AA Specialists in Florida??

[us6inks]

Does anyone have any info or insight on AA specialists in Florida?

Our daughter Lillie is currently being treated for her AA in St. Louis, MO. She just completed ATG/Cyclo on 3/12/08, so we are waiting on counts to improve. Due to a job change, we will be relocating to Florida this summer and will need to transition her care at some point. Based on where will be living, we are looking at possibly dealing with Shands/Gainesville, Mayo/Jacksonville or Arnold Palmer-MD Anderson/Orlando.

Any ideas?

Thanks,
Robbie & Vickie Inks / Parents to Lillie-8 yrs
(SAA, Dx 1/30/08, ATG/Cyclo 3/12/08, awaiting response)

[Neil Cuadra]

The Mayo clinic in Jacksonville is certainly one of your choices. They treat pediatric AA, have a bone marrow transplant program, and do AA research as well. For example, Dr. Shakila P. Khan has co-authored papers on AA and has a speciality in Pediatric and Adolescent Medicine and can be heard in a brief interview about a pediatric transplant for AA.

Depending on where you'll be in Florida, it might be just as easy to get to the H. Lee Moffitt Cancer Center & Research Institute at the University of South Florida in Tampa. They are similarly well regarded and are one of the founding members of the Bone Marrow Failure Disease Consortium. Dr. Claudio Anasetti is head of the Moffitt Center's Blood & Marrow Transplant Program. I think he was formerly at the Fred Hutchinson Cancer Research Center in Seattle.

The Moffitt Center is affiliated with All Children's Hospital in St. Petersburg, which has a Pediatric Blood & Marrow Transplant Program and has several doctors in their physician list who specialize in hematology/oncology.

I suggest that you ask Lillie's doctors at the Pratt Cancer Center for a recommendation and referral. There's no substitute for their expert advice.

[Jbsx19]

Robbie,

I am located in Florida (East Central) and was diagnosed VSAA in May 2003. My choice was to travel to NIH, as mine was an emergency situation and I did not have the time to research options when I was diagnosed. In Hindsight, now that I am in remission 100%, I would NOT have made any other choice anyway. The care and treatment at NIH is uncomparable to any other. Needless to say, NIH did give me the option of being treated there or Dr. Young's referral for me would have been to Shand's in Gainesville (had I opted to go directly to transplant as opposed to the ATG/Cycl route).All I'm trying to say is that it may be worth making the trip to NIH so that you become a patient thru them.That way, You have the initial treament at NIH,all the research and statistics would be recorded by them and your follow up care could be done locally with revisits to NIH once a year or so (that incidentally, are paid for by NIH). Any other facility that you are treated at are NOT obligated to share their (your) information with NIH. I do know of another patient here in FL that is currently being treated at Moffet in Tampa (they opted NOT to make the trip to NIH) and they are not completely happy with the communication of their treatment between the NP's and Dr's. Just some information for you to maybe help in your research before you make a choice. Let's face it, we are all hoping and praying for better treatment options and a cure for bone marrow failure diseases that are rare in themselves. We all have a choice in helping to make that happen.
Please feel free to contact me ,anytime, if I can be of help sharing my experience at NIH or just to talk. Take care and be strong.

Judi

[janq]

Originally Posted by Jbsx19

Robbie,

I am located in Florida (East Central) and was diagnosed VSAA in May 2003. My choice was to travel to NIH, as mine was an emergency situation and I did not have the time to research options when I was diagnosed. In Hindsight, now that I am in remission 100%, I would NOT have made any other choice anyway. The care and treatment at NIH is uncomparable to any other. Needless to say, NIH did give me the option of being treated there or Dr. Young's referral for me would have been to Shand's in Gainesville (had I opted to go directly to transplant as opposed to the ATG/Cycl route).All I'm trying to say is that it may be worth making the trip to NIH so that you become a patient thru them.That way, You have the initial treament at NIH,all the research and statistics would be recorded by them and your follow up care could be done locally with revisits to NIH once a year or so (that incidentally, are paid for by NIH). Any other facility that you are treated at are NOT obligated to share their (your) information with NIH. I do know of another patient here in FL that is currently being treated at Moffet in Tampa (they opted NOT to make the trip to NIH) and they are not completely happy with the communication of their treatment between the NP's and Dr's. Just some information for you to maybe help in your research before you make a choice. Let's face it, we are all hoping and praying for better treatment options and a cure for bone marrow failure diseases that are rare in themselves. We all have a choice in helping to make that happen.
Please feel free to contact me ,anytime, if I can be of help sharing my experience at NIH or just to talk. Take care and be strong.

Judi

I know, having been the newbie at many things, and also being the "veteran" at times that we fall into using abreviations and acronyms. But sometimes a new person will get in to the "conversation" late and the abbreviations and acronyms are not self explanatory. Could you tell me what NIH stands for...the only one I can think of is National Institute of Health and if that is what it is, where is it located in FL. I live on the "Nature Coast" and have not yet been diagnosed...still in the testing stages...I've been doing a lot of research to try to stay ahead of the curve.

I also have a friend who is going to Shands in Gainesville. Her transplant is scheduled for Sept. 26. She's been happy with the doctors/staff and communication with her team.

I'm also wondering about "caregivers". My friend's husband will be her caregiver and two of our friends and I will "substitute" occasionally overnight, so DH can travel home and take care of house/bills, and just get some needed "relief". What happens when a patient has no family or friends on whom to rely...one or two days is one thing, but months is quite another. I know I have no husband, children so this could be a problem for me.

Thanks for the forum and insights given by the many contributors.
Jan

[Jbsx19]

janq,

Hi! You are correct. NIH is the National Institutes of Health in Rockville,(Bethesda) Maryland just outside Washington DC. You may research it at WWW.NIH.Gov. It is not a "hospital" per se, where you can just go if you choose to. You must be accepted into a clinical trial for treatment. You can do this yourself by calling Olga Nunez (Dr. Neal Young's clinical nurse) and submitting test results, biopsies,etc whatever she asks for basically. My Doctor(here in FL) facilitated this for me. At first, I just had an appointment to be seen in the clinic to see if I fit in a trial after they redid their own BMB and was supposed to fly home to await the answer. Well, things were so bad that Dr. Young admitted me right then to await the results of the BMB and see if my sister was a match for me. They only supported me at that point (no treatment was given). Once all the info was gathered and we could make an educated decision about treatment options,that's when I knew the only option for me was to stay there and try the ATG/CYCL first before even considering a transplant (my sister is a complete match).There was no trial, at that time to go straight to transplant anyway, so I would have had to come to Shands to do that. I opted to stay at NIH,once given the ATG and had it not worked (it did) then I could've stayed there for the transplant. I stayed there completely alone (my husband flew home on day 2 to take care of my home and kids) from May 14th to June 10th. My husband sent me clothes(I brought none),they have laundry there,cafeteria,etc. It was scary ,yes, but fine..more than fine.......I am alive thanks to them, my new family! I flew back up at 3,6,9,12& 18 mos for BMB's and then once ayear and now every 2 years. Dr. Neal is wonderful,the PA's are great and nurses are awesome. If you are "Unlucky" enough to be diagnosed with a disease, I feel I am VERY "Lucky" to get one that NIH is researching.
I wish you well.

Judi