Acute Myeloid Leukemia

[Chilling in VT]

My brother was just diagnosed with Acute Myeloid Leukemia. He has been fighting a blood platelet disorder for a number of years and it has now become AML. He will be needing a bone marrow transplant sometime in the very near future. Five years ago he had stem cells harvested and they can be a backup if a suitable donor is not found. I, as well as another brother and sister have been tested and are not a match. The fear of using his stem cells as a transplant is that when it is used to regrow his marrow, it will probably carry the same problem he initially had. We are off to Mt. Sinai Hospital in NYC this week to begin the process.

So my question is has anyone been through this? What should we expect? My brother is 47 years old, so I would think that would be in his favor. I think that the medical care at Mt Sinai is good but are there better places for this type of treatment? Any thoughts would be greatly appreciated.
Joe

[Chocaholic]

Don't have experience or answers to your questions...but man...2008 is getting off to quite a start here at the ol' bbs. Best of luck as you and your family work through this important challenge. Perhaps with a bump back to the top, you'll get some substantive and useful feedback.

[Chilling in VT]

Thanks for the reply Mike. We have been getting all sorts of info from the internet but it all seems very clinical. I was hoping for some real info.

[tcar]

These might help. My sister had/has lymphoma and this is a GREAT organization.
They can also talk to you about the best treatment centers, doctors, etc.

They deal with blood cancers only, like your brother has.

http://www.leukemia-lymphoma.org/all_page.adp?item_id=4221

http://promosearch.lls.org/search/?sp_a=sp10036b6c&search=&sp_q=Acute+Myeloid+Leukemia&sp_p=all&sp_f=ISO-8859-1&glossary=glossary&x=76&y=13

[pwd72s]

Good advice...Cindy has found support groups and the MS Society very helpful in her battles with that disease. Especially the support groups. These people know the good MD's, the not so good MD's, which treatments help, which don't, the side effects of each, etc.

[Don Plumley]

From my limited experience (used to work for a diagnostic lab for blood cancers), there are a variety of new antibody and other Tx that are very effective, but surprisingly, not well used/known by smaller onocology groups.

You want to find a specialist group that focuses only on blood cancers - and then find out how leading edge they are. We have a friend that had NHL (non-hodgkins lymphoma) and the first doc wanted to put in a port and dump in the chemo. The gold standard treatment in 1950. Instead, we pushed him to the Hoag Cancer Center in Newport Beach, they put him on an antibody and rutuxin regimen that worked, plus minimal sides - light, flu-like symptoms. Pretty sure that's not a Rx for AML, but indicative of potential differences in treatment approaches.

IIRC, a cytogenic study is a very important prognostic factor. Hopefully one of the docs will chime in.

Also, the personal chemistry with the doc is important for Cancer cases. Personal motivation, trust and empathy are important contributing success factors in my opinion.

Good luck!

[WI wide body]

Originally Posted by Chilling in VT

My brother was just diagnosed with Acute Myeloid Leukemia. He has been fighting a blood platelet disorder for a number of years and it has now become AML. He will be needing a bone marrow transplant sometime in the very near future. Five years ago he had stem cells harvested and they can be a backup if a suitable donor is not found. I, as well as another brother and sister have been tested and are not a match. The fear of using his stem cells as a transplant is that when it is used to regrow his marrow, it will probably carry the same problem he initially had. We are off to Mt. Sinai Hospital in NYC this week to begin the process.

So my question is has anyone been through this? What should we expect? My brother is 47 years old, so I would think that would be in his favor. I think that the medical care at Mt Sinai is good but are there better places for this type of treatment? Any thoughts would be greatly appreciated.
Joe

I am always very reluctant to give any type of medical advice about anything serious.

Having said that, a friend of my wife, who was over 60 years old, was told by the people at Duke Medical (a world class organziation) in Durham, NC that she should get her affairs in order since she had about 3-6 months to live.

My wife heard about the Cancer Centers of America and passed the info along to her friend. I mentioned that it was probably not a good idea. Her friend subsequently went to them and we probably took her to the airport a dozen times or more for her trips to Chicago. CTCA only has a few locations around the nation. We have since moved to WI.

This was about 4 FOUR years ago!!! I have no idea what they do or how they do it but they do have some remarkable success stories per my wife's friend. She has had some reoccurances of her cancers but the fact remains that she is alive and during her last visit to their facility in Zion, IL we had lunch with her.

Take from this what you will. The CTCA website is:

http://www.cancercenter.com/about-us/our-hospitals.cfm

Best wishes and luck to both your brother and your family in dealing with it.

Ed C

[Chilling in VT]

Thanks guys. I will pass this info on to my family. One of the problems we are having is that my brother is very private. He is uncomfortable bringing all of this out. He is one who will try to suffer alone with this. He has been in touch with the doctors and we get bits and pieces of info. We are all trying to get a grip on what the options are and then be able to talk with him about what he is going through. My mother is freaking out and we are trying to be there for him.
I know we will all get through this but the short term will be hell.

[livi]

Sorry to hear about your brother, Joe.

This is a very special medical field (like many) and you really need to work in the scientific clinical front line to be able to comment at all in a general fashion. I am not familiar with the American system, but in Sweden this is dealt with in a very centralized way. Only a few centers offers treatment in order to gather enough experience and knowledge. As the genetic and cytogenic as well as biochemical scientific front line is moving forward in warp speed every day, you need to be very specialized in orders to be up to date.

Me, I have diagnosed several children with acute lymphatic leukemia which is the most common in childhood, but I would not dream of trying to treat it. Far too complicated for a simple hick ped like me.

[Chilling in VT]

Thanks Markus. We have found this to be true in the States as well. The sucess ratio's vary from hospital to hospital. My brother feels very comfortable with the treatment plan and the doctors at Mt Sinai. He looked into some of the other hospitals such as Dartmouth and others in the Boston area but felt best with the NY one. We are going down on Wednesday for some final tests and he will probably be admitted sometime later this month. He expects to be there for about 4-6 weeks for the initial treatment. He will be getting some major doses of shemo and radiation that will kill off all of his existing bone marrow. The extended stay in the hospital will be in quarrantine. He will be very susceptable to infection during this time. The hope is that he will start producing blood cells and platelets and when the numbers get to an agreeable number for the docs, he can come home. He has a fantastic outlook on his treatment and survival. I think this will play a major role in his recovery.

[azasadny]

I will keep your family in my prayers!

[livi]

For what it is worth, as a curiosity, Mt Sinai is known as a very competitive center even here in far away Sweden.

Yes, the phase where you have to 'clean out' the host immune system is very daunting. He better be prepared for that (as he will). At the ped clinic where I work we do not give the specific treatments, but the children come to us in between and we treat them when they (invariably) catch infections during this period. It is the one of the most stimulating category of patients. They feel so sick and yet have such optimism and strength - it is shear power to survive. And they do. Most of them.

[KaptKaos]

Prayers sent. Sorry that I can't offer more.

[kimlangley7]

Joe:
My wife was diagnosed with Multiple Myeloma last year wihle I was serving in Iraq... talk about getting news like that via email...

Anyway she is scheduled to commence a stem cell transplant next month at the National Institute of Health (NIH) her ein Wash DC... Fortunately > one her sisters is a compatible donor and we will use her stem cells for the transplant...


The NIH has multiple studies going on > as well as Johns Hopkins.. we interviewed at both facilities.. anyway > after a year of chemo > she is ready for the transplant..

Hoping for the best outcome...

kim

[TechnoViking]

I had Hodgkin's when I was a kid. No advice here. Just wishing you the best.