Dave,

I was very happy with my care at Memorial Sloan Kettering in NYC and with my doctors, Joseph Jurcic (leukemia specialist who has since moved to Columbia Presbyterian) and my transplant doctor Esperanza Papadopoulos. I have no other point of reference.

When I was diagnosed, I was started on chemotherapy immediately. I think that the dictum is the sooner the better. I never questioned.

Cliff

Best centers that I have found are:
Dana Farber - Boston
Sloan Kettering - NYC
Duke - Durham, NC
MD Anderson - Houston, TX

As far as I know, induction chemo for AML is pretty standard and has been in use for many years. Pretty much all AML patients start with this protocol. It includes two very strong chemo drugs-anthracycline (daunorubicin, idarubicin and such) and cytarabine (AraC). Cytarabine is given continuously for 7 days, anthracycline is given in 3 doses, one dose a day. I am not aware of chemo sensitivity tests being done for AML and I am not sure of the benefit of such testing. The induction chemo is the same for young and old patients but young patients get much higher doses. When AML is diagnosed they start treatment as soon as possible because usually it progresses very fast. Most patients achieve remission with the first round of induction. If standard induction doesn't work, different chemo regimens may be used. The patient's bone marrow undergoes genetic testing to find out if leukemia is high, low, or intermediate risk and to determine prognosis and the need for transplant. But this testing takes quite a bit of time, so it is done while the patient already undergoes treatment. Your concern about chemo not being a "roulette" is very easy to understand. Right now researchers are working on developing drugs which are targeted to a specific type of AML or specific genetic mutation related to leukemia. Several people on our forum used these medications. But right now they are not the first line drugs for the treatment of AML.

I am in Israel, BUT, right when I was diagnosed, I contacted a friend who happens to be a hemato-oncologist at Sloan in NYC. My goal was to find out where to be treated, what's the best place.
His answer was - the induction protocol is exactly the same anywhere in the world (7+3).
The difference can be in how they treat infections, access to rooms, isolation, etc.
In this sense we have excellent places locally.

However, I later did a lot of research about where some of the best doctors are, and got a list similar to Heather's regarding USA. There's a lot of great doctors and centers in other countries too. This is much less relevant for induction, since, as said before, it's one international protocol, and speed is important.

Abby2

My experience has crossed multiple Philadelphia hospitals and I have had input from Genova, Italy.
My bone marrow group is the Temple Bone Marrow Transplant Group. They are also part of the Fox Chase Cancer Center. My group has been following me from before I even knew they existed.
I was diagnosed at a local hospital in June and the oncologist I saw had been a "fellow" at Temple many year before. Once they knew I was FLT3, the search for someone who knew this mutation was sought and one of the physicians, Patricia Kropf,MD had done research in this mutation specifically. After relapse,I was transferred tot he bone marrow hospital and re-treated. They then found out about a randomized selection for a clinical trial drug being done at PENN. I had been unable to achieve full remission. The physicians at Temple and Penn worked collaboratively to discuss the time frame for when I achieved remission and required transplant without delay.
I achieved remission on the clinical trial drug and had only a half match. Time was of the essence since I needed to go soon. A protocol developed by Andrea Bacigalupo in Italy was discussed and he consulted on the protocol via phone and email regularly. I had whole body irradiation, chemo and 6 days later a fresh bone marrow transplant.

The point of the long story is that, in my case, multiple physicians, putting their institutions and personal egos aside, did what was necessary for me and my particular case. I am lucky. I had access to many physicians. Luckier yet, that these physicians continue to follow my progress.
Whomever is chosen, you need to have confidence in their ability. Trust is a huge factor. I completely trust my group(s).
Peace, love and hope,
Andrea

I was told to be treated at Sloan by a Dr. Berman. She is very highly recommended. I stayed at my fiance's hospital Roosevelt in NYC for induction. THere was a man there named Dr. Peter Weirnik who is marginaly responsible for creating the 7+3 protocol. Over 70 years old. He was my savior. He is now what I consider my good friend. We still email. After my remission he retired and sent me to Dr. Berman at sloan for follow up care. On Wed Dr. Berman wants a new Bone Marrow Biopsy just for her records. I will report on Sloan as I get to know them better. There is also a Dr. there named Dr Talman. He is a specialist in MLL. THey are - as far as I can tell- cutting edge.

Ed

Eddie,

I know all of the physicians that you have mentioned, although they might not remember me. Ellen Berman is wonderful...smart, caring, just great. My transplant doctor is Dr. Papadopoulos. I can truthfully say that she is one of the best physicians I have ever had for any purpose. Her entourage (nurses, nurse practitioners etc.) are wonderful as well. Have you met Christine Iovino? She is an NP that sees "survivors." It makes one feel good just to know that one is in that category. Dr. Papadopoulos has the best "girl Friday" working for her. She just told me that she was admitted to a PA program at Baylor. I actually wrote a letter on her behalf. She always went beyond the call.

There are great doctors everywhere. I love Dr. Papadopoulos, but was very impressed with Dr. Berman when she covered the transplant service. Both are down to Earth wonderful human beings.

Cliff

Cliff,

That is so great to hear. When I was first diagnosed I was told to go to Ellin Berman. When I called her she said I was in great hands with Dr. Weirnik. She was right. He was amazing. He never really told me details I didn't need to know, but was there for me every step of the way. He caught my candida when I was in the ICU hanging by a thread, and had to argue like mad against the ICU docs who said they didn't want to give me an expensive anti-fungal. I think he saved my life. He transfered most of his patients to Beth Israel when he retired, but sent me to Dr. Berman. (I have to say, my fiance being a Chief resident in the ER gave me some special treatment). I look forward to knowing Dr. Berman (BUT NOT TOO WELL) and will certainly ask for Christine! Glad to hear how much you appreciated them and how well they did for you.

Ed

Eddie,

When I was an inpatient for transplant, I got to meet several of the doctors on that service. I liked Dr. Berman the most. She has a bit of a 70s look (you will know what I mean when you see her) and that was a refreshing change. She is a Harvard Med grad and that is obvious when you listen to what she has to say., Is your fiancee the resident in the ER at Sloan Kettering? She must be smart as well.

Enjoy your visit with Dr. Berman. You will not be sorry with that referral. She's great.

Cliff

I did my induction and consolidation at Norton Suburban in louisville, ky. I can say from my oncologist to the person that cleans the rooms EVERYONE was awesome. I praise the nurses, they all were so supportive and caring.
Now.. as far as my transplant i had it done at University of Kentucky, my BMT doctor is nice and most of the nurses BUT i wouldnt recommend anyone to go there. They got mine done which im thankful! But for a place thats done transplants for years i wasn't happy with the overall experience and i was so happy to leave.

I think finding the best Hospital for treatmentn Is to look at the area you live in, consider your finances and insurance. Not everyone can fly to Seattle to visit the Hutch. For myself my family had only minutes to make a decision for me. I was critical. There was no time for second opinions or looking up the best hospitals. I could not even speak for myself.

I know in New York you have many great Hospitals, but in rural America that's not the case. I live in a town that has 2 Hospitals (not large) and 6 Oncologist. We have Oncology floors, nothing that specializes in Leukemia. When I got sick my boss (a physician) told my family to get me out and to a University.

I'm lucky enough to only live 2 1/2 hours from Vanderbilt. My nurses who treated me 2 years ago during my induction rember me because they say I'm the only Leukemia patient they can remember being on a heparin drip.

My advice get to the largest hospital or university available to you. They have more to offer especially in the way of nursing staff. My nurses are not just trained to give chemo. They are continuously being trained for Leukima and transplant. I owe my life to Vanderbilt and specifically Dr John Greer.

Also when your looking for a hospital for transplant "be the match" has statistics. Of course the data last I checked was still from 2009, with all the technology we have now I'm not sure why it takes so long to collect numbers. We have many great hospitals all over the US and I think most of us on this board will say that we have recieved the best care we could have.

Trish

Trish,
Where do you live? You must not be to far from me. I found out after thw fact i couldve went to vanderbilt which i heard was a top notch hospital.

Phil,

I live in the very western tip of Kentucky. I would have loved to have you on the floor. I was going to suggest they have some kind of mixer to get patients acquainted. I guess in reality they probably don't want us to Campari to much.

My experience has been nothing but postive. Truly the nicest people. I don't know the training process, but they employee about 40,000 people I've yet to meet a rude one. The way the hospital is ran is such a different experience for me. It's made it a little less dreadful.

Trish

I live in Jeffersonville IN. Im just a rock throw from louisville. I wish id gone to vandy instead, most of the people were nice at UK just the way ::the entire program was ran is what concerned me. They wouldnt wear masks and gloves most of the time id have to say something about it. I got into an argument with one of the food service workers, the doctors wouldnt try and figure out a problem theyd just drug you up. Ive never had so much morphine, its a drug addict heaven. Oh well ill quit complaining, im thankful for what they did for me but they really need to revamp there BMT program.

I forgot.. my biggest issue, my oncologist is about 20min away, every monday i have to drive 2hrs to UK just so they can check my blood work which my oncologist could do. They said the reason so they would have the results right away.. B.S.. its so the,,
BMT doc can get paid for a weekly office visit. It doesnt matter gas is almost 4 bucks a gallon and my entire day is shot. It amazes me how sometimes the patient isnt that important anymore..