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  #1  
Old Fri Mar 8, 2013, 12:30 PM
Marrowforums Marrowforums is offline
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San Francisco Bay Area California MDS Support Group


The San Francisco Bay Area MDS Support Group is open to all patients, family members, and caregivers in the Bay Area, California.

The group is designed to provide mutual support and education to individuals with MDS who may feel a little less alone by meeting with others whose situations are similar to their own.

Every other month the group has invited speakers, who cover a variety of topics such as current information about MDS, therapeutic approaches, clinical trials, nutrition, and many others. The meetings are open sessions in the intervening meetings.

Meeting Schedule:
First Friday of each month
1:30-3:00pm
Location:
Stanford Cancer Center
875 Blake Wilbur Drive
Palo Alto, CA 94305
Google map

Meet in the Second Floor Conference Room CC2105.
The MDS Support Group is led by
Lenn Fechter, RN, BSN

Andrea Linder, RN, MS
For more information about the San Francisco Bay Area MDS Support Group, email cancersupportivecare@stanfordmed.org or phone 650-725-9456.

For more information about Communities of Hope support groups, see the Aplastic Anemia & MDS International Foundation's Communities of Hope page.
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  #2  
Old Fri Mar 8, 2013, 12:37 PM
Marrowforums Marrowforums is offline
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Meetings in 2013

Friday January 4, 2013
Open Session
Friday February 1, 2013
Surviving with MDS
Kelly Bugos, NP
Friday March 1, 2013
Open Session
Friday April 5, 2013
Transfusions, Treatments, Side Effects and More Part II
Sandy Burgess, RN, OCN
Stanford Infusion Treatment Area (ITA)
Friday May 3, 2013
Open Session
Friday June 7, 2013
MDS Roundtable
Dr. Jason Gotlib
Associate Professor, Department of Hematology
Stanford University
Friday July 5, 2013
no meeting this month
Friday August 2, 2013
Daily Nurturing Practices
Lori Klein, Cancer Care Chaplain
Friday September 6, 2013
Open Session
Friday October 4, 2013
Transitions and Palliative Care:Hospice of the Valley
Ed Wendler, Ambassador and Volunteer

Living every moment with a Serious Illness
Christine Merriman, MSW, LCSW
Friday November 1, 2013
Open Session
Friday December 6, 2013
no meeting this month

Last edited by Marrowforums : Mon Jul 22, 2013 at 05:38 PM. Reason: updated July-December
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  #3  
Old Mon Jul 22, 2013, 05:42 PM
Marrowforums Marrowforums is offline
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The 2013 schedule shown in the previous post has been updated with speakers and topics for August 2 and October 4. No meeting is planned for December.

For further information, for answers to questions, or to make suggestions, contact Lenn Fechter using the contact information in the first post above.
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  #4  
Old Wed Jan 29, 2014, 09:12 PM
Marrowforums Marrowforums is offline
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Meetings in 2014

Dates: The first Friday of each month
Time: 1:30pm - 3:00pm


Friday February 7, 2014
What is this iron business all about?
Carolyn Pittenger RN, MS, MSCN
Friday March 7, 2014
Integrative Medicine for MDS
Sue Kim, MD, MS, DABMA,ABIHM
Friday April 4, 2014
Open Session
Friday May 2, 2014
MDS Roundtable
Jason Gotlib, MD, MS
Friday June 6, 2014
MDS: What’s new about our disease?
Peter Greenberg, MD
Friday July 4, 2014
Holiday; no meeting this month
Friday August 1, 2014
Daily nurturing practices and living with uncertainty
Rabbi Lori Klein
Friday September 5, 2014
Transfusions, Treatments, Side Effects and more
Sandy Burgess, RN,OCN
No registration is necessary. Just drop in. Call 650-725-9456 to confirm the date of each meeting. Parking passes are provided for the Pasteur Visitor Garage.

For more information email cancersupportivecare@stanfordmed.org or phone 650-725-9456.
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  #5  
Old Fri Nov 14, 2014, 09:41 AM
JeriM JeriM is offline
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Location: Bay Area, CA
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AA in SF Bary Area

Can anyone recommend a doctor at UCSF?
Oops - AA in SF BAY Area.
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  #6  
Old Fri Nov 14, 2014, 06:03 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by JeriM View Post
Can anyone recommend a doctor at UCSF?
Oops - AA in SF BAY Area.
This name came up when I did a search for AA at their website.

http://www.ucsfhealth.org/karin.gaensler
__________________
Dallas, Texas - Age 81 - 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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  #7  
Old Fri Nov 14, 2014, 06:46 PM
JeriM JeriM is offline
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Location: Bay Area, CA
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AA doctor at UCSF

Yes, I saw Dr Gaensler's name on their site and have left a few phone messages with no response from her office. I was hoping someone had some personal experience with her or someone else. If not at UCSF, perhaps someone else in the Bay Area??
Thank you!
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  #8  
Old Sat Nov 15, 2014, 11:56 AM
Hopeful Hopeful is offline
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Hi Jeri,

Dr Jason Gotlib at Stanford is excellent. He does AA and MDS and is very knowledgable and dedicated. He saved my life.

Interestingly...I also tried contacting UCSF in the beginning of my diagnosis and never had my phone call returned! I contacted Stanford and had an appointment for later that week.
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #9  
Old Sat Nov 15, 2014, 01:35 PM
JeriM JeriM is offline
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Thank You!

Thank you so much! I will contact him. That's exactly what I needed.
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  #10  
Old Wed Jan 14, 2015, 12:54 AM
Marrowforums Marrowforums is offline
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2015 Meetings

Meetings are the first Friday of the month.

Meetings in 2015:
  • Friday January 2
  • Friday February 6
  • Friday March 6
  • Friday April 3
  • Friday May 1
  • Friday June 5
  • Friday July 3
  • Friday August 7
  • Friday September 4
  • Friday October 2
  • Friday November 6
  • Friday December 4 (tentative)
Time: 1:30pm - 3:00pm

Location:
Stanford Cancer Institute (2nd Floor Conference Room CC2105)
875 Blake Wilbur Drive
Palo Alto, CA 94305

Google map
If you plan to attend any of these meetings, please RSVP to Lenn Fechter or Andrea Linder at 650-725-0744 or by email.
For more information about Communities of Hope support groups, see the Aplastic Anemia & MDS International Foundation's Communities of Hope page.
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  #11  
Old Sun Feb 7, 2016, 11:11 PM
Marrowforums Marrowforums is offline
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Join Date: Jul 2006
Posts: 920
2016 Meetings

Meetings are the first Friday of the month.

Meetings in 2016:
  • Friday March 4
  • Friday April 1
  • Friday May 6
  • Friday June 3
  • Friday August 5
  • Friday September 2
  • Friday October 7
  • Friday November 4
Time: 1:30pm - 3:00pm

Location:
Stanford Cancer Institute (2nd Floor Conference Room CC2105)
875 Blake Wilbur Drive
Palo Alto, CA 94305

Google map
If you plan to attend any of these meetings, please RSVP to Lenn Fechter or Andrea Linder at 650-725-0744 or by email.
For more information about Communities of Hope support groups, see the Aplastic Anemia & MDS International Foundation's Communities of Hope page.
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