I updated this post over two years ago, and it’s been very beneficial to many in the myeloma patient community. One thing has become quite clear to me, the speed of progress and change for myeloma is becoming exponential. This is an excellent thing! We’ve had 4 medications approved for myeloma in 2015 alone.
Within this day and age, myeloma approvals have been 13 times greater than cancer. I can only say thank you to the researchers, drug companies, myeloma specialists, clinical trial patients, and advocates for this outstanding achievement. Moreover, the pipeline is full of new medications, CAR T, checkpoint inhibitors, MIL’s and efforts to deal with as early as practical. I can’t see how anyone but a proficient myeloma specialist can keep current with this rapid pace of change.
Years, as stated by the SEER (Surveillance, Epidemiology, and End Results) data for multiple myeloma printed in April of 2017 from the National Cancer Institute is the life expectancy. This is outstanding progress because life expectancy was stagnant at 4 years for 5 consecutive years. When I was first diagnosed, the information for a individual who has dialysis-dependent kidney failure was only 3 months, and the average for myeloma patients overall was about 3 years. Now, I’m beyond grateful to be an 11 & 1/2 year survivor. I think there are three crucial components to beating the odds: Part one is early identification and treatment before end organ damage. Part two is disorder dependent, or the hand that you were dealt. Part three is associated with the level of care that’s available to you.
If you’re fortunate enough to have a general practitioner who picks up substantial protein in the blood and discovers the disease early while it’s smoldering you have won the Myeloma Lottery. Life expectancy of phase one disorder is 3 times larger than in case you have been observed in stage three.
“The notion of initiating treatment after end organ damage is analogous to initiating therapy following the growth of metastatic cancer in solid tumors. Indeed, screening, early detection and intervention have played a massive part in the significant curative advances which have been achieved in solid tumors whereas metastatic cancer remains incurable in the very same malignancies. It is, therefore, not surprising that MM remains incurable, regardless of all of the improvements in therapeutic interventions. Could it be because we’re waiting too long — until metastatic myeloma happens — to treat our patients? In this condition, watchful waiting may actually be harmful to the individual than early intervention.”
If you are among the lucky ones that are diagnosed in the early stages of active myeloma or smoldering myeloma, you’ll have the luxury of time to understand the treatment options, find a myeloma specialist, and face your illness before permanent end organ damage. Dr. Rajkumar of Mayo Clinic did a wonderful job of describing the new standards for myeloma diagnosis. Dr. Irene Ghobrial is doing some terrific work to follow MGUS and smoldering phases of this disease, to develop treatments to heal, or prevent end organ damage. As a note, the nation of Iceland is analyzing all its adult population over 40 to display for MGUS, Smoldering, and active myeloma. This is a future I pray we will all see where we can efficiently diagnose MM early and treat it before end organ damage.
Regrettably, Myeloma UK has reported that 1 in 5 myeloma patients die within the first two weeks of analysis, which it takes almost a year from the first symptoms to diagnosis for 25% of newly diagnosed patients. Dr. Morgan of UAMS said it best when he outlined his ideas on the topic of consciousness and delayed diagnosis. He considers the fact that it takes 3 to 6 weeks and more often 6 months from initial symptoms to diagnosis is a small scandal. We will need to create family doctors and family professionals more aware of the disease. They ought to do M spike and light series tests on patients. It’s actually tragic when patients develop renal failure when consciousness of myeloma by a General Practitioner may have allowed the individual for a consult or therapy from a myeloma specialist. A myeloma specialist is vital to a patient’s long term care and survival. It’s a disease that doesn’t come on immediately but is years in the making. Like with Smoldering, there could be a non toxic and safe treatment for MGUS which are a chemo prevention program. He think the future of Myeloma is going to be to acquire earlier identification, safe remedies, chemo prevention strategy, routine screening for para protein, and early intervention. This is the future we’re striving to attain.
I have kidney damage, a great buddy of mine has debilitating bone pain, others dropped vertebrae, one suffers from a myeloma caused stroke, and several have died from delayed diagnosis. All of which may have been averted with a simple evaluation of light chains and M spike costing under $150 without insurance.
Some folks are just plain lucky and have a kind of myeloma that’s not that aggressive. In other words they have myeloma, but it happens to be smoldering myeloma. This type of the disease can be found in the individual but not show any outward symptoms. It can stay in this manner for 5, 10, or even 20 years.
The age of the individual is quite important, in that you are more likely to survive if you’re diagnosed at 49 years old or less. The average age of the normal myeloma patient is 70.
Some might have an active disease but don’t have some of the negative prognostic indicators. Your myeloma specialist will conduct the FISH test or other genetic tests such as GEP(gene expression profiling) to determine whether you have one of these negative prognostic indicators. If you’re considered high risk(15% of individuals ), the life expectancy is less than half of the current average, or only two years.
The sensitivity of this disease to therapy is also significant. My myeloma appeared to be quite sensitive to the mix of Cytoxan, Thalomid and Dexamethasone, a remedy that put me into remission very fast. Some people might have the identical experience with Revlimid, Velcade, or Dex, or any combination of those drugs. If the disease comes back, as it frequently does, the re-application of the exact same regimen may continue working for years. I know one individual who has obtained Thalomid for years as his sole remedy and remains in remission.
There are a number of elements that you might or may not have much control over, the first of which is the access to insurance. If you don’t have insurance or don’t have any access to care, the average life expectancy is less than 1 year. However, Medicare has a Compassionate Allowance Program where you can be approved in less than two weeks if you go to the neighborhood office and can show you won’t live without care. The Affordable Care Act may offer an alternative for the 15% that aren’t insured, and Medicare, Medicaid, and drug company assistance programs are also offered.
Multiple Myeloma is a rare blood cancer, so many hematologist/oncologists might not find 1 individual in a year. Consequently not all oncologists or hematologists are the same. However, some are extremely skilled and seasoned with Multiple Myeloma and have treated many myeloma patients. The data indicates these myeloma specialists give an average life expectancy of 10+ years or longer, compared to the average that’s at 5.5 years.
I chose to receive my SCT (stem cell transplants) in University of Arkansas for Medical Sciences, UAMS, that has a myeloma program named MIRT, Myeloma Institute of Research and Therapy. At the time they had over 10,000 transplants under their belt, and because of this they were expert at the process, and knew what would go wrong and had a strategy in place to get you through any possible complications. I’ve discovered from my job on this website that centers such as Mayo, Dr. Hari (Medical College of Wisconsin), UAMS, or Dr. Berenson’s (IMBCR) have quite different approaches to treatment, but since they are expert in what they do, they have comparable outcomes. You would select a brain surgeon over another physician if you had a brain tumor, why do you do the exact same for myeloma?
Myeloma specialists have access to medication that other oncologists don’t. Because they’re the thought leaders, they’re involved in clinical trials, and can get some drugs through other applications which lesser known oncologists don’t have access to. Worse yet, oncologists that are not myeloma specialists might not even understand that some of those drugs even exist. By way of example, a number of those well connected pros have access to medication or remedies like CAR T, MILs, Venetoclax or Selinexor, which aren’t approved treatments. Or some specialists may use drugs which are only approved for relapse or secondary treatment choices (Daratumumab, Ixazomib, Krypolis and Pomalyst), and get consent to use them for recently diagnosed patients. They also have access to the best clinical trials such as KRDD (Krypolis, Revlimid, Darzalex, & dexamethasone) for first line treatment which gives you a reaction in 100 percent of patients. When you run out of choices with the currently approved drugs, they can provide access to people who have done great in clinical trial, but aren’t currently available to the general public. Because you want a substantial infrastructure to conduct clinical trials in your facility and they cost the facility $15,000 per individual, few regional oncologists have access to clinical trials.
The number one complication is pneumonia, and many others include infections, kidney failure, nausea, etc.. This, therefore, brings me to the realization that supportive care for the treatment of many complications of this disease might just be as significant as the cancer treatment itself. Or a excellent Defense(supportive care) is as essential as the Crime (cancer treatment ). MD Anderson and Mayo Clinic highlight supportive care in their own programs, UAMS really 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 history in supportive care. Dr. Anaissie has released a well written example of an outstanding supportive care model. It is possible to read this novel if you CLICK HERE. To read my blog article on supportive care CLICK HERE.
I also think the standard of care that you get could be affected by the knowledge of the individual, and this can be obtained by doing your research on finding the best approaches to care by taking a look at the work of their ideal myeloma specialists on line, and by going to great websites as listed in the Resource Section of www.myelomasurvival.com. Furthermore, joining a support group of the International Myeloma Foundation or the LLS (Leukemia, Lymphoma, and Myeloma Society) provides more great information to enhance your life expectancy. I’ve discovered that the average life expectancy of most of those support groups much out-performs the typical. Additional information about the benefits of service group membership are available if you CLICK HERE.
With 30,000 new cases of multiple myeloma in the united states, we could estimate the total number of patients in only the USA in 165,000. If we could move the average life expectancy from 5.5 years to 11 years with myeloma specialists guide your care, we can save 165,000 times 5.5, or 907,500 years of LIFE. Many times more if we include the whole world. You all can help by getting this information from the myeloma patient community though Facebook and Twitter. Everybody knows somebody who has myeloma or might have a friend or relative which may be helped by this information.