By Gary Petersen
I 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 and hope that it helps to assist you in your myeloma journey.
The latest SEER (Surveillance, Epidemiology, and End Results) data for multiple myeloma was published in 2013 by the National Cancer Institute, and the average life expectancy remains at 4 years for the third 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 7 year and 10 month survivor, so I have beaten the average life expectancy prognosis at the time, even with a negative prognostic indicator (kidney failure). I believe you can break into two parts a patient’s ability to beat the odds. Part one is disease dependent, or the hand that you were dealt. Part two is related to the level of care that is available to you.
Part 1 – The Disease and You
Some people are just plain lucky and have a form of myeloma that is not that aggressive. One example of this is 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 two times more likely to survive if you were diagnosed . The average age of the typical myeloma patient is 70.
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 translocations 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 two years.
The sensitivity of the disease to treatment is also important. My myeloma seemed to be very sensitive to the combination of Cytoxan, Thalomid 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 four years, half of the people will invariably beat the average.
I am sure there are other disease factors, but there are additional parts of disease control that you may or may not be able to influence.
Part 2 – Quality of Care
There are some elements that you may or may not have much control over, the first of which is the availability of insurance. If you do not have insurance or have no access to care, the average life expectancy is less than one year. However, 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. 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. Unfortunately without care, like people who need dialysis (which is always covered by Medicare), you will have below-average life expectancy.
An Experienced Myeloma Specialist Saves Life! MAYBE YOURS!
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 or for a more extensive list without survival history check the links. 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. Be The Match (https://bethematch.org) also collects survival statistics by facility for allogeneic (donor) transplants for myeloma.
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. If you had a brain tumor, you would choose a brain surgeon. Why would you not do the same for myeloma?
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 Velcade-Revlimid-Dexamethasone for front-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 are showing promising results in clinical trials, 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 of myeloma. The number one complication is pneumonia, and others include infections, kidney failure, anemia, etc. 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.
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 both on the www.myelomasurvival.com site and the Myeloma Crowd site. 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!
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.
One way for YOU to help with myeloma awareness is by getting this message out to your Facebook, Twitter or other social media contacts. You may not know someone with myeloma but your contacts might, and you may just help to SAVE LIFE! Just click the Twitter and Facebook icons at the end of this post to share. Good luck and God Bless your myeloma Journey.