Pat's Place: How Do You Know Which Therapy Is Right For You?
Last week, I recommended a newly diagnosed multiple myeloma patient should take some time, step back and gather information about the growing number of treatment options.
Let's assume you have followed my advice by getting your oncologist’s opinion, then asking why. Next, you have spoken with one or more patient counselors at the International Myeloma Foundation (IMF). You have searched The Myeloma Beacon archives for possible options. Hopefully you have even sought out a second opinion at a major cancer center which specializes in treating multiple myeloma patients.
What's the next step? How do you know which therapy option is right for you?
The answer isn't as complicated or overwhelming as it might seem. Last fall I attended a support group meeting in Stillwater, Minnesota. The guest speaker was Dr. Jim O'Connor, an orthopedic surgeon from Eau Claire, Wisconsin.
Dr. O'Connor is also a multiple myeloma patient. He was diagnosed with multiple myeloma five years ago. Before Dr. O'Connor was scheduled to speak, the group discussed a variety of therapy options. Dr. O'Connor listened for a number of minutes before volunteering the following words of wisdom: "When it comes to multiple myeloma therapy, there is no one right answer - only alternatives."
So true! He added that many of today's patients will end up using most of the available therapies at one time or another anyway. His advice: Make an informed decision and don't look back!
So unless you are considering traveling to Little Rock, Arkansas, to begin an aggressive Total Therapy regimen (doctors there are very specific about which order drugs are administered), the initial (induction) therapy you choose probably isn't that important. Just make sure you and your doctor have discussed if and when you will most likely get a stem cell transplant.
Why? Because certain novel therapy agents (chemotherapy drugs) are better to use pre-transplant than others. Some therapy choices can make it difficult to harvest stem cells now - or later.
Please address the timing of a possible stem cell transplant with your medical team. If you are considering a stem cell transplant as a therapy option, most transplant experts agree it is best to harvest your stem cells as early in the induction process as possible.
In the recent past, most newly diagnosed myeloma patients were immediately placed on one of the following novel therapy agents, along with dexamethasone (Decadron): thalidomide (Thalomid), Revlimid (lenalidomide) or Velcade (bortezomib). Today, these drugs are often used in combination. Sometimes additional anti-myeloma agents, such as Doxil (pegylated liposomal doxorubicin) or Zolinza (vorinostat) are added to the mix.
Regardless of which combination of chemotherapy agents your doctor recommends, never forget to ask why. What are the likely side effects? Why do you think this is the right combination for me?
Then, once you and your medical team decide to move forward, don't forget Dr. O'Connor's advice: "When it comes to multiple myeloma therapy, there is no one right answer - only alternatives." Take a deep breath, grit your teeth and move forward.
Good luck! Feel good and keep smiling! Pat
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Great post, as usual, Pat. I'm amazed at the depth of information and advice that you share with us. Thank you!
In my case, I was quickly funneled to Little Rock by my local docs as they had successfully referred patients there in the past. My condition was rather progressed and they felt that I needed immediate attention. UAMS is four hours from my home.
During my first few weeks of initial treatment I simultaneously looked at Dana Farber, Sloan Kettering Memorial, Mayo, MD Anderson, etc. to make sure that I was in the right place. To say the the ultimate decision was confusing is an understatement.
Based on my age, disease type and overall disease profile, I was confident that I was in a good situation - for me. I felt has comfortable with an aggressive approach such as MIRT practices. Fortunately, it has worked out well
Of course I know a whole heckuva lot more about MM because of contributors like you, sites like the Myeloma Beacon, fellow patients and my personal experience.
Keep up the good work- it's very important! Looking forward to your reports from Chicago!
Sean M.
Thanks, Sean! I'm glad things have worked out for you. I think you can get excellent care at any of the institutions you named above. How close you live to one is a major factor. Will insurance cover the costs? For example, my insurance only covered care in Wisconsin or Minnesota. UAMS wouldn't have worked for me. I'm glad you found an institution and therapy plan you are comfortable with--and that you lived close enough to make it work. Good luck! Pat
Sean (or Pat),
Hello. In your posted comment, Sean, you write: "During my first few weeks of initial treatment I simultaneously looked at Dana Farber, Sloan Kettering Memorial, Mayo, MD Anderson, etc. to make sure that I was in the right place."
So, was there a reason(s) why you chose UAMS? My mother was recently diagnosed with MM by an oncologist in her local area. She has not yet been staged - the blood work and x-ray results for staging will be returned on Tuesday. I looked at all the places that you mentioned above but see nothing that would indicate why to choose one place over the other. Anyway, just looking for information on the questions we should be asking to help make the choice.
Thank you.
Regards,
Bernadette
Hi Bernadette-
If I could "weigh-in," like I mentioned, any of these recognized myeloma treatment centers provide excellent care. Most often it all comes down to proximity... Which is most convenient. But there is one major difference. UAMS (where Sean goes) is probably the most aggressive treatment center. They tend to transplant more, use many more tandem transplants and pioneered post transplant maintenance therapy. If you are relatively young and strong and can afford the travel, UAMS might be the place for you. If, like me, you are taking a more conservative, quality of life approach, it might not be as good a fit. Docs at UAMS are trying to "cure" myeloma. By using heavy induction therapy, tandem transplants, then heavy maintenance therapy using a multi combo of drugs, the goal is to eradicate the cancer. They call it Total Therapy. Might work--might not. The other institutions tend to be more conservative. They are just starting to use drug combo's UAMS has been using for years. My biggest frustration with this whole thing: No one knows who is right! Does that help? Good luck and e-mail with questions anytime- Pat
Dear Pat,
THANK YOU for "weighing in". I did a lot of Internet searching today and a ton of reading and you captured so succinctly what I have thus far found: no one knows what is the better course. It comes down to choice.
I must say that this site and your blog is one of the best that is on the web. You asked if your response has helped and I reply with a resounding "Yes". Thank you for doing this and I likely will be emailing you again. If I can contribute assistance or information in the future, then I will. Thank you again.
Hi Bernadette!
Sorry for the delay in response - I've been happily away for the holiday. Pat (as usual!) hit the nail on the head. I chose UAMS for a couple of reasons, namely treatment protocol, location and insurance considerations.
I was interested in tackling my MM aggressively and UAMS/MIRT's Total Therapy certainly fit the bill on that account. My local physicians referred me to UAMS and my first comprehensive workup by MM 'professionals' was there. I appreciated the organization of the institution, I liked the physicians and staff that I met, and the directness with which they clearly explained what my treatment regimen would be. Dr. Barlogie and Dr. Nair personally answered every question I asked. I also appreciated the fact that major research was taking place in Little Rock.
Other reasons included the fact that Little Rock is only fours from my home in Missouri and was by far the closest center on my list. Another compelling reason for me was that UAMS was, surprisingly, in my insurance network. They offered outstanding help to maneuver through the financial 'maze' that we all encounter.
I also had access to patients from my area that had been successfully treated at UAMS, and that certainly helped me make a more confident decision.
In speaking with representatives of the other programs, I found literally no reason to be wary of any of those institutions. Most were not in my insurance coverage, however, and none (as Pat alluded to) had adopted the not-so-conservative treatment approach I was interested in. Have they helped lots of people? You bet. Would I have gone to Anderson or one of the others if the treatment protocols were apples-to-apples? Maybe so. Do people die in the Arkansas program? Sadly, yes. This is the unfortunate nature of MM.
Bottom line: I wanted aggressive up-front therapy, saw the justification for tandem stem cell transplants, and the need for post-transplant maintenance treatment. They took my insurance and it was close enough for my family to visit me.
Am I 100% sure that I've taken the right course? Nope. If things went 'south' with my current treatment would I look elsewhere? Of course! But to date, things are`working well.
We all pray that you find a good solution for your mother. There are good options.
Sean
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