I am looking for a multiple myeloma specialist. I live in southwest Michigan about 2 hours from Chicago. I was wondering who your doctors were either in Michigan or the Chicago area.
I have been seeing a general oncology doctor but need to find a specialist to make sure I am being treated properly. I would love to hear about who you see & if you like them. Also if you are in this area, where did you have your stem cell transplant?
Thanks,
Terri
Forums
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: Myeloma specialist recommendation - Michigan or Chicago
We are in Kalamazoo. My husband sees a local oncologist. His transplant was done at Mayo in Minnesota. His myeloma specialist at Mayo makes all treatment plans and the local oncologist is more than happy to follow them.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Myeloma specialist recommendation - Michigan or Chicago
There are some excellent doctors in Chicago area.
I see Dr. Jayesh Mehta at Northwestern and I like him a lot. His wife Dr. Seema Singhal is also a multiple myeloma expert and she is there too. I had all my treatment run by Dr Mehta at Northwestern. Also had 2 stem cell transplants there. They do a lot there. My induction chemo and maintenance chemo is overseen by Dr Mehta, but I have it done locally as I'm an hour north of Chicago.
I have also hear great things about Dr Jakubowiak at University of Chicago.
In Detroit, there is Dr. Zonder from Karmanos Cancer Institute. I've heard him speak and I liked him a lot. If I were in Detroit area, I would pick him. I'm originally from Michigan. I know Kalamazoo is about in the middle of Detroit-Chicago.
All 4 of these doctors are VERY highly regarded.
Ray
I see Dr. Jayesh Mehta at Northwestern and I like him a lot. His wife Dr. Seema Singhal is also a multiple myeloma expert and she is there too. I had all my treatment run by Dr Mehta at Northwestern. Also had 2 stem cell transplants there. They do a lot there. My induction chemo and maintenance chemo is overseen by Dr Mehta, but I have it done locally as I'm an hour north of Chicago.
I have also hear great things about Dr Jakubowiak at University of Chicago.
In Detroit, there is Dr. Zonder from Karmanos Cancer Institute. I've heard him speak and I liked him a lot. If I were in Detroit area, I would pick him. I'm originally from Michigan. I know Kalamazoo is about in the middle of Detroit-Chicago.
All 4 of these doctors are VERY highly regarded.
Ray
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RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
Re: Myeloma specialist recommendation - Michigan or Chicago
Hi Terri,
We live in northern Michigan. My husband's multiple myeloma was diagnosed by a local oncologist / hematologist, and he then suggested we talk to the folks at the University of Michigan's Cancer Center in Ann Arbor, since they have a clinic that specializes in multiple myeloma. My husband had 83% multiple myeloma in his marrow, numerous lesions, and was pretty sick. Now, 2 1/2 years later, my husband is in remission. It's been very challenging for him at times, but he made it through treatment and problems into a pretty good place now.
At our first appointment at UM, we learned he fit the criteria for a clinical trial taking carfilzomib [Kyprolis], Revlimid, and dex. It was the last slot they had open and after they explained everything to us, we decided it was a good option.
The travel time from our home to UM was significant in order for him to be in the trial, since the infusions could only be done at UM. The first eight months required that he was at UM on Monday and Tuesday for three weeks each month. After that, he went every other week on Monday and Tuesday for another 16 months, for a total in the clinical trial of 24 mos. It took us 31/2 hours one way to get to UM, and we had some awful winter roads a lot of the time. Fortunately, we could stay with family Monday nights, so we only traveled one round trip per week.
UM collected my husband's stem cells between cycles 4 and 5, and they are stored there for future transplant if / when needed. My husband was 59 when he was diagnosed and, other than the multiple myeloma, he was in good health, but he was pretty determined not to go through a transplant unless absolutely necessary. The transplant doctor we met with was in agreement he could wait.
We both have been highly pleased with the treatment he received at UM. Everyone was outstanding, and when my husband completed his 2 years of treatment, it was kind of sad for us, and somewhat unsettling, like a little kid who has lost their security blanket! Now he returns to UM quarterly and we enjoy seeing everyone who took such good care of him.
I wish you all the best.
Chris M
We live in northern Michigan. My husband's multiple myeloma was diagnosed by a local oncologist / hematologist, and he then suggested we talk to the folks at the University of Michigan's Cancer Center in Ann Arbor, since they have a clinic that specializes in multiple myeloma. My husband had 83% multiple myeloma in his marrow, numerous lesions, and was pretty sick. Now, 2 1/2 years later, my husband is in remission. It's been very challenging for him at times, but he made it through treatment and problems into a pretty good place now.
At our first appointment at UM, we learned he fit the criteria for a clinical trial taking carfilzomib [Kyprolis], Revlimid, and dex. It was the last slot they had open and after they explained everything to us, we decided it was a good option.
The travel time from our home to UM was significant in order for him to be in the trial, since the infusions could only be done at UM. The first eight months required that he was at UM on Monday and Tuesday for three weeks each month. After that, he went every other week on Monday and Tuesday for another 16 months, for a total in the clinical trial of 24 mos. It took us 31/2 hours one way to get to UM, and we had some awful winter roads a lot of the time. Fortunately, we could stay with family Monday nights, so we only traveled one round trip per week.
UM collected my husband's stem cells between cycles 4 and 5, and they are stored there for future transplant if / when needed. My husband was 59 when he was diagnosed and, other than the multiple myeloma, he was in good health, but he was pretty determined not to go through a transplant unless absolutely necessary. The transplant doctor we met with was in agreement he could wait.
We both have been highly pleased with the treatment he received at UM. Everyone was outstanding, and when my husband completed his 2 years of treatment, it was kind of sad for us, and somewhat unsettling, like a little kid who has lost their security blanket! Now he returns to UM quarterly and we enjoy seeing everyone who took such good care of him.
I wish you all the best.
Chris M
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Chris M
Re: Myeloma specialist recommendation - Michigan or Chicago
Agree with the previous poster that recommended the Mayo Clinic in Rochester, MN. I received excellent care and treatment there as they have some of the top hematologists in the world on staff.
Also, because you live in the Midwest, the Minnesota winter weather shouldn't be a big shock. I live in South Carolina, so my two months in Rochester during last winter's daily cold and snow was very unpleasant. Even so, the results etc. were well worth that small inconvenience.
Also, because you live in the Midwest, the Minnesota winter weather shouldn't be a big shock. I live in South Carolina, so my two months in Rochester during last winter's daily cold and snow was very unpleasant. Even so, the results etc. were well worth that small inconvenience.
Re: Myeloma specialist recommendation - Michigan or Chicago
Thanks for all of your replies, I need to check into some doctors/specialists soon.
Does my current oncologist need to refer me? Also, do all places do this as an outpatient thing for the SCT?
I know you mention $30/night and that sounds nice, but it adds up fast and then Hubby would be off work to be there to take care of me 24/7.
Grrr it sucks that on top of all this you also have to worry about how you are going to be able to afford all of this. I think my insurance for the hospital stay should be ok, not sure about the prescription parts. For normal prescriptions it has been fine, but not sure how it will be for chemo-type things. I know medicare only pays for 1 transplant; not sure about my supplement insurance.
Does insurance help with the costs of staying somewhere while in treatment by any chance? I live near St. Joseph, MI, right across the lake from Chicago. If we could take a boat across it might take less time
We have no relatives or friends near any major hospitals anywhere, I can see where that could really be of help also.
Thanks again for all of the advice & help.
Good luck to everyone here.
Terri
Does my current oncologist need to refer me? Also, do all places do this as an outpatient thing for the SCT?
I know you mention $30/night and that sounds nice, but it adds up fast and then Hubby would be off work to be there to take care of me 24/7.
Grrr it sucks that on top of all this you also have to worry about how you are going to be able to afford all of this. I think my insurance for the hospital stay should be ok, not sure about the prescription parts. For normal prescriptions it has been fine, but not sure how it will be for chemo-type things. I know medicare only pays for 1 transplant; not sure about my supplement insurance.
Does insurance help with the costs of staying somewhere while in treatment by any chance? I live near St. Joseph, MI, right across the lake from Chicago. If we could take a boat across it might take less time
We have no relatives or friends near any major hospitals anywhere, I can see where that could really be of help also.
Thanks again for all of the advice & help.
Good luck to everyone here.
Terri
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: Myeloma specialist recommendation - Michigan or Chicago
I've not heard of insurance paying for any kind of lodging, but that doesn't mean it doesn't happen.
At Northwestern, the SCT is done in-patient. My wife stayed with me in the room for both of my transplants. There is a kind of fold out couch she stayed on. It wasn't ideal, but it was free and it worked.
At Northwestern, the SCT is done in-patient. My wife stayed with me in the room for both of my transplants. There is a kind of fold out couch she stayed on. It wasn't ideal, but it was free and it worked.
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RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
Re: Myeloma specialist recommendation - Michigan or Chicago
Chris M where in northern Michigan are you? My husband was diagnosed in January and we are also in northern Michigan. We are in East Jordan. Small world.
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tlmsreid20
Re: Myeloma specialist recommendation - Michigan or Chicago
tlmsreid20 - My in laws own a place in Central Lake and we visit there a few times a year. Love the area. I did that East Jordan triathlon about 10-15 years ago (long before myeloma).
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RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
Re: Myeloma specialist recommendation - Michigan or Chicago
When I did my stem cell transplant at Duke, I was with BC/BS Anthem, and they paid 100% of my lodging and expenses. I think there was a limit, which we did not hit. If we had not hit our yearly max, it would have been a co-pay. Being on Revlimid, we hit our max payout and co-pay max within 2 months. Everything from there is 100%. It's easiest for me just to save the 12k max total, pay it in January, and get it over with!
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Bluemountain
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