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  #1  
Old Tue Jan 22, 2013, 11:30 PM
Marrowforums Marrowforums is offline
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One-day Patient Conference in Houston, TX, April 20, 2013

A free one-day patient conference will be held in Houston, TX on Saturday, April 20, 2013. The conference, hosted by the Aplastic Anemia & MDS International Foundation (AA&MDSIF), is one of six one-day patient conferences in 2013.

This will be a multi-track conference for AA, MDS, and PNH patients and their families. Those who live in the South should plan to attend this conference or the November conference in Tampa, Florida. Those who live in the West should plan to attend this conference, the conference 2 weeks earlier in Phoenix, Arizona, or the July conference in San Francisco, California.

The conference will include parallel (simultaneous) sessions on AA, MDS, and PNH, sessions to help you live with and cope with these diseases, and professionally-facilitated support sessions with your peers.

Conference attendance is free. Breakfast and lunch are included. Discounted hotel rates are available to those who want to stay overnight.

Conference Program

Come hear about the latest information about diagnosis, treatment (including transplants), and medical research from leading experts, including:
  • Dr. Camelita Escalante, University of Texas MD Anderson Cancer Center
  • Dr. Guillermo Garcia-Manero, University of Texas MD Anderson Cancer Center
  • Dr. Jack Goldberg, Penn Presbyterian Medical Center
  • Dr. Danielle Townsley, National Institutes of Health
Patients and family members will also be able to
  • meet medical experts face-to-face
  • hear about the latest treatments and medical research
  • learn skills for managing life with a bone marrow failure disease
  • have your questions answered
  • learn how to be your own advocate for the best care
  • get to know other patients and family members like yourselves
  • attend professionally-facilitated support sessions
A special lunch program will let conference attendees meet and talk, with an emphasis on ways to stand up for your health.

Living with Aplastic Anemia, MDS or PNH

When:
Saturday, April 20, 2013, from 8:30am to 5:00pm
Check-in begins at 7:30am.
Where:
Houston Marriott West Loop by The Galleria (Google map)
1750 West Loop South, Houston, TX 77027
713-960-0111 (main), 800-228-9290 (toll-free)

Discounted hotel rates are available if you make reservations by Thursday March 28, 2013.
Hotel parking is available but is not free.
See other hotel information on the AA&MDSIF event page.
Registration:
Use the online registration form to register for the conference.
The registration deadline is Wednesday, April 10, 2013.

For more information see the AA&MDSIF event page.

If you plan to attend this conference, post in this thread to let other attendees know to look for you!

After the conference, let us know what you thought of the event.
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  #2  
Old Sun Jan 27, 2013, 08:52 PM
Cheryl C Cheryl C is offline
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Will these conferences be recorded and available to view online? We in Australia don't have a hope of getting there.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #3  
Old Sun Jan 27, 2013, 09:35 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by Cheryl C View Post
Will these conferences be recorded and available to view online? We in Australia don't have a hope of getting there.
Go to www.AAMDS.org They have most of these posted from last year.
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Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #4  
Old Wed Jan 30, 2013, 01:36 AM
Heather8773 Heather8773 is offline
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We will be there! Husbands current dx PNH new bmb results in 9 days!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #5  
Old Wed Jan 30, 2013, 12:10 PM
triumphe64 triumphe64 is offline
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I will be there also.
It will be my third one.
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Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #6  
Old Sun Feb 3, 2013, 12:06 AM
Tracy Spurlock Tracy Spurlock is offline
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Hope to attend the April 20th conference in Houston. Nine year old Grandson was diagnosed with SAA August 23rd, 2012. Has had ATG/Horse treatment in August and then cyclosporine and prednisone treatment, in differing doses, since. His RBC and WBC have not been a big concern. His platelets seem to be the Dr's biggest concern. Lowest count was 20,000 when admitted to hospital & have jumped all over with the highest count being 48,000 and then dropping, in a weeks time, after the cyclosporine was stopped. I'm stymied and don't even know what questions to ask. My understanding is that with treatment, he will never be "cured", only go into remission & that the only "cure" is with a BMT. Is this correct?
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  #7  
Old Sun Feb 3, 2013, 01:45 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Tracy Spurlock View Post
Hope to attend the April 20th conference in Houston. Nine year old Grandson was diagnosed with SAA August 23rd, 2012. Has had ATG/Horse treatment in August and then cyclosporine and prednisone treatment, in differing doses, since. His RBC and WBC have not been a big concern. His platelets seem to be the Dr's biggest concern. Lowest count was 20,000 when admitted to hospital & have jumped all over with the highest count being 48,000 and then dropping, in a weeks time, after the cyclosporine was stopped. I'm stymied and don't even know what questions to ask. My understanding is that with treatment, he will never be "cured", only go into remission & that the only "cure" is with a BMT. Is this correct?
Tracy,

You are correct about remission vs. a cure. When doctors weigh the choices of immunosuppressive therapy (IST) vs. a transplant, they are most likely to favor a transplant for children with a matched sibling donor. In other cases they may recommend IST. It's a tradeoff. A transplant may make sense because kids have so much of their lives ahead of them, but that has to be balanced against the short-term and long-term risks of a transplant. The good news is that both IST and transplants have a good rate of success for pediatric patients.

I recommend that you include two questions in your list:
  1. What schedule makes sense for tapering cyclosporine after ATG?

  2. Under what circumstances, from this point on, would a transplant be indicated?
It would be ideal if you knew your grandson's doctor's answers to these questions and could attend the conference to see what else you can learn about it. You can't expect a doctor at the conference to make a fully-informed recommendation about an individual case, but they often give advice about what their own approach would be and what factors help them weigh the choices.
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  #8  
Old Sun Feb 3, 2013, 02:07 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by Tracy Spurlock View Post
Hope to attend the April 20th conference in Houston. Nine year old Grandson was diagnosed with SAA August 23rd, 2012. Has had ATG/Horse treatment in August and then cyclosporine and prednisone treatment, in differing doses, since. His RBC and WBC have not been a big concern. His platelets seem to be the Dr's biggest concern. Lowest count was 20,000 when admitted to hospital & have jumped all over with the highest count being 48,000 and then dropping, in a weeks time, after the cyclosporine was stopped. I'm stymied and don't even know what questions to ask. My understanding is that with treatment, he will never be "cured", only go into remission & that the only "cure" is with a BMT. Is this correct?
Tracy,
I don't know where you live, but if you are near San Antonio you might consider the following event. There will be people in attendance who are in similar circumstances.:

https://snt141.mail.live.com/mail/In...15ad9be56&fv=1
__________________
Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #9  
Old Sun Feb 3, 2013, 02:29 PM
Tracy Spurlock Tracy Spurlock is offline
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Dear Dallas, TX
We live in far West Texas, North of the Midland/Odessa area & San Antonio is great for us. I could not reach your "link" about the conference. Could you PLEASE give me more info?
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  #10  
Old Sun Feb 3, 2013, 02:52 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by Tracy Spurlock View Post
Dear Dallas, TX
We live in far West Texas, North of the Midland/Odessa area & San Antonio is great for us. I could not reach your "link" about the conference. Could you PLEASE give me more info?
See if this works.
https://friendraising.towercare.com/...dCode=IE3CXWCD
__________________
Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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