016 - 11:53 AM
I tweeted the 22 members of the Senate Health Committee http://bit.ly/11EEmWL :
Despite three generics in the market, Novartis continues to increase the price of Gleevec, and the generics are too #CML @name
Please look into pricing collusion of Imatinib/Gleevec between Novartis, and the generics by Sun, Teva, and Apotex #CML @name
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