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AA Aplastic anemia

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  #1  
Old Sat May 21, 2011, 10:13 AM
Ryan Jay Ryan Jay is offline
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Dr. Scheinberg is a cool dude!!!

I know I am a little late with this, (been busy with work) but I went to the regional conference in Boston last week.

I strongly suggest that you go to one of these if you have the chance. All the informative stuff notwithstanding, it's nice to socialize with people who have been through the same crazy experience that you have. You don't have to go through the long-winded explanation of your disease....you can talk about the weather and the Red Sox for a change.

Anyway, the doctors were great! Very personable and funny at times. Food is also top notch. (Those "evil" drug companies sure do know how to put on a mean spread.)

There are some things that have been updated from those AA 101 webinars on the AAMDS website. I won't post them here (I am under "Scout's honor with Dr. Scheinberg) but if you send me a private message, I'll give you the scoop.

Keep up the fight.
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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  #2  
Old Sat May 21, 2011, 02:35 PM
Neil Cuadra Neil Cuadra is offline
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Dr. Scheinberg was kind enough to provide the AA&MDSIF with downloadable slides from his talk (PDF, 1.4MB).
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  #3  
Old Sat May 21, 2011, 05:02 PM
Ryan Jay Ryan Jay is offline
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Thanks...

Great! Beat me to it!
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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  #4  
Old Mon Jul 18, 2011, 12:09 PM
paulaespada paulaespada is offline
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Question How can I know when there are those meetings

Very nice to know about those meethings.

How can I know when they are? Are they always in Boston? (We live in the Azores, Portugal - in middle of Atlantic) and we have direct airplanes to Boston - indeed many Azoreans go west instead of East to vacation or shopping.

I've been in UMASS Darthmouth and I love Boston.

I'm sorry I miss it.
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Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
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  #5  
Old Mon Jul 18, 2011, 12:35 PM
Ryan Jay Ryan Jay is offline
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Hi Paula

They are doing regional conferences now instead of one huge mega-conference. There is one in Tampa in October.

I just moved to a town in Massachusetts where about half of the people speak Luso-Portuguese. You'd fit right in.
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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  #6  
Old Mon Jul 18, 2011, 04:08 PM
Greg H Greg H is offline
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Hey Ryan!

You must be in Gloucester or Scituate! If it's Gloucester, you should check out Mark Kurlansky's "The Last Fish Tale." Neat book that helps explain why there all those Portuguese sprinkled on the Mass coast -- as well as lots of other veryin interesting stuff about Gloucester.

Looks like Dr. Scheinberg is going to be taking over management of my trial. I'm looking forward to meeting him.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #7  
Old Mon Jul 18, 2011, 05:44 PM
Ryan Jay Ryan Jay is offline
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Hey Greg,

Actually, it's Tewksbury, a lesser known Portuguese enclave. New Bedford is another one too!

Anyway,

I've only chit chatted with Scheinberg in passing, but he's very engaging and knows his stuff.

Even in his presentation, his frustration with setbacks in research was palpable...which is a good thing. He cares!
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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  #8  
Old Mon Jul 18, 2011, 09:37 PM
Greg H Greg H is offline
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Tewksbury! Sounds great!

Hey Ryan!

Neat. I guessed Scituate because my brother's former wife and in-laws -- all of Portuguese descent, were from there. That particular relationship didn't last for the long haul, but his exposure to the culture -- and particularly the cuisine -- was something we all valued. Hope you have fun in your new digs. We lived in Mass. for six years before giving up on the winters and heading to southern New Mexico. Talk about culture and climate shock!

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #9  
Old Tue Jul 19, 2011, 11:19 AM
paulaespada paulaespada is offline
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Portugueses in Mass

Quote:
Originally Posted by Ryan Jay View Post
They are doing regional conferences now instead of one huge mega-conference. There is one in Tampa in October.

I just moved to a town in Massachusetts where about half of the people speak Luso-Portuguese. You'd fit right in.

Massachussets (and New England) in general have a lot of portugueses, from Azores.
I've been in New Bedford and Fall River (being there is almost being in Ponta Delgada - Azorean main city - street). lol

I'd fit in Boston which I love and in Mass in general. But I was so crazy that in 1998 I declined an offer job in UMASS Dartmouth - I'm a university teacher (nursing and midwifery) here in Ponta Delgada, Azores, Portugal.
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Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
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  #10  
Old Tue Jul 19, 2011, 11:20 AM
paulaespada paulaespada is offline
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Quote:
Originally Posted by Greg H View Post
Hey Ryan!

Neat. I guessed Scituate because my brother's former wife and in-laws -- all of Portuguese descent, were from there. That particular relationship didn't last for the long haul, but his exposure to the culture -- and particularly the cuisine -- was something we all valued. Hope you have fun in your new digs. We lived in Mass. for six years before giving up on the winters and heading to southern New Mexico. Talk about culture and climate shock!

Take care!

Greg
Oh! Oh! I know what I mean - Portuguese food is one of the best in this world. Seriously!
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Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
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  #11  
Old Tue Jul 19, 2011, 07:46 PM
Lisa Z Lisa Z is offline
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GREG-

Dr. Olnes told me about his professional move, in an e-mail today. I am so bummed out - but I also konw that Dr. Scheinberg is good, so guess we are still in good hands. But I had so much faith in Dr. Olnes, that is hard to develop all over again.

I am a little concerned because my counts have all gone down for the past 2 labs. Nothing significant - just very minor. But, I hope it is not the start of a trend- and is just a fluke. If it continues in my next labs, (end of August),then I will begin to really worry that I am coming out of remission. Campath was 2 years ago this past March.....

All else is well.

Lisa
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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  #12  
Old Sat Jul 30, 2011, 03:02 PM
Lisa V Lisa V is offline
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I just came across the video Q&As with Dr. Scheinberg and several other leading bone marrow failure experts on the AA&MDSIF website.

https://live.blueskybroadcast.com/bs...=1017&CAT=1017

I haven't watched all of them yet, but they're definitely worth checking out. Drs. Young and Margolis are pretty cool dudes too!
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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