My brother was diagnosed last month. He was told by his oncologist that it is very aggressive with chromosome 13 deletion. He has only seen the general oncologist and director of the stem cell transplant center. I do know there are myeloma experts in this practice. It is very large (all over Colorado).
When do we see the expert? Is there some sort of protocol?
I asked the oncologist certain questions and he said the stem cell transplant doctor could answer. Do we make an appointment with him?
Please forgive my ignorance but this is very new to me.
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Re: How to arrange to see a myeloma expert?
Hi Arrowhead,
I'm sorry to hear about your brother's diagnosis. I'd recommend seeing a myeloma specialist as soon as you can. In my case, I did some checking on the web, and then just called the specialist I wanted to see and his staff made an appointment for me; no special protocol to get the appointment. It has worked out well for me. There may be referrals or stuff like that that you need to do for your health insurance, but that's a different story.
One thing that jumped out at me from your post - please note that there is a difference between a doctor being an stem cell transplant [SCT] specialist and being a myeloma specialist. You can talk with both, but be sure to see at least one myeloma specialist.
It may turn out that an SCT may not be the best first-line therapy for your brother, so you want to see someone who is familiar with the wide range of therapies and drugs available to treat multiple myeloma these days.
Good luck to your brother.
I'm sorry to hear about your brother's diagnosis. I'd recommend seeing a myeloma specialist as soon as you can. In my case, I did some checking on the web, and then just called the specialist I wanted to see and his staff made an appointment for me; no special protocol to get the appointment. It has worked out well for me. There may be referrals or stuff like that that you need to do for your health insurance, but that's a different story.
One thing that jumped out at me from your post - please note that there is a difference between a doctor being an stem cell transplant [SCT] specialist and being a myeloma specialist. You can talk with both, but be sure to see at least one myeloma specialist.
It may turn out that an SCT may not be the best first-line therapy for your brother, so you want to see someone who is familiar with the wide range of therapies and drugs available to treat multiple myeloma these days.
Good luck to your brother.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: How to arrange to see a myeloma expert?
How do you identify a myeloma expert? Would that be a hematological oncologist?
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SusanS - Name: Susan Schaefer
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 75
Re: How to arrange to see a myeloma expert?
Hi Susan, go to the multiple myeloma treatment centers link here and it will take you to sites which have major cancer centers which will have experts who deal exclusively with myeloma. These places are usually National Cancer Institute-approved centers which render excellent care for all cancers, including rarer ones like myeloma. Many general hem/oncs may only have a few myeloma patients.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: How to arrange to see a myeloma expert?
Arrowhead:
See the private message I sent you for the centers in Colorado that have multiple myeloma experts. There are three: UCH, CBCI and RMCC. I included names of folks to seek out at each one of these centers. You just contact their office and make an appointment.
See the private message I sent you for the centers in Colorado that have multiple myeloma experts. There are three: UCH, CBCI and RMCC. I included names of folks to seek out at each one of these centers. You just contact their office and make an appointment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How to arrange to see a myeloma expert?
I think you need more information on the SCT specialist. In my case, the specialist was a multiple myeloma specialist. The oncologist should be able to give you answers. It is surprising that he hasn't volunteered some, but, then again, if you are like what I would guess is somewhat standard for most of us, the shock of the diagnoses and the lack of information about the disease doesn't allow many questions.
I would get back to the oncologist with a list of questions and then go from there.
He does seem to be premature in talking about a SCT.
I would get back to the oncologist with a list of questions and then go from there.
He does seem to be premature in talking about a SCT.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: How to arrange to see a myeloma expert?
My experiences with the two transplant centers in Colorado is that if you see a doc affiliated with their transplant centers, that the assumption is simply that your treatment will indeed be a transplant. Later when I went to one of the very well attended multiple myeloma support groups located at one of these transplant centers, it turned out that 100% of the attendees had also done a transplant. When I asked the question of the entire group whether any one had ever considered or discussed any other option, the answer was a unanimous "no".
This was my personal experience and I'm only smoldering and I have no adverse cytogenetics. So, I found it a bit disconcerting that these doctors were all telling me that the writing was on the wall that I would be progressing in a year or so and that my only real treatment option was simply an ASCT. This is why I'm always advocating trying to at least get a second opinion from an institution or a doctor that is a bit more open minded on this subject and will at least discuss drug-only treatment versus transplant with you. As always, I'm not trying to disparage transplants, but I firmly believe it is good to have a balanced view of one's options.
This was my personal experience and I'm only smoldering and I have no adverse cytogenetics. So, I found it a bit disconcerting that these doctors were all telling me that the writing was on the wall that I would be progressing in a year or so and that my only real treatment option was simply an ASCT. This is why I'm always advocating trying to at least get a second opinion from an institution or a doctor that is a bit more open minded on this subject and will at least discuss drug-only treatment versus transplant with you. As always, I'm not trying to disparage transplants, but I firmly believe it is good to have a balanced view of one's options.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How to arrange to see a myeloma expert?
Terryl1 wrote: "Hi Susan, go to the multiple myeloma treatment centers link here and it will take you to sites which have major cancer centers which will have experts who deal exclusively with myeloma. These places are usually National Cancer Institute-approved centers which render excellent care for all cancers, including rarer ones like myeloma. Many general hem/oncs may only have a few myeloma patients."
Thanks Terryl1,
I checked the list. My folks are in Post Falls ID (across the border from Spokane WA). So Seattle is the closest to them.
And that's not really "close."
Personally I'm trying to get them to consider moving closer to me (Nashville TN) where they could access the Vanderbilt Ingram Cancer Center.
Thanks Terryl1,
I checked the list. My folks are in Post Falls ID (across the border from Spokane WA). So Seattle is the closest to them.
And that's not really "close." Personally I'm trying to get them to consider moving closer to me (Nashville TN) where they could access the Vanderbilt Ingram Cancer Center.
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SusanS - Name: Susan Schaefer
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 75
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