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  #1  
Old Fri Mar 6, 2015, 11:53 AM
Marrowforums Marrowforums is offline
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One-day Patient Conference in San Francisco California, July 18, 2015

A free one-day patient conference will be held in San Francisco, CA on Saturday, July 18, 2015. The conference, hosted by the Aplastic Anemia & MDS International Foundation (AA&MDSIF), is one of six one-day patient conferences in 2015.

This will be a multi-track conference for AA, MDS, and PNH patients and their families.

The conference will include parallel (simultaneous) sessions on AA, MDS, and PNH, transplants, 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 these physicians:
  • Dr. Rafael Bejar, University of California, San Diego
  • Dr. Richard Childs, National Heart, Lung, and Blood Institute
  • Dr. David Margolis, Children's Hospital of Wisconsin
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.


Diagnosis, Treatment, and Managing the New Normal - Patient and Family Conference

When:
Saturday, July 18, 2015, from 8:30am to 5:00pm
Check-in begins at 7:30am.
Where:
Hyatt Regency Santa Clara (Google map)
5101 Great America Parkway, Santa Clara, CA 95054
(408) 200-1234 (main)

Discounted hotel rates are available through Thursday June 25, 2015.
You can make hotel reservations by phoning or by using the Online Hotel Reservation Page.
Hotel parking is free.
See other hotel information on the AA&MDSIF event page.
Registration:
Use the online Conference Registration Form to register for the conference.
The registration deadline is Wednesday July 15, 2015.

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 Tue Jul 14, 2015, 05:07 PM
Neil Cuadra Neil Cuadra is offline
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My wife Ruth and I will be at the conference in Santa Clara.

Are any other forum members going to be there?
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  #3  
Old Tue Jul 14, 2015, 09:11 PM
italianburrito italianburrito is offline
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Unfortunately I will not be able to go but I would like for you to keep an ear out for up and coming strategies to prevent relapse in high risk MDS. I have read recently that a few doctors are prescribing vidaza for 6 to 12 months after the transplant. Will you be sharing your wealth of knowledge after the conference?
__________________
Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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Old Wed Jul 22, 2015, 01:18 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by italianburrito View Post
Unfortunately I will not be able to go but I would like for you to keep an ear out for up and coming strategies to prevent relapse in high risk MDS. I have read recently that a few doctors are prescribing vidaza for 6 to 12 months after the transplant.
I posed your question to a transplant specialist, Dr. Sally Arai from the Stanford University Medical Center. She told me that Vidaza may be given to MDS patients after a reduced-intensity transplant, to lessen the chances of relapse. This matches what you heard.
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  #5  
Old Thu Jul 23, 2015, 09:15 AM
italianburrito italianburrito is offline
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Quote:
Originally Posted by Neil Cuadra View Post
I posed your question to a transplant specialist, Dr. Sally Arai from the Stanford University Medical Center. She told me that Vidaza may be given to MDS patients after a reduced-intensity transplant, to lessen the chances of relapse. This matches what you heard.
Thank you so much for the info! I plan on contacting Dr. Arai and getting her take on everything. Any other exciting news? I know in oncology things are always changing and evloving. Thank you for being an advocate for us! You are heaven sent
__________________
Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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Old Thu Jul 23, 2015, 01:28 PM
bailie bailie is offline
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I posed the question, "Vidaza after SCT" to my doctor. They (Oregon Health and Science University, Philip Knight Cancer Institution) do not generally consider Vidaza as a maintenance program following SCT. I did relapse at about Day +230 and was immediately prescribed Vidaza at that time. I am now in my 4th cycle of Vidaza following relapse. After the 2nd cycle I showed no signs of leukemia, no genetic mutations and 100 percent donor cells. Naturally, no one knows how long this "remission" will last. The doctors did say that from their information there was not a significant difference doing Vidaza following SCT to prevent relapse. Their thinking was not to "wear out your welcome" by using Vidaza until it was definitely needed (such as my case). I don't know, and I don't know if anyone knows, the correct line of thinking. There are so many variables with each person.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #7  
Old Thu Jul 23, 2015, 05:15 PM
italianburrito italianburrito is offline
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Quote:
Originally Posted by bailie View Post
I posed the question, "Vidaza after SCT" to my doctor. They (Oregon Health and Science University, Philip Knight Cancer Institution) do not generally consider Vidaza as a maintenance program following SCT. I did relapse at about Day +230 and was immediately prescribed Vidaza at that time. I am now in my 4th cycle of Vidaza following relapse. After the 2nd cycle I showed no signs of leukemia, no genetic mutations and 100 percent donor cells. Naturally, no one knows how long this "remission" will last. The doctors did say that from their information there was not a significant difference doing Vidaza following SCT to prevent relapse. Their thinking was not to "wear out your welcome" by using Vidaza until it was definitely needed (such as my case). I don't know, and I don't know if anyone knows, the correct line of thinking. There are so many variables with each person.

But this type of thinking is very new for post-transplant patients so how would your doctor know if this is something valuable for high-risk patients like my dad? I have only been able to find it in trials so I am surprised that "their information there was not significant difference" when this is so new? Can you refer to a study where this correlates to what your doctors are saying?
__________________
Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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  #8  
Old Thu Jul 23, 2015, 05:49 PM
bailie bailie is offline
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I would suppose that "their thinking" was partially based that there was nothing presented so far that was convincing either way.

The big question around this subject is "how long is Vidaza effective". If a person is on it early as preventive maintenance, does that limit the time it is effective later on when needed? Effectiveness of Vidaza is so variable that definitive answers are evasive.

I am about as high-risk as a person can get with the Philadelphia+AML diagnosis. The nice thing is that I have shown few symptoms duing the last 18 months. I do get tired in the evenings, however.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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