Mayo Clinic Rochester

[Lolam]

Have any of you been treated at Mayo Clinic?

[Kathy G]

My Dad is being treated by Mayo Clinic but in Jacksonville not Rochester – do you have questions????

Kathy

[Lolam]

We are considering a move to Minnesota. I am probably just kidding myself that I can make plans about moving like I was not even ill. This is something we tossed around before my diagnosis. Just wondered if the Mayo clinic would be as good as The Fred Hutch in Seattle. I know Seatle is the best when it comes to BMT. But I have not signed up for anything like that as yet. I am consulting with them next monday. I don’t actually know much about my specific diagnosis as yet or any plans for treatment.

[gemloyear]

Hi Lola, When my husband was first diagnosed I asked Neil’s advice re: a second opinion and if he had experience with Mayo. His answer at that time was he would go to N.I.H. at the univ. of Minnesota. I think Neil is away now because he hasn’t been responding to the forum for the past week or so. There is a woman on the forum that is going to the U.M., she will probaley reply. You will know more after consulting with the Hutch. Have you visited Minn.? It’s a wonderful state, I’m a transplant so I can say that. The medical Institutions here are top notch. Most likely Neil will reply when he sees your post. Good luck.

Ellie

[Suzanne]

I think you will know more after your consultation with the Hutch too. Secondary MLS is tricky and i think you will be looking for the best treatment for that, experience treating that, as well as what whatever classification you have.

[Barb1962]

Lolam,
Yes, my husband is being treated in Rochester Minn. He was initially being treated there for non-hodgkins lymphoma. Then a recent diagnosis of MDS. Doc was still not sure, but wanted another BMB soon. Neil told me that doc should be from “center of excellence” and on that list IS my husbands doctor. Dr. Letendre. If you have any further questions, just ask. I have been satisfied with this doc since 2001. But thats a choice you need to make. He is a very straight forward doc. He told my husband that a BMT was at this time out of the question, chemo was suppose to help a certain percentage before they would do BMT and it hasn’t helped my husband at that percent.

[doreen]

Hi Lola,

I was diagnosed at the Mayo. They offered me a bone marrow but nothing else but did suggest that I go to the U of Minn. Fairview. I will be doing a cord blood transplant soon there. I am on no medicines or have not had to have any transfusions yet. Please feel free to email me and I will share my phone number so we can talk.

Regards, Doreen

Also I live in Rochester, MN

[Lolam]

Thanks for the replies. I am still in denial in many ways. I am just on B6 now as treatment, pretty easy! I don’t feel that poorly even tho I know I am anemic. I just can’t believe I have something so serious without feeling sick. I don’t know how this progresses. I suppose I wake up one day and feel just awful. I guess I will get a dose of reality when I go to Seattle next Monday. I know I will probably not want to be moving when this disease begins to progress. But when will that be ARGHH… I liked breast cancer and the treatments WAY Better!!!

[Suzanne]

Lola, this disease is so individual. Progresses at different rates with different people. And has different symproms. I never had many synptoms even when my counts were really low and many people with better counts were having trouble getting off the sofa. We will wish for hopeful news and a direction with treatment for you in Seattle.

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