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#1 CallMeLucky

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Posted 09 August 2011 - 11:23 AM

Would sure be nice to eliminate some of the waiting anxiety.  Imagine walking in to see your doctor, getting your blood drawn, and at the same time your CBC comes back, so does your PCR......

http://www.prnewswir...-127295248.html

SUNNYVALE, Calif., Aug.  9, 2011 /PRNewswire/ -- Cepheid (NASDAQ: CPHD) today announced the release of an updated Xpert® BCR-ABL  Monitor test, now reporting results to the International Scale. The test is  being released as a European CE IVD Mark product under the European Directive on  In Vitro Diagnostic Medical Devices. The test, which runs on Cepheid's GeneXpert® System, detects the BCR-ABL mRNA transcript in the peripheral blood of patients with  Chronic Myelogenous Leukemia (CML) in about two hours.

"Our work in the CML area is the first of several initiatives we are  developing as we extend the GeneXpert System test menu into a new line of  molecular diagnostic oncology products," said John  Bishop, Cepheid's Chief Executive Officer. "The updated Xpert BCR-ABL  Monitor test incorporates a fully validated test-specific conversion factor  aligned to the International Scale — an important factor in helping to maintain  consistency within and between laboratories to more accurately monitor patient  progression toward remission."

CML is a cancer of the myeloid lineage of leukocytes (white blood cells) that  is characterized by the presence of the "Philadelphia Chromosome," a reciprocal  translocation of chromosomes 9 and 22 that results in the generation of the  BCR-ABL fusion gene. The BCR-ABL protein functions as a constitutively activated  Tyrosine Kinase that drives the proliferation of immature myeloid cells.

If untreated, CML progresses within several years from a chronic phase to  accelerated and blastic phases, with survival in the blastic phase measured in  months. The introduction of the targeted Tyrosine Kinase Inhibitors (TKIs)  imatinib, dasatanib and nilotinib has had a profound impact on the survival of  patients with CML. Since their introduction, CML has been transformed into a  chronic condition with good long-term prognosis. Monitoring the levels of  BCR-ABL mRNA transcript in the blood of CML patients on TKIs using real-time  quantitative PCR has become standard of care in the management of CML. The goal  of treatment is to reach a major molecular response (MMR), defined as a 3 log  reduction (< 0.1%) in BCR-ABL mRNA levels from a standardized baseline  defined by the International Scale(1,2). In order to accurately assess treatment  response, it is essential that variability in testing methodologies be tightly  controlled. This has resulted in substantial efforts to standardize BCR-ABL  molecular testing across laboratories by introducing an International  Scale(3).

The updated Xpert BCR-ABL Monitor is now available as a CE IVD Mark product.  For more information, visit www.cepheidinternational.com for Cepheid's complete  menu of CE IVD Xpert tests.

About Cepheid

Based in Sunnyvale, Calif., Cepheid (Nasdaq:  CPHD) is a leading molecular diagnostics company that is  dedicated to improving healthcare by developing, manufacturing, and marketing  accurate yet easy-to-use molecular systems and tests. By automating highly  complex and time-consuming manual procedures, the company's solutions deliver a  better way for institutions of any size to perform sophisticated genetic testing  for organisms and genetic-based diseases. Through its strong molecular biology  capabilities, the company is focusing on those applications where accurate,  rapid, and actionable test results are needed most, such as managing infectious  diseases and cancer. For more information, visit http://www.cepheid.com.

This press release contains forward-looking statements that are not purely  historical regarding Cepheid's or its management's intentions, beliefs,  expectations and strategies for the future, including those relating to planned  new product releases, product performance and future market opportunities.  Because such statements deal with future events, they are subject to various  risks and uncertainties, and actual results could differ materially from the  company's current expectations. Factors that could cause actual results to  differ materially include risks and uncertainties such as those relating to:  unforeseen manufacturing problems; uncertainties in the regulatory review  process for new products; regulatory developments and practices regarding  testing protocols; customer and market acceptance of our products; the failure  of products to perform as fast or as accurately as expected, whether due to  manufacturing errors, defects or otherwise; the impact of competitive products  and pricing; potentially lengthy sales cycles in some markets; reimbursement  rates for the products; and underlying market conditions worldwide. Readers  should also refer to the section entitled "Risk Factors" in Cepheid's Annual  Report on Form 10-K for 2010 and in its most recent quarterly report on Form  10-Q, each filed with the Securities and Exchange Commission.

All forward-looking statements and reasons why results might differ included  in this release are made as of the date of this press release, based on  information currently available to Cepheid, and Cepheid assumes no obligation to  update any such forward-looking statement or reasons why results might  differ.

References

  1. NCCN Guidelines™ version 2.2011 Chronic Myelogenous Leukemia
  2. Baccarani M et.al. Chronic myeloid leukemia: an update of concepts and  management recommendations of European LeukemiaNet. J Clin Oncol. 2009 Dec  10;27(35):6041-51. Epub 2009 Nov
  3. Cayuela JM., Cartridge-based automated BCR-ABL1 mRNA quantification: solving  the issues of standardization, at what cost? Haematologica. 2011  May;96(5):664-71. Epub 2011 Feb 17




CONTACTS:





For Media  Inquiries:

For Cepheid Investor  Inquiries:




Jared Tipton

Cepheid Corporate  Communications

408-400-8377

communications@cepheid.com

Jacquie Ross

Cepheid Investor Relations

408-400-8329

investor.relations@cepheid.com









SOURCE Cepheid

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Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#2 Trey

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Posted 09 August 2011 - 04:36 PM

All the PCR machines can do a PCR in a relatively short time, some as short as 40 minutes.  PCRs are done within hours of the sample being recieved by the lab.  Then the paperwork trail takes the rest of the time (generally a couple weeks) as the results sit in various In-Boxes.  That is the problem which needs to be resolved.

The real news in this is that Cepheid is now aligning its PCR equipment to report immediately in International Scale, so it does not require each individual lab to create its own IS conversion factor, which has been one of the problems with the PCR IS scale.  So this may improve the IS scale.  But other PCR manufacturers are reluctant to do the same, since they question the IS methodology.



#3 CallMeLucky

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Posted 10 August 2011 - 09:13 AM

ahh, so you're saying the problem is bureaucracy and not technology, go figure!

Thanks for the information


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#4 scuba

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Posted 10 August 2011 - 02:39 PM

That explains why I received my PCR from M.D. Anderson so fast (5 days) and am still waiting for the FISH (taken over two weeks ago).


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"


#5 pamsouth

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Posted 21 October 2011 - 08:38 PM

I am a little exasperated in that I wrote a long post and got kicked out, error said not allowed!

So will make long story short.  DX with CML 2005 on Gleevec.  My last PCR went up 23,45%, from undetected.  Doctor did another blood redraw and (I have not gotten back results) wants me to switch to Tasignna.  Oncologist also approached me last year about switching to Tasignna.

I decided to do my own research and found from the discussion board, that LABS were going to a new international numeric scale.

I called BioReference and yes they went to the new international numberic scale.

I call my prescription pharmacy Medco my Nov 1, 2011 shipment of Gleevec 400 mg, 30 pills is $5412.36.

Tasingna is $1,832.96 for 200 mg capsule.  Patients are put on either 600 mg or 800 mg. a day.  If you do the math for 800 mg for 1 day that would be $7,331.84.  For a 30 day supply that would be $219, 955.52.  The numbers were so unbelievable that I talked to at least 3 different people making sure I got it right.

I called my doctor office and told the receptionist of my research and that I would not be changing over to Tasignna.

I am very disappointed that the drug maker/laboratory did not report this change to the international numeric scale, to my doctor, or why did my doctor not do her research.  There are many other CML patients complaining of the same thing.  Am I her only CML patient.  Does the drug companies and labs not keep her informed?  My doctor had also talked to me last year about changing over to Tasingna.

I did some more research and it is my understanding that the federal government has reduced the funding for drug research and many of the expensive drug patents  will be expiring.  I believe that Gleevec expires in 2013 or 2015 and Tasingna patent came out in 2007 and I do not know the expiration.

I think this is a terrible way to scare cancer patients into changing over to another drug.  How in the world can our nation sustain these health care/drug cost?  The first year I was on Gleevec I was terrible sick.  The doctor said all I would have to do is go off gleevec for 2 weeks and take a EKG before taking Tasingna and another one two months later, but other then that I would go on just like nothing else happened.  Now how in the world does anyone know how you will react to a new drug especially a very potent cancer drug.  My insurance does not pay for office visit.  It does pay for my visit to my ocologist ever 3 or 4 months but it is always rejected and refiled and insurance is very reluctant to pay it, because of coding for follow up, it is complicated.

From a dishearted CML survivor, Pam

Dishearten CML Survivor Pam


PamSouth


#6 hannibellemo

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Posted 21 October 2011 - 09:00 PM

Pam,

Take heart, Tasigna is expensive but not that expensive! Sprycel is around $8,000 per month and Tasigna is in the same ballpark. They were quoting you the price for 200mg. for the month - not per pill. Why they would do that is beyond me.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#7 Trey

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Posted 21 October 2011 - 09:19 PM

The PCR confusion is a major source of concern.  I wrote an article about this issue for an online journal:

http://www.cancernet...e/10165/1570782



#8 pamsouth

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Posted 21 October 2011 - 10:30 PM

PCR labs, confusing to say the least.  I was DX in 2005 and was very sick the first year.  Actually it was my platelets that were 2 million and my granulates off, not so high a white count.

I even flew down to MD ANDERSON Houston TX twice. MD ANDERSON CANCER HOUSTON TX. does their own in house labs.  I understand when the blood is sent away especially for a sensitive test like a PCR there is much room for error, or tainted blood, as it is handle much, and reprocessed, or amplified, etc.

I was very sick the first year taking high doses of Hydroxrea and then on to Gleevec.  At least for the past ten years my CBC are nearly perfect and my fish is usually 92 % to 100 % normal and my PCR have been undetectable.  All of a sudden the PCR goes up to approx 24 % high from undetectable.  

I think it very unfair to scare the CML patients and cause such anxiety that the cancer is out of control, when I did my research, calling BioReference GenPath, they have changed over to (metric) new international numeric scale.  It saddens me to think my oncologist would not be aware or informed by the drug company or lab.  However my doctor also approached me a year ago about going to a newer drug.

Why change from Gleevec when over 80 % of the patients are still alive since 1997,  I have been so elated that my labs are so good, then shaken to think the cancer cells have mutated and out of control, when in fact nothing has changed regarding my leukemia cells.  How unfair.  I don't think I would ever trust the health care system, period.  I have taken care of my mother the last 3 year of her life, my husband for two month last year, thought I was going to have to put him in a nursing home, when it turned out he was a allergic to the medicine.  My son who was in the hospital for 88 days.  I have seen so many mistakes.  Even the teams of doctors argue within themselves.  I can't believe the mistake that even the hhighly trained nurses make in the med's/sloppy.  What has happened to our countries health care system. Maybe just mor people are being edcuated and becoming aware. 

Me thinks because the feds have cut the research money and the patents are about to expire the drug compaines are looking for ways to come up with the money, for their new patients.

I don't know how the average person can keep paying the ever rising cost of health care.  Many people are losing their jobs because companies can not afford to pay the health care.

I even spoke to the Medco Pharmacy about the cost, she was so confused, said she thought a package of 28 capsule of Tasingna, 200 mg was $81,000.00.  She transferred me back to customer service who quoted the same price as the first, $1,8032.96 200mg for 1 capsule.  I believe these conversations were tape recorded.  I repeated what she said &  I wrote it down as we spoke.  It seems that from Medco, to the Lab, to the Doctor, are all confused, or want to confuse the patient !!!  My doctor didn't even seem to care about the anxiety, or have the time to think wow i wonder how many other patients are having the same situation, red alert, or perhaps I am her only CML patient.

I feel very forunte to have the internet as a tool to confer with others and educated myself.   


PamSouth


#9 pamsouth

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Posted 21 October 2011 - 10:42 PM

I go to the annul Blood Conference here in Indianapolis In yearly.  One of the question us patients ask. With all this research and drug money where is the cure!!!!  I think health care is big money making machine and if we were well, ?????

You hear several leading blood cancer doctors speak then you get to ask question.  However the real stories come from the patients, which is usually much different the picture the doctors paint.

Correction I have been on Gleevec since 2005 & my labs have been near perfect for at least the last 5 years.

How does the doctor know Tasingna is a better drug it has only been out since 2007 that is not a very long track record.  How does the doctor know how an individual will react to a new drug.  Me thinks they have no way to know.  I remember going on Gleevec and being sick.  Oh just take this pill, and that pill, oh you are just suffering from anxiety, Just like the doctor said you will just breeze thru it, no problems, make the switch to a new drug, no worry.  Do they really think we are that stupid!! 

It almost make me just want to thru the dang pills away then fool with all this misinformation and fussing with everyone!!

Doctors are not God, they herd people thru like cattle!! 

Sorry I sound ungrateful, which I am thankful for my gleevec it is just the frustration of spending so much time with doctors, labs, insurance and uncertainty.


PamSouth


#10 oscarsst

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Posted 22 October 2011 - 09:44 AM

Hi all, We too use GenPath -- last PCR at end of August. My understanding was that GenPath had switched to the International Scale back in 2009 (see prior posts to this board in July 2009). Just wondering whether you are saying that GenPath told you they had made another switch (Oct 2011). Slightly confused though, as I thought once a lab converts to International Scale that's it. Would you mind clarifying? If anyone else has any input on this, please let us know. Many thanks (just trying to avoid surprises at end of November). Stephanie



#11 pamsouth

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Posted 22 October 2011 - 12:26 PM

I have a correction to make regarding the current price of TAGSIGNA.    On 10/20/11 I call Medco where I get my Gleevec from an asked them to price TASINGNA for me as my oncologist has been pressuring me to change from Gleevec to tasingna. On 10/20/11 I spoke with 2 different people from Customer Service who quoted $1,832.96 for 200 mg of Tasingna.  The pharmacy said she was confused of the pricing and she saw they came in packages of 28, and she transferred me back to customer service that quoted the same price as the first but did not mention them by the package.  My mistake was I should have pacifically asked if that was by the package.  Anyhow I called Medco back today and spoke to their oncologist rep on call as it is 10/22/11 Sat.  She quoted me for a package of $5,782.58 for 3 packs of 28 capsules of 200 mg. So The $5,782.58 would be for a total of 600mg a day for 28 days.  The other price was $7,710.19 for 4 packs (28 capsules to a package) 200 mg for each capsule.  In another words the $7,710.19 would be for a totoal of 800mg per day for 28 days.  At least that is the math she came of with (Trena of Medco from Wetfield IN, just for my info). 

After reading some of the post on the discussion board of other patients complaining about their oncologist wanting or  pressureing them to upgrade from Gleevec to newer drug and complain about their PCR test changing.  I decided to do some research.

My anxiety is that within the last year my PCR has went from undetected for 5 years to a 24% increase in the last year.  So I called the lab and asked if they had switched to the International Numeric Scale and the answere was yes, the switch was made a year to a year 1/2 ago.  I did note on the lab report it does say The BCR/ABL1 Quant comparison with the internatin scale is 0.89 = international scale ratio. 

My husband retired from Chrysler, which filed bankruptcy a few years ago and the health insurance was put in a VEBA account by the UAW.  I do believe Chrysler was quite a bit short in what they were suppose to contribute.  Anyhow this last year the insurance by VEBA UAW has refused 90 day shipped and now they do not give a 1 to 2 week advance shipment.  If you say you last pill is on Nov 2 you will get your 30 day shipment Nov 1.  When I spoke to UAW REP the complaint is if anything happens to change your medicine or you, well it is just to expensive. It concerns me that with the health care crises and insurance cost increases and employers cutting jobs because they can't afford the health care cost.  Why change if it is not necessary. Only that they need more patents to replace the old for research.  I am in favor of research, but sometimes I wonder with all the research money why they don't seem to find a CURE!!!! INSTEAD OF MORE DRUGS!!!!  I am sure there are a lot of people asking the same question, where is the promised cure!!!!!

I also noticed from some of my research that as these patents such as Gleevec will be expiring that drug companies are pressureing the doctors to switch to the newer patents as the federal goverment has cut research funding.

I also have taken into consideration that Gleevec research started 1997 and over 80 % of those patients are still alive and doing well.  Tasigna patent came out in 2007 so I am bit uncomfortable with the new drugs because they do not have a long track record.  I hear the news all the time where drugs were pulled because of long term short term side effects.  I think until a drug has been out for a number of years, say 10 to 20 years, the verdict is still out. 

I went to a seminar a few years ago conducted by a long time oncologist.  He said that in the old days they were taught to hit the patient hard and fast with chemo and they killed the patient with the chemo.  Now on some cancers the doctors say, it is a watch and see and nothing every become of the cancer.

I think, in my opionion that you don't have to kill all the leukemia cell to live a long time.  But each case is different and it is always a guessing game to which kills your first, the short term, long term side effects of drugs or the cancer itself. Then there is always the issue of the quality of life.

I was a care taker for my mom 3 years before she passed.  Caretaker for my husband last year, whom I thought I was going to have to put in a nursing home, as it turned out he was allergic to the arthritis mediciene that instead of the doctor taking him off of it just kept increasing in along with other medicine.  I finally told my husband he had to ween off the medicine as I was certain it was the mobic and I could continue to bath, dress, feed him.  Yep he completely recovered except for the arthritis I was the allergic reaction of mobic and then all the other medicine (pain pill, nerotin, etc) on top of that. Then my son was just in 3 hospital for 88 consecutive days.  Then my own experience with the health care system, as left a sour taste in my faith in the whole system. 

I have found it is best to do your own homework compare notes with others in the same situation and get 2nd, 3 rd opionins and then go with your gut.  I can't help but think that drug companies have become a big profit making business and perhaps we sometimes are misled. 

A lot to consider!!  Just thought I needed to clear up the cost and issue on the international scale.  The rest of my post are only my opinions.


PamSouth


#12 pamsouth

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Posted 22 October 2011 - 03:28 PM

Sorry I just posted and got kicked out.  So this will be short.

Dx with CML july 2005. Was on Hydroxyrea for awhile, 2 million platelet count, and grantulytes off.  White cells weren't that high. 

Then I went on Gleevec.  That same year I flew to MDANDERSON CANCER Houston Tx.  Then returned MD ANDERSON the following year for follow up.

My CBC'S Have been almost perfect and my FISH are usually anywhere from 92 % to 100 % normal cells.

My last PCR lab for Oct 2011 was up b2a2 wa 23.45 % and b3a2 was 23.45 %. Usually it is undedectiable.

Wed Oct 19 th I called Bio Reference lab GenPath 800-229-5227.  Bio REf Genpath said they had went on the International Numeric Scale a year to 1 1/2 years ago.

My ONC approached me a year ago about switching to Tasigna, one of my numbers was slightly up, but another well was tested and it was negative.

Last Wed October 19 2011, my ONC did another blood drawl and if come back the same, she wants me to switch to Tasingna.  I for one do not believe anything has changed with my leukemia cells except the way the lab is reporting. My thoughts only.

I have been reading the discussion boards on people that have been switched to Tasigna and are not doing well and some are being switched back to Gleevec with even more side effects from Gleevec as well.

As long as my CBC are good I do not care to go thru the switching of drugs.  After all these drugs are in unfamiliar territory.  At least there are people (over 80 % I belive) that have been on Gleevec since 1997 and are still doing well.

I find it interesting as some of these patents such as Gleevec will be expiring and as they become generic the cost will drop.  The drug companies and ONC are pressuring the patients to switch to the newer patent drugs.  I do believe that the federal government has cut the research funding, so this is one way to come up with more money.

When I was first DX I was told "oh there will be a cure in a few years."  Where is the promised cure for all these diseases we are promised"  Seems to me just more expensive drugs.  Does these billions of dollars all go to research or to make rich CEO.

My Insurance gives me grief over paying these bills.  I use to get a 90 day supply.  Now they only authorize a 30 day supply, and they will not ship until the day before you run out of Gleevec.  Chrysler filed bankruptcy a few years ago and the insurance money was put into a VEBA account, ran by the UAW.  I called a UAW rep and they are upset  paying for this expensive drug.  I believe the patent for Gleevec will run out 2013 not sure, but it will be become generic and more affordable.

I don't know how our health care can sustain the cost of these med's or health care cost.  Most employees do not want to hire full time employees due to the high cost of health insurance.  So why change drugs that will become unaffordable and put a bigger burden on the cost of health care.  Or if the insurance runs out do we have to become destitute to receive assistant and who wants that.  What has happen to our country!!

HAPPY ON GLEEVEC, NOT CHANGING!!


PamSouth





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