Second opinions: It's helpful to know different centers have different philosophies. Depending on the type of multiple myeloma you have and CRAB features, you may prefer one over the other. I'd describe Mayo's approach as in the middle. I think of Arkansas as being among the more aggressive treatment approaches. Not sure where Johns Hopkins falls in the spectrum.
You asked about Mayo: Mayo's website has helpful information as to how to get an appointment. It is a wonderful experience, albeit convoluted to explain. Either have your doctor initiate the request or self- refer. They will ask for some information when they decide whether and when to offer you an appointment. Check with your insurance in case they require a referral.
Standard advice to patients is to allow 3-5 days for your visit. Ergo, you want a Monday morning appointment to avoid the extra time and expense of being away in Rochester over a weekend. Especially in the winter. Mayo expects you will hand carry medical records and image CD/DVDs with you to your appointment. The specialist assumes a coordinator role. They will decide tests to be run and scheduling. If you have multiple issues, they will coordinate your visit with other specialists (ie, ortho oncology, nephrology, etc). BTW, their patient portal is among the best as far as accessing your own test results, doctor notes, etc.
At Mayo, a stem cell transplant patient is generally assigned 2 doctors: a hematologist / oncologist, and a transplant surgeon. You'd want to see the transplant team as their assessment and approval is required. Think of it as a built in second opinion.
It will take time for insurance approval and getting you on the schedule. The statistics I remember from a year ago were 500 transplants a year in Rochester, 300+ for multiple myeloma patients. Pre-transplant testing takes a few days; 4 to 5 is allowed for stem cell collection. The protocol is for the patient to be outpatient with daily check ups and any supportive treatment until you are released (around Day 21 post transplant) based upon blood work results. If needed, the patient is admitted to the hospital then returned to outpatient status. That was around 60% of the patients when we were there. Primary physician is your transplant doctor through Day 100.
Flying to Rochester is change of plane to get to Rochester or fly into Minneapolis/St Paul and rent a car / take commercial airport transfer van the 80 miles south to the clinic. Door to door runs 8 hours minimum. It's probably an 11 to 12 hour drive from the Baltimore area. Many hotels are connected via underground subway or overhead skyway to the clinic buildings. Wheelchairs are plentiful if needed. Generally speaking, the less expensive hotels are not on the indoor connected system; most offer shuttle service. The Gift of Life transplant house is about 1 mile away from the clinic and offers shuttle service and cooking facilities. Include a visit while you are being evaluated
The SCT decision at Mayo was the correct one for us. That said, it was difficult to be away from home for that length of time. Quality, depth of knowledge / experience with the range of outcomes is very important. The patient's philosophy as to treatment is a very important consideration.
Hope that helps. Wishing you all the best in your multiple myeloma journey.
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