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Multiple Myeloma patients gets another drug for their treatment battle - Carfilzomib

7/21/2012

On Friday the FDA approved the use of Carfilzomib(now named Kyprolis) for use in refractory myeloma. This was reported in the attached article in the Myeloma Beacon at http://www.myelomabeacon.com/news/2012/07/20/fda-approves-kyprolis-carfilzomib-for-relapsed-and-refractory-multiple-myeloma/, and another article in the Wall Street Journal at http://online.wsj.com/article/SB10000872396390444330904577539031234823376.html, which also outlined the importance of the work of the MMRF, Multiple Myeloma Research Foundation, in helping to develop these new drugs. The MMRF has played a key role in providing the support and financing for new multiple myeloma drug development. It is safe to say that they will be a key element in the work to find the "Cure".

Previously, this drug has been available to only a small percentage of the Myeloma patient community, and approval was based on a 266 patient study. I do not include unapproved drugs in the clinical trial area of the home page of www.myelomasurvial.com, but you will now be seeing some great results for those for Carfilzomib in the near future. There have been some excellent results to date, and Carfilzomib will now be more widely available to all patients who can meet the criteria for refractory myeloma. One of my readers has asked me to include a section for treatments for relasped (it has come back but will be treated with a previously used treatment), refractory(it has come back and no longer responds to the old treatment, but others may or may not be available), and high risk patients(those that have a very difficult form of myeloma that proves difficult to find a viable treatment plan). I now think it is time to expand the site to include this subset of patients. So you can expect to see this in the next several months.

Just wanted to share the great news. Best Regards/editor@myeloma survival.com

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Multiple Myeloma - Why Do People Beat the Average Myeloma Life Expectancy Prognosis?

7/18/2012

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You can read a updated (07/05/2015) version of this post if you CLICK HERE.

The new SEER data for multiple myeloma has been published by the National Cancer Institute, and the average life expectancy remains at 4 years for the second year in a row. However, some people beat the odds and live 10 to 20 years or more. When I was first diagnosed, the data for a person with dialysis-dependent kidney failure was just 3 months, and the overall average was 3 years. Now I am a 6 year survivor, so I have beaten the average life expectancy prognosis at the time, and this was with what was called a negative prognostic indicator (kidney failure). So I believe you can break a patient's ability to beat the odds into two parts. Part one is disease dependent, or what was the hand that you were dealt. Part two is related to the level of care that is available to you. For more information on survival rates and life expectancy CLICK HERE.

Part 1 - Disease Dependent

Some people are just plain lucky and are given a form of myeloma that is not that aggressive. In other words they have myeloma, but it happens to be smoldering myeloma. This form of the disease can be present in the patient but not show any outward symptoms. It can remain in this mode for 5, 10, or even 20 years.

The age of the patient is very important, in that you are 2 times more likely to survive if you were diagnosed at 49 years of age or less. The average age of the typical myeloma patient is 70. You can read more on this subject at the link: http://www.myelomasurvival.com/1/post/2012/10/multiple-myeloma-the-younger-you-are-the-better-the-prognosis-a-much-improved-life-expectancy-and-survival-rate.html

Some people may have an active disease but do not have any of the negative prognostic indicators. These include, but are not limited to, deletion of chromosome 17p and translocation of 4;14 or 14;16 or 14;20. Your myeloma specialist will run the FISH test or other genetic tests to determine if you have any of these negative prognostic indicators. If you are considered high risk, the life expectancy is just half of the current average, or just 2 years. You can read more about high risk multiple myeloma at the link:http://www.myelomasurvival.com/higher-risk-myeloma.html

The sensitivity of the disease to treatment is also important. My myeloma seemed to be very sensitive to Thalamid and Dexamethasone and put me into remission very quickly. Some people might have the same experience with Revlimid, Velcade, or Dex, or any combination of these drugs. If the disease comes back, as it often does, the re-application of the same regimen may continue to work for years. I know one patient who has taken Thalomid for years as his only treatment and remains in remission. This is working well for him.

And of course if the average is 4 years, half of the people will invariably beat the average.

I am sure there are other disease factors, however, what I want to discuss now is the part of disease control that you may or may not have more control over.

Part 2 - Quality of Care

There are some elements that you may or may not have much control over, the first of which is the availability of insurance. If you do not have insurance or have no access to care, the average life expectancy is less than one year. However, the Affordable Care Act may provide an option for the 15% who are not insured, and Medicare, Medicaid, and drug company assistance programs are also available. In addition, there are other programs we have discussed on the bottom of the home page at the web sitehttp://www.myelomasurvival.com/index.html that can be of assistance. Unfortunately without care, like people who need dialysis (which is always covered by Medicare), you will have below average life expectancy.

Not all oncologists, or hematologists are the same, and the data shows that some provide an average life expectancy of 10 years or more, while the average remains stagnant at 4 years. For a listing of these exceptional specialists go to www.myelomasurvival.com or for a more extensive list without survival history just Click Here. And obviously, if your myeloma specialist has an average patient life expectancy of 10 years, their patients will beat the average by more than twice the average. This is what I did when I chose to get my SCT(stem cell transplants) at University of Arkansas for Medical Sciences, UAMS, which has a myeloma program called MIRT, Myeloma Institute of Research and Therapy. At the time they had over 10,000 transplants under their belt, and as a result they were expert at the process, and knew what could go wrong and had a plan in place to get you through any potential complications. And I have found from my work on this site that centers like Mayo, Dr. Hari(Medical College of Wisconsin), UAMS, or Dr. Berenson's (IMBCR) have very different approaches to treatment, but because they are expert in what they do they have similar results. A specialist for brain surgery is who you would chose over any other surgeon if you had a brain tumor, why would you not do the same for myeloma? A link at how to find a myeloma specialist is: http://www.myelomasurvival.com/1/post/2012/04/next-step-how-to-get-a-second-opinion-for-multiple-myeloma-treatment.html or http://www.myelomasurvival.com/1/post/2012/04/how-do-you-define-a-multiple-myeloma-specialist.html

Myeloma specialists have access to drugs that other oncologists do not. Because they are the thought leaders, they are involved in clinical trials, and can obtain some drugs through other programs that lesser known oncologists do not have access to. Worse yet, oncologists who are not myeloma specialists may not even know that some of these drugs even exist. For example, some of the well connected specialists have access to unapproved drugs like Carfilzomib, or Pomalidomide through special programs. Or some specialists can use drugs that are only approved for relapse or secondary therapy options, and obtain approval to use them for newly diagnosed patients. They also have access to the best clinical trials like VRD for first line therapy which provides a response in 100 percent of patients. When you run out of options with the currently approved drugs, they can provide access to those that have done great in clinical trial, but are not currently available to the general public. Sometimes it is who you know!

I also think the quality of care that you receive can also be affected by the knowledge of the patient, and this can be obtained by doing your research on finding the best approaches to care by looking at the work of the best myeloma specialists on-line, and by going to great sites as listed in the Resource Section of www.myelomasurvival.com. In addition, joining a support group of the International Myeloma Foundation or the LLS (Leukemia, Lymphoma, and Myeloma Society) will provide more great information to improve your life expectancy. I have found that the average life expectancy of most of these support groups far out-performs the average. Knowledge is power! Additional information on the benefits of support group membership can be found at: http://www.myelomasurvival.com/1/post/2012/08/multiple-myeloma-support-group-members-do-have-a-longer-life-expectancy-and-improved-survival-rate-but-is-it-the-chicken-and-the-egg.html

There are 80,000 multiple myeloma patients, and if we can move the average from 4 years to 10 years life expectancy with the myeloma specialists, we could save 80,000 times 6, or 480,000 years of LIFE. You all can help by getting this message out to the myeloma patient community though Facebook and Twitter. Everyone knows someone who has myeloma or may have a friend or family member that can be helped by this information. With your help we can "SAVE LIFE"!

Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.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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Multiple Myeloma Survival Rate Statistics remain stagnant?

7/3/2012

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I, along with the rest of the myeloma community are very optimistic about the future of care for multliple myeloma patients. Much of this optimism is because we continue to hear the great news from ASH(American Society of Hematology) and ASCO(American Society of Clinical Oncology) meetings, as well as the excellent results that are posted on this site. So it came as a great surprise to me when the new statistics from the National Cancer Institute were updated on April 30, 2012 showed a 2% reduction in the 4 year survival. The 4 year survival got worse not better and went from 50.4% to 49.2%, and I can not tell you how disappointed I was to see this. This data is available at the following web link: http://seer.cancer.gov/csr/1975_2009_pops09/browse_csr.php?section=18&page=sect_18_table.09.html The National Cancer Institute provides this valuable information in the form of their Surveillance, Epidemiology and End Results (SEER) Cancer Statistics Review.

To me there is such a large gap between what we hear and what we see. The majority of specialists who have provided their data on this site or are with nationally recognized programs reflect results that are much better than those listed on SEER. As we have discussed on this site before, their are many possible causes for this anomaly, but all of them combined represent a possible 10 or 20% difference, but not 100 to 500% difference. I again make the case that it can only be the quality of care, and as a result I believe as do most myeloma specialists, that all multiple myeloma patients should have a multiple myeloma specialist on their team to narrow the gap between what they hear and what they experience.

God Bless all who have to be on this multiple myeloma journey/ editor@myelomasurvival.com

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Multiple Myeloma patients gets another drug for their treatment battle - Carfilzomib

Multiple Myeloma - Why Do People Beat the Average Myeloma Life Expectancy Prognosis?

Multiple Myeloma Survival Rate Statistics remain stagnant?

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