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Myeloma Voices

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For some time, members of the International Myeloma Working Group (IMWG), the IMF's research division, have been trying to identify and describe a group of patients without CRAB features.  Finally, Dr. Vincent Rajkumar, my co-chair in this project, has succeeded in bringing together the data, plus ideas and opinions from the IMWG members, to create new diagnostic criteria for myeloma. The criteria define a new "Pre-CRAB" group of patients who need treatment. A paper detailing the IMWG's updated criteria was published today in the journal Lancet Oncology.

This step forward has many important implications, not the least of which is the expectation that earlier treatment will lead to better outcomes!  This is the central idea of the IMF's signature Black Swan Research Initiative, in which early treatment is combined with close assessment of low levels of residual myeloma--minimal residual disease (MRD) testing--to push for therapy to achieve an MRD negative status that can lead to a cure.

The IMWG's updated criteria represent no less than "a paradigm shift in myeloma," said Dr. Rajkumar in a video interview.  "We are now willing to treat myeloma before symptoms happen. This is a big deal."  To read the IMF's announcement about the IMWG's updated criteria CLICK HERE

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In a recent paper in the journal Blood, Dr. Bart Barlogie and his team at the University of Arkansas in Little Rock claim they are "Curing myeloma at last: defining criteria and providing the evidence." This is a bold statement.  I would argue that while the paper provides a statistical/computer model, achieving and documenting true cure demands a follow-up of individual patients and cannot be predicted by a computer model.

But let's examine the approach taken here more closely to see why. In order to comment intelligently on this paper, one must search through the details of the methods used to define cure and provide the "evidence."  The term "cure fraction" is used in the paper.  It is derived from a combination of relative survival estimates (myeloma patient survival versus a patient without myeloma) and a complex computer model derived from a statistical approach used in 1982 for breast cancer. Is this a valid statistical approach to derive a "cure fraction"?  The authors of this statistical paper emphasize the constraints of the approach.  Two risk groups are required for the statistics to work.  Dr. Barlogie divides his patients into "high" and "low" risk so that this approach can be applied, but as readers are probably aware, the Mayo Clinic mSMART approach divides patients into three risk groups.  Which is correct or better?  We don't know.

After careful review, it appears that the "cure fraction" from the Little Rock "model" is considered to be: patients with "high risk" disease by gene expression profiling (GEP) who remain in complete remission (CR) for > 5 years and "low risk" patients by GEP who stay in CR for > 10 years.  Are such patients cured?  Clearly they are doing well, but the risk of relapse is not zero.  The label of "cure" is still just a statistical prediction, which is treatment and model dependent.  The outcome for each individual patient is determined by individual staging and prognostic factors, as well as non-myeloma related co-morbidities. Although calculating a "cure fraction" using the proposed model does allow comparisons between the different "total therapy" regimens used in Little Rock, it does not affirm that individual patients are actually cured. 

What is more helpful is to offer criteria that can predict a likely very good outcome at the start of therapy and/or early in the disease course.  This is the strategy of the IMF's Black Swan Research Initiative.  Using MRD assessment as a primary tool, it is possible to predict likely long remissions with complete remissions, especially with CR or stringent CR for patients with initial stable response.  Without claiming that patients are necessarily "cured" (meaning that there will never be a relapse even after 10 years), one can predict chronic disease control, which is most helpful to individual patients.  Thus, for example, in a young patient with good risk features--(ISS Stage I), normal F.I.S.H. testing (no t[4;14]; 17p-; 1q+ ), and normal LDH at baseline who achieves stringent CR and flow MRD-negative status--a very good outcome can be predicted.

The total therapy regimens clearly produce excellent outcomes for some patients. But in 2014, most patients and investigators are looking to novel therapy/transplant regimens that can be successful without the automatic double transplant approach plus other elements of the total therapy program.  The pioneering value of total therapy has triggered the search for other ways forward that can occur within the Black Swan Research Initiative, which allows use of MRD assessment to achieve the best outcomes.

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

11 Comments

My husband has been on revilimid (25) for four years, keeping him some what stable. In the last four months he has passed out on exactly day 28 of his cycle. All possible tests are done with every test negative. Have you ever heard of this happening to anyone else? We are desperate for an answer as his doctors do not see a connection. Thank you.

Dr Durie , I'm 63 yrs old now. At age 38 after suffering for a full year through misdiagnosis, I was diagnosed with MM and told I had 6 months to live. I won't go into all that happened in the next month but my first oncologist here in Daytona Beach Florida, was enough to put me in remission an send me to the amazing Dr Bart Barlogie in Little Rock Arkansas! I've had 2 bone marrow transplants and 1 tried stem cell transplant plus mega radiation therapy and 12 surgeries. I was also diagnosed with thyroid cancer 4 years ago and had radical surgery. I had such a high tumor mass by the time I was diagnosed that my whole right side was destroyed. I walked with a cane, (as much as Dr Barlogie hated it lol) till 2 years ago. I'm now in a wheelchair. But by the grace of God and 3 fantastic Dr's ( (DR JAGGONOFF ALSO) I'M STILL HERE. Just wanted to tell my tale in short for as you well can guess there's plenty more tale lol I love helping other MM patients an have utmost respect for you. Thanks for reading. Sincerely, joy tordini

A fellow myeloma patient had the double transplant at U of A. She lasted less time than I have with a single transplant at Stanford. She went through several clinical trials and other treatments before passing away this year. I'm going to be 6 years past transplant in Feb 2015.

I'm starting to think that this disease is very different for all of us depending on factors I do not understand.

Hello Dr. Durie, my husband is 43 yrs old and was diagnosed Feb 2013. He had 16 cycles of induction therapy and had a SCT in Aug 2014. Before SCT he had achieved stringent CR halfway through the 16 cycles. What would your recommendation be for maintenance flowing that is our next step. Your input is appreciated - thank you!

Just for clarification, I suspect there's a typo in the 2nd paragraph that defines "cure fraction". The paragraph states the denominator as "patients withou myeloma" but I think this should read "patients WITH myeloma".

My question: Since risk factors can change with treatment, is high-risk in the Arkansas calculation determined at diagnosis or after TT therapy? BTW, can GEP results also change before/after treatment?

I have been myeloma free for 1 year. After Rev, Dex and Carfilzomib via Dr. J and the U of Mich Cancer Center. Optimistic but realistic that genetics, chemistry and luck all play a role. Just thankful to have the quality years and quality care I received.

I am 13 years from diagnosis and in substantial remission with paraprotein around 4 (from 21) but at 70 years the issue is always the side effects of the treatments I have endured including transplant and thalidomide - so "cure" is a relative word for me - as my doctor says - "you will not die of myeloma but of the side effects of the treatment"! So I recently had a stroke 'out of the blue" and I have major skeletal/tendon pain issues as well as heart palpitations (needing a pace-maker) - all of which may or may not be related to my treatment-who can ever know- but given my family history i am "sicker" than any in my family tree has ever been at my age. So if we have a "cure", I applaud your call to now encourage less aggressive ways to arrive at that 'cure".

In a paper published today in the journal Cancer Cell, the researchers report how the drug, known as DTP3, kills myeloma cells in laboratory tests in human cells and mice, without causing any toxic side effects, which is the main problem with most other cancer drugs. The new drug works by stopping a key process that allows cancer cells to multiply.
Our clinical trials, the first of which will start next year.....

Kindly comment on this advance from the journal Cancer Cell.

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The IMF Co-Hosts Patient & Family Seminar in Slovakia

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On October 3rd and 4th, in conjunction with Slovak Myeloma Society (SMS) & Patient Club, the myeloma patient association of Slovakia, the IMF co-hosted the second annual Slovak Patient & Family Seminar in Liptovsky Jan in the beautiful region of Low Tatras in northern Slovakia.

It was my pleasure to attend the seminar and have the opportunity to continue to expand the IMF's relationships with patient organizations throughout the world that share the common goal of supporting and improving life for myeloma patients.

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Mr. Hrianka Miroslav, a representative of SMS, moderated the seminar and did a fantastic job organizing a highly informative and enjoyable meeting. The seminar, which welcomed 130 patients, family members, and physicians from different cities across Slovakia, was a great success.

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The seminar began with a patient forum, which included an uplifting testimony from a Slovak myeloma patient who focused on the idea that "every day is a new beginning." This presentation was quite moving and was followed by presentations on activities of several myeloma patient associations in Central Europe. These included presentations from:

  • Ms. Alice Onderkova from CMG (Czech Myeloma Group) - Czech Republic
  • Ms. Kinga Kocemba from Carita - Poland
  • Ms. Margareta Bartosova & Mr. Hrianka Miroslav from SMS (Slovak Myeloma Society & Patient Club)

The second day of the Patient & Family Seminar began with my presentation. I shared an overview of the IMF, our mission, goals, achievements, and the IMF's international initiative: the Global Myeloma Alliance (GMA). Mr. Hrianka Miroslav, meeting organizer, is representing Slovakia in the GMA.

During my presentation, the IMF's message was well received and understood by the Slovak patients. I enjoyed sharing information about the resources and support the IMF provides to patients worldwide.

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Following my presentation, Dr. Roman Hajek of the Czech Republic shared information about new myeloma drugs, treatment side effects, and clinical trials. He also provided personal consultations for patients. The participants paid great attention to this crucial presentation.

One of the things I will take away from this seminar is an appreciation for the remarkable relationship between the Czech and Slovak people. These two countries used to be one, Czechoslovakia, until a political split happened smoothly in 1993. This peaceful divorce is still called the "Velvet Revolution." However, as independent as the countries are now, Czech and Slovak people have an excellent relationship and strongly support each other, which I have seen in their fight against myeloma. I could see this relationship in the very well received presentations from Dr. Hajek and the Czech Myeloma Group. It is an inspirational relationship that should be taken as a great example all over the world.

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Back to the seminar! Day two also featured the following interesting presentations: "Integrative Myeloma Treatment & Logotherapy" from Dr. Pavel Kotoucek of Homerton University Hospital in London; "Physiotherapy and Spa Treatment" from Dr. Eva Kmetyova of University Hospital in Bratislava; "From Diagnosis to Ambulatory Monitoring of the Disease" from Dr. Zdenka Stefanikova of University Hospital in Bratislava; and "the Art of Healthy Living, Separate Diet" from Prof. Katarina Horakova, DrSc, of Slovak Technical University in Bratislava.

I am very grateful to Mr. Hrianka Miroslav--who is a caregiver to his very brave wife Milada, who has been fighting myeloma for nine years--for organizing such an informative and enjoyable meeting. I am looking forward to attending the 2015 Slovak Patient & Family Seminar!

Nadia Elkebir
IMF Director of Europe and the Middle East

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A Patient Reports on Her Experience Serving on the IRB Board

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"Sitting at the table I felt prepared. I knew the language they were speaking thanks to all the education the IMF has given me....The two hours flew by."

As I drove down the crowded highway on a rainy Thursday morning, I asked myself, "What did you get yourself into this time?"

I was headed for my first institutional review board (IRB) meeting as a board member. The traffic was horrendous and I felt overwhelmed. I thought about turning the car around and driving home.

But I had an important job to do. The primary responsibility of an IRB is to protect the rights and welfare of people participating in clinical research and to function as a kind of ethics committee focusing on what is right or wrong and what is desirable or undesirable.

To prepare for the meeting, I had reviewed 13 clinical protocols, informed consent forms (IFC), and other important documentation related to each proposed clinical research trial/study. My head was spinning. Would I be able to contribute significantly to the discussions about this important process?

Why Are IRBs Necessary?

Federal regulations require all proposals for research involving human subjects that receive support, directly or indirectly, from the federal government to be submitted for prior review to an IRB. Prior to the 20th century, research ethics were primarily governed by individual consciences and professional codes of conduct. But early in the 20th century it became evident that many research subjects were being abused and left uninformed. The Tuskegee syphilis study, the experimentation done by Nazi physicians during World War II in concentration camps, and the Milgram obedience experiment are some of the most notorious of these abuses. They resulted in the National Research Act of 1974 and the establishment of the ethical principles of the Belmont Report, which guide the actions of IRBs.

As I approached the parking garage on that dismal Thursday morning I gave myself a much-needed pep talk. I know it is always important to hear the patient's voice, but I was questioning myself. Will I be able to provide the patient's perspective? Will I speak up or be intimidated by the doctors and other scientific board members? Will the questions I ask and the concerns I pose be taken seriously? I was the "unaffiliated, unscientific" member of the board.  And none of the protocols I reviewed had anything to do with myeloma--a subject I felt comfortable discussing.

Taking a Seat at the Table

I was greeted warmly as I entered the meeting room, and invited to take a seat at the table. When I had previously visited to observe the IRB, I sat in the back of the room. As soon as a quorum was present, we began our discussions.

Sitting at the table I felt prepared. I knew the language they were speaking thanks to all the education the IMF has given me. I just didn't know the specific drugs that were being researched. I felt comfortable participating in the meeting. The two hours flew by.

As I entered the elevator to return to my car, the hematologist/oncologist who chaired the IRB pulled me aside and thanked me. It is very important to the IRB process, he said, to see things through the eyes of a patient, and he added that the other "affiliated, scientific" members really appreciated my participation. I guess they did take me seriously. I didn't even notice the traffic driving home.

I will have a larger role as a secondary reviewer (reviewing an informed consent form and presenting recommendations to the entire board) for one of the protocols that will be on October's agenda. Once again I know I will be nervous, but I am up to the challenge. I encourage anyone who has an interest in the research process to contact your local IRB office and get involved. You will be truly appreciated.

Cynthia Chmielewski

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This past weekend, "60 Minutes" focused on the high cost of cancer drugs. Although the discussion centered on treatments for colon cancer and chronic myelogenous leukemia, it is an across-the-board problem. Lesley Stahl interviewed experts at Memorial Sloan Kettering Cancer Center about the very high cost--$11,000 a month--for a new drug, Zaltrap, to treat colon cancer, versus $5,000 a month for a very similar drug, Avastin. The prolonged survival benefit of 1.4 months did not seem to justify the doubled cost. After a New York Times op-ed that made this point was published, Sanofi, the manufacturer of Zaltrap, immediately agreed to cut the cost in half! This rapid reaction prompted a chain of other reactions revealing the complexities involved in determining current cancer drug pricing.

The basic problem is that many new cancer drugs cost approximately $100,000 a year, and patients may need to take more than one at a time. Few patients can pay such costs directly. This is where the complexity starts. Prices, drug manufacturers argue, are linked to development costs that often amount to several $100 million to as much as $1 billion.

Dr. Hagop Kantarjian from MD Anderson Cancer Center in Houston takes issue with this argument. He examined the costs for the spectacularly successful drug Gleevec, to treat and control chronic myelogenous leukemia with indefinite, continuous use. The cost for Gleevec in 2001 was $28,000 a year. The development costs were recouped within the next decade. The Novartis Corporation has now earned a total of approximately $45 billion from Gleevec alone. The problem is that the cost of Gleevec is now $92,000 a year. What justifies that increasing cost over time? And what justifies the fact that patients in the US routinely pay 40-80% more for their drugs than do their European, Canadian and Australian counterparts?

The major justification offered by a representative of the pharmaceutical trade group on "60 Minutes" is that continued expensive research and innovation are required to develop new and better drugs. Who should pay for that innovation? Certainly not desperate cancer patients who are struggling to pay for lifesaving therapies.

After watching the interviews on "60 Minutes" I concluded that a financial structure that allows pharmaceutical firms to recoup the original investment and rewards them for their risk is fine. The system, however, must price those lifesaving drugs in a way that respects the needs of patients. I believe that the funding of additional and new innovation should be the focal point of a separate dialogue: How can we reduce drug costs and also make drugs available in a more realistic fashion in the global marketplace?

An honest dialogue would require all parties to come to the table - patients, manufacturers, legislators, government entities such as Medicare (which currently, by law, must pay full price for drugs), large hospitals and clinic groups (which negotiate discounts), insurers, and physician care providers (who are largely caught in the middle of complex buying arrangements). This must not be a blame game. Faced with an explosion in cancer drug costs, I believe there is enough momentum to find equitable solutions.

Any ideas for solving this problem will be most welcome and, perhaps, can initiate the necessary dialogue. A starting point for the conversation on behalf of myeloma patients might be our next International Working Group (IMWG) Summit, where we can invite all concerned parties to address this issue. 

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

15 Comments

Currently all of the costs of Cancer drugs are being borne by the patients and thier insurance providers. In the case of MM, the population of patients needing the new Noval agents is relatively small percentage of the total poplulation as a whoe.

Thus the cost needs to be spread out to a larger base. This can be done by adding a "research charge" to all drugs including over the counter non-perscription drugs. Thus the cost of a cancer drug like Revlimid would be spread out. The results would be a small increase in the price of all drugs but a big reduction in the price of cancer drugs bone soley by the patients and their insurance carriers. How that research charge then gets allocated back to each drug manufacturer I will leave to someone else. However, it would be some form of allocation based on cost.

Dear Dr. Durie,
I'm one of those patients who is finding out that the annual out of pocket cost of my chemotherapy drug, Revlimid, will be approximately $8,600 in 2015. I was recently notified by my former employer, JP Morgan Chase, that they are eliminating group medical/drug/dental plans for medicare eligible retirees. They've hired a consultant, Towers Watson, to help us find individual medicare supplemental, drug part D and dental plans. Recently JP Morgan and Towers Watson held information sessions for retirees in which they told us that the individual coverage we would get would be, in most cases would be better and less expensive than what we had under the group plans. What a joke!! I've been told by Towers Watson that under the least expensive drug plan my annual out of pocket cost for Revlimid would be $8,600. This is a 615% increase over my cost of $1,200 in 2014!!! What can a retiree on social security do about this? Medicare should cover oral chemo drugs as they do intravenous drugs. This would really relieve seniors of the fear they won't be able to continue their oral chemo regimens. I don’t know what to do. Please help me. Thank you for your consideration.
Pamela Shiells

Do U.S. pharmaceuticals make up low prices charged in other countries by high prices charged in U.S.?

Should the IMF advocate lower prices for Medicare patients on the high priced oral medications?

Or, again on that theme, should there be more advocacy for parity for Medicare patients (fed.law)?

The retail price in Medicare law means that even with Part D RX insurance the copay percentage is very high.

Thank you for listening to my questions/comments.

Dr Durie writes, "Prices, drug manufacturers argue, are linked to development costs that often amount to several $100 million to as much as $1 billion." While the claim about development costs is no doubt true, simple arithmetic shows that prices are NOT linked to those costs.

According to the NCI SEER database, there were 83,367 people living with myeloma in the US in 2007. If half of these are on Velcade at $100,000/yr, it generates $4.2 billion for Mellenium in just one year. If half are on Revlimid at a similar price, it generates the same amount for Celgene. That's just one year, and that's just for the US. Drug patents last 20 years in the US. Worldwide, there are probably three times as many myeloma patients in developed countries where they can get treatment with these drugs. Thus, the pricing corresponds to total revenue of perhaps $250 billion for one drug. Even if development cost $1 billion, it is clearly not the thing that drives the price.

For cancers that are more widespread than myeloma, these numbers favor the drug companies even more.

It might be truthfully claimed that for each successfull drug drug companies must also spend development money on many drugs that fail and produce no revenue. However, in most cases difficulties with a potential drug are identified early enough to limit the loss to tens of millions of dollars, not hundreds of millions or a billion. So those costs are also insufficient to explain the high prices.

The truth is that there is no justification for the prices is greed (unless greed counts as a justification). As with any product, the maker wants to earn as much as possible. The only reason that it's possible here is the lack of a free market. The market is distorted by an overly-generous patent system, by foolish laws like Medicare's prohibition on price negotiation, and by our system of third-party payers for health care.

The only solution I can imagine is regulation: governments should determine prices. The drug companies will claim that this stifles innovation, but the numbers above show that strong motivation for new drug development will continue even if the prices were cut by a factor of 10.

Regards,
Larry

I have myeloma cancer there is no way i could pay 10,000 a month for just one of the drugs i must take being a retired city worker the drug companys should give these drugs out for no charge and the goverment should match what they give out with tax write offs to the company, i know with my drugs they dont even give you full remision, one big question i have is what happens to all the donation money collected for cancer does anyone watch where and what this money is spent on. know one should die because they cant afford drugs to keep them alive.

The fact that the manufacturer immediately lowered the cost tells you that there was no reason for the higher cost except for greed. Also, why pay twice as much for a new drug when the old, cheaper drug works just as well?

I agree the cost of drugs to save one's life is very expensive. To further the frustration of trying to survive, when trying to apply for funding assistance, most organizations only consider the annual income of a family and not the expenses. Thus, you're on your own.

The high cost of drugs causes me to wonder who is slipping through the cracks because they can't afford co-pays for life savings drugs. It is certainly understandable that research has to be funded,someone has to pay for the production of drugs and everyone else in between, but there has to be a more equitable solution.

I'm still trying to figure out how and why I was diagnosed with Multiple Myeloma and what it will take to be cured and if I can afford it.

The drug companies should have to prove their development costs to set the recouping time to determine a fair cost for their drug. Huge win falls for the companies should be government regulated. To pad the pockets of big corporations, CEO's and stockholders on the back of cancer patients who are already fighting physical and financial battles is unconscionable.

Dr. Durie,
My comment is only somewhat related to this issue. I need to start another regimen, after my Revlimid pooped out recently. I cannot understand why , to use a newer medicine, I have to have failed Velcade or any other drug as well. Once a new drug is proven safe, that's it - it's not half safe. The rarionalizations re safety and liability trouble me.Iit seems this is a ploy by the drug manufacturers to make sure they get the most play from the older drugs possible.

We are rally happy to see you address this problem. it is not only a big the patient, but the insurance companies.

To even quote Dr. Kantarjian in any way is insulting to we cancer patients/

He and his ilk believe in QALY, comparative effectiveness and/or complete lives theories which deny needed care to patients through a perverse view of value.

They rely on averages to determine how care will be given. Under their American version of health care 9akin to the UK system which is imploding as we speak) i would have been denied care for my mutliple myeloma in 2009 as the expected averages didn't justify it.

If you practice medicine based on averages, you will satisfice and only achieve results for the patient that are average, leaving little room for people like me who lost the genetic lottery to roll the dice and beat the odds.

Our goals should be to increase the average life expectancy of cancer patients through medical innovation and novel therapies, not merely to meet the existing average.

The patient sets the goals in care and value is derived by doctors and the health industry meeting those goals.

Doctors like Dr. Kantarjian do not place any value on living "only" a few months - but patients can and do.

Bob Tufts

If the government is funding the research, it should have a say in the process of pricing the drugs. Also, there are many intelligent and creative people outside the US very well qualified to do the research but who work for one tenth or one hundredth of the salaries that are paid to researchers here and they should be employed in heir country of origin to do the research in drug development. This approach is currently used by giant US corporations like, GE, Google, IT industry, major engineering corporations like Bechtel, etc to name a few to cut down the research and development costs and hence reduce the drug costs to patients. I myself being one of them.

Regards
Mohammed Siddiqui

I have lived 5+ years not average. After a multiple myeloma diagnosis thanks to a pill based regimen that was a result of "small" changes.

Systems like those in the UK that rely on cost to supply care (QALY) would have denied me access to life saving care and probably taken my life in 2009.

When we examine cost alone we end up with one size fits all medicine that treats patients as "average". In my case this average would have meant death.

We cancer patients are not average.

The goal should be to raise the "average" survival rate (which has been done in cancer) not to satisfied and keep the same average.

ARE YOU AWARE OF THIS???????
Last night 60 Minutes did a piece on the high cost of cancer drugs and how it was destroying middle-class families and one of the greatest reasons for personal bankruptcies. If you really want to report the real crime is that these drugs are provided for absolutely no cost whatsoever to illegal aliens. They can walk into my wife’s hospital, a major cancer institute here in Atlanta and everything is covered from the diagnosis, all testing, cat-scans, cancer drugs, all Chemo treatments, all office visits……..Absolutely everything is covered by the government at no cost while our citizens have to virtually wipeout their entire life-savings and in many cases file for personal bankrupty. This is the real crime……… It would be nice if you discuss this in meetings.

Yes yes yes the cost of many cancer drugs is extremely high BUT there is so much assistance out there no one should ever have to skip or not continue to take their life saving drugs. LLS ,state run help and even the drug companies themselves will and do help. Example when I found myself without insurance and needing to take Revlimid for MM and thanks to assistance never had to pay more then a 60.00 copayment which the LLS picked up. So please let people know .

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In recent weeks, you may have seen full-page newspaper ads signed by 160 award-winning scientists from around the world pleading for funding to help save the planet in the face of climate change. This week, the United Nations convened what the New York Times called "the largest gathering of world leaders ever devoted to climate change."  The need is clear, but momentum  to take action has been strangely lacking.

Toxic chemicals not only affect our planet, they affect the humans who inhabit it. On September 10, the IMF held a congressional briefing in Washington DC that presented information about the link between chemicals at the 9/11 sites and cancer. There are clear links between exposure to certain environmental toxins and myeloma, but the cause of myeloma has typically been listed as unknown. There is no momentum to investigate further or try to prevent myeloma.

We have knowledge about environmental toxins that could help make myeloma a preventable disease; there is a long list of chemicals that cause cancer, and there are thousands more--equally or more toxic--in widespread use that have never been tested to see if they cause cancer.

Where is the motivation to use energy and chemicals wisely, and to begin de-contaminating our planet and its people?

Ever so slowly, the tide is beginning to turn. The Rockefeller Brothers Fund announced this week it will sell assets in fossil fuel companies and invest in cleaner alternatives.  Germany is building massive wind farms off shore to make a meaningful contribution to cleaner energy generation. The European Commission now requires toxicology testing for all new chemicals, and older chemicals are under much tighter review. Reduced use of chemicals is now on the agenda.  And innovative, environmentally sensitive companies such as Pylantis are working to replace petrochemical plastics with non-toxic, recyclable and compost-ready alternatives. Even China has announced a multi-billion-yen program to reduce and shift away from pollution.

study published recently in the journal Nature illustrates the need to eliminate toxic chemicals, not just in the environment, but in our diets as well. According to NPR, the study suggests that for some people, diet sodas may alter "gut microbes in a way that increases the risk of metabolic diseases such as Type 2 diabetes." The change in gastrointestinal microbes leading to diabetes and obesity is also linked to myeloma and other cancers (breast cancer and certain pediatric cancers), again demonstrating that there is a multi-system, multi-step disease causation process. In the case of diet soda, it is potentially a reversible process.

Reversing our exposure to toxic chemicals requires recognition of their effects: agricultural run-off leaks into rivers, lakes, and oceans, and then into fish and into food, causing DNA damage and reducing the strength of the immune system. Inflammation triggers the growth of damaged plasma cells in the case of myeloma, or of other cells, causing other types of cancer.

Cancer prevention requires a multifaceted approach that focuses on eliminating ALL toxic chemicals. Safe chemicals, real food, clean water, and clean energy are critical elements for insuring our good health.  

Is it too late? Let's hope not! We really need our planet--one on which myeloma is decreasing, not increasing.

I invite members of the myeloma community who have an interest in raising awareness about pollution and toxic chemicals to think about what might be done to change the momentum and get rid of the lethargy! I welcome your thoughts!

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

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One way that we might reduce our exposure to toxins born of our technologically advanced society, is to have voluntary "Low Tech Days" wherein we could participate as we are able to do so, in reduced use of all products that make our lives more convenient but much more isolating and toxic.

I was diagnosed with Stage III-b Multiple Myeloma, type lambda, with 90% marrow plasma cells in March of 1993. I took part in a conference in Hamilton, Ontario, in 2002 in Hamilton, Ontario, Canada that dealt with the pervasive use of synthetic organic compounds since WWII for cosmetic and agricultural use as weed killers, and as industrial degreasers, particularly in the then-burgeoning automobile industry. The point was made very strongly that this class of chemicals is NOT water-soluble, but is instead fat-soluble. The meaning of this is that human exposures are not excretable, with the exception of lactating mothers, who thus provide a lifetime of exposure to their infants; they accumulate in the human body (and in the bodies of grazing animals, for example, which are then eaten by humans, increasing the accumulation) making the concept of 'maximum allowable exposure' meaningless. Yet our government health agencies continue to establish these 'maximum exposure' standards. This is an area of public policy that must be addressed by our societies by educating the public and of course, the legislators and public-policy makers. I would expect that those who have a financial interest in the continued use of fat-soluble chemicals will strongly oppose putting restrictions on or eliminating the use of these pollutants, but the people must ensure that their representatives in government are not influenced by the corporate interests.

As a New Yorker, we recently had a first responder fire fighter come to our MM support group. He now is in search of a donor match for an allo transplant. The suffering he has endured is awful. Who would have thought his good deed of helping with the 9-11 cleanup would result in his exposure to toxic chemicals, leading to his diagnosis of MM.

Today, 9-25-14, three firefighters, also first responders passed away due to Cancer, yes, three in one day. Could not agree with your article more....where are we headed without serious change?

Here is a long standing resource about chemicals' impact on our lives.

http://healnatl.org/

Thank you for this fine article. I live in a town called Forest Knolls where the Bay Area Air Quality Board (SF area) states that our little town has the worst pollution due to wood burning stoves. Even though this has been declared, it is an uphill battle to get people to change their burning habits to something more clean. Some people even have stated that they like the smell or it makes them cozy. I spent 45 yrs. running, biking, etc. in our community only to realize that this may have caused my MM. Thank God that we have a small group that are involved in trying to make change. Probably won't be in my lifetime.

In our private lives, toxic chemical for cleaning are inexcusable, as well as applying toxins to your yard to make it a golf "paradise." Why not try white vinegar as a purifier? Baking soda has its uses.

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So much has been written and said about myeloma this year. But what is the bottom line for important changes in 2014 versus 2013 and before? Here are the high points in the context of the IMF's 10 Steps to Better Care, comprehensive guidelines with diagnostic and treatment information designed to ensure patients receive the best care.

Step 1: Know what you're dealing with. Get the correct diagnosis.

Early diagnosis is the new theme. Now we can start to treat myeloma before anemia or bone and kidney damage emerge.

As a result, quality of life for myeloma patients will improve forever. Triple therapy with KRd (Kyprolis, Revlimid, low-dose dexamethasone) in high-risk smoldering myeloma is producing MRD-negative status (no residual disease as shown using the new flow method) and is undoubtedly the pathway to cure for some patients.

Step 2: Tests you really need.

Sensitive imaging techniques detect very early active disease. Whole-body, low-dose CT should be considered if there is a question of bone disease at diagnosis or relapse. PET-CT picks up active myeloma inside and outside bone.

Step 3: Initial treatment options.

Revlimid/dexamethasone (Rd) on a continuous basis is a new, simple option for ongoing disease control, especially for the elderly and/or unfit/frail patients. Triple therapy with Revlimid/dexamethasone and a proteasome inhibitor gives superior outcomes for fit patients with or without initial auto transplant. FISH testing has become more complex--but we still do not know how to treat high- and low-risk patients differently, beyond individual, careful discussion with your doctor.

Step 4: Supportive care and how to get it.

Despite recommendations to the contrary, I believe it is still very important to limit the use of bisphosphonate therapy (Aredia and Zometa). Osteonecrosis of the jaw is a concern with long-term use. Since novel therapy combinations produce deeper response than in the past, ongoing bone destruction is less often a concern, and any survival benefit with very long-term Zometa use remains questionable.

Step 5: Transplant: Do you need one?

Autologous stem cell transplant (ASCT) is still an important treatment option. About 20% of patients have sustained remissions beyond 3 - 4 years with ASCT. ASCT with high-dose melphalan should be looked at as a consolidation that can provide benefit. It will be some years until we know which patients benefit the most.

Step 6: Response assessment: Is treatment working?

The new flow cytometry MRD test provides important pathways forward both for drug development and to achieve cure. When a new therapy leads to MRD-negative status for a patient, it can indicate that one therapy is decisively better than another. This can save millions of dollars and years in drug development time. As noted above, achieved MRD-negative status is the pathway to cure for the individual patient. You can read my blogs explaining this in more detail here, here, and here.  

Step 7: Consolidation and/or maintenance.

Consolidation and maintenance are both ways to achieve a better response, either within a few months or with ongoing therapy. The clear benefits still need to be balanced against quality of life issues and costs--and discussed with your doctor on an individual basis.

Step 8: Keeping track of the myeloma: Monitoring without mystery.

The HevyLite test provides a new blood (serum) test to accurately measure response at a very low level. It is a more sensitive and precise test for low-level monitoring versus the IFE (immunofixation electrophoresis) test, especially for IgA myeloma.

Step 9: Relapse: Do you need a change in treatment?

It remains important to assess possible relapse very carefully. Maybe one lab test is just a mistake? Double check. Are there CRAB features?  Is new treatment really needed? If new treatment IS needed, can a prior successful therapy work again? Discuss the options with your doctor.

Step 10: New trials: How to find them.

It is exciting to see truly new types of therapy having an impact! Anti-CD38 antibodies will definitely have a role. The striking response with measles virotherapy is a breath of fresh air in thinking about myeloma. If virotherapy really works, could a single shot cure the disease despite all the mutations and risk features we keep hearing and reading about? Perhaps. And wouldn't that be amazing? So let's see what happens with the new virotherapy trials Dr. Stephen Russell and the Mayo Clinic team are starting this fall. The first patient who received the massive dose of measles virus is still doing well.

As always stay tuned for updates: we have ASH 2014 to come!

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

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Very helpful article .Thank you Dr Durie. My observation relates to good practice and the management of side effects. Bortezemib has proved a very effect agent but for many of us causes severe PN even if administered SQ. Also many patients do not respond to conventional therapy and are increasingly resorting in desperation to homeopathy....infra red socks being the latest. We seem to understand little of the processes at work with PN. Would It not be possible to start to look at this and develop best practice guidelines for its management. Not as sexy as a new drug but would have a considerable impact on Q of L for many of us.

have been diagnosed for 2-3 years with smoldering multiple myeloma. Dr. Pierce with the Salem Hospital, Salem oregon is my physician. Currently am being seen twice a year for testing. Just monitoring. Is there a tretment now or just do as I am instructed - monitoring only?

Which HevyLite chain test should be ordered?

There are 3 heavy light chain tests.

Do you order, IgA, IgG, & IgM to be comprehensive?

Or if you are IgG do you only order the IgG test?


thank you

Please will you clarify if Fosamax is listed in the bisphosplonate therapy with Aredia and Zometa? thank you

Thanks for info... its good to read articles about myleoma

Hi Dr. Durie, My wife is deadly afraid of Aredia. The doctor keeps insisting she take it once a month because of high and low calcium and bone lesions. She has had about 6 infusions. Her calcium today, Sept 18, was 8.0 in a range of 8.4-10.2 mg/dl. She wears two large partial dentures and has a history of loose teeth and weak gums. That is why she is so afraid. She is 81 years old and I am doubtful that Aredia is going to strengthen her bones at this point in her life. If you need more information, I will gladly send it. Thanks much for any input you can make about this. Edward Palumbo
P.S. We had the pleasure of hearing you speak at a conference in Paris 4 years ago.

I heard that the woman who was successful with the measles vaccine has relapsed.
Is that true or just the tumor on her forehead reappeared that was radiated and mitigated.
Thank you for all of your insightful information and opinions on upcoming treatments.
Best of luck with your research and information gathering.
JMZ

Revlimid with CLL Lymphoma and MM?

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Recently there has been discussion among some myeloma patients concerning the need for fully personalized myeloma treatment. Is there a benefit to this type of approach? Intuitively, the answer is "yes."  But I would argue that "no" is the better answer.

Let me explain. Yes, there are many variants of myeloma which could be considered individually and personally. These include secretory myeloma (IgG, IgA, IgD: Kappa/Lambda only --- ) ; non-secretory myeloma, plasmacytoma, plasma cell leukemia, extramedullary disease and more. But there is a fundamental similarity in biology. Immunomodulatory drugs (IMiDs) (e.g. Revlimid and Pomalyst) combined with proteasome inhibitors (e.g. Velcade and Kyprolis ) produce excellent responses for most subtypes of disease. Even in the relapsed/refractory setting, Kyprolis/Pomalyst/DEX produces responses (>/= PR in 70%), including in patients with high-risk 17P- disease. Long remissions occur for many patients.

Thus, although it is now known that myeloma cells have hundreds of mutations in different subclones, most of these are wiped out by newer novel combinations. The subclones which persist or recur are the ones which require special attention.

Fortunately, a new Flow MRD test, which is highly sensitive and can be used to identify and sort residual clones, is ideal for studying such resistant subclones. A vital element of the IMF's Black Swan Research Initiative is studying the patterns of resistant disease--which are already emerging--and using this knowledge to guide treatment selection.  Figuring out how to mop up disease that remains after initial therapy is much more manageable, in my view, than attempting to individually tailor treatment at the outset.

It appears that broadly applicable relapse therapies can be developed. Studies from single cells or clones from individual patients provide clues for successful approaches that can be applied broadly to others with similar subclones.

The opposite approach of attempting to target each of many, many individual mutations is truly challenging and, I believe, ultimately not feasible. There are too many individual mutations and too much time and expense needed to develop multiple targeted therapies.

If key so-called "driving mutations" can be found, this will be the answer for new drug development. But, again, these therapies will be broadly applicable to treat patients with resistant disease and/or combined with current treatments to start curing patients! The anti-CD38 antibody therapies are examples of this type of more broadly applicable agent that can significantly contribute to better outcomes.

So, although studies of individual patients are extremely helpful, the goal is to have broadly applicable therapy--to "lump and not split" and learn more from treating larger numbers of patients together, not separately. Myeloma can be divided into apples and oranges and maybe even pears, but not a complete fruit cocktail, which would be counter-productive from the standpoint of both diagnostics and treatment.

The argument against fully personalized therapy is therefore very important in the way that myeloma research moves to achieve the best results for all patients in the most rapid fashion.

Stay tuned as the Black Swan Research project moves research in this direction!

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

7 Comments

I would ask if it is really necessary to bomb the entire country when there is only one small pocket of insurgents that you want to destroy? Why use R/V/d when V/d alone might work as well or better and give the patient a better QOL?

I disagree. If you are the patient who needs personalized therapy I am sure you would want this therapy in order to survive. Also, being a mathematician, I have seen individual cases in math which led to generalized theorems which then become very useful. Just my opinion Thanks Bob Withelder

Although I do understand your argument here, I wonder if a particular approach for any given patient might at least have an expected response based on blood type?

Please write to the stockholm commitee for medicine to nominata Dr Durie for the Nobel Prize in Medicine .

His work and dedication have saved thousand of lives and may eventually bring about a cure for a cancer that affects hundred of thousands of young people

Thank you

Dan List

Dr. Drurie
Thank you for your generous time and support.
I met you at the ASH convention in New Orleans after I gave the presentation at the IMf grants? It was my pleasure.
Thanks again,
Dan List

We read that Revlimid cannot be used if the patient has both CLL Lymphoma and MM. Is this true?

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The IMF Strengthens International Relationships in Europe

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The IMF continued to strengthen its international relationships with patients, advocacy groups, and biopharmaceutical companies focusing on myeloma research with meetings in Europe this month.

On September 5th and 6th, the IMF, in conjunction with Czech Myeloma Group Foundation and KPMM (Klub Pacientu Mnohocetny Myelom) hosted a Patient & Family Seminar in Lazne Belhorad, Czech Republic.

I attended the seminar and shared with the more than 110 patients, family members, and physicians in attendance information about the resources and support the IMF provides to patients worldwide.

The meeting marked a special occasion for KPMM - the organization's 10th anniversary. The two-day seminar opened with a well-received video from IMF President Susie Novis congratulating KPMM on its success over the past 10 years.

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The seminar was educational, lively, and enjoyable for all who attended thanks to the tremendous hard work and professionalism of Iveta Mareshova and Alice Onderkova of KPMM. From the medical presentations and patient interactions to the beautiful location of the Tree of Life Resort, complete with a lake, the meeting was a huge success.

The first evening of the seminar also welcomed lively local entertainers: a magician and ballroom dancers. The entertainment and welcoming atmosphere put patients at ease and encouraged them to socialize with one another.

The educational program began during the second day of the seminar. Dr. Roman Hajek presented news about myeloma research and treatment developments, while Dr. Petr Hylena described the accomplishments and activities of KPMM over the past year. 

Dr. Miroslav Hrianka, president of the Slovak Myeloma Society, also attended the meeting and spoke about his group's activities and the treatment landscape for patients in Slovakia. The myeloma communities from the Czech Republic and Slovakia have a close relationship, supporting each other and working together.

Patients living with myeloma told stories about enjoying their lives and experiencing new things no matter the heaviness of the disease, which provided inspiration to all in attendance. We heard about and saw pictures of the exciting life of a myeloma patient who decided with his wife not to allow his myeloma to run his life. He and his family travel the world to hike, walk, swim, and enjoy other physical activities. It was very touching and definitely inspiring.

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The rest of the afternoon included a presentation on changes in social security in the Czech Republic, presented by Lea Janku; a panel discussion that included lively questions from the audience; and breakout sessions for more concentrated Q&A discussions. With beautiful weather, the afternoon Q&A sessions were conducted outdoors by the lake. Dr. Roman Hajek led a session on clinical trials, Dr. Vladimir Maisnar led a session on the management of side effects, and Dr. Petr Pavlicek led a session on alternative treatment approaches.

The meeting ended with an enthusiastic "thank you and see you next year" from all of the participants. This very successful meeting was a wonderful way to celebrate KPMM's 10th anniversary.

I also visited Boudry, Switzerland this month to meet with myeloma researchers at Celgene Europe's headquarters. Celgene is a developer of important myeloma therapies that have made an impact on many myeloma patients around the world. The company's therapies include Thalomid (thalidomide), Revlimid (lenalidomide), and Pomalyst/Imnovid (pomalidomide). Celgene scientists continue their commitment to myeloma with research on additional therapies.

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During the trip, I visited Celgene's Boudry research laboratories, which were impressive and very well organized. I was happy to see the space where the exciting work is being done.

I then shared with 15 researchers and Celgene Europe employees in the meeting room--and many more on video--the important work the IMF is doing with myeloma patients in Europe and around the world. In addition to learning about the IMF's patient education, support, and advocacy efforts, the audience was very interested to learn about IMF-led research projects, including the Black Swan Research Initiative.

I look forward to continuing to expand the IMF's relationships with researchers and patient organizations throughout Europe that share the common goal of supporting and improving life for myeloma patients. 


Nadia Elkebir
IMF Director of Europe and the Middle East


Czech Patient & Family Seminar photos courtesy of KPMM member Mr. Pavel Skarka.

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A Whole New World: Becoming a Patient Advocate

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What does it mean to be a patient advocate? If you asked me that six years ago I would have no idea how to answer that question. Six years ago I was newly diagnosed with myeloma and struggling to learn about this heterogeneous disease and all the treatment options that would be available to me. Six years ago I was quite a different person. Six years ago I didn't have discussions with my healthcare team or ask them questions when things didn't seem right. Six years ago I thought I would offend my doctor if I sought a second opinion. Six years ago I was an uneducated, uninvolved patient who blindly followed doctor's orders. BUT six years ago I had the good fortune to attend my first IMF Patient & Family Seminar in Short Hills, New Jersey and things began to change.

The IMF quickly taught me that "Knowledge is Power." Being a teacher I liked acquiring knowledge so I began educating myself about myeloma. I attended IMF Patient & Family Seminars, listened to webcasts and Living Well with Myeloma teleconferences, participated in online communities like ACOR.org, which is now smartpatients.com and read countless publications. Gradually I became a more active participant in my healthcare. I was asking questions, engaging in discussions, requesting tests and seeking second opinions. I was becoming my own advocate and an "e-patient."  I shared what I learned about the importance of being an educated, empowered and engaged patient with members of my support group, the newly diagnosed myeloma patients I mentored, family and friends. 

I thought I was a "patient advocate;" boy did I have a lot to learn! In 2011 I was to asked to represent the Philadelphia Multiple Myeloma Networking Group at the IMF's annual Support Group Leaders Summit. While registering at the summit, two young ladies from the IMF Advocacy team approached me about participating in an upcoming advocacy training webinar. They were so nice and passionate about what they were doing, I couldn't say no.

I was trained by the IMF on how to become a political advocate. The IMF Advocacy team helps guide individuals to advocate for critical health issues that affect the myeloma community. I learned how to arrange a meeting with my representatives to Congress, how to conduct an in-district meeting and what the appropriate follow-up should be after a meeting. I was also educated on the current critical issues facing myeloma patients. Soon I found myself sitting at an in-district meeting with the legislative health aide from my district in New Jersey, asking for support for the oral chemo parity bill, the Cancer Drug Coverage Parity Act. I'm happy to say days after that meeting, Rep. Rush Holt, my representative to Congress, signed on as a co-sponsor of this bill. I would like to think it had something to do with my meeting and how well the IMF Advocacy team prepared me for it.

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This year I attended the American Association for Cancer Research's (AACR) Annual Meeting. I was selected to be part of the AACR's Scientist-Survivor program. This is a very competitive program, but thanks to the training and opportunities the IMF has afforded me I received one of AACR's coveted scholarships. While at the meeting I discovered an entire new area of advocacy- research advocacy. Research advocates provide the unique patient perspective in the research process, working with investigators, companies and government agencies to accelerate progress against cancer. As part of the AACR's Scientist-Survivor Program I learned that the National Cancer Institute (NCI) and the Department of Defense (DOD) use research advocates. I also learned that research advocates must demonstrate an understanding of cancer and the research process, have a familiarity with how the scientific community works and be able to work as a member of a scientific team.

Many of the other participants in the Scientist-Survivor Program were already research advocates serving on IRBs (Institutional Review Boards), participating in advisory boards, speaking on panel discussions at scientific meetings and refining cancer research education materials. They were very willing to guide me on how to become involved in this new avenue of advocacy. Once again I felt prepared to undertake this new endeavor because of the IMF. I learned a lot about clinical trials and research by attending the American Society of Hematology's Annual Meeting as a patient advocate representing the IMF.

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Upon my return from the AACR's Annual Meeting I created a research advocate profile on the NCI's newly designed Office of Advocacy Relations (OAR) website. But I felt I was at a stand-still. I was in the NCI system, but I only would be contacted if they needed a research advocate that matched my profile.

Once again I was asked to represent my support group this year at the IMF Support Group Leaders Summit. Part of this year's training was a session on.... you guessed it- research advocacy. Research advocates Jack, Jim and Mike presented to the group and encouraged us to get involved. They suggested we start our advocacy efforts at the local level at our own cancer center. I took their advice and contacted my local cancer center and asked if I could observe one of their Institutional Review Board (IRB) meetings. IRBs are groups of experts who review plans for clinical trials before they begin, seeking to protect the safety and rights of people who will participate in the research. My local cancer center was very accommodating and invited me to sit in on an IRB meeting a few weeks ago. After the meeting I wrote a thank you note and asked how I could become involved as a patient advocate on an IRB. In response to my question they invited me to observe another IRB meeting and then start the training process to join an IRB! I am now on my way to becoming a research advocate.

Why am I sharing this? Because anyone can become an advocate! You can be a support advocate, a political advocate, a research advocate or a fundraising advocate. The IMF is there to support you and provide you with the tools to be successful. Join the IMF ACTION team, start/participate in an IMF support group, work with Suzanne Battaglia to organize a fundraiser or try your hand at research advocacy. I have evolved as a patient and an advocate over the last six years and I have to credit the IMF with being instrumental in my metamorphosis.

Cynthia Chmielewski
@MyelomaTeacher on Twitter 

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  • Are We Starting to Cure Myeloma?
  • The IMF Co-Hosts Patient & Family Seminar in Slovakia
  • A Patient Reports on Her Experience Serving on the IRB Board
  • Cancer Drug Costs: Is the System Broken?
  • Saving the Planet--and Preventing Myeloma
  • 10 Steps to Better Care: The Bottom Line for 2014
  • Should Myeloma Treatment Be Fully Personalized?
  • The IMF Strengthens International Relationships in Europe
  • A Whole New World: Becoming a Patient Advocate

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