Pat’s Place: When And How A Myeloma Patient Should Get A Second Medical Opinion
As I finish the outpatient phase of my stem cell transplant, I have been receiving a bunch of emails asking for advice about when and how to go about getting a second opinion about one’s myeloma treatment.
I believe that a newly diagnosed multiple myeloma patient should always try to get a second opinion. But I also believe a myeloma patient should consider seeking a second opinion anytime their oncologist/hematologist suggests a major treatment shift.
For example, maybe you are on a certain treatment regimen. But your monoclonal protein numbers have been inching up, so your medical oncologist suggests you add another drug to the mix. Or perhaps your oncologist recommends a stem cell transplant.
What now?
First, I would suggest asking your current medical oncologist whom they might suggest seeing for a second opinion.
Then I would recommend spending some time investigating cancer centers that specialize in myeloma in your area. Or ask other patients for recommendations.
Next, check with your insurance company. How far will your policy allow you to go? Can you cross state lines? How much of the process will your insurance cover? For instance, most myeloma specialists want to run their own tests. Will your insurance pay for a full range of diagnostics, even if many of them have been run by your original doctors? And don’t take your policy’s word for it. Speak with a supervisor at your insurance company, and make sure you get something in writing.
Particularly if you’re not limited to a small number of doctors or treatment centers, I highly recommend you seek a second opinion from a top expert in the field. There are a quite a few top myeloma specialists, so selecting one or two can seem like a daunting task, but if I can do it, you can do it too.
Find out a bit about their center and their philosophy regarding treating myeloma. Does the center have more than one well-respected myeloma specialist? Do those you are considering use an aggressive treatment approach, or do they try to manage the myeloma with a less aggressive regimen that is more convenient and tolerable for the patient? Do they tend to recommend zero, one, or two stem cell transplants?
If you want an opinion from a myeloma expert, but travel is difficult or expensive for you, another option is to sign up for a telephone consult through the International Myeloma Foundation. You can learn a lot by speaking with the well-respected myeloma experts who volunteer some of their time to this valuable program.
Here's an interesting dilemma: What if your second opinion is extremely different than your first? Try a third! Or start researching and learning more about what each doctor suggested. Don’t forget that your opinion is important, too.
This can all be a lot of work, but imagine how much you will learn about your treatment options.
I did a lot of homework before deciding when and where to undergo my stem cell transplant. Based on how well I seem to be doing so far, I believe it was time well spent.
Good luck with your homework. I hope you find the answers you are looking for. Feel good and keep smiling! Pat
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Good advice, Pat.
Hi Pat,
Glad to hear every thing is going well.
Sharon From Australia.
Pat, great advice!! Once the shock has lessened the next task is to become a part of the care team, doing your homework, and becoming comfortable with the treatment plan. If that means a second opinion, do it. And in the end, the patient is the one to make the final decisions for treatment based on all informaton. It's tough - but the more you know about the disease, treatments, possible outcomes, the more in control you will feel. Read your blog -- hope you can be home with the "kids" soon!! Our best to you and Pattie!! Rex and Kay
Pat, great column again. Where exactly did you go for your stem cell transplant and where exactly are you now as far as treatment goes? On August 3rd I go back to my oncologist to see about my bone marrow aspiration and biopsy results. We will then talk about either getting a second stem cell transplant or going on maintenance therapy. I am currently getting my treatment at the Helen Graham Center in Newark, Delaware. I have no complaints so far but would like to keep my options open about getting a second or third opinion. I have been out of work 6 month's now and depending on my results on the 3rd I am planning to go back to work even if it is on a modified schedule. Keeping positive and waiting for good results.
Nelson-
I got my transplant at Moffitt Cancer Center on University of South Florida campus just north of Tampa. I'm doing far better than I would have ever expected. But you have gone through one of these too. Would your maintenance be Revlimid? Has it worked for you before? Guess I might try maintenance first, but numbers and your reaction to different meds in the past make such a difference on what you should decide.
I was on Revlimid maintenance for almost four years. Dropped dex after six months. I had so few negative effects from Revlimid (just low white count, red count stayed up when I dropped the dex) and occasional low grade, flu like symptoms. I would do it again...
Welcome home, Pat. Your own "stuff" It should all be downhill now. Expecting good results. I had the big catheter and as afraid as I was of the placement and removal it was wonderful never having a stick the whole time.
Yes to Revlimid maintenance. It worked great in lowering my numbers. My main discomfort now is my neuropathy. If could get that fixed I would feel so much better. I feel it mostly in my feet and my calfs. I will talk to the Doctor again about the neurotin dosage or some other form of treatment on my next visit. Thanks.
It's so good to hear that you're doing well. Keep it up Pat.
Linda
Thanks to all! Except for a "sour" stomach and expected fatigue, no worries! Home 10 days early...
Pat, still can't post on your blog. Responding to "J" and you concerning possible change in medicare for orphan disease drugs. Since I am no longer funded by LLS for my Revlimid and don't qualify for any other financial support I plan to get my Revlimid in Canada after the first of the year if I am still stable. I am grateful for the retirement income my husband and I have, yet with increased cost of living it is more difficult to make ends meet. My life depends on being able to afford the drugs I need. This proposal would mean I would have large co pays in the event I were to need these drugs. I agree, look at defense spending and other areas of the budget. No easy solution to this mess in Washington. Thank you for keeping us updated. Linda
So sorry you have to fight a war on two fronts: The financial battle is so unfortunate. Best of luck to you, Linda!
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page