If you are reading this, I’m guessing you—or someone close to you—has multiple myeloma. I’m so sorry!
A multiple myeloma diagnosis can be overwhelming! I was diagnosed with multiple myeloma in the spring of 2007. I remember how everything seemed to be jumbled-up and moving too fast. It felt like my world had been turned upside down!
Those early days make sense and are much clearer now. Why? Experience. I understand how treatment options work. I understand what news and advice are important and what isn’t.
My goal in writing this blog is to use my experience to help you focus on the things which are important to your recovery. I want to help speed-up your multiple myeloma learning curve and raise what I call your “Multiple Myeloma IQ.”
Please remember that I am not a physician. I am a part-time, freelance medical writer–and patient–who specializes in writing about multiple myeloma. I have met and interviewed many of the most prominent multiple myeloma experts from around the world. I have spoken to support groups all across the country. These articles are written from an informed patient’s perspective. I try and use my experience to select daily topics I think will be most helpful for my fellow patients and caregivers.
Learning you have cancer isn’t fair! It certainly doesn’t help to then learn you need to know almost as much about your bone marrow cancer as an oncologist. Why? Because there are a number of different strategies myeloma “docs” use to treat myeloma.
Unlike most other cancers, there aren’t one or two treatment options–there are six or more. Don’t be surprised to hear your oncologist ask you: “What would you like to do?”
What would I like to do? How would I know? I’m the patient! Again, not fair…
And while most of these aren’t “life and death” decisions, they could very well effect your quality of life for years to come. So what to do? Raise your multiple myeloma IQ!
So let’s get started. Here are two articles I wrote at the end of 2010 which should help. Please note I intentionally highlighted them in burgundy–the official color representing multiple myeloma:
Tips To Raise Your Multiple Myeloma IQ
Friends and business associates often tell me I write like I talk. Good! Because that’s what I’m going to do here. I’m going to try and explain the best I can—patient to patient and in my own words—what I think every multiple myeloma patient should know.
You are reading my MultipleMyelomaBlog, com (MMB) site now—that’s a good start.
Yesterday I mentioned that all newly diagnosed patients should visit the International Myeloma Foundation’s (IMF) website as soon as they are diagnosed, too: http://www.myeloma.org/.
Mayo Clinic has one of the top three visited medical Websites in the world. Mayo also is one of the top diagnostic and treatment centers for multiple myeloma—and features an easy to understand, comprehensive myeloma site:
OK. The basics aren’t that hard. Multiple myeloma is a cancer of the plasma cells in the bone marrow. Left untreated, multiple myeloma is likely to kill you in a few short years.
The good news is there are more new, promising therapies for treating multiple myeloma than any other cancer.
The bad news is there is no cure.
Let’s start with the BIG question every patient asks as soon as they learn they have cancer: “Doctor, how long do I have?”
Most oncologists will try to dodge the question and start mumbling something about how “You aren’t a statistic.” or “That isn’t important. What is important is we start treatment as soon as possible.” But patients and caregivers can be persistent—especially after someone tells them they have incurable cancer!
Cornered, most myeloma specialists are now telling their newly diagnosed patients that they could live seven, eight or even ten years. But you also may hear that the median life expectancy–sometimes referred to as overall survival (OS)–for a multiple myeloma patient is between three and four years—or 44 months to be exact. Both of these statements are correct.
How is it possible for one oncologist or info site to say 8 years while another says 44 months? Here’s where we start building your multiple myeloma IQ.
It is true that—despite all of the new novel therapy agents available to treat our cancer—some patients do die. But some patients live decades—and there are more and more of them every day.
Like many cancers, multiple myeloma can be staged. But staging isn’t the most important prognostic factor. How well you will respond to treatment—and how long you are likely to live—are more dependent on some very specific genetic information.
One of the first things your oncologist should do is order several myeloma specific blood tests to check if you have something called a chromosome 13 deletion. If you do, it isn’t good. Not hopeless—it just means your type of myeloma is going to be more difficult to treat. You may even hear your doctor use the term, “high risk.”
There are a number of other slight genetic abnormalities that these tests are looking for that may also lead to treatment difficulties. Examples of these are another chromosomal deletion, number 17, along with others which are referred to as translocations. These include 4/14, 14/16 and 13/32.
Researchers are identifying more of these genetic abnormalities which may negatively effect how well certain therapy agents work—and for how long. These discoveries also help our docs get a better idea which treatments are most likely to work best.
At this point, it isn’t important to know a lot about this. The important thing is to make sure you are genetically tested.
And here’s another thing. The average age of diagnosis is 68 years old. Many patients are diagnosed in their 80’s and 90’s. This skews OS statistics. Older people tend to have more co-morbidities; meaning they may already be sick or have health complications like diabetes or heart issues when they are diagnosed. This can drag OS stats down, since they are rarely adjusted for age.
Using genetic testing, myeloma experts can place you in one of three categories: low risk, moderate risk and high risk.
Median life expectancy numbers can be extrapolated (a big word for organized) by category. This explains why one doctor can say 44 months and another 8 years. Thanks to new, novel therapies, low risk patients—those with no chromosomal abnormalities, are living an average of eight to ten years. Moderate risk just under five years. And unfortunately, the median life expectancy of a high risk multiple myeloma patient is three years or less.
Put them altogether and you come up with a median life expectancy number equaling 44 months. Try and remember that “median” is not the same as average. In this case, one half of patients will live less than 44 months and one half longer. It doesn’t tell you how much longer. New myeloma therapies should hopefully help a lot of us blow by these numbers. But we know that for a while–three or four therapies haven’t been around long enough to prove it!
Make sense? I thought it was important to take the time and explain how and why median life expectancy numbers are what they are. Your multiple myeloma IQ just jumped ten points!
Now let’s pick-up the pace. Once you are diagnosed—and your genetic situation is revealed—your oncologist can suggest a treatment plan. Hopefully by now you have gotten a second opinion and both parties agree—or you have decided to work with one or the other doctor or institution. Now what?
WHEW! This is longer and more complicated than I planned. But that is how I talk… I get carried away, lose focus and tend to run over my allotted time.
So as much as I hate to do this, I think I need to finish working on this over the weekend. We will continue building your multiple myeloma IQ on Monday. The next phase will go faster—promise!
Feel good and keep smiling! Pat
More Ways To Raise Your Multiple Myeloma IQ
Saturday I started sharing some basics for newly diagnosed multiple myeloma patients and caregivers, “Tips To Raise Your Multiple Myeloma IQ.”
We covered the what, how’s and why’s about interpreting a prognosis, how genetic abnormalities can complicate a diagnosis and understanding median life expectancy.
I can’t emphasize enough how important it is to get a second opinion from a cancer center which specializes in multiple myeloma.
This would be simple if all experts agreed on the best way to treat a multiple myeloma patient. The good news is there are lots of treatment options. The bad news is there are lots of treatment options.
On one end of the treatment spectrum you have the Mayo Clinic. Experts there tend to be conservative, working to manage multiple myeloma as a chronic disease. Mayo Clinic myeloma specialists tend to favor an incremental approach, using one or two drugs at a time until they stop working, then experimenting until they find another drug or combination that works. Rinse, repeat. Get it? This approach tends to allow a patient to live a reasonably normal life. If a novel therapy agent like Revlimid or Velcade causes too many side effects, they try and substitute another one that is more tolerable.
The Myeloma Institute in Arkansas often takes a more aggressive approach. Located on the University of Arkansas Medical School campus (UAMS), specialists there feel low risk myeloma patients can be cured. In order to accomplish this, experts at UAMS employ a treatment strategy called Total Therapy. This intense treatment regimen requires a pair of stem cell transplants and a variety of tailored chemotherapy combinations. They can get great results. Here is a link to the UAMS Website:
Of course there are dozens of other well respected cancer centers which specialize in treating multiple myeloma—from Sloan-Kettering and Dana-Farber in the Northeast to Moffitt in Florida, M.D. Anderson in Texas and Mt. Sinai in California—with lots of others in-between.
The majority of these centers follow a treatment philosophy which lies closer to Mayo—keep patients alive for as long as possible using a variety of different therapies, including stem cell transplants and doublet or triplet incremental therapies.
OK. So you have scheduled a second opinion. How do you know what to expect or what to do next?
There are two primary novel therapy agents used to treat newly diagnosed multiple myeloma patients: Revlimid and Velcade.
Revlimid is an oral chemotherapy agent. Velcade is administered by IV. Both work for a majority of patients and are almost always combined with a corticosteroids like dexamethasone or prednisone.
Thalidomide (Thalomid) is sometimes substituted for Revlimid. It is a similar, less expensive drug than Revlimid, but it tends to have more severe side-effects.
No way I can cover all of the possible anti-myeloma drugs and drug combinations here. But if your doctor recommends using any treatment which does not include either Revlimid or Velcade, you need to ask why.
The “standard of care” for newly diagnosed multiple myeloma patients include an induction phase, a consolidation phase, followed by a drug holiday or maintenance therapy.
Induction uses Revlimid and/orVelcade, Dexamethasone, one or more other drugs and desamethasone in an effort to bring your multiple myeloma under control. A very large majority of patients respond favorably to these combinations. If you are one of the rare few who isn’t improving, the combo’s can and should be adjusted.
Induction typically lasts three to six months. Once the myeloma is under control it is decision time. Most cancer centers then recommend undergoing a stem cell transplant (SCT or ASCT; they mean the same thing) in patients up to 75 years of age. Some won’t do them on patients that old. Some will do them on even older patients, depending on their general health.
A stem cell transplant—sometimes called a bone marrow transplant—most often uses a patients own stem cells which are removed from the blood.
Let me pause here. Once again, I can’t cover all of the details associated with getting a stem cell transplant. But this is important: New, novel therapy agents work so well for many patients that DELAYING OR SKIPPING A SCT ALTOGETHER IS BECOMING MORE COMMON.
I discuss this decision process at length in my first book, Living with Multiple Myeloma, and in my second book focuses on transplants: Stem Cell Transplants from a Patient’s Perspective. I wrote this book during and after my SCT in the summer of 2010, interviewing dozens of my fellow patients. I have since updated it twice. What did I ask them? For tips about how to make the process easier–the things they wish they knew back before their transplants.
A combination of Revlimid and dexamethasone worked so well for me I chose to wait and not get a SCT right away. I was able to wait more than four years until after my first relapse to transplant But I did have my stem cells harvested for future use right away. It is important to do this early so the harvested cells are not too damaged by lots of chemotherapy.
Getting a stem cell transplant, or waiting and continuing on using a combination of drugs is called consolidation. The goal is to continue killing myeloma cells until a patient goes into remission, called a complete response (CR), or at the very least stabilizes with a very low number of myeloma cells still around. This is called a very good partial response (VGPR) or partial response (PR). This consolidation phase usually lasts an additional six months or so.
At this point you have either had a single transplant, tandem (back to back) transplants or chosen to stay on a drug combination which has worked for you so far. Hopefully your myeloma is stable or immeasurable. It is rarely completely gone. But that is another story.
Now what? You can choose to watch and wait, using few if any drugs. Or you can go on maintenance therapy. There has been a lot of research about maintenance therapy recently. Patients that stay on maintenance therapy (Thalomid, Revlimid or Velcade, with or without dexamethasone) are able to keep their myeloma under control for close to two years (median) before it becomes active again than someone who skips maintenance therapy and stays on an extended drug-free holiday. This is called progression free survival (PFS). BUT, overall survival (OS) stats don’t seem to have improved nearly as much. In other words, maintenance therapy helps keep myeloma away longer, but you don’t necessarily live longer.
The bottom line: Whether you chose to use maintenance therapy or not, 95% of patients relapse in less than ten years. Those aren’t very good odds.
Remember, relapse doesn’t mean death—but that can happen, too.
By now you are probably overwhelmed and scared. Really, really scared. Let me leave you a logical, realistic message of hope—my favorite kind!
It isn’t fair you have cancer. It isn’t fair you need to become an expert and make tough treatment decisions. But there is lots of good news.
First, most multiple myeloma patients do have choices. To be aggressive and hit your myeloma hard. To be conservative and use the least invasive therapy available and take it one day at a time—with lots of choices in-between. Myeloma “docs” are getting better at customizing treatments to individual patients. This approach looks promising and is only going to get better.
Second, there are several new novel therapy agents which look promising for treating patients who relapse and become refractory (are no longer responding) to available treatments. These two drugs, pomalidomide and carfilzomib, should be available in the next few years.
AUTHOR’S NOTE: The “next few years” is NOW! Both carfilzomib (Kyprolis) and pomalidomide (POMALYST; I call it POM) are now FDA approved for relapsed patients that have tried several different therapies. My third book, New Multiple Myeloma Therapies from a Patient’s Perspective, takes a step by step, understandable look at which new therapies are most likely to help us over the next five years.
Third, there are dozens of other experimental drugs in the pipeline. Worst case: Over the next ten years five or six effective new drugs become available which help extend a patient’s life for many more years. Plus, more and more patients have access to clinical trials, meaning you may be able to use one or more of these new drugs even before they are FDA approved.
Most myeloma experts, including those at the International Myeloma Foundation (IMF) and Multiple Myeloma Research Foundation (MMRF), believe multiple myeloma will be classified as a chronic disease within the next five to ten years.
Yes, you will be forced to endure a life of tests, needles, bone marrow biopsies, IV’s and pills—lots and lots of pills. There will probably be financial hardships. But chances are good you will be alive and living a relatively normal life ten years from now. Did I just mention financial hardships? You guessed it; my fourth book addresses that too: Financial Aid for Myeloma Patients and Caregivers.
None of this is great, but trust me, better it’s better than the alternative—I know! I write about a lot of other cancers, too. And while many can be cured, most can’t.
But there are some good things, too. You will meet lots of wonderful people who—like you—have been faced with a life and death challenge and lived to talk about it. You will meet lots of smart, caring doctors and nurses who have dedicated their lives to helping others like us. During this holiday season, you have a chance to learn and understand what is really important in life. You will gain a new appreciation for friends, family–and LIVING!
Feel good and keep smiling! Pat
Whew! What do you think? That’s a lot of information crammed into two, short posts. But I wrote them with you in mind.
As a matter of fact, there are hundreds of articles from past years archived here for you to reference. Simply use the “Enter your search keywords here” grey query box, located in the black band on the upper right side of my homepage. Type-in something referencing your question, and a number of articles should appear below. You may want to try more than one word or phrase to help you complete your search–but not all at once.
Keep your search as broad and simple as possible. For example, I typed in “stem cell transplant” and a dozen articles instantly popped-up. Some of the same articles appeared when I typed in “SCT.” Others did not. But as I scrolled-through the list I found four articles which didn’t appear under “stem cell transplant,” but did appear under “SCT.”
So the system isn’t perfect. But it should help you reference and review info on specific drugs, therapies and side-effects.