I have been filing-away a number of commonly asked patient questions to feature in a Q/A post. This is it!
Pat
Why is it necessary to drive long distances to see a multiple myeloma specialist? Could the doctor who I am seeing simply send a sample of my blood–or a copy of my test results–to the specialist instead of me going to see the specialist myself? And if the specialist needs to “see me,” couldn’t he do that via computer camera in my doctors office? Then the specialist, my doctor and me could all discuss a strategy together, right there in my doctor’s office” Your thoughts? Den
Yes! Yes to all of that. The key is finding someone who works with a lot of myeloma patients and is up-to-date on the latest therapy options. When I was going to Mayo Clinic and lived more than two hours away, I only went back every three months or so–unless I needed a specific procedure like my stem cells harvested. As long as your case isn’t unusual this approach should work just fine. But it may be necessary to travel to a larger cancer center in order to participate in certain clinical trials. Good luck! Pat
Dear Pat,
Do you know anyone with a pre-existing medical condition that has been denied coverage because of their health care history? Sue
You bet, Sue! Lots of them. Fortunately, a provision in the new Affordable Care Act, called the Pre-Existing Insurance Plan, could come to the rescue. Help may be provided by the Feds or your state government, depending on where you live. Here is a link to a comprehensive site which explains the new program:
Pre-Existing Insurance Plan Details
Glad to help- Pat
Pat: What is CyBorD, and when/how is it used?
Great question! Reader Pete Wirth emailed me the answer to this one:
Joseph Mikhael, M.D., hematologist at Mayo Clinic in Arizona, discusses study findings that show how CyBorD, a triple chemotherapy drug combination has been successful in improving the care for patients with AL amyloidosis. This incurable disease produces abnormal proteins in the bone marrow which travel to major organs of the body, leaving deposits that typically damage the heart and kidneys.
YouTube-AL Amyloidosis
Thanks, Pete! I get ten or twelve myeloma related questions every day. I try and answer them all, even if I need to make a few calls or research them first. I hope that publishing answers to questions like these might help other readers, too.
I’m speaking to one of the original, long standing multiple myeloma support groups this morning in St. Louis Park, Minnesota. Then I hop on a plane and fly back home this afternoon. I will share another “road warrior” story with you tomorrow.
It will sure feel good to sleep in my own bed tonight! Pat
Pat Killingsworth
