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Multiple myeloma specialists in West Virginia?

by Dippydoo on Tue Feb 14, 2017 4:06 pm

Are there any multiple myeloma specialists in or near West Virginia?

Dippydoo
Name: DippyDoo
Who do you know with myeloma?: Myself MGUS
When were you/they diagnosed?: 2/9/2017
Age at diagnosis: 49

Re: Multiple myeloma specialists in West Virginia?

by kshornb on Tue Feb 14, 2017 6:19 pm

I think it would depend on where you are in West Virginia. I believe that a lot of West Virginians that live on the east side of the state (Wheeling, etc.), go to University of Maryland Medical Center in Baltimore. My myeloma specialist, for example, is Dr. Ashraf Badros, who is at that center.

kshornb
Name: kshornber
Who do you know with myeloma?: self
When were you/they diagnosed?: July 2015
Age at diagnosis: 52

Re: Multiple myeloma specialists in West Virginia?

by Dippydoo on Tue Feb 14, 2017 10:00 pm

Thank you, I'm about 3 hours southeast of Wheeling. But if I have to, I will travel. Just afraid of traveling too far as I progress and get sicker. But will consider this as an option.

Dippydoo
Name: DippyDoo
Who do you know with myeloma?: Myself MGUS
When were you/they diagnosed?: 2/9/2017
Age at diagnosis: 49

Re: Multiple myeloma specialists in West Virginia?

by Little Monkey on Thu Feb 16, 2017 10:46 am

Are you far from Columbus, Ohio? There are a number of myeloma specialists at the Ohio State cancer center in Columbus.

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: Multiple myeloma specialists in West Virginia?

by TerryH on Thu Feb 16, 2017 11:42 am

I'm not aware of any myeloma specialists based in West Virginia. Most likely you'll need to go out of state, to either Ohio, Virginia, or Maryland for a specialist. See this list of multiple myeloma treatment centers organized by state; it may help you find a center close to you.

TerryH

Re: Multiple myeloma specialists in West Virginia?

by Dippydoo on Thu Feb 16, 2017 10:28 pm

Thanks everyone for your input. I really am very naive when it come to building a team of doctors to treat me effectively. So when one has no local specialist and treatment has to take place out of your home state, will the out of state specialist work with a local oncologist? So I'm not traveling every month or so out of state? Or will they insist on me being treated solely by their team?

I'm not real sure how all this works and I'm trying to get a picture of how I'm going to be able to accomplish what I need to do.

Also, I might consider treatment centers in Philadelphia, including the Cancer Treatment Center of America that is there. Philadelphia is about 3 1/2 hours from where I live.

Dippydoo
Name: DippyDoo
Who do you know with myeloma?: Myself MGUS
When were you/they diagnosed?: 2/9/2017
Age at diagnosis: 49

Re: Multiple myeloma specialists in West Virginia?

by moonscape on Thu Feb 16, 2017 11:51 pm

My specialist is 45 minutes away, but my treatment is administered by my local oncologist / hematologist. They work closely together. I see my specialist quarterly, but if she was further away, I could get away with seeing her twice a year.

moonscape
Who do you know with myeloma?: me
When were you/they diagnosed?: 11/2015

Re: Multiple myeloma specialists in West Virginia?

by Dippydoo on Fri Feb 17, 2017 12:28 am

Thank you, moonscape, I was wondering if that was possible. I guess it would depend on the willingness of the doctors involved, but I would think most would accommodate those who had to travel.

Dippydoo
Name: DippyDoo
Who do you know with myeloma?: Myself MGUS
When were you/they diagnosed?: 2/9/2017
Age at diagnosis: 49

Re: Multiple myeloma specialists in West Virginia?

by NStewart on Mon Feb 20, 2017 1:19 pm

Most specialists are more than willing to work with a local oncologist. They will be the ones to recommend the treatment and the local oncologist will provide the treatment and regular testing. Talk with your local oncologist to make sure that s/he is open to such a collaboration.

If you are going to travel to a specialist, you might look at Ohio State University Cancer Center, Abramson Cancer Center at Penn in Philadelphia, Johns Hopkins and University of Maryland in Baltimore. They all have robust myeloma programs and very active research programs.

You will get it all together. It takes time, but you are thinking ahead and doing a good job. It is important to have a specialist on your team. Research is showing that those people who see a myeloma specialist have better long-term outcomes and longer survival than those who just see a local oncologist.

All the best,
Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Multiple myeloma specialists in West Virginia?

by LCharlier on Tue Feb 21, 2017 10:10 am

Dippydoo,

From your description of your location, I'm not entirely sure where you are located in West Virginia. While I no longer live in that area, I grew up in Pittsburgh (PA) and went to school at West Virginia University (WVU) so I am quite familiar with the medical resources available in SW PA. In Pittsburgh specifically, there is the Mario Lemieux Center for Blood Cancers which is part of the UPMC CancerCenter at the University of Pittsburgh Cancer Institute. They specifically address leukemia, lymphoma and multiple myeloma.

Hope this helps - good luck!

Lloyd

LCharlier
Name: Lloyd
When were you/they diagnosed?: 01-16-2015
Age at diagnosis: 55

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