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Multiple Myeloma - Why A Myeloma Specialist Is Not Optional But A MUST HAVE!

7/25/2015

Do not have a doctor directing your care who is at the start of the myeloma learning cure. Recently, Dana Holmes the editor of a smoldering myeloma patient web site had a blog post which outlined the importance of having a myeloma specialist on your team even during the early smoldering phase of the disease, and why you should not put your life in the hands of someone who is not a myeloma specialist. It does not matter how much you like a hematologist oncologist or what degrees they have, because if they do not see 100 myeloma patients or more a year they are just NOT QUALIFIED to treat this very complex disease. In addition, she had received some comments which just help to clarify how important it can be, and how it just may spare a patient unnecessary treatment. Dana wrote the following and you can view Dana's Facebook page if you CLICK HERE;

"I want to take this moment to remind our members how IMPORTANT it is to seek a consult with a Myeloma specialist for a proper evaluation before you decide to start treatment if you are presently under the care of a local, community hematologist/oncologist who may not quite understand the nuances associated with this disease, especially the progression of asymptomatic "smoldering" myeloma to active myeloma (provided of course you are NOT in a condition which requires emergency intervention, i.e. kidney crash, fractured veterbrae, etc...) Some of the local hematolgists/oncologists's may be jumping the "treatment gun" and some may be too slow at the starting gate, either way is not ideal! You need to partner with someone who really understands when to intervene (preferably before end organ damage becomes overt) and when to continue to monitor closely and "watch & wait", operative words "monitor closely". Again, I will stand on my annoying soapbox and encourage all of our members to seek consult w/ a specialist BEFORE anything like that can happen, don't WAIT until you are facing those challenges to try to get an appointment ... seek a consult while you are still smoldering and begin to build a relationship, as none of us really know which of us will be in the 10% per year who progresses to active disease.

Although it may require some travel which may be an inconvenience, and may present other challenges as well, if you can manage it, DO IT, it is YOUR life...YOU deserve the VERY best, don't settle for second best or less.

A real easy peasy way to see what type of research your docs are involved in is to search their names on PubMed. This will bring up the research they are actively engaged in...don't see any research articles listed from them about myeloma? This is your 1st indication they are likely NOT myeloma specialists...does it mean they are NOT a great doctor?? NO !! But it means Myeloma is NOT what they necessarily specialize in. Myeloma specialists are often affiliated with academic research universities/facilities and they are publishing the research, not just reading research published by someone else. They have their fingers on the emerging changes and data, not waiting for it to trickle down to them several months out.

You can also ask them if they attend any of the Blood Cancer Conferences in order to remain as up to date as possible about the ever changing Multiple Myeloma landscape...If they are "too busy" to attend, think about finding a doctor who is not too busy to learn the most they can learn about the cancer they want to treat you for. Don't worry that you may insult them by your asking about how involved they are with YOUR type of cancer. So be sure to ask.

Does it mean you have to leave this local doctor in the dust? NO, you most certainly can continue your affiliation with them if they are willing to become a member of YOUR team and work with your myeloma specialist. (Another red flag if they refuse to coordinate your care, don't let their egos get in the way of getting the very best possible care.)

Here is an example of Dr. Ola Landgren's research via Pub Med http://www.ncbi.nlm.nih.gov/pubmed/?term=Ola+Landgren

Dr. Landgren is one of the leading Multiple Myeloma specialists who has invested a great deal of time studying the precursor stages of MGUS and Smoldering Myeloma. There is little DOUBT he specializes in the myeloma spectrum...just follow this link >>> http://www.ncbi.nlm.nih.gov/pubmed/?term=Ola+Landgren <<< and replace Dr. Landgren's name w/ your doctors name...

Do keep in mind that the Myeloma Specialist groups at a given center work together as a team. If you don't see your specialists name on the IMWG list, or much research listed on PubMed once you have searched their name, try searching for the Director of his/her Myeloma group's name, he/she will likely be listed.

You can also check if your MM specialist is a member of the IMWG ~ International Myeloma Working Group ~ an added "bonus" if they are a member of this elite group ~ approximately 180 of the top myeloma specialists in the world !! - check this list >>> http://myeloma.org/IndexPage.action… .

You can also check a recent IMWG consensus publication which usually lists all of the current IMWG members.

This is of course just my opinion, one which you may or may not wish to consider, but this is my soapbox word of the day."

A couple of the comments attached to this post showed just how important a myeloma specialist really is, and the following comments emphasize this beautifully.

"My local oncologist said I have myeloma (not smoldering) and recommended I start treatment this year. My myeloma specialist in Seattle (Dr. Pagel) disagreed and said I'm not only smoldering but that I'm at low risk of progression. We are monitoring instead of treating, at least for now. Yay!"

"Precisely!! The local (no real fault of his/her own) just doesn't understand the disease as the specialist does! You are not the first in this group who has shared a similar story...One patient recently posted his story...was at treatment's door by 2 local oncs with high risk, do it now and do it w/ aggressive treatment , etc.....MM specialist put on the brakes and said, more likely low risk to progress, lets monitor!"

One of the most hideous and egregious examples of how a myeloma specialist's second opinion could have saved so much pain and agony is in the case of the Criminal Michigan Hematologist Oncologist, who through greed alone diagnosed HEALTHY people as having blood cancer and treated them with chemo, which they DID NOT NEED. This Dr. had 1000 patients and managed to defraud Medicare and the patients for $35 million. You can read this heinous case if you CLICK HERE. In this case a second opinion from a skilled myeloma professional would have saved so many people from unnecessary treatment.

A listing of myeloma specialists is available if you CLICK HERE. Good luck and God Bless your Myeloma Journey/ [email protected]

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

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Multiple Myeloma 2015 Update - Why Do People Beat the Average Myeloma Life Expectancy Prognosis? Or How To Improve Your Multiple Myeloma Survival Rate!

7/5/2015

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I updated this post in September of 2020 and you can see the update if you CLICK HERE. published on this subject more than a year ago, and it has been very helpful to many in the myeloma patient community. I have provided some updates including a new section on Early Diagnosis and Treatment and hope that it helps to assist you in your myeloma journey. The SEER(Surveillance, Epidemiology, and End Results) data for multiple myeloma has been published in April of 2015 by the National Cancer Institute, and the average life expectancy remains at 4 years for the fifth year in a row. However, some people beat the odds and live 10 to 20 years or more. When I was first diagnosed, the data for a person with dialysis-dependent kidney failure was just 3 months, and the overall average was 3 years. Now I am a 9 year and 5 month survivor, and I have beaten the average life expectancy prognosis at the time, and this was with what was called a negative prognostic indicator (kidney failure). So I believe you can break into three parts a patient's ability to beat the odds. Part one is early diagnosis and treatment before end organ damage. Part two is disease dependent, or what was 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 in the smoldering or in 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. New treatment guidelines have been 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.

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. So until a method of screening and general practitioner training is initiated, this will continue to be mostly just luck. 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 over night but takes 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 but should be what 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 include, but are not limited to, deletion of chromosome 17p and translocation of 4;14 or 14;16 or 14;20. Your myeloma specialist will run the FISH test or other genetic tests to determine if you have any of these negative prognostic indicators. If you are considered high risk, the life expectancy is just half of the current average, or just 2 years. You can read more about high risk multiple myeloma 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 and put me into remission very quickly. Some people might have the same experience with Revlimid, Velcade, or Dex, or any combination of these drugs. If the disease comes back, as it often does, the re-application of the same regimen may continue to work for years. I know one patient who has taken Thalomid for years as his only treatment and remains in remission. This is working well for him.

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

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

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. Unfortunately without care, like people who need dialysis (which is always covered by Medicare), you will have below average life expectancy.

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, while the average remains stagnant at 4 years. For a listing of these exceptional specialists CLICK HERE or for a more extensive list without survival history just CLICK HERE. And obviously, if your myeloma specialist has an average patient life expectancy of 10 years, their patients will beat the average by more than twice the average. This is what I did when I chose to get my SCT(stem cell transplants) at University of Arkansas for Medical Sciences, UAMS, which has a myeloma program called MIRT, Myeloma Institute of Research and Therapy. At the time they had over 10,000 transplants under their belt, and as a result they were expert at the process, and knew what could go wrong and had a plan in place to get you through any potential complications. I have found from my work on this site that centers like Mayo, Dr. Hari(Medical College of Wisconsin), UAMS, or Dr. Berenson's (IMBCR) have very different approaches to treatment, but because they are expert in what they do, they have similar results. A brain surgeon is who you would choose 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 unapproved drugs like Daratumumab or Ixazomib through special programs. Or some specialists can use drugs that are only approved for relapse or secondary therapy options (Krypolis and Pomalyst), and obtain approval to use them for newly diagnosed patients. They also have access to the best clinical trials like VRD for first line therapy which provides a response in 100 percent of patients. When you run out of options with the currently approved drugs, they can provide access to those that have done great in clinical trial, but are not currently available to the general public. 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 also be affected by the knowledge of the patient, and this can be obtained by doing your research on finding the best approaches to care by looking at the work of the best myeloma specialists on-line, and by going to great sites as listed in the Resource Section of www.myelomasurvival.com. 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 at if you CLICK HERE.

There are 80,000 multiple myeloma patients in the USA, and if we can move the average from 4 years to 10 years of life expectancy with the myeloma specialists, we could save 80,000 times 6, or 480,000 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/ [email protected]

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

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Multiple Myeloma - Why A Myeloma Specialist Is Not Optional But A MUST HAVE!

Multiple Myeloma 2015 Update - Why Do People Beat the Average Myeloma Life Expectancy Prognosis? Or How To Improve Your Multiple Myeloma Survival Rate!

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