This week's poll is about how many myeloma experts you have consulted with about if, when, where, and how to treat your multiple myeloma.
A few clarifications:
First, this question is only for readers who have symptomatic / active multiple myeloma. That is, not MGUS or smoldering myeloma -- a similar poll for patients with those conditions will be asked in the near future.
Second, by "myeloma expert," we are referring to hematologist/oncologists who specialize in multiple myeloma and treat many myeloma patients at a given time. Please do not count general oncologists or hematologist/oncologists who treat mostly other types of cancer.
Third, you can count any myeloma expert whom you see regularly to review lab work or discuss treatment options, or whom you consulted with during one or more private in-person or by-phone meetings in which they reviewed your medical history/records and gave you an informed opinion about if, when, where, or how to treat your myeloma. Please do not count myeloma experts you may have communicated with briefly in a public manner (e.g., during a Q&A session of a teleconference call) or without them having access to your medical records (e.g. a brief email exchange or these forums).
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers. For instance, why have you chosen this number of myeloma experts to consult with?
For those interested in comparing these results with those from a year ago, here are the results from the 2012 version of this poll:
https://myelomabeacon.org/forum/weekly-poll-consultation-with-myeloma-experts-t1071.html
Forums
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Re: Weekly Poll - Consultation With Myeloma Experts - 2013
I haven't consulted with any multiple myeloma Specialists because there are none in Oklahoma. However, my doc is a hematologist/oncologist.
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Obayan
Re: Weekly Poll - Consultation With Myeloma Experts - 2013
I followed the advice of my hem/onc physician and went to the University of Michigan hospital to see the multiple myeloma expert there. They communicate often and are coordinating all of my treatment to allow me to do what I can in Jackson, close to my home, and only travel to Ann Arbor to U of M when absolutely necessary.
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KayCeP1372 - Name: Kayce
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 40
Re: Weekly Poll - Consultation With Myeloma Experts - 2013
I was diagnosed by a hematologist/oncologist who treats all kinds of cancer. I felt that I needed to get a second opinion from and be treated by someone who specializes in Myeloma since it is a relatively rare disease. Fortunately I live in Philadelphia where there are a few health systems with Myeloma programs. Since I worked for the University of Pennsylvania Health System at the time I asked colleagues who worked with the bone marrow transplant program at the Abramson Cancer Center to ask around as to who they would recommend I make an appointment with. They all came back with the same name. So, I made an appointment with that oncologist and decided within the first few moments of my first visit that he was the man for me.
My oncologist is upbeat, responsive to my wishes, and always discusses the various options for treatment with me before we decide together what we will do. We discuss research on a regular basis. His team has always been responsive to changes for the worse in my bloodwork within a day of receiving the results. So, I feel confident and safe in their care.
My oncologist is upbeat, responsive to my wishes, and always discusses the various options for treatment with me before we decide together what we will do. We discuss research on a regular basis. His team has always been responsive to changes for the worse in my bloodwork within a day of receiving the results. So, I feel confident and safe in their care.
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Weekly Poll - Consultation With Myeloma Experts - 2013
I posted in another section about my husbands Myeloma and asked about a specialist. HOW do you find one? I ran everything I could think of on google and no one came up in Las Vegas, NV. He is going to a hematologist/oncologist at our cancer center, but he treats all difference cancers and only about 3 other Myeloma patients. His protocol isn't consistent, seems to change around because of his side effects, but M spike varies all the time.
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cowgirl52
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