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Closing Thoughts on Managing Chronic Myeloid Leukemia


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#1 Buzzm1

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Posted 11 April 2016 - 03:16 PM

Closing Thoughts on Managing Chronic Myeloid Leukemia http://bit.ly/22pxzJk

 

Jorge Cortes, MD: Very good. I think this has been a great discussion, and as you can see, we've reviewed a lot of the different data and I've learned a lot. And every time we discuss these things, I think we all learn a lot and that tells us that not everything about CML is well known. There's still things that are controversial. There's still a lot of things that we need to continue discussing and understand better by listening to each other. And I think that's the value of programs like this. So, just to conclude, I would like to ask each one of you to give me, very briefly, your final thoughts, a final message that you want to give to the physicians out there that are treating patients with CML. I'll start with you, Harry.

 

Harry Erba, MD, PhD: Well, you have three choices now. The second-generation drugs have shown a lower risk of progression with a manageable toxicity profile. I think the important point is whichever one you choose, you optimize adherence and reduce toxicities of any of them by close monitoring of patients. And it's very important to do not only hematologic monitoring, but PCR monitoring at baseline, at three months, and every three months afterward. Try to avoid rapid changes between drugs because of intolerances that could be managed or for a single PCR value that's a little bit out of range or out of whack to what it was before. Make sure you recheck it before you make any big decisions.
- See more at: http://www.onclive.c...h.qDMlOlkg.dpuf


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


#2 Harper3994

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Posted 11 April 2016 - 06:24 PM

Thanks Buzz for bringing us this info to us. It is good to keep up with what the "big guys" are saying. Hope they keep pushing for a cure.

#3 Buzzm1

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Posted 11 April 2016 - 09:44 PM

"generic imatinib is on the way. I would put a word out to the insurance companies who may feel motivated to require generic imatinib as first-line therapy for all patients and only go to second-generation TKIs when they fail. As I said before, I have a zero-tolerance approach in terms of avoiding progression. I think that strategy exposes patients to risk. We don't know that we can salvage patients if they fail on a first-line TKI by going to the second one at that time. I would be very cautious about that."

 

I was thinking the same thing:  In August, as other manufacturers enter the market, we should see the price of generic Imatinib (Gleevec) plummet.  With the large price discrepancy between generic Gleevec, and second generation TKI's, insurance companies will pressure Oncologists to first prescribe generic Gleevec.  


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


#4 Harper3994

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Posted 11 April 2016 - 10:27 PM

I have a new part D insurance this year and my insurance asked for a reauthorization. My doctor sent in require info and I just got a letter today from insurance that they have approved my Tasigna for one year. This was something I was worried about...thought they would require me to switch to Gleevec. Hope the insurance doesn't start telling us what med we have to take.

#5 Buzzm1

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Posted 11 April 2016 - 10:39 PM

I have a new part D insurance this year and my insurance asked for a reauthorization. My doctor sent in require info and I just got a letter today from insurance that they have approved my Tasigna for one year. This was something I was worried about...thought they would require me to switch to Gleevec. Hope the insurance doesn't start telling us what med we have to take.

You are grandfathered in; insurance won't require anyone to change meds; but in August when there is a great disparity in price between generic Gleevec and second generation TKI's, newly diagnosed CML patients may feel the effect.


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


#6 r06ue1

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Posted 12 April 2016 - 05:19 AM

The first death caused by insurance companies due to a patient being prescribed a medication that was not suitable for their treatment, will any insurance CEO or board of directors serve any prison time for 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


#7 rct

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Posted 12 April 2016 - 07:25 AM

I was thinking the same thing:  In August, as other manufacturers enter the market, we should see the price of generic Imatinib (Gleevec) plummet.  With the large price discrepancy between generic Gleevec, and second generation TKI's, insurance companies will pressure Oncologists to first prescribe generic Gleevec.  

 

I was just on the phone yesterday with Caremark getting Mrs Gleevec.  BC/BS Federal Employees.  I had to go through a whole schpiel with the "pharmacist" and all for the generic, and which did I want?

 

Generic costs what Gleevec used to cost, Gleevec went up probably 30%.

 

I'm not complaining, it isn't very expensive for us in the first place, and considering what I pay for BC/BS it shouldn't be.

 

rct



#8 rct

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Posted 12 April 2016 - 07:28 AM

Harry Erba, MD, PhD: ...I think the important point is whichever one you choose, you optimize adherence and reduce toxicities of any of them by close monitoring of patients...

 

 

Docs not wanting people to stop taking drugs and make sure they come to the docs.  Glad I was sitting down for that.

 

rct



#9 Buzzm1

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Posted 12 April 2016 - 08:57 AM

I was just on the phone yesterday with Caremark getting Mrs Gleevec.  BC/BS Federal Employees.  I had to go through a whole schpiel with the "pharmacist" and all for the generic, and which did I want?

 

Generic costs what Gleevec used to cost, Gleevec went up probably 30%.

 

I'm not complaining, it isn't very expensive for us in the first place, and considering what I pay for BC/BS it shouldn't be.

 

rct

The last time I checked Gleevec was at $132K/yr. and the generic was at $124K/yr ... not really that much difference in price ...

As of August 1, Sun Pharma loses its sole proprietorship of the generic and others should enter the market; then there will be a wider disparity in price and more pressure to force Gleevec users over to the generic. Sun Pharma said they captured a 40% market share in their first month with Imatinib mesylate so many have already been switched over to the generic.  With the price of these drugs there isn't any wonder as to why our healthcare costs are so high. Pricing/Splitting Pills


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


#10 rct

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Posted 13 April 2016 - 07:25 AM

The last time I checked Gleevec was at $132K/yr. and the generic was at $124K/yr ... not really that much difference in price ...

 

I'm talking about the prices people pay, not the Tier A or whatever they call it.  Nobody, but nobody, is paying 11 THOU a month for Gleevec, not insurance companies, not anybody.

 

rct



#11 mdszj

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Posted 13 April 2016 - 02:17 PM

The first death caused by insurance companies due to a patient being prescribed a medication that was not suitable for their treatment, will any insurance CEO or board of directors serve any prison time for it?   ;)

 

They will probably serve similar amounts of time in jail to that of the banksters like Goldman Sachs,  JP Morgan, etc. who regularly rip people off any way they possibly can.


dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16


#12 rcase13

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Posted 13 April 2016 - 03:18 PM

They will probably serve similar amounts of time in jail to that of the banksters like Goldman Sachs,  JP Morgan, etc. who regularly rip people off any way they possibly can.

Exactly, they will be fined some amount of money that is significantly lower than their yearly profits and none of that money will ever find it's way to the people that need it most.


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!


#13 tiredblood

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Posted 13 April 2016 - 06:54 PM

"generic imatinib is on the way. I would put a word out to the insurance companies who may feel motivated to require generic imatinib as first-line therapy for all patients and only go to second-generation TKIs when they fail. As I said before, I have a zero-tolerance approach in terms of avoiding progression. I think that strategy exposes patients to risk. We don't know that we can salvage patients if they fail on a first-line TKI by going to the second one at that time. I would be very cautious about that."

 

I was thinking the same thing:  In August, as other manufacturers enter the market, we should see the price of generic Imatinib (Gleevec) plummet.  With the large price discrepancy between generic Gleevec, and second generation TKI's, insurance companies will pressure Oncologists to first prescribe generic Gleevec.  

 

It is pressure on me, the patient. DH has Blue Cross with his company being self-insured. So, the pressure may be coming from his company moreso than the insurance company, I don't know. Gleevec-generic $0/30-day supply, $25/90-day supply, $300/64-day supply of Tasigna.



#14 tiredblood

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Posted 13 April 2016 - 07:00 PM

I have a new part D insurance this year and my insurance asked for a reauthorization. My doctor sent in require info and I just got a letter today from insurance that they have approved my Tasigna for one year. This was something I was worried about...thought they would require me to switch to Gleevec. Hope the insurance doesn't start telling us what med we have to take.

 

All the insurance will tell you is that we're not forcing you to switch to Gleevec. You can still take Tasigna (in my case) and pay x dollars copay. IIRC, I've always had to have pre-authorization and think that most all insurance companies would requiree a PA for specialty drugs. 

 

Prior to going on DHs insurance my cost for Tasigna was going to be $6,000 copay for an 84-day supply. Of course, I would have met my yearly deductible after paying the initial $6,000 copay.  I've since left that job mainly because of the drug coverage. Thankfully, I was able to go down to 1/2 dose and haven't had to get a refill yet until I can get better insurance coverage.






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