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Old Tue Mar 11, 2014, 12:04 AM
Marrowforums Marrowforums is offline
Join Date: Jul 2006
Posts: 909
One-day Patient Conference in Los Angeles, CA, April 5, 2014

A free one-day patient conference will be held in Los Angeles, CA on Saturday, April 5, 2014. The conference, hosted by the Aplastic Anemia & MDS International Foundation (AA&MDSIF), is one of six one-day patient conferences in 2014.

This will be a multi-track conference for AA, MDS, and PNH patients and their families. This is the only AA&MDSIF patient conference on the west coast this year.

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 these physicians:
  • Dr. Rafael Bejar, University of California, San Diego
  • Dr. Jack Goldberg, Penn Presbyterian Medical Center
  • Dr. Isabel Schuermeyer, Cleveland Clinic
  • Dr. Ramon Tiu, Cleveland Clinic
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

Saturday, April 5, 2014, from 8:30am to 5:00pm
Check-in begins at 7:30am.
Weston Los Angeles Airport (Google map)
5400 West Century Boulevard, Los Angeles, CA 90045
310-216-5858 (main), 888-627-9085 (toll-free reservation line), email WestinLAX.Promotions@westin.com

Discounted hotel rates are available through Friday March 7, 2014.
Hotel parking is available but is not free.
See other hotel information on the AA&MDSIF event page.
Use the online registration form to register for the conference.
The registration deadline is Wednesday, March 26, 2014.

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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Old Tue Mar 11, 2014, 06:47 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,520
My wife Ruth and I will be at the Los Angeles conference to help out and to listen to sessions. We hope to see some of our Marrowforums acquaintances there.
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Old Tue Apr 8, 2014, 01:03 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,520
Notes on the conference

I thought the Los Angeles patient conference was excellent. I've been going to patient conferences since 1996 and I still learn new information at every one!

Dr. Ramon Tiu gave two detailed presentations on aplastic anemia treatment. In one he surveyed a number of drugs that have been used with or instead of ATG. In each case he explained ways in which the drug has been successful or unsuccessful.

I know I'm oversimplifying here, but here's what I noted:
  • ATG+CsA+Cellcept (mycophenolate mofetil) showed no benefit over ATG+CsA alone. (ATG is anti-thymocyte globulin. CsA is cyclosporine.)

  • Patients taking ATG+CsA+Rapamune (sirolimus) did worse than those taking ATG+CsA alone.

  • Patients taking Campath (alemtuzumab)+CsA did better than those taking ATG+CsA, with a better 2-year survival percentage. In time, we'll have longer-term survival statistics but the results so far are very promising.

  • High-dose Cytoxan (cyclophosphamide) produced a higher mortality rate from fungal infections, but has shown better 10-year survival than ATG.

  • Promacta (eltrombopag) boosts platelets in ITP patients, but has been found to increase all three blood lines, making it another promising treatment choice.

  • Prograf (tacrolimus) acts much like cyclosporine but may be better for kidneys and blood pressure. Most doctors are sticking with CsA until more study data is available for Prograf's use with aplastic anemia.

  • GCSF has little effect on response rates but can lessen the chance of relapse.
We often hear that patients are worried that ATG hasn't worked when their counts go for months without rising. Dr. Tiu explained that you shouldn't rely on blood counts for the first 3 months after ATG, and determine success or failure only at the 6-month mark. That takes a lot of patience! Although 70% to 80% of patients achieve at least some remission from ATG+CsA, only 30% achieve complete remission, and that's disappointing.

I learned two unrelated facts about "pre-existing conditions":
  • When a patient has AA but is not diagnosed with PNH (this is the case two thirds of the time), and is later found to have PNH after treatment for AA, it's probably because the PNH condition was already present, but problems with cell production due to AA prevented the PNH cells from proliferating.

  • Patients who have muscle or nerve pain after ATG probably had underlying causes before their disease and treatment, with ATG treatment aggravating the pre-existing condition. Long-term muscle or nerve pain is rarely caused by ATG.
I heard interesting news about biomarkers from Dr. Tiu and I got to talk with Dr. Bejar about it too. Biomarkers are clinical factors or lab tests that correlate to disease treatment outcomes and can be used to predict the likely outcome for patients having those biomarkers. For example, patients with higher absolute reticulocyte counts (ARC) and absolute lymphocyte counts (ALC) have higher ATG response rates. That's been known for some time but new biomarkers are being found all the time. Study continues on telomeres, where shorter telomere length predicts higher relapse rates, higher evolution (AA to MDS or MDS to leukemia), and lower survival rates. The key with biomarkers is to find ones that can be used to make the best treatment decisions, not just predict how a patient will do.

I always enjoy listening to talks by Dr. Isabel Schuermeyer, and this time was no different. She spoke about fatigue and the effects of a major disease on our lives. I learned that the fatigue that often accompanies bone marrow failure isn't directly related to blood count levels. It's a side effect of the disease and the body's fight against it, not just a result of anemia. It turns out that many patients under-report their fatigue because they fear that they'll get less aggressive treatment. Studies show that physicians tend to underestimate the impact that fatigue has on their patients' quality of life, so fatigue is an area that deserves more attention from everyone.

I often use the phrase "the new normal" to describe how a family's routines, habits, and life change when a major illness strikes. Dr. Schuermeyer said that some of her patients dislike that phrase, saying there's nothing normal about it. They prefer the phrase "the new reality".

The AA&MDSIF staff was as friendly and helpful as always, and the hotel services were fine. The only way in which I found the patient conference lacking was that there was no session on transplants, a subject that will continue to be very important to patients making treatment decisions.
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Old Tue Apr 8, 2014, 06:35 PM
triumphe64 triumphe64 is offline
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 445
Excellent report.

I will probably attend the one in Detroit. I go every year, and they are outstanding. Besides, you get to meet other patients.
Dallas, Texas - Age 78 - 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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