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First myeloma specialist appointment - what to expect?
I have an appointment this month with a myeloma specialist at the Mayo Clinic. I have had an appointment with a myeloma specialist before and really am not sure what to expect. Any advise you can give on seeing a myeloma specialist and what I could possibly expect would be great.
Re: First myeloma specialist appointment - what to expect?
Hi NotSamantha,
The Mayo has some great multiple myeloma specialists, so you will be in very good hands. Here are some pointers for that first appointment:
https://myelomabeacon.org/forum/recently-diagnosed-with-mgus-t7153.html
I'd also take a copy of Dr. Voorhees' response (below) and copies of all your earlier lab reports to this appointment.
https://myelomabeacon.org/forum/normal-spep-pattern-faint-iga-kappa-band-t7163.html#p47098
The Mayo has some great multiple myeloma specialists, so you will be in very good hands. Here are some pointers for that first appointment:
https://myelomabeacon.org/forum/recently-diagnosed-with-mgus-t7153.html
I'd also take a copy of Dr. Voorhees' response (below) and copies of all your earlier lab reports to this appointment.
https://myelomabeacon.org/forum/normal-spep-pattern-faint-iga-kappa-band-t7163.html#p47098
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: First myeloma specialist appointment - what to expect?
NotSamantha;
I think the first appointment will review all prior testing and order all necessary tests to complete your disease analysis. My understanding of Mayo is they have specific protocols they prefer based upon your risk determination and overall health.
If you live close to Mayo, the consult might be an hour or two. If you are from out of town, they might schedule numerous tests to be performed over several days. In my case, those tests were a bone marrow biopsy, DWiBs MRI, full body MRI, PET/CT, bone density, EKG, CardioEchogram, pulmonary testing, over 20 vials of blood, 24-hour urine, plus meeting with insurance, social worker, and clinical trial data managers.
Their goal will be to determine as much about your disease as possible, determine how strong your health is to tolerated potential treatment options, and last but not least - determine how you want to attack the myeloma and your quality of life concerns. Different people are in different stages of their life and want to pursue different plans.
Craig
I think the first appointment will review all prior testing and order all necessary tests to complete your disease analysis. My understanding of Mayo is they have specific protocols they prefer based upon your risk determination and overall health.
If you live close to Mayo, the consult might be an hour or two. If you are from out of town, they might schedule numerous tests to be performed over several days. In my case, those tests were a bone marrow biopsy, DWiBs MRI, full body MRI, PET/CT, bone density, EKG, CardioEchogram, pulmonary testing, over 20 vials of blood, 24-hour urine, plus meeting with insurance, social worker, and clinical trial data managers.
Their goal will be to determine as much about your disease as possible, determine how strong your health is to tolerated potential treatment options, and last but not least - determine how you want to attack the myeloma and your quality of life concerns. Different people are in different stages of their life and want to pursue different plans.
Craig
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
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