Seeking opinion about where to get a second opinion.

Good morning! Sorry I can not comment on either of the medical centers, but I WANT TO ENCOURAGE YOU TO CONTINUE RESEARCHING AND Asking QUESTIONS ABOUT A SECOND OPINIONS
GOOD LUCK WITH THIS
STAY STRONG ! Actually the courant doctors should help you get a second opinion! I hope you can speak to them about getting another opinion!! Best to you

I, too, wanted a second opinion. I have Primary Myelofibrosis. My local clinic boasts as being a member of the Mayo Clinic team. I was initially diagnosed by their oncologist incorrectly. I challenged the doctor. I worked hematology for years and PV didn’t make logical sense since I was anemic. She order a bone marrow study with multiple tests to be run on it. My definitive diagnosis is PM. I told her I was interested in any clinical trials available. She sent me to THE Mayo Clinic in Rochester MN where I met Dr. Tefferi, who claims to be the world specialist in PM. It was a great experience. I didn’t need to go on a clinical trial. A new FDA approved drug was available. He pointed out all of the positive aspects of my condition and what to watch for. He was pleased with how well I take care of myself and his parting words to me were, “You are not going to die of Myelofibrosis. You will eventually die WITH Myelofibrosis.” I now live my life more comfortably.
My future visits have been video visits and one return in person visit. He connects with my local Mayo affiliated doctor and tells her what to test and medication to order. They both get the results.
The Rochester Mayo Clinic has the Kaylor Hotel attached to it via tunnels. I do live 2 hours away so I drove. I hope you find a Mayo doctor the specializes in AML. There are new treatments out there all of the time. You deserve the best. Wish you the best.

It is always good to have the 2nd opinion - I had a fantastic doc at a large regional cancer group and really got along well. Was at a LLS conference and visited with a pharma rep about locations with MPN specialists that I might consider moving. (I live in the west and was looking in that area) He noted MD Anderson (I went to school near Houston, but hate humidity), Huntsman in STL, Mayo in Phoenix, and UCHealth in Denver. I moved to UCHealth as the doc there is in a research setting a I would have opportunities to participate in clinical trials - not because of my previous doc. As I am still considering a move to AZ, I visited Mayo in Phoenix and they also have a really great team, also with research opportunities.
It is your health and I have never had an issues with getting a second opinion, so do not be hesitant to do so. I would just recommend that you look for locations as you mention, and it may not be for everyday care, but to get new ideas.

Thanks—all of that is very helpful.

Hi @pefishback Both Mayo Clinic and MD Anderson are top tier cancer centers. From my own experience with Mayo Rochester, their hematology department is 2nd to none. I’m biased, of course, but if you’re in Michigan, Mayo Rochester might be an advantage for you with being closer than Texas.

If you’d like to make an appointment at Mayo, here is a link to get you started: http://mayocl.in/1mtmR63. You can go to their homepage and click the links to initiate a request for an appointment.

Last we spoke you had completed your AML treatments, in remission but with the potential for a post treatment plan with V& V. That treatment plan has been quite successful as mentioned by @sonieaml in her recent reply to you and also from @lindagi and others in this discussion:
AML, age 78, taking Decetabine/ Venetoclax, no transplant
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/
If you do choose Mayo Rochester, there are many hotels connected directly to the Clinic via their wonderful skywalk/subway tunnel system. There is a massive expansion/construction project going on in Rochester right now so parking is at a premium for patients! So getting a hotel nearby, directly connected is great…you don’t have to look for parking! Though many hotels which are not connected often have shuttle services.

Has your health changed recently with the potential for relapse?

I personally would select Mayo over MD Anderson. My experience when I took my husband was not what I imagined it would be......total waste of time. Lots of Pomp and Circumstance! Have hear very positive things about Rochester Mayo> Best wishes wherever you go.

Cleveland Clinic, MD Anderson , Sloan Kettering. But lots of people choose somewhere close to home. Im having a BMT, so need to be 50 miles from the hospital. Find out why one hospital has a higher rating. Its mainly a numbers thing

@kndaustin71 — thanks, your opinion is very helpful.

Hi @loribmt — thank you so much for your response and for remembering my situation. I completed induction last April and four rounds of consolidation chemo over the summer. Currently I’m in morphological remission and feel great—back to daily endurance and strength training.

However, I am MRD positive (as assessed using flow cytometry test). Also, blood draws in September and this month show my platelet level has decreased slightly below the normal range cutoff.

I’m having another blood draw next week, this time with peripheral flow cytometry. In addition, I’m scheduled to visit Mayo on 11/21 (thanks for the info!) and will be visiting the University of Michigan-Ann Arbor on 11/5 to discuss the MRD results themselves with a flow cytometry expert.

We’re really pleased to have some appointments on the calendar so we can see where things might go from here.

Thanks again!

@pefishback I’m so happy to hear you’ll be visiting my home away from home at Mayo-Rochester. I was there last month for my annual post BMT follow-up and it’s always amazing walking through the Gonda/Mayo buildings. There’s an underlying air of confidence and calmness among the hustle and bustle of patients, clinicians, volunteers walking right along with you.

If you haven’t already, now that your appt dates are in the book, it’s important to set up your patient portal. That will be your lifeline to appointments, test results, notes from your doctor or NPs. Things can happen quickly at Mayo. So whatever is on your schedule now, may be quickly amended to run more tests, etc.. so it’s good to have that lifeline open.

Here’s a link to hotels that are connected to the campus
~Which hotels at Mayo in Rochester are connected to skywalk/subway?
https://connect.mayoclinic.org/discussion/hotels/
Another helpful guide: https://www.mayoclinic.org/patient-visitor-guide/minnesota

Keeping in mind about the enormous amount of construction surrounding the campus. There’s really no white knuckle driving in Rochester. But right now it can be tricky to navigate with so many roads closed. So make sure you look at the gps on your phone to give updates on traffic patterns and closures. It’s doable! But can be frustrating at times.
That’s why I strongly encourage you to get a hotel linked to a walkway so that you can park your car once and not have to drive to the clinic and find parking quickly.
Personally, my husband and I stay at the Marriott Residence Inn on Center Street. (Full sized kitchen with fridge, dishwasher, range). Indoor parking or right across the street is a Mayo Ramp that is open to patients. It’s really inexpensive compared to the hotel parking. The ramp is Maximum of $12 daily.
If you have any questions, don’t hesitate to ask. Are you flying or driving?