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.
On the other extreme is the Myeloma Institute in Arkansas. Physicians at UAMS feel myeloma can be cured—especially low risk patients without genetic abnormalities. 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, sandwiched by lots of chemotherapy combinations for many years. Here is a link to the UAMS Website.
I mention this because in order for Total Therapy to have a chance to work, newly diagnosed patients cannot have started any anti-myeloma therapy prior to starting TT.
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 Houston 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.
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 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 can I 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 mutliple 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) in patients up to 75 years of age. Some won’t do them on patients that old. Some will do them on even 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 book, Living with Multiple Myeloma.
A combination of Revlimid and dexamethasone worked so well for me I chose to wait and not get a SCT right away. That was almost four years ago. I did have my stem cells harvested for future use. 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. Here is a link to an article I just wrote about it. Here is a link to another.
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, at least most multiple myeloma patients 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 at 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.
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.
Not great, but trust me, better than the alternative—I know!
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 people like you.
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!
I have shared this thought before: “It almost makes it worth having cancer—almost!”
Feel good and keep smiling! Pat