I was fortunate to receive a pair of detailed, helpful responses to my query about what to do following my disappointing auto stem cell transplant numbers last week.
Did I have an advantage because I’m a patient advocate and write about multiple myeloma? Probably. But that doesn’t mean you can’t get insider access and tips, too!
Let me share a few suggestions on how to get started.
Second opinion consults by phone:
Sometimes a second opinion is as easy as picking-up the telephone. The International Myeloma Foundation (IMF) has a patient hotline, staffed by experienced, knowledgeable counselors.
You can rely on their suggestions directly, or ask for a patient consult with the IMF’s Dr. Durie or another affiliated myeoma expert.
I have heard that there have been so many consult requests, there may be a small donation or fee required. That’s OK–it beats the alternative to flying across the country for a face to face meeting.
Sometimes, other doctors may agree to speak with a new patient on the phone prior to a visit. Remember to be persistent, but respectful.
Second opinion consults by email:
If you are comfortable using email, you may want to try and duplicate what I did with doctors Orlowski and Berenson (Please everyone, don’t contact them all at once, or I may get a pair of angry phone calls!)
Fortunately, most multiple myeloma experts should be more than happy to give you some therapy suggestions via email. Here are a few tips on how to maximize your chances of success.
First, draft a brief, descriptive summary of your condition–with an emphasis on BRIEF. One half page is plenty of information if organized correctly. Don’t forget to stress your most recent history–and the reason you are contacting them.
Then compose a list of three or four questions you hope they answer. Remember to expect generalities. It’s hard for them to be too specific with a limited amount of background.
Do your homework. Select three or four experts, representing a diverse range of treatment philosophies. Also, you might consider emailing up and coming myeloma experts, and not just “myeloma all stars.”
This way, even if a Dr. Anderson at Dana-Farber or Dr. Barlogie in Arkansas don’t respond, maybe one of the other, less known experts you email will get back to you.
Second opinion consults by mail
The same techniques can be employed using traditional snail mail. As a matter of fact, it may be a good idea to try a few using letters and email.
The disadvantage to using regular mail is it may take weeks to hear back from your selected experts, while email may only take a few days or a week.
Second opinions face to face
Of course nothing is more meaningful than a face to face meeting. Two possible stumbling blocks: Cost, and the insistence by many institutions to want to duplicate many of the tests (including bone marrow biopsies, for example) you have already undergone recently where you are currently being treated.
If you are in bad shape and anxiously searching for answers, chances are a new doc is going to want his or her own set of test results in a format they are used to working with. This may be negotiable. Ask lots of questions so you don’t undergo any unnecessary, duplicate tests.
Which brings me to my final suggestion: DON’T WAIT UNTIL THINGS GET SO BAD THAT YOU ARE DESPERATE!
Instead, trying to glean every bit of information you can along the way is a much more affective way to go. Try being pro-active by sifting through therapy options before things get out of control.
I wasn’t kidding yesterday when I mused about coming up with a “top ten list” of myeloma all stars. Give me a week or two and I will see what I can do. That may help you decide who might be best to contact.
Best of luck as you work to make the best therapy decisions possible!
Feel good and keep smiling! Pat