<![CDATA[Multiple Myeloma - Survival Rate Statistics by Hospital - Myeloma Blog]]>Tue, 21 Nov 2017 11:09:12 -0800Weebly<![CDATA[LLS Co Pay Program For Myeloma Reopens, BUT, And It Is a BIG BUTT!]]>Fri, 17 Nov 2017 15:51:33 GMThttp://myelomasurvival.com/myeloma-blog/lls-co-pay-program-for-myeloma-reopens-but-and-it-is-a-big-buttNote: Sadly the day this was published I received the following update from Dana Holmes. "Gary! The fund is already fully subscribed! I posted an update earlier today...it took less than 24 hour...sigh...they hope to get additional funding, but there is no way to project when."

First the good news, the LLS CoPay program has reopened.  Dana Holmes has posted on her Smoldering Myeloma site the following:


A lot of people have worked to make this happen.  Dana Holmes, IMF, LLS, MMRF, Myeloma Crowd, Doctors, Patient Advocates, Patients, our pharmaceutical partners. Thank You to ALL, ours lives depend on it!

There are limited funds, and all those who have been previously approved must sign up again.  Your prior myeloma approvals are no longer in force, and you must call to reapply for the program.  This time it has changed in a few important ways.  The first of which is if you apply and are approved the money will be guaranteed for one year from approval. Also to keep your approval active you must enter expenses at least once every 3 months.  Funds are limited, so to obtain funding it is first come first served.  The copay amount has been reduced from $10,000 to a maximum of $7500.  Once the funds are allocated no more applications will be accepted until new funds become available. You can learn more about the program if you CLICK HERE.

So where is the BIG BUTT?  As mentioned before all people except seniors have or can buy private insurance and the federal government can not mandate a no copay policy.  Drug companies can provide copay assistance DIRECTLY to the 85% of Americans that fall into this category.  However for the 15% of the population who are seniors, drug companies are forbidden by law from providing direct copay assistance.  To me this sounds like an issue of Federally mandated AGE DISCRIMINATION.  And sadly this is a crisis for seniors, but for African American Seniors with myeloma it is 2.5 times the crisis.  African Americans are 2.5 times more likely to get myeloma than the general population.   As stated previously, the Federal Government made this provision to promote the use of generics for Medicare patients, but did not  exclude single source or patented drugs from this program.  For more information on this Medicare Faux Pas or BLUNDER CLICK HERE.

So the lack of copay assistance for Medicare patients is a key part of the BIG BUTT.  If drug companies could not pay the copays directly, then maybe they can give third parties like LLS, PAN, etc, money, and these non drug company third parties could then provide the copay to Medicare patients and thus solve the Federal COPAY BLUNDER!   This was great for the medicare patients who could now afford their life saving drugs.  Myeloma patients could have copays of $10000 to $30000 per year or more than their Social Security Checks.  The equation is NO COPAY = NO DRUGS = SENIOR GENOCIDE! 

As one fine Mayo Doctor once said, this makes sense to the drug companies because they can spend $10000 to $20000 in co-pays and sell their drugs for $120,000 to $300,000.  Who wouldn't spend $10 to make $120.  Something obviously has gone very wrong because the 3rd party Well went dry for myeloma in March for PAN and in September for LLS.  It did not however go dry for lymphoma and leukemia.  So why myeloma?  Some reasons could include the myeloma drug companies are having trouble with basic math, the lymphoma and leukemia guys are much better at math than the myeloma drug companies, there is another agenda in play???(The Conspiracy Theory), or drug companies just did not have a system in place to know how much funding was going out vs. what was  coming in.  Seems like the most basic of math problems.   Why it takes over 6 months to correct is unconscionable and beyond comprehension!

So for all of us with myeloma, we hope they solve the last BIG BUTT, and that is to make sure the well is NEVER AGAIN EMPTY, or allow drug companies to provide copay assistance for single source and patented drugs.  If we interrupt our treatment we are far more likely to die, and 30% of us already die in the first year. 


Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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<![CDATA[Dr. Carl June, The Father Of CAR T Immunotherapy!  A New Last Chance For Cancer Patients?  By Shweta Mishra]]>Wed, 15 Nov 2017 00:50:08 GMThttp://myelomasurvival.com/myeloma-blog/dr-carl-june-the-father-of-car-t-immunotherapy-a-new-last-chance-for-cancer-patients-by-shweta-mishraCAR-T cell therapy (chimeric antigen receptor T-cell therapy) has been in news since the time it got FDA approval in August 2017. In what is #newincancer and the first treatment based on gene transfer approved by the FDA, this immunotherapy treatment works by extracting a patient’s T cells, re-engineering it with some surface proteins, and then injecting the redesigned T-cells back into the body to allow them to proliferate, hunt and kill cancer cells. For now, this therapy, named Kymriah by Novartis, is approved to treat children and young adults up to age 25 with a recurrent form of the the blood cancer called acute lymphoblastic leukemia (ALL).
Dr. Carl H. June, MD, of the University of Pennsylvania, who is one of the pioneers of CAR-T cell therapy, will share all about his CAR T-Cell Journey and the Cancer Treatment Revolution with CureTalks on November 15, 2017, 1 PM EST.

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Dr. June, who is a Richard W. Vague Professor in Immunotherapy, Perelman School of Medicine at the University of Pennsylvania, first wowed the science community in 2011 with promising results from a small study of three advanced chronic lymphocytic leukemia patients that was published in The New England Journal of Medicine and Science Translational Medicine. The findings, which detailed how Dr. June’s personalised immune cell therapy wiped out all signs of leukemia in two of three patients, showed the first successful gene transfer therapy to create T cells aimed at battling cancerous tumors. In addition, these findings helped put a spotlight on the big role that small human trials can play in early-stage drug research.
Dr. June was motivated to do cancer research after his wife passed away in 2001, due to ovarian cancer.




After graduating from the US Naval Academy in 1975, and serving as a naval officer before graduating from Baylor College of Medicine in 1979, Dr. June studied immunology and malaria with Dr. Paul-Henri Lambert at the World Health Organization in Switzerland. As a postdoc fellow he worked in transplantation biology with Dr. E. Donnell Thomas and Dr. John Hansen at the Fred Hutchinson Cancer Center in Seattle from 1983 to 1986, after which he joined Uniformed Services University as a professor of medicine and cell and molecular biology. He is currently a tenured professor at the University of Pennsylvania since 1999.
Dr. June, was awarded the 2017 David A. Karnofsky Memorial Award at ASCO 2017 in June, an honor bestowed for his pioneering work on CAR-T cell therapy. His Peers and Mentors say that “Carl is unique in many aspects”. Along with having won numerous awards, being a brilliant researcher, and an ultra-marathoner, he is “such a wonderful and humble person.”

RSVP to listen to Dr. Carl June live on November 15, 2017 at 1 PM EST on CureTalks to learn all about this #newincancer breakthrough treatment. 

Shweta Mirshra is
an author/blogger/content creator/editor, and Internet radio talk show host @curetalks #Digitalmarketing #mhealth @trialx @appinformatics #fertility #ivf #conception

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<![CDATA[The Myeloma Cancer Community In Crisis!  By Patient Advocate Cynthia Chmielewski]]>Fri, 03 Nov 2017 23:55:30 GMThttp://myelomasurvival.com/myeloma-blog/the-myeloma-cancer-community-in-crisis-by-patient-advocate-cynthia-chmielewskiPicture
Recently, I received an urgent text message from one of my dear friends.  “Did you hear LLS (the Leukemia and Lymphoma Society’s) Co-Pay Assistance Program is closed to multiple myeloma due to the demand? Is this true? Have you heard? I count on the LLS.” At that point I hadn’t heard anything about the fund being closed. I figured there would be some warning if this was true so I didn’t give it a second thought. I suggested she call the LLS if she was concerned.  She was afraid to do this, because she feared she would hear news that she didn’t want to face.  By the next day, the Internet was buzzing with this unexpected news.

It was true The Leukemia & Lymphoma Society (LLS) abruptly closed the Myeloma Co-Pay Assistance Program.  The Myeloma Co-Pay Assistance Program offered financial help toward blood cancer treatment-related co-payments, private health insurance premiums and Medicare Part B, Medicare Plan D, Medicare Supplementary Health Insurance, Medicare Advantage premium, Medicaid Spend-down or co-pay obligations.  This program was a godsend to many in the myeloma community. Myeloma treatment is expensive. Funding for the LLS Co-Pay Assistance Program is based on disease type. The Myeloma Fund of the Co-Pay Assistance Program awarded eligible myeloma patients up to $10,000.00 a year to help cover their treatment costs. Without this assistance many patients are unable to afford their insurance premiums or prescription and treatment co-pays. The LLS said, “… this unfortunate occurrence led to inconvenience to many of the patients we strive to serve.”  The closing of this fund is more than an “inconvenience”; it is devastation to many.  
What happened?  It was a perfect storm.  Earlier this year, two other co-pay assistance programs closed their myeloma funds. With the closure of these funds, the LLS received an influx of new applications from myeloma patients. The LLS accepted all eligible patients into their program. The LLS Myeloma Co-Pay Assistance Program was never closed to new applicants. Applicants received acceptance letters up until the day it closed.
The LLS Myeloma Co-pay Assistance Program started 8 years ago, and it is closely monitored by the Office of the Inspector General, which is part of the Department of Health and Human Services. At the time of the Myeloma Co-Pay Assistance Program’s formation, the LLS made the decision that this fund should be a pooled fund. The LLS believed that they would be able to serve more patients in this manner. In a pooled fund, the monies from the pharmaceutical companies supporting the myeloma co-pay assistance fund were put into one general myeloma account instead of individual patient accounts.  When a myeloma patient requested a reimbursement, the money was taken from the general myeloma account fund. This method of disbursement of funds worked for 8 years.
Over the last decade, myeloma treatment has evolved.  Treatment is more expensive than ever before.  Eight years ago, monoclonal antibodies for myeloma didn’t exist and doublets (two-drug combination therapies) were more commonly prescribed than triplets (three-drug combination therapies).  Eight years ago, patients weren’t living as long as they are today. Eight years ago, maintenance therapy was in its infancy. Patients weren’t treated with expensive oral therapies until progression.  They stopped treatment once a maximum response was reached.  Eight years ago, insurance premiums were less. Eight years ago, many patients didn’t use their entire award.
Recently, the LLS Myeloma Co-Pay Assistance Program depleted all its funds. The LLS was counting on additional funding from pharmaceutical companies to come in.  As of now, it hasn’t arrived.  Since funding was pooled that meant that not only was the fund closed to new applicants, but patients that were already awarded grants no longer had funding. This came as a shock to the myeloma community depending on these monies. They were in disbelief. Many had questions that were unanswered in the initial letters that they received informing them they no longer had funding available for them. The LLS published a Statement on Closure of the Myeloma Fund last week that answered many of these questions.  Some questions still remain unanswered.
Patients quickly scrambled to apply for funding through other foundations, but within days those funds were closed to new applicants.  Many patients have nowhere to turn. They cannot afford their prescription and insurance co-pays. They are worried and stressed. (We all know that stress is not a good thing for a cancer patient).  They need to make tough decisions—do I pay for my treatment, or do I pay my mortgage?  Patients with private insurance may be able to request assistance for prescription co-pays (not insurance co-pays) from the maker of their treatment. Patients on Medicare cannot get direct assistance from the pharmaceutical companies. Where should they turn to? Patients have shared their hopelessness in many of the online patient communities.
The myeloma
community is in a crisis.  A call to ACTION is needed. It’s not time to point fingers.  It is time to work together. ALL stakeholders must come to the SAME table and brainstorm possible solutions. This needs to be done NOW!  It can NOT wait.  Pharmaceutical companies, advocacy foundations, research foundations, patients, caregivers, insurance companies, pharmacies, pharmacy benefit managers, medical professionals and government regulatory agencies need to work together. The system is broken. It needs to be fixed.  Patients need access to treatment. What good are the latest and greatest treatments if patients cannot afford to take them?
Who’s in? My hand is raised. Is yours?
What can you do?  Educate yourself, but more importantly make you voice heard.  Write to your legislators about the current lack of co-pay assistance funding for the myeloma community voicing your concern that this is just the tip of the iceberg. Support legislation that will help reduce the cost of care and increase access to treatment. Contact pharmaceutical companies voicing your concern that you may be unable to afford your treatment.  Share your stories with anyone who will listen. Stories are very powerful. Use social media to educate your communities. Join coalitions of like-minded advocates. Take ACTION! Together we can make a difference.  There is power in numbers.

Cynthia Chmielewski
@MyelomaTeacherPatient Advocate, Patient Engagement


Andrew Schorr of Patient Power published this post first and has written an editorial on the undermining of financial access to medical care. To see this editorial, click here.

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<![CDATA[They Know Not What They Do!  Is This Cancer Patients 9/11?]]>Tue, 24 Oct 2017 07:00:00 GMThttp://myelomasurvival.com/myeloma-blog/they-know-not-what-they-do-is-this-cancer-patients-911Picture
The system is broken, and another example of this is in the fact  that not only the PAN co pay program is out of funds (early 2017)for myeloma, but the LLS has been out of co pay funds since the middle of September.  I hear the desperation on the patient blogs and I am just sickened.  Patient advocate Michelle Ferguson-Cohen wrote the following: "patients are diagnosed younger, living longer, often disabled, making less, we have no social safety net and prices are rising higher and higher. co-pay assistance funds are drying up and we can't count on them coming back and even the foundations focused on myeloma research do not have patient support as part of their mission. We have mortgaged our children's futures, bankrupted our families, applied for every grant, and scrambled to jump on every clinical trial. It's time to find a solution that works for patients." 

Patients say they cannot get their life saving drugs because they have no way of paying the co pays, and this is mostly the seniors on medicare who are living on a very limited income, where the co pay for Revlamid, Pomalyst, or Ninlaro could be 25 to 50% of their annual income.  Many younger patients with insurance can receive co pay help directly from the drug companies, however drug companies are forbidden from providing this to any government run program. This also disproportionately impacts the poor and disabled(many myeloma patients are disabled). So to provide the aid to Medicare and Medicaid patients, drug companies would provide money to a 3rd party like PAN or LLS,and they would offer co pay assistance to those patients.

But now this system no longer works because the 3rd party funding has been dried up, PAN in the 1st quarter of 2017 and LLS in September.  This however is not just a Myeloma Issue but for any chronic disease of the aged which has a high copay.  For more information on how the process works you can view my first report if you CLICK HERE!   What does this mean to any cancer patient?  It means they may have to stop treatment, which could be a death sentence or at least reduce their life expectancy.   Most new cancer drugs have patent protection, and cost over $100,000 a year, and there is no generic substitute.  So why on earth would the government mandate no co pay assistance for the very patients that need it most?

The government argument is outlined in a recent Medicare study: 

EXECUTIVE SUMMARY: MANUFACTURER SAFEGUARDS MAY NOT PREVENT COPAYMENT COUPON USE FOR PART D DRUGS OEI-05-12-00540

WHY WE DID THIS STUDY

Pharmaceutical manufacturers offer copayment coupons to reduce or eliminate the cost of patients’ out-of-pocket copayments for specific brand-name drugs. The anti-kickback statute prohibits the knowing and willful offer or payment of remuneration to a person to induce the purchase of any item or service for which payment may be made by a Federal health care program. Manufacturers may be liable under the anti-kickback statute if they offer coupons to induce the purchase of drugs paid for by Federal health care programs, including Medicare Part D. The anti-kickback statute applies to all Federal health care programs, but this study focused on Part D. The use of coupons by Medicare beneficiaries could impose significant costs on the Part D program because many coupons encourage beneficiaries to choose more expensive brand-name drugs over less expensive alternative drugs. In two surveys by outside groups, approximately 6 percent to 7 percent of seniors surveyed reported using coupons to purchase prescription drugs.

Sounds like a good plan to get patients to use generic drugs over those that are branded but off patent.  Why should a person want Lipitor when simvastatin is just fine, or Zoloft when sertraline is a satisfactory alternative.  BUT when a drug is under patent protection, is very expensive, and there is no generic alternative, this logic is just not at all applicable.   The state of California understands this and has passed a state law which applies to non federal insurers(not Medicare), to require the use of generics over branded drugs if generic are available.  To view the LA Times article CLICK HERE.  Medicare co pay laws need to exclude those drugs which are on patent, or have no generic equivalent.  Drug companies should be allowed to provide copay programs for these life saving drugs.   This would allow the government to obtain the saving from generics but not limit the available drugs to Medicare cancer patients.  

This negligent behavior by the Social Security program can result in wrongful death of those patients on Medicare who can not continue treatment.   If a hospital withheld treatment they would be sued, and the government can be sued, but a person would have to show negligence and send the Social Security inspector general, Gale S Stone, a standard form 95, and then a wrongful death suit can be filed.  You can learn more about the process if you CLICK HERE

The existing Jerry-rigged cancer safety net is now broken, and will result in patients dying too soon caused by the inability to afford life saving treatments.  Effectively this is government forced hospice care, as withholding life extending care can be a part of the hospice process.


Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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<![CDATA[To Transplant Or Not To Transplant? That Should No Longer Be A Question, But Stem Cell Transplant Is The Most Underused Myeloma Treatment In  the USA!]]>Mon, 25 Sep 2017 07:00:00 GMThttp://myelomasurvival.com/myeloma-blog/to-do-or-not-to-do-stem-cell-transplant-is-the-most-underused-myeloma-treatment-in-the-usaPictureDr. Rafael Fonseca Mayo Clinic
To find out more about stem cell transplants, Dr. Rafael Fonseca of Mayo Clinic was the featured speaker on Cure Talks, October 4th. You can listen to the rebroadcast of this exceptional program  if you CLICK HERE.

The IMF (International Myeloma Foundation) has just published the 2017 report from the Summit of The International Myeloma Working Group.  This group of 100 of the best myeloma specialists in the world provided a summary of their collective position on many topics including Stem Cell Transplant(SCT).  They published the following:

​Role of transplant in myeloma
"Dr. Gordon Cook (University of Leeds, UK) accompanied by panelists Drs. Morie Gertz (Mayo Clinic, Rochester, MN), Pieter Sonneveld (University of Utrecht, the Netherlands), and Sergio Giralt (Memorial Sloan-Kettering, New York), stated his fervent hope that this would be the last time the role of transplant in myeloma would need to be validated with further large clinical trials or discussed at the IMWG meeting. Data from the three large transplant trials – IFM 2009, CTN0702, and EMN02/HO95 – overwhelmingly demonstrate the benefit of upfront transplant for almost all sub-groups of patients. All concurred that autologous stem cell transplant remains an important treatment and that not enough US patients are opting for it. A remaining issue in the US is the need to make it possible for patients to store stem cells for later use."

Another report by Dr. Parameswaran Hari and Dr.Luciana Costa titled "Autologous Transplantation for Myeloma: Don’t Change the Winning Team", provides the following rational for the continured use of SCT.  They conclude with the following comments:

Premature to Abandon Upfront AHCT
"As discussed in The ASCO Post on May 10, 2017, a recent updated analysis of the two major upfront AHCT followed by lenalidomide maintenance studies (CALGB 100104 and IFM 2005-02) has shown an unprecedented median overall survival of 111 and 106 months, respectively. This 10-year overall survival of almost 50%." You can read the entire publication if you CLICK HERE. 

You can compare this performance to the current average myeloma life expectancy reported by the National Cancer Institute of just 5 years or just half of that reported for the Stem Cell Transplant and lenalidomide maintenance group.  In addition, Dr. Hari is also Scientific Director of the plasma cell disorders and lymphoma working committees of the Center for International Blood and Marrow Transplant Research (CIBMTR), and states, "For the US the rate of transplant is very low. The overall use of transplant for “eligible patients” is about 30% meaning 70% never even get referred. As you know transplant and maintenance results in 50% survival at the 9-10 year mark and this is just so sad."   In the EU, Dr. Laurent Garderet who is in charge of myeloma for The European Society for Blood and Marrow Transplantation (EBMT) database stated, "I can confirm that in Europe we tend to transplant all myeloma patients under the age of 65-70 upfront and lenalidomide maintenance post auto has just recently been approved."    So Europe recommends transplant for 100% of transplant eligible patients vs. the USA which recommends transplant for just 30% of transplant eligible patients.  

If 50% of the 30,000 myeloma patients diagnosed each year in the USA  are transplant eligible then 70% of those 15,000 patients or 10,500 myeloma patients could  have been provided the current standard of care and were not given that opportunity.   Dr. Landgren of Memorial Sloan Kettering is a believer that one day (with longer followup on current trials and more trials) we may be able to use MRD testing as the end point for treatment, however a stem cell transplant may just be part of the treatment regimen needed to get the patient to a MRD negative, lesion free state.  

So why is there such a low SCT referral rate when the evidence is overwhelming?  SCT  is the standard of care for fit patients and provides the best PFS(progression free survival) and OS(overall survival).   Is it misinformation, fear, a doctors lack of myeloma experience, transplant hospitals not available locally, unfounded concern of high death rates from transplant, unproven belief new drugs eliminate the need for transplant.   A few times I have head from patients that they  fear getting leukemia from SCT,  I found no evidence to support this misconception. The 10 year rate of a secondary leukemia is less than 1%, whereas there is a 20% chance of dying from myeloma in the first year!  Please listen to the October 4th Cure Panel with Dr. Fonseca to get the straight scope from a world class myeloma specialist.  You can also view a YouTube video  Dr. Fonseca  made for his patients if you CLICK HERE.

Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.com  For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1


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<![CDATA[Dr. Ola Landgren Of Memorial Sloan Kettering Discusses MRD Testing As An End Point For Treatment And Research]]>Sat, 26 Aug 2017 17:16:30 GMThttp://myelomasurvival.com/myeloma-blog/mrd-testing-for-myeloma-dr-ola-landgren-of-memorial-sloan-kettering-will-be-the-myeloma-expert-guest-on-cure-talks-83117-at-6pm-estPicture
Dr. Ola Landgren of Memorial Sloan Kettering Cancer Center in New York was the myeloma expert guest on Cure Talks 8/31/17 program.  CLICK HERE to listen to this Cure Talk, and his answers to questions provided by the Cure Panel and listeners. 

MRD testing just may be one of the most important initiatives in the area of treatment and research for myeloma, and Dr. Landgren has been at the very forefront of its development. Can MRD be used as a new endpoint for treatment??

One thing that has hindered progress in myeloma treatment is the lack of a test for myeloma which had the potential to be used as an indicator of disease cure.  We had M spike tests, light chain tests, and bone marrow tests, all of which we came to understand were not sensitive enough to ensure the myeloma was truly gone.  Other diseases like leukemia had MRD(minimum residual disease) tests, which were sensitive enough to be used as a confirmation that your disease had been eliminated if you were MRD negative. The treatment had been successful in eliminating the leukemia and there was a high probability if it stayed that way for 5 years, you were in fact cured.   No such test has been developed for myeloma, and being incurable treatments were thought in most cases to allow an undetected residual cancer to remain in your bones and bone marrow.  We were never told we were in remission which would lead to cure, we were told we had a CR(complete response) and later with improved testing a sCR(scringent complete response).  However, the many new drugs and drug combinations have improved the depth of response to treatments and a more sensitive test was now felt to be of far more valure.   In Europe, they had been working on tests which would have much greater accuracy, with the hope of duplicating the success  MRD testing had achieved with leukemia.  

Both the MMRF and IMF have been working with the worlds myeloma specialists community to develop a test which will be able to perform to levels sensitive to find 1 in 1 million plasma cells in the detection of myeloma cells in the bone marrow.  It is felt if we can do this and absent of bone lesions, where myeloma can hide outside the marrow, this may just be the measure we have been looking to achieve.

Dr. Ola Landgren providing us with his knowledge and incites into myeloma testing and MRD test development, differences in MRD accuracy, types of MRD tests, as well as the limitations of testing of the bone marrow and its heterogeneity.   Please do listen to his entire broadcast because MRD will become a key part of the new future of myeloma treatment and cure.


Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.com

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1



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<![CDATA[Multiple Myeloma 2017 Update - Why Do People Beat the Average Myeloma Life Expectancy Prognosis?  Or How To Improve Your Multiple Myeloma Survival Rate!]]>Wed, 16 Aug 2017 07:00:00 GMThttp://myelomasurvival.com/myeloma-blog/multiple-myeloma-2017-update-why-do-people-beat-the-average-myeloma-life-expectancy-prognosis-or-how-to-improve-your-multiple-myeloma-survival-ratePicture
I updated this post more than two years ago, and it has been very helpful to many in the myeloma patient community  One thing has become very clear to me, the pace of change and progress for myeloma has become exponential.   This is a very good thing!  We have had 4 drugs approved for myeloma since 2015 (two are new classes of drugs). 

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In this period, myeloma approvals have been 13 times greater than the average cancer. I can only say thank you to the researchers, drug companies, myeloma specialists, clinical trial patients, and advocates for such an outstanding achievement.  Nothing less than an ALL STAR performance.  In addition, the pipeline is packed with new drugs, CAR T, checkpoint inhibitors, MIL's and initiatives to treat as early as practical.  As a patient advocate I find it nearly impossible to keep up with the avalanche of new data. I can not see how anyone but a skilled myeloma specialist can keep up to date with this rapid pace of change.   But Dr. Lonial, a world class myeloma specialist from Emory University, says it best: CLICK HERE to view his advice.

In the last two years, the average life expectancy has gone from 4 years to 5.5. years, according to The SEER(Surveillance, Epidemiology, and End Results) data for multiple myeloma published in April of 2017 by the National Cancer Institute.  This is outstanding progress in that life expectancy had been stagnant at 4 years for 5 consecutive years.   Some patients 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 average for myeloma patients overall was about 3 years. Now, I am beyond thankful to be an 11 & 1/2 year survivor.   I believe there are three critical components to beating the odds: Part one is early diagnosis and treatment before end organ damage.  Part two is disease dependent, or the hand that you were dealt.  Part three 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 - Early Diagnosis and Treatment

If you are lucky enough to have a general practitioner who picks up high protein in the blood and finds the disease early while it is smoldering, or stage one, you have won the Myeloma Lottery.  Life expectancy of stage one disease is 3 times greater than if you have been found in stage three.  Treatment guidelines were published in November of 2014 with the express purpose of finding and treating the disease before it has progressed and  causes end organ failure.  A National Institute of health article states the intent of this clearly; "The concept of initiating therapy after end organ damage is analogous to initiating treatment after the development of metastatic cancer in solid tumors. Indeed, screening, early detection and intervention have played a large part in the major curative advances that have been achieved in solid tumors whereas metastatic cancer remains incurable in these same malignancies. It is, therefore, not surprising that MM remains incurable, in spite of all the advances in therapeutic interventions. Could it be because we are waiting too long – until metastatic myeloma occurs – to treat our patients? In such a condition, watchful waiting may actually be more harmful to the patient than early intervention. To read the whole article CLICK HERE! If you are one of the lucky ones who are found in the early stages of active myeloma or smoldering myeloma, you will have the luxury of time to understand the treatment options, find a myeloma specialist (a must), and plan to confront your disease before permanent end organ damage.  Dr. Rajkumar of Mayo Clinic did a wonderful job of explaining  the new criteria for myeloma diagnosis, and you can read it if you CLICK HERE.  Dr. Irene Ghobrial is doing some great work to follow MGUS and smoldering stages of the disease, to  develop treatments to cure, or at least prevent end organ damage.  CLICK HERE to view a myeloma crowd interview with Dr. Ghobrial on the subject.  Just as a note, the country of Iceland is testing all of its adult population over 40 to screen for MGUS, Smoldering, and active myeloma.  They call it iStopMM, a clinical trial supported by the IMF(International Myeloma Foundation).  This is a future I pray we will all see where we could cost effectively find MM early and treat it before end organ damage.  CLICK HERE or HERE to learn more about iStopMM.

Unfortunately,  Myeloma UK has reported that 1 in 5 myeloma patients die within the first two months of diagnosis, and that it takes nearly a year from the first symptoms to diagnosis for 25% of newly diagnosed patients.  Dr. Morgan of UAMS said it best when he outlined his thoughts on the subject of awareness and delayed diagnosis. He believes the fact that it takes 3 to 6 months and more often 6 months from first symptoms to diagnosis is a bit of a scandal.   To make real inroads in the myeloma we need to get it diagnosed early before we have organ involvement.  We need to make family doctors and family practitioners more aware of the disease.  They should do M spike and light chain tests on patients.  This makes a lot of sense to Dr. Morgan.  It is really tragic when patients develop renal failure when awareness of myeloma by a General Practitioner might have allowed the patient to get a consult or treatment from a myeloma specialist.  A myeloma specialist is critical to a patient's long term care and survival.  It is a disease that does not come on overnight but is years in the making.  Patient organizations can make a difference.   Like with Smoldering, there might be a non toxic and safe treatment for MGUS which would be a chemo prevention program.  He believe the future of Myeloma will be to get earlier diagnosis, safe treatments, chemo prevention strategy, regular screening for para protein, and early intervention.  This is the future we are striving to achieve.   

I have kidney damage, a good friend of mine has debilitating bone pain, others collapsed vertebrae, one suffers from a myeloma caused stroke, and many have died from delayed diagnosis.   All of which might have been prevented with a simple test of light chains and M spike costing under $150 without insurance, and no cost if covered by insurance and referred by a General Practitioner.  It is what could be!


Part 2 - 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 if you CLICK HERE

Some people may have an active disease but do not have any of the negative prognostic indicators.  These indicators 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 like GEP(gene expression profiling) to determine if you have any of these negative prognostic indicators.  If you are considered high risk(15% of patients) , the life expectancy is less than half of the current average, or just 2 years.  You can read more about high risk multiple myeloma if you CLICK HERE

The sensitivity of the disease to treatment is also important.  My myeloma seemed to be very sensitive to the combination of Cytoxan, Thalamid and Dexamethasone, a treatment that 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. 

And of course if the average is 5.5 years, half of the people will invariably beat the average. 


Part 3  -  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, Medicare has a Compassionate Allowance Program where you can be approved in less than two weeks if you go to your local office and can show that you will not live without care.    To see the program CLICK HERE.  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 which can provide assistance  listed on the bottom of the home page, to view CLICK HERE.




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Multiple Myeloma is a rare blood cancer, so many hematologist/oncologists may not see one patient in a year.  As a result not all oncologists or hematologists are the same. However, some are very skilled and experienced with Multiple Myeloma and have treated many myeloma patients. The data shows these myeloma specialists provide an average life expectancy of 10+ years or more, compared to the average which is at 5.5 years.

 For a listing of these exceptional specialists CLICK HERE or for a more extensive list without survival history just CLICK HERE. 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.   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.   You would choose a brain surgeon over any other surgeon if you had a brain tumor, why would you not do the same for myeloma? Find out how to find a myeloma specialist by CLICKING HERE or CLICKING HERE

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 drugs or treatments like CAR T, MILs, Venetoclax or
Selinexor  which are not approved  treatments. But these experts can get approval for initial therapy through clinical trials or other programs. Or some specialists can use drugs that are only approved for relapse or secondary therapy options (Daratumumab,  Ixazomib, Krypolis and Pomalyst), and obtain approval to use them for newly diagnosed patients.   They also have access to the best clinical trials like KRDD(Krypolis, Revlimid, Darzalex, & dexamethasone)   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. Because you need a significant infrastructure to conduct clinical trials at your facility and they cost the facility $15,000 per patient, few local oncologists have access to clinical trials.  Sometimes it is who you know! 

Myeloma patients seldom die from myeloma, they die from the complications from myeloma.    The number one complication is pneumonia, and others include infections, kidney failure, anemia, etc.  This, therefore, brings me to the realization that supportive care for the treatment of the many complications of this disease may just be as important as the cancer treatment itself.  Or a great Defense(supportive care) is as important as the Offense(cancer therapy).   MD Anderson and Mayo Clinic emphasize supportive care in their programs, UAMS actually has a Director of Supportive Care in their myeloma program, and Dr. Elias Anaissie, the Director of the Myeloma Program at the University of Cincinnati Cancer Center, has an extensive background in supportive care.  Dr. Anaissie has published a well written example of an exceptional supportive care model. You can read this publication if you CLICK HERE. To read my blog post on supportive care CLICK HERE.

I also think the quality of care that you receive can 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. To find out how to get educated about multiple myeloma  CLICK HERE.  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 if you CLICK HERE

With 30,000 new cases of multiple myeloma in the USA, we can estimate the total number of patients in just the USA at 165,000. If we can move the average life expectancy from 5.5 years to 11 years by having myeloma specialists guide your care, we could save 165,000 times 5.5, or 907,500 years of LIFE.  Many times more if we include the entire world.  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 CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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<![CDATA[Can We Dream? Can Myeloma Reduced Kidney Function Be Recovered?]]>Tue, 08 Aug 2017 23:30:04 GMThttp://myelomasurvival.com/myeloma-blog/can-we-dream-can-myeloma-reduced-kidney-function-be-recoveredDr. Ketan (Edward Scissorhands)  Badani
First an update on my kidney tumor removal.  Dr. Katan (Edward Scissorhands) Badani of Mt. Sinai is one of 5 or so doctors in the US who has completed 3000 kidney resection surgeries using the Da Vinci Robotic Surgery.  If practice makes perfect, Dr. Badani should be able to do a kidney resection in his sleep.  That is why I went from Wisconsin to New York for this procedure.  I have chosen, if possible, to never leave a complex disease or procedure in the hands of anyone other than an expert in his field.  So the result,  the tumor was removed with good margins, and initial indications are I have not lost much, if any, kidney function. My daughter Andrea said the doctor indicated the tumor in her words, not his, was "really gnarly". I will find out after 1 week whether the tumor was malignant, but even if with good margins, Dr. Badani says any cancer is gone.   If you have kidney insufficiency(mine caused by myeloma) this type of tumor is far more likely to develop than if you have normal kidney function. Secondary myeloma cancer, cancer aggravated by myeloma kidney insufficiency, or just chance, who knows? 

One  of my major concerns was my kidney function is marginal at best, and surgery could make it even worse, to the point that I would need to resume dialysis. My original diagnosis was multiple myeloma with "end stage renal disease, with a life expectancy of just three months. I spent two years on dialysis, until my kidney function miraculously recovered to the point where I could discontinue it. Typically kidney resection will result in a 20% reduction in function in the affected kidney and 10% reduction overall. This is caused both by the removal of some good kidney tissue so the surgeon can get clean margins and what is known as ischemia time where blood flow is cut off to prevent bleed out during the tumor removal and repair. Doctors try to keep this time down to 10 to 20 minutes, but in 10% to 15% of cases the time is too long and the kidney tissue dies, forcing the removal of the entire organ. Dr. Badani has developed a procedure to cut down on ischemia time, named FAST, which he teaches to other doctors around the world.  Using this process he kept my ischemia time at just under 9 minutes. 

The second most exciting development during my visit was Dr. Badani asked me if I wanted to be part of a clinical trial.  Dr. Badani is on a mission to find a way to regenerate kidney function in patients undergoing resection so they lose no function overall.  How is this possible?  In the clinical trial, Dr. Badani is using a material called AmnioFix, which has been to show to have regenerative characteristics in preliminary animal studies and in other areas of surgery and orthopedics. If it proves successful, this development could eventually lead to help for myeloma patients with kidney insufficiency--whether they need kidney resection or not.  The need is critical since we usually can't be approved for kidney transplants or are pushed low down on the priority list. The clinical trial has 45 pages and I did a little cut and past to provide a peak into it (It isn't posted yet on clinicaltrial.gov:

Onset chronic kidney disease (CKD) is a significant risk associated with radical nephrectomy as a treatment for renal cell carcinoma.[1 2] PN is a safe alternative for the treatment of renal cell carcinoma (RCC) that mitigates this risk.[3] While PN reduces the risk of CKD, PN does result in a reduction in renal function. In a literature review of the etiology and prevention of renal function decline following PN, Mir and colleagues found that within the first few weeks to several months following PN, estimated glomerular filtration rates on average in the operated kidney are reduced by 20% and in patients with two kidneys, global kidney function is reduced by 10%.[4] After this period of renal function decline following PN (~first 3 months), renal function is maintained constantly.[5]
A primary determinant in the loss of renal function following PN is a loss of renal parenchymal volume associated with the procedure. Specifically, loss of renal parenchymal volume during PN results from excision of the tumor and surrounding tissue to avoid positive surgical margins in addition to renal tissue necrosis resulting from damage associated with reconstruction of the kidney. Results from seven series demonstrate that the median percentage of parenchymal volume lost from PN is 17% (Range: 10-21.4%).[6-13] These studies furthermore demonstrate that the loss of renal parenchymal volume is the strongest and most significant predictor of reduced renal function following PN. [6,9,10] In a study by Lane and colleagues, it was found that when controlled for surgical factors (e.g., ischemia time, blood loss), tumor factors (e.g., size, interpolar location) and patient factors (e.g., age, gender, preoperative GFR) every 10% of renal parenchyma spared increased GFR by 0.89 ml per minute per 1.73m2.[7] In a similar study controlled for age, BMI tumor location, tumor size, operative method (laparoscopic, open), protuberancy and warm ischemia time, Song et al. found that for every 1% reduction in renal parenchymal volume, postoperative GFR decreased by .95 ml per minute per 1.73m2.11 Thompson et al. also found that for every 5% increase in renal parenchyma volume preserved, risk of de novo stage IV CKD decreased by 17% when controlled for preoperative GFR and warm ischemia time.[12]
In summary, AmnioFix®’s anti-inflammatory, anti-scarring, regenerating and healing properties have been evidenced in its ability to facilitate recovery of the neurovascular bundle following radical prostatectomy. We hope to further expand on these findings by extending the use of AmnioFix® to the regeneration of renal parenchymal volume with the goal of recovering lost renal function resulting from PN. A randomized trial is necessary to understand whether AmnioFix® can be used to treat renal insufficiencies and a damaged renal parenchyma.


To think we could regenerate kidney function may be as outlandish as to consider myeloma to one day be curable.  I am just thankful there are doctors like Dr. Badani who dare to challenge the impossible, and make it possible. 

Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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<![CDATA[OH CRAP!  Part NUMBER 2 - Can I Have Dueling Cancers?]]>Sat, 20 May 2017 12:45:22 GMThttp://myelomasurvival.com/myeloma-blog/oh-crap-part-2-can-i-have-dueling-cancersPicture
Part two of my kidney saga. To view part one CLICK HERE.

​I had my visit with Dr. Thiel of Mayo Jacksonville the head of the Urology Department, and in his words "The Kidney Tumor Must Come Out!"  OH CRAP!  The malignancy risk of Bosniak III cystic lesions is thought to be approximately 50%, however the reported malignancy rates range from 31% to 100%. The good news is that he feels the location of the tumor will allow its removal without much if any effect on my overall kidney function. More good news the National Cancer Institute lists the average life expectancy of kidney cancer at 14 to 15 years, well above the 5.5 years for myeloma.    

Dr. Thiel  said in the old days kidney cancer was seldom if ever found before it had spread to other parts of the body, but with new imaging like CT and MRI, it is often found earlier with a much better prognosis.  They usually find it early by happenstance, without any observable symptoms. How kidney cancer was discovered in the past is because of pain in the  back or side, and/or blood in the urine.  I did not have any of these symptoms, but now have noticed a low grade feeling in my lower left side.  This may just be my mind playing tricks on me, and all myeloma patients can relate to these feelings during their myeloma journey.   

So at this point the plan is to have Robotic Surgery(partial resection of my left kidney) on June 2nd  with a machine called the Da Vinci Robot. To me it looks more like a spider or octopus. Apparently this method provides for a quicker recovery and from what I understand Dr. Thiel is the best there is in the Southeastern USA.  If practice makes perfect Dr. David(Scissorhands) Thiel has performed thousands of surgeries and over 300 with the Da Vinci Robot.  In addition, I asked him about outcomes, and with a hint of humor asked if his patients dropped like flies after Robotic surgery? He said he has not lost anyone. Not a bad batting average!   

I asked if I would have radiation or chemo after the surgery.  It was a surprise to me but he indicated radiation will kill the kidney and there are no drugs which have shown efficacy in the treatment of kidney cancer.  The standard of care is to remove the kidney, a far simpler procedure than a resection, and with most people the remaining kidney will do the work required all by itself. However with people like me who have kidney insufficient from my myeloma, I would be back on dialysis, and that would not be fun. 

Cancer can be so inconvenient!  We had planned on being in Wisconsin for the summer starting in May, however this has temporarily derailed those plans.  We could have had this done at Mayo Rochester, but the Mayo system seems to operate like three separate hospitals.  I have had all the testing at Mayo and it is on their system, but because I am not a Mayo Rochester patient I can not get an opinion if I can go to Rochester for treatment without a visit first.  Dr. Thiel had said I should use his name when I called his counterpart in Rochester and I assumed it would make this a seamless transition.  It hasn't yet.  I guess I was surprised because of the close interactions of the tightly knit  myeloma specialist community at Mayo, or maybe that is just my misconception.  

​Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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<![CDATA[OH CRAP!  Can It Be A Secondary Cancer?]]>Wed, 10 May 2017 16:01:23 GMThttp://myelomasurvival.com/myeloma-blog/oh-crap-can-it-be-a-secondary-cancerPicture
I have been a little slow about talking about my recent visit to see Dr. Barlogie for a few reasons. I knew when I left I was SCR(Stringent complete response), no M spike, good light chain numbers, and a clean MRI of my bone marrow.    However, it has taken a lot longer than normal to find out about my MRD(Minimal Residual Disease) status, and if MRD positive what was my Gene Expression Profile (GEP).  I have been waiting and they say the delay in the GEP is because they can not find enough myeloma cells to run the test.   Now that is just outstanding.  The OH CRAP part comes in because when I got home and looked at my MRI output which had just been released, it had stated the following:

IIMPRESSION(3/17 MRI)
1. Complex left lower renal pole 1.9 cm cystic lesion. Further 
evaluation with dedicated MRI abdomen with and without IV contrast 
recommended.
2. Osseous structures are described in a separate report

I asked Dr. Barlogie if this was a problem, then wouldn't it have shown up as active in the prior year's PET scan.  He looked into it and found that it was in his words HOT in the 3/16 PET scan.  As with the MRI, the PET scan was not finalized by the time I left Mt. Sinai but was finalized after I had returned home.  I nor Dr. Barlogie made note of the following impression.

IMPRESSION(3/16 PET)
1. No hypermetabolic lytic lesion is identified to suggest active
multiple myeloma.
 
2. Mildly hypermetabolic ovoid lesion at the left lower pole should be
evaluated with dedicated multiphasic MR imaging with contrast.

After a few emails with Dr. Barlogie he  recommended I get an ultrasound and later a MRI to determine if this is renal carcinoma.  The results of these studies resulted in the following diagnosis.


I have a Bosniak III cyst (2.0 cm) in the inferior pole of the left kidney, and have an appointment with a Mayo surgeon, Dr. Klein at Mayo Jax on 5/17.  So OH CRAP, I may have dueling cancers!  You are your own best advocate and need to make sure you get copies of all your reports and read the summary.  If I hadn't, I may have been  waiting another year before this kidney issue was identified.   Hopefully we have found it in the early stages and it can be removed without removing one of my kidneys, which are already marginal from the original myeloma.  One thing for sure is I do not want to go back on dialysis. 

Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1


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