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Myeloma Civil War - High Cost of Cancer Drugs!

3/26/2016

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I have to begin this discussion letting the readers know that I love my myeloma drug dealers.  Without Thalamid and Velcade, I would not be writing this blog post today.  I am alive because these game changing drugs were part of the regimen which has keep me alive for the past 10 years.   In addition, I had great insurance which my wife had with her job in the school district, and Medicare was a backup, so I seldom had to pay anything myself.  I once told one of the drug manufactures which supported our IMF meeting, "I do not care how much the drugs cost as long as I do not have to pay for them."   Recently I have watched two outstanding myeloma doctors from Mayo Clinic have a civil debate on twitter about the high cost of cancer drugs. I admire them both.   Dr. Rajkumar has taken the position that cancer drugs are outrageously priced and older drugs should not go up more than the increase in the cost of living index.  He is so right, and any thing more is a ripoff.  Dr Fonseca will argue without the profit motive to develop new drugs, there would be no new drugs for orphan diseases like myeloma or orphan diseases in general.  He is so right, and I am still alive because of this new drug development.  So how can these two terribly divergent views coexist and both be right.  I think they both have merit.  I will outline my thoughts on each in future posts.

Dr. Rajkumar is right for the following reasons:

1) Old drugs like Gleevex(Novaris) and Melphalan(GlaxoSmithKline) have had outrageous price increases over time. CLICK HERE or HERE
2) Drug companies cry high costs of R&D, yet prices are similar for high and low volume diseases. Fixed costs like R&D go down linearly with volume.  So for all of the most common cancers,  patients with breast, colon, and lung cancer are getting totally ripped off.

Dr. Fonseca is right for the following reason:

1) Profit is the only driver for Pharma companies for the development of new game changing drugs. Government and non profit cancer organizations try but are sadly incapable of properly funding cancer research, therefore Pharma must fill this gap. 

How can both of them be right.  I believe they are both correct, however sometimes, and I think that sometimes is now, government needs to make sure the playing field is level.  My original statement was, "Save me as long as I do not have to pay!"  Unfortunately some people can not pay for the out of control drug price increases.  It reminds me of an old skit by Jack Benny "Your Money Or Your LIFE?" because when someone has this kind of control over your life and death, I say that is a monopoly and the government has laws for that. 

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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BART's BACK!  UAMS or Mt. Sinai?  Should I Stay Or Should I Go?

3/15/2016

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For all the patients who have been treated by Dr. Bart Barlogie at UAMS, there was the big question-should I stay at UAMS or change to Mt. Sinai, where Dr. Barlogie now practices?  My decision was not that easy. So I went to see Dr. Barlogie at Mt.Sinai, and let me count the WHYS I will continue to go. 

- Dr. Van Rhee is at UAMS and he has a similar philosophy to Dr. Barlogie, so I did not have to worry about a major change in treatment philosophy.  I like both doctors, however Dr. Barlogie has been my doctor for several years and even a tie would go to Dr. Barlogie.  Advantage, Sinai

- UAMS has seen so many patients and has a support system which is  well oiled and efficient.  Can I get a similar experience at Mt. Sinai?  If I had been one of the first flood of new patients from UAMS to Sinai in the first few months, I would have said UAMS by a mile. With Dr. Barlogie's move to Mt. Sinai,  there was a sudden flood of new patients.  When I went they had already made the adjustments to handle the increased volume, and it was one of the few times I did not have to wait hours for my appointment with Dr. Barlogie.  He was always overbooked and overextended.  In addition, I was able to get all of my results in a three day period rather than 4 days at UAMS.  By a slim margin  Advantage, UAMS but with a little more time I think this may change to Sinai.

- New York is less costly to travel to than Little Rock and easier  to get to with many cheap direct flights from Jacksonville. Advantage Sinai

- My wife just retired, so my insurance is now Medicare and Blue Cross Blue Shield Part F.  Will this new changed insurance provide coverage at UAMS and Mt. Sinai?  They were accepted by each location.  Tie for UAMS and Sinai

- My daughter lives in Brooklyn, so I would be able to make it a family visit along with a myeloma checkup.  No cost for a hotel, and no car required (use the subway).  Without this the cost of hotel would be higher than in Little Rock. You can find hotels for $100 to $150 per night  in New York if you don't mind a $20 cab ride or a $3 subway fare.  Just as UAMS has had for long stays, Sinai is negotiating long term rates for those who need a longer stay for transplant.  I can hardly imagine New York will have an advantage in this area over Little Rock.   For me Advantage Sinai, for most others Advantage UAMS

- Little Rock is a nice city, however during breaks in treatment in New York you can walk to  the MET museum or the Guggenheim museum, and on your off day do a half price Broadway play. Advantage Sinai.

- What is the level of the other doctors and support staff at Sinai as compared to UAM?  UAMS has Dr. Morgan, Dr. Maurizio Zangari, and Dr. Fritz Van Rhee, while Sinai has Dr. Jagannath, Dr. Barlogie, and Dr. Chari. Dr. Barlogie noted the support staff at Sinai was outstanding and above his expectations.  I have to rate this a Tie for Sinai and UAMS

Final Tally - For Me Advantage Dr. Barlogie and Mt. Sinai!

Now how was my visit.  The visit with my family and the myeloma checkup all went well.  Before I left I was given all my results except those for my MRD test, which takes several days.  I flew into New York on Tuesday, and took an hour subway ride from Brooklyn to Mt. Sinai on Wenesday.  Being from places which do not have subways it was a little intimidating, but I found New Yorkers more than happy to help us get where we needed to go.  On Friday I had a PET scan at 7:30am in the morning and Dr. Barolgie's meeting at noon.  The PET scan info was already available.  How cool was that, it saved me a day.  Dr. Barlogie gave me an all clear sCR(stringent complete response), no bone lytic lesions, no M spike, and normal light chains and ratio.  So I went home joyful.  I had been MRD negative for the last 2 years and was hoping to make a three-peat.   When my MRD test came back in a few days it had showed the following:

MRD was slightly vague: when Bart returns from Japan we will get his take on it.
A very low-level population of CD38+ plasma cells is detected that coexpresses lambda cytoplasmic light chain, comprising 0.01% of all analyzed white blood cells (cKappa 0%, cLambda 20%). COMMENT: Significance of this finding is uncertain but may represent minimal residual disease. Suggest clinical correlation. Cytogenetics were 46 XY in 20 metaphases.

Signal Genetics, Gene Expression Profile:



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To me this did not sound very good, and certainty not as good as a three-peat.  When Bart came back from Japan, he confirmed I was MRD positive, but it was not really bad news.  He said first it was at a very low level, and secondly it was the first time he was able to evaluate my myeloma cells, and the GEP(gene expression profile) showed a very low risk disease.  He likened it to a very low risk low level MGUS state.  With myeloma there is never a dull moment. 

So will I stay or will I go? For now I am going to dance with the one who got me to sCR, when my original diagnosis was for a life expectancy of three  MONTHS.  So Dr. Barlogie, ready or not you got me now!  As long as I had him on the phone, I asked him if he would be on an upcoming Cure Talks panel and he was kind enough to agree.  So we will have the pleasure of having Dr. Barlogie on a May or June panel.  Whatever works into his schedule.  Should be outstanding.


And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com

For more information on multiple myeloma go to the web site  www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

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Give Me An L (Leukemia), Give Me An L (Lymphoma), PLEASE, PLEASE, PLEASE Give Us An M (Myeloma)!

3/11/2016

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March is Myeloma Awareness Month! First and foremost, I love the LLS(Leukemia and Lymphoma  Society), and I think they do a great service to blood cancers in general. They provide up to $10,000 in copay assistance to myeloma patients, twice that of other covered cancers.   However, it does not get any billing in the societies name even though it is the second most common blood cancer, and one of the biggest problems is an almost total lack of awareness.  Few people have ever heard of myeloma.      From my last blog post leukemia gets 2.2 times  what its years of lost lives would justify, and lymphoma gets 1.4 times what its years of  life lost would justify, and myeloma is just 80% of what it would justify,  and 40% if deaths were recorded correctly.  Myeloma is the most under-reported cause of death for all cancers!  So I think the outreach and education of the LLS has been an outstanding  educational tool and conduit for improved research spending for both leukemia and lymphoma and this has driven  the  outstanding spending for research for leukemia and lymphoma.  Everybody has heard of leukemia and lymphoma, but people only hear about myeloma after being diagnosed by a very skilled General Practitioner, or savvy oncologist who connects the dots. 

It is my belief. the LLS is the most visible cancer society in the nation and maybe in the world, and being part of the name would go a long way to get people to at least hear of myeloma and learn more about it on the LLS site and in general.  We are the second most common blood cancer, yet do not even get a mention in the name of the most well respected and visible cancer society and site in the world.  As Pat might have said "Myeloma Gets NO RESPECT"!  Lack of awareness in the community of  General Practitioners, Oncologists, and Hematologists must result in what Dr. Morgan of UAMS says is just a scandal.  Twenty percent of myeloma patients die within the first 2 months of diagnosis because of late diagnosis or misdiagnosis.  LLS, I beg you give us an M, SOS, SOS, Save Our Souls!  You do not understand just how many lives you will save with a simple M.  PLEASE, PLEASE, PLEASE, GIVE MYELOMA PATIENTS AN M!  LLM!!!

GARY PETERSEN([email protected])


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    Gary R. Petersen
    [email protected]
    CLICK HERE for my myeloma journey

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