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Is anyone else freaking out a little about Trumpcare?


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#21 jamesm

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Posted 11 May 2017 - 12:42 PM

James,

Did you check the marketplace plans to see what the cap was on total out-of-pocket costs were?
The monthly expense may start out expensive, but with a cap, the total cost to you may not be as bad as you think.
As mentioned, you are likely to qualify for copay assistance as well.

 

I thought the same thing, but I called one of the providers (Pacific Source) to ask about the total out-of-pocket and was told that prescription coverage is separate from medical coverage and does not have a total out-of-pocket cap. :(

 

I will call around and see if there are ANY providers/plans in the marketplace that offer a sane copay.

 

I've been using copay assistance through Novartis for some years now and it is great! Problem is, it only covers up to $150 towards the copay. :( 



#22 Buzzm1

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Posted 11 May 2017 - 01:06 PM

I've been bouncing around on the edge of detection pretty much since being on Tasigna. I usually test once every 3 months and sometimes it's undetectable and sometimes it's barely detectable. Been like this for years.

what dosage of Tasigna are you on?


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


#23 jamesm

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Posted 11 May 2017 - 01:10 PM

what dosage of Tasigna are you on?

 

200mg



#24 Buzzm1

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Posted 11 May 2017 - 01:39 PM

200mg

Glad to see you are on a lowered dose jamesm.  As most here have discovered, when CML is at a consistently low level long term, a low TKI dose is usually sufficient for maintenance.


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


#25 jamesm

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Posted 11 May 2017 - 05:04 PM

Glad to see you are on a lowered dose jamesm.  As most here have discovered, when CML is at a consistently low level long term, a low TKI dose is usually sufficient for maintenance.

 

I was mistaken on the dosage. I'm on 800mg / day (4 x 200mg capsules). I've had conversations with my doctor about people who went off the medication entirely after a long run of zero detection labs and stayed PCRU. While I haven't had any nasty side effects, I often wonder how would I'd feel having never been on the drug. What's from the drug and what's from getting older.



#26 Buzzm1

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Posted 11 May 2017 - 07:12 PM

I was mistaken on the dosage. I'm on 800mg / day (4 x 200mg capsules). I've had conversations with my doctor about people who went off the medication entirely after a long run of zero detection labs and stayed PCRU. While I haven't had any nasty side effects, I often wonder how would I'd feel having never been on the drug. What's from the drug and what's from getting older.

jamesm, you've been taking Tasigna 800mg (high dose) for a lengthy period of time and you are still bouncing between PCRU and weak positives; it might be time for you to either consider incrementally lowering your Tasigna dosage as a high dosage shouldn't be necessary to maintain that level, or switch to a lowered dose of another TKI in the hope that it will produce the desired constant PCRU.  There has to be a better way; a consultation might be in order.  That's my opinion only; I'm not a fan of higher dosage for an extended period of time.  TKIs are toxic drugs and the less we take long term the better off we are going to be.


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


#27 chriskuo

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Posted 12 May 2017 - 12:49 AM

James's,

My understanding is that the max out-of-pocket is $7,150, medical and prescription combined.
I would check with your state exchange if the answer from your provider is not satisfactory.

Your exchange should have tools that allow you to estimate drug costs under the available plans.

#28 jamesm

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Posted 12 May 2017 - 10:15 AM

James's,

My understanding is that the max out-of-pocket is $7,150, medical and prescription combined.
I would check with your state exchange if the answer from your provider is not satisfactory.

Your exchange should have tools that allow you to estimate drug costs under the available plans.

 

I'm going to make a bunch of phone calls today to figure this all out. I'll start a new post with my findings. Thanks.



#29 JPD

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Posted 22 June 2017 - 04:02 PM

So it seems now is a good time to panic. 

 

https://www.indivisi...ing-conditions/

 

I also dont know whether or not lifetime or yearly limits are being reinstated.  Still looking...


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#30 Jan0080

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Posted 22 June 2017 - 06:01 PM

The only ones of us that need to worry are those with a pre-existing condition such as CML.  The coverage will vary from state to state. 

 

The draconian effects will be so bad that if this becomes law it won't last for long., we just need to last longer.

 

I just sent 16 emails to the legislative assistants of the most probable swing votes.  Use JPD's link, under  Resources go to "Impact of TrumpCare by State"  all of the Senator's legislative assistants have their e-mail listed.

 

Using the subject "Chronic Myeloid Leukemia"  I wrote :

 

My medicine costs over $100,000 per year.  I didn't get CML because of a life style choice.  Insurance is supposed to cover those with catastrophic problems.  This new law does nothing to fix the rampant over charging permitted by the orphan drug law. 


Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!

Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.

#31 JPD

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Posted 22 June 2017 - 07:19 PM

The only ones of us that need to worry are those with a pre-existing condition such as CML.  The coverage will vary from state to state. 

 

The draconian effects will be so bad that if this becomes law it won't last for long., we just need to last longer.

 

I just sent 16 emails to the legislative assistants of the most probable swing votes.  Use JPD's link, under  Resources go to "Impact of TrumpCare by State"  all of the Senator's legislative assistants have their e-mail listed.

 

Using the subject "Chronic Myeloid Leukemia"  I wrote :

 

My medicine costs over $100,000 per year.  I didn't get CML because of a life style choice.  Insurance is supposed to cover those with catastrophic problems.  This new law does nothing to fix the rampant over charging permitted by the orphan drug law. 

Good one.  And MAKE CALLS to YOUR reps.  Calls work waaaay better than emails (though those are great too).  ONLY call your Reps.  Even if they are solid RED.  If your Sens are Dems - call them and ask them to fight like hell.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#32 JPD

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Posted 22 June 2017 - 07:21 PM

So it seems now is a good time to panic. 

 

https://www.indivisi...ing-conditions/

 

I also dont know whether or not lifetime or yearly limits are being reinstated.  Still looking...

Right - just so everyone knows - and doesnt want to click on the link to find out.  This bill will allow us to not be DENIED for coverage but Im not sure it wont allow insurers to charge us whatever they want for it - and I KNOW that they are scrubbing the Essential Health Benefits which would allow insurers to create plans that dont pay for meds, lab costs, etc...  Its a political shuck and jive to say they are protecting people with PEC.  


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#33 JPD

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Posted 22 June 2017 - 07:49 PM

If they impose lifetime caps - I could run out of coverage in 6.5 years (at a cap of 1m).


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#34 jmoorhou

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Posted 22 June 2017 - 07:55 PM

Are you in a state that has Kaiser ( I don't think you are ), it's a very humane healthcare system in the west.  I pay $15.00a month for Gleevec.


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#35 Buzzm1

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Posted 22 June 2017 - 09:04 PM

Shifting Dollars From Poor to Rich Is a Key Part of the Senate Health Bill 

 

The Affordable Care Act gave health insurance to millions of Americans by shifting resources from the wealthy to the poor and by moving oversight from states to the federal government. The Senate bill introduced Thursday pushes back forcefully on both dimensions.

 
The bill is aligned with long-held Republican values, advancing states' rights and paring back growing entitlement programs, while freeing individuals from requirements that they have insurance and emphasizing personal responsibility. Obamacare raised taxes on high earners and the health care industry, and essentially redistributed that income — in the form of health insurance or insurance subsidies — to many of the groups that have fared poorly over the last few decades.

 

Read more: https://t.co/FmO8waj2G8


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


#36 Buzzm1

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Posted 23 June 2017 - 05:48 PM

7 Huge Tax Breaks in the Senate GOP Health Care Plan

 
1. Repeal of surtax on investment income, worth $222.8 billion over 10 years. This is the granddaddy of the Obamacare taxes directly aimed at wealthier Americans and investors. It created a new, 3.8 percent tax on investment income in households making at least $250,000 a year or for single people earning at least $200,000.
 
2. Repeal of health insurance tax, worth $130 billion over 10 years. This tax is directly levied on the health insurance industry and is collected annually by the Treasury and is divided among insurers based on the premiums they collect each year. While insurers have complained about the tax, they have largely passed it along to small businesses that provide health care to their employers and middle class families and others in the form of higher premiums.
 
3. Repeal the hike in Medicare payroll tax, worth $123 billion over 10 years. The Affordable Care Act imposes an additional 0.9 percent payroll tax on individuals making $200,000 or couples making more than $250,000. Repealing the law provides a significant tax break for upper-income Americans.
 
4. Repeal of excise tax on comprehensive health insurance plans, worth $32 billion over 10 years. The proposed 40 percent excise tax on employer-provided "Cadillac" health insurance plans was scheduled to take effect in 2020. The steep tax would target top-of-the-line health insurance plans exceeding $10,200 for individuals and $27,500 for families. The Kaiser Family Foundation projected that the Cadillac tax would hit 26 percent of employer provided plan beginning in 2020 and rise to 42 percent by 2028.
 
5. Repeal of the "black liquor" tax hike, worth $23.6 billion over 10 years. This is a tax increase on a type of bio-fuel that is the byproduct of wood pulp manufacturing. The tax break would benefit paper mills.
 
6. Repeal tax on medical device manufacturers, worth $20 billion over the next 10 years. The new 2.3 percent excise tax on all sales of medical devices was temporarily postponed and set to take effect in 2018. Manufacturers have strongly lobbied against the tax, saying it would be serious blow to businesses and consumers, although the tax does not apply to eyeglasses, contact lenses, hearing aids, wheel chairs or other medical devices the public generally buys at retail for individual use.
 
7. Repeal "medicine cabinet tax" on HSAs and FSAs, worth $6.7 billion over 10 years. Under Obamacare, the 20.2 million Americans with Health Savings Accounts and the 30 million or so covered by a Flexible Spending Account are no longer able to purchase over-the-counter medicines such as cold, cough and allergy medicine using these pre-tax account funds.
 
 
tax cuts for the wealthy will greatly increase the deficit and debt ....
 
FY2017 federal revenues, previously forecast by the CBO to grow at 3%, are instead growing at less than 1% http://bit.ly/2rawNnv...
 
Federal revenues are $60 billion to $70 billion smaller for the fiscal year to date than CBO expected http://bit.ly/2rawNnv
 
The federal budget deficit was $432 billion for the first eight months of fiscal year 2017, the Congressional Budget Office estimates—$26 billion more than the shortfall recorded during the same span last year. But that result was affected by shifts in 2016 in the timing of certain payments that otherwise would have been due on a weekend. If not for those shifts, the deficit for the first eight months of fiscal year 2017 would have been $68 billion larger than the one recorded for the same period last year. https://www.cbo.gov/publication/52791
 
CBO Monthly Budget Review May 2017 http://bit.ly/2rawNnv
Federal tax revenues (billions)
FY2017 thru May (29) as compared to May FY2016
FY2016 3,267 (18) deficit $587 billion
FY2015 3,249 (228) deficit $439 billion
FY2014 3,021 (246)
FY2013 2,775 (325)
FY2012 2,450 ...
 
CBO: Federal corporate tax revenues through May and for Fiscal Year (billions)
FY2017 $167 $310 est.
FY2016 $162 $300 (9.18% of total federal revenues)
FY2015 $183 $344 (10.59% of total federal revenues)
 
Corporations used to pay 30% of all federal taxes http://on.fb.me/1VCFdhd...

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


#37 rcase13

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Posted 27 June 2017 - 02:33 PM

yeah the annual and lifetime limits has us freaked out. We are prepared to move to a blue state.


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!


#38 tadly

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Posted 27 June 2017 - 07:52 PM

I live in California.  The state legislature here thinks it's doable to have a lower-cost, single-payer health insurance for residents, even with the federal government otherwise greatly increasing costs for those with pre-existing conditions, etc.  It was in the news yesterday because the vote on the state law got stalled.  The cost of living is very high here but might not look bad if single-payer is implemented.



#39 chriskuo

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Posted 28 June 2017 - 01:55 AM

Single payer in a single state is financially infeasible. It would require major Federal waivers and HUGE Federal funding
(which pays for most of Medi-Cal and Medicare). The current powers that be in Washington will have nothing to do with single payer.

It will require a new regime in Washington to focus on stripping cost out of health care delivery. Otherwise, it is just a matter of who gets stuck with the cost.
The current proposed plan sticks much more of the cost on individuals who can least afford it.

#40 Kali

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Posted 28 June 2017 - 08:55 AM

Chriskuo,

Do you know why the government took away negotiating powers from Medicare on prescription drugs and won't restore their power to negotiate?

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%





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