Advanced Member
Posted 15 March 2016 - 08:55 AM
Ahh, the good ole days of the Robber Barons, did they ever "really" leave us?
The root of the problem is money (yes, the true root of all evil); it is an outdated mode of transaction in a world where everything can be provided to everyone and is only used today to prop the few up on the shoulders of the many and social control.
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
Advanced Member
Posted 15 March 2016 - 11:58 AM
Well put.
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.
Advanced Member
Posted 15 March 2016 - 09:41 PM
I'm currently unemployed and am on DH's insurance. I started on Tasigna and have done well with it since diagnosis (12/2013), achieving a complete molecular response within 3 months. I called his insurance company/pharmacy yesterday to check the "patient pays" cost on Tasigna and was told it isn't covered, however, you can file an appeal to see if it will be approved. I'm sure it would likely be approved after filing an appeal. So, I asked about the patient co-pay of all the TKIs and here is the breakdown for our particular insurance plan:
All of these after a $100 yearly deductible:
Tasigna $300/84 day supply
Gleevec $0/30-day supply for generic (doesn't sound right to me, but that is what I was told)
Gleevec $25/90-day for generic
Sprycel $300/90-day supply
Bosulif $150/90-day supply
My doctor mentioned at my last visit, he would not want to change me from Tasigna to another drug as it is working very well for me and the fact that if at some point Tasigna stopped working for me, there are not too many other drugs to try.
Advanced Member
Posted 16 March 2016 - 12:29 AM
tiredblood,
It is also important what the maximum out-of-pocket prescription expense is on your insurance.
Have you contacted Novartis about getting their copay assistance card? The drug manufacturers are generally pretty happy to subsidize copays of people with commercial (not government) insurance, in order to keep patients on their drug and keep the insurance money rolling in.
Advanced Member
Posted 16 March 2016 - 12:31 AM
rcase13,
it is best to be political if you have any interest in Social Security, Medicare, or health care as the people who are political will take advantage of those who are non-political.
Advanced Member
Posted 16 March 2016 - 10:59 PM
tiredblood,
It is also important what the maximum out-of-pocket prescription expense is on your insurance.
Have you contacted Novartis about getting their copay assistance card? The drug manufacturers are generally pretty happy to subsidize copays of people with commercial (not government) insurance, in order to keep patients on their drug and keep the insurance money rolling in.
I have used their copay assistance. I'm not sure when it expires though. I don't have a physical card as just the numbers were provided for me to give the pharmacy. I noticed a while back that the current card on their site says, "for patients new to Tasigna." Honestly, I feel like my life is centered around the medication in that I have to be sure I can pay for it, and secondly, counting the hours before/after I can eat or take famotidine. Now, if I got paid everytime I counted 1-2-Tasigna (depending on a meal) and 1-2 take famotidine, cost may not be a factor :-P
I will add, that when I started taking in in 12/2013 the "plan paid" was $24,000 and at my last fill, "plan paid" $32,000 on the same insurance contract/plan.
New Member
Posted 16 March 2016 - 11:37 PM
As if we don't have enough to worry about...
What do I do? Well, please don't take offense here, folks, but I have to share this: I'm a Christian. I pray a lot about this issue. I can't destroy my health with worry and anxiety. I just dumped it on the Lord and so far, I've been blessed with emotional, psychological, and spiritual peace about it. I was really wondering where I was going to get help right at the turn of the new year. I started to fall back into the dangerous pattern of fret and worry. Then I said, "Bugger that!" and I prayed again and I let it go.
As of January 1st, 2016, I have Rx assistance... through this year. Thanks, Lord.
I can't worry about "tomorrow." I can't control the future. I have to remain positive, remember who my REAL source is, and believe. It's pretty cool, too.
Think I'd better start praying for a change in how our country's healthcare system is run... about bringing about change in the prices of drugs and the patterns of profit and behavior of the drug companies. Why not? Go big or go home, eh? 
Advanced Member
Posted 17 March 2016 - 12:28 AM
Advanced Member
Posted 17 March 2016 - 03:07 AM
Advanced Member
Posted 07 April 2016 - 01:02 PM
Pricing https://www.rxpricequotes.com
in regards to cutting/splitting tablets http://bit.ly/1oHD09v
Sprycel 30 days
20mg approx. $3,250
50mg approx. $6,500
70mg " "
80mg approx. $11,700
100mg " "
140mg " "
if Rx cost is an issue, the Sprycel 140mg tablet offers the best bang for the buck; cut the tablet into multiple doses ... two 70mg segments, four 35mg segments, or eight 17.5mg segments.
Tasigna 30 days (120 tablets)
150mg approx. $12,000
200mg " "
If you are on 600mg/day; buy the 200 and get 40 days for the same price as 30 days; 9 monthly Rx fills versus 12 .
Bosulif 30 days
100mg approx. $3,100
500mg approx. $12,400
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
Advanced Member
Posted 07 April 2016 - 01:18 PM
I just tweeted:
Imatinib Generic Gleevec Cost/yr. USD
Senate Health, (Education, Labor, and Pensions) Committee http://bit.ly/11EEmWL
House Oversight and Government Reform Committee http://bit.ly/1L7Qek9
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
Advanced Member
Posted 07 April 2016 - 09:35 PM
Rx for Outrageous Drug Prices: Heal Our Democracy http://huff.to/22diJWe
Apart from the weapons makers, Big Pharma may be the most government-dependent industry in America.
That's why Big Pharma spends more on lobbying than any other industry, by far. In 2015, the pharmaceutical companies spent 50 percent more on lobbying than the runner-up industry (insurance). That tracks long-term trends, with Big Pharma spending $3.2 billion on lobbying since 1998, almost 50 percent more than the runner-up insurance companies.
If you're wondering why drug prices are so high, that's the real reason: Big Pharma's political power and influence.
Drug prices are spiking out of control, and the American people want action.
How strongly does the public feel about this? Well, Republican voters say that cutting drug prices is a bigger priority for them than repealing Obamacare. Americans overwhelmingly favor a range of measures to reduce drug prices, including enabling Medicare to negotiate drug prices, more transparency around drug pricing, and outright limits on prices for important medicines.
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
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