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Am I becoming a myeloma “snob?” More about second opinions

Home/About Pat, Support, Tips/Am I becoming a myeloma “snob?” More about second opinions

Am I becoming a myeloma “snob?” More about second opinions

I have been pushing the point about how important it is to get a second opinion prior to making any major therapy decision pretty hard lately.

I have blogged about it on this site and featured the premise in my monthly Myeloma Beacon column for March.  If you haven’t read it, take a few minutes and read it and Monday’s short commentary:

Read my column in the Myeloma Beacon and let’s discuss tomorrow

A few things came up, and “tomorrow” got pushed back a few days.  But I didn’t want to let this go just yet–it is too important.

When I speak to support groups–like warm, welcoming and very well informed group in Hilton Head Tuesday, run by ten year myeloma survivor Olvis and his lovely wife and caregiver, Martha–I always stress how vital it is that we all become well informed and take responsibility for our own care.

Second opinions are perfect examples of how this knowledge can be used constructively.

It sounds so easy:  “Get a second opinion.”

But as dozens of readers have reminded me through comments and email, it isn’t always that easy.

One reader even hinted that I might be a “myeloma snob,” since I always suggest using Mayo Clinic, UAMS or other top line cancer treatment centers which specialize in treating multiple myeloma.

After reading this month’s Myeloma Beacon column, what do you think?

I may surprise you by admitting they may have a point.  

When I was first diagnosed, I was fortunate enough to live a few short hours from Mayo Clinic–and my insurance considered Mayo to be a primary provider–meaning I could go there and be fully covered.

But several readers lamented that they were far from a major myeloma treatment center.  What then?

And what about the time and travel required?  And what about the cost?

There are all valid points, and I apologize if I haven’t been clear or haven’t kept all of these things in mind.

But a well informed myeloma patient and/or caregiver can overcome any of these objections.

For example, phone and computer seminars are becoming more and more common.  Offered by CancerCare, the IMF and a number of other groups, I could probably listen to one or two of these each week for months following ASH or ASCO.

But I just listen.  Most also allow you to ask the myeloma expert(S) specific questions about your situation at the end.

So jump-in and get involved!  Ask Dana-Farbers Doctors Anderson or Richardson, or one of many Mayo Clinic myeloma specialists questions about which path they recommend you take.

Maybe Dr. Vij with Washington University in St. Louis is on the line.  Or possibly Dr. Raji, my current specialist, Dr. Alsina at Moffitt,  or any number of other young, up and coming myeloma docs are accessible and ready to answer your questions.

These quick consults count as second opinions!  Not ideal, but the information you get speaking with them by phone or computer is invaluable if you need to decide which therapy to use and when to start.

You can ask your medical oncologist to make a few phone calls.  You can seek out and find an in-state hematologist who treats a number of myeloma patients and see what they think.

Just because you live far from a major myeloma treatment center, doesn’t mean there aren’t a lot of other patients in your area being treated.

At Tuesday’s support group meeting, five or more of the patients were being treated by a Dr. Thomas.  Sounds like he treats enough myeloma to know his stuff–and I understand he is quick to refer patients to specialists.

Two patients had traveled all the way to Arkansas and UAMS.  Several others headed south two or three hours to Mayo-Jacksonville.  One went north to Duke.  Another to a medical school in Augusta, Georgia.

By the way, I spoke there two months ago.  Great young, enthusiastic staff.  New facilities.  Sure, they only do 60 auto transplants each year, but that counts.  I told Pattie that I would be very comfortable being treated there…

The key is not taking no for an answer!  Not letting a few obstacles stop you from possibly adding months or years to your life by following a flexible treatment plan using the latest drug combinations.

You can email me.  You can call the IMF’s Patient Hotline.  I can tell you from personal experience that the counselors that work there  really know their stuff!

Read one of my books and/or check this site at least twice a week. Join the myeloma LIST/SERVE.  Talk with other patients in the waiting room.  Check-out another great site called MyMultipleMyeloma.com–and read the Myeloma Beacon regularly.

And what about clinical trials?  Many allow you to stay close to home for treatment after an initial trip to one of the larger myeloma centers.

So no–I’m not a myeloma snob!  (Maybe I should drop the tie in some of my pictures!) But I can be a pain in the butt if I think any of my fellow myeloma friends are settling for sub-standard care simply because it’s “hard.”

Living with multiple myeloma is hard!  So get over it!

The fact you are reading this post means you are probably already ahead of the game.  Taking responsibility for your own care–and becoming a better informed patient–should help you feel empowered and stronger.

Give it a try.  You just might find it makes it a lot easier to feel good and keep smiling!  Pat