Meetings

Next Meeting:

Past Meetings

April 25, 2010 1:00 - 3:00 pm at Azteca, Seattle

June 28, 2009 2:00 - 4:00 pm
at Cancer Lifeline.
The Dorothy S. O'Brien Center of Cancer Lifeline is located a couple blocks west of Green Lake and Aurora Ave. at 6522 Fremont Ave. N., Seattle, 98103.

March 29, 2009 2:00 - 4:00 pm
at Cancer Lifeline (meeting actually held at Starbuck's on Phinney Ridge).
We heard reports from five members who attended the MPD Patient Conference in Arizona in February.

January 25, 2009 2:00-4:00 pm

We met again at the Dorothy O'Brien Center of Cancer Lifeline. Our guest speaker was Stacy Martin from the Leukemia & Lymphoma Society. She passed out brochures and shared information about ways that their organization supports people with blood cancers. See http://www.leukemia-lymphoma.org/all_chap.

Notice that their website now has a link to Myeloproliferative Disorders:
http://www.leukemia-lymphoma.org//all_page.adp?item_id=311829.

We asked Stacy if it might be possible for our MPD Support group to have a link on their website so that if people (patients or doctors) went there, they'd be able to find us. There is a page with "Helpful Links":
http://www.leukemia-lymphoma.org/all_page?item_id=6749 and it links to a page for Myelodysplastic Syndrome-Specific Resources:
http://www.leukemia-lymphoma.org/all_page?item_id=6749#_mds-specific

Perhaps LLS could add a page for Myeloproliferative Disorder-Specific Resources and include a link to our website. Michele will follow up.

Besides linking to the LLS website, Stacy indicated that LLS could help sponsor an event with us, such as a guest speaker at the SCCA. After Stacy left, we agreed that we'd like to pursue that idea for the June 28, 2009 meeting.

October 26, 2008 2:00-4:00 pm

We met for the first time at the Dorothy O'Brien Center of Cancer Lifeline. We very much enjoyed holding our meeting there and having a tour of the building. We agreed to approach the Cancer Lifeline about helping sponsor our support group by hosting the quarterly meetings. We hope to be able to publicize future meetings through their website calendar, as well.

August 24, 2008 2:00-4:00 pm

The August meeting was held in Denny Hall Room 123 at the University of Washington. We watched DVDs from the Chicago Patient Symposium on Living with Blood Cancers held in May. Thanks to everyone for bringing refreshments!

April 27, 2008 2:00-4:00 pm

The April meeting was held in Denny Hall Room 123 at the University of Washington.

We were very pleased to host Dr. Joachim Deeg, a member of the AA&MDSIF Medical Advisory Board from the Fred Hutchinson Cancer Research Center in Seattle to speak to our group. Topics covered:

Announcement of June conference, how to register, topics/speakers.
Update on current drug trials for MPD's at the Hutch and any results
a. Pomalidomide C-4047 Actimid
b. JAK-2 inhibitors
c. Others?
Update on bone marrow transplant for MPD's
a. ablative transplants
b. non-ablative transplants
c. cord blood transplants?
d. When is it time to have a transplant?

January 27, 2008 1:00-2:30 pm

We had a great turn-out -- about 12 people, including a number of first-timers. Thanks for joining us! Our featured speaker was a long-time member of our support group, who told us about her participation in the Incyte trial at MD Anderson in Houston. She has had PV for a number of years and has developed MF. After a few months last year on Interferon (with no change), she decided to contact M.D. Anderson about their Incyte trial. She flew down to Houston in November and after lots of blood draws, bone-marrow biopsy, etc. etc., she was put on the new medication. She noticed changes almost immediately. Most noticeably, her spleen has shrunk considerably. She'll keep us informed of her treatment in the coming months.

March 4, 2007 1:00-2:30 pm at Las Margaritas in Bellevue

We had a nice turnout -- unfortunately the group of 8 "old-timers" ended up at one table in one part of the restaurant and the group of 5 "newcomers" ended up at a different table in another part of the restaurant! We didn't realize we'd missed each other until the next day. Sol and Caryl both had helpful reports from the February MPD conference in Arizona. If you missed the meeting or the "old-timers" table, please catch us next time or contact mpdinfo@scn.org.

December 10, 2006 1:00-3:00 pm at Chiang's Restaurant on Lake City Way

We had a huge turn-out -- about 15 people, including two new members recently diagnosed with PV. It was a good chance to catch up on how people are doing. Lots of travel ahead in the coming months. Several people plan to attend the MPD Conference in Scottsdale. In terms of meds, most people are doing well with Hydroxyrea. A few are on Anagrelide, and several take nothing except small dose of aspirin. People continue to appreciate having the opportunity to connect with a group of caring people who can share their experiences with MPDs.

September 17, 2006 2-3:30 pm at UW

Tom and Kay and Michele and Paul met at the UW Hospital. Tom and Paul continue to be in good health. "Stay the course." We talked about the conference at Fred Hutchinson last spring and the upcoming conference in Scottsdale, Arizona. Tom and Kay are planning to attend.

July 23, 2006 2-3:30 pm at UW

Light attendance at this meeting. Note that Michele has extra copies of the conference proceedings from the MPD Conference at Fred Hutchinson April 29, 2006. Contact michele@anciauxinternational.com.

March 26, 2006 1-2:30 pm at Costa's

We held a Sunday brunch/lunch to socialize at Costa's Restaurant in the University District. We welcomed two new members -- one recently diagnosed with MF and another who has had PV for about 16 years. Lots of support people too! Almost everyone is planning to go to the MPD conference at Fred Hutchinson on April 29.

January 22, 2006 2-3:30 pm at UW

Our dear friend Carol talked about her stem cell transplant experience in September, 2004. She talked about the process, how she reached the decision through consultations with her hematologist, the Seattle Cancer Care Alliance, and a consult with the Mayo Clinic. With a great deal of family support, she was able to complete a successful transplant. She explained that in a stem cell transplant, the stem cells are harvested from the donor's blood, so it is not a painful process like donating bone marrow is. For almost a year now, Carol has been back at work. She is considered cured of her ET and MF. Congratulations to her and her family! We wish them the best.

December 19, 2005 2-3:30 pm at UW

It was nice to see some familiar faces. We had five folks with MPDs (ET, MF, and PV), plus several spouses in support. Sol Sylvan reported on the Patient Symposium he attended in Washington, DC in October.

A major focus at the conference was the recent identification of the JAK2 gene that seems to be present in about 95% of PV patients and 50% of ET and MF patients. The hope is that the drug companies can target JAK2 for research and perhaps come closer to a cure. (Here's an article about it in Nature Magazine.) There seems to be a growing interest in a "cocktail" approach to drug treatments for MPDs (a little like the approach successfully used for HIV/AIDS) and a recommendation to look at each patient individually when prescribing treatments so that the side effects of the treatments are not worse than the disease itself. Both Doctor Spivak from Johns Hopkins and Doctor Tefferi from Mayo Clinic emphasized treating the symptoms in people who are asymptomatic (rather than aggressively treating the disease). The latest word on transplants is "Don't wait until you're really sick."

August 28, 2005 3-4 pm at UW

About six members of the support group met to talk about the Patient & Doctor Conference at the Mayo Clinic in Scotsdale, AZ last spring. Several folks are continuing pretty asymptomatic -- with or without medications. One member had a stroke this summer, but is recovering well. We are eager to hear from our member who had a Bone Marrow Transplant last fall. From the conference it appears that BMTs are having a much higher success rate than in the past.

July 11, 2004 1-2 pm at UW

We discussed recent developments and consults. Sol shared information from A Handbook of Chinese Hematology 2002. One of our members is scheduled for a Bone Marrow Transplant at the Hutch in September.

April 18, 2004 1-3 pm at UW

We had an informal support meeting, talking about issues surrounding Bone Marrow Transplants when fibrosis reaches a critical stage. Two members did participate in the Big Stair Climb for Leukemia & Lymphoma on March 21 as part of the CBCs-R-Us team.

January 25, 2004 1-3 pm at UW

CBCs-R-Us Support Group member, Sol, presented highlights of the October, 2003 MPD Conference held in New York, organized by Doctor Silver. The conference included a patient-oriented seminar. One of the major presenters spoke about fibrosis as a common denominator of MPDs ("either you have it or you get it"). But he has found that use of a new drug (Revamid) has yielded 64% improvement in patients with fibrosis. There is now an effort to put together a Revamid Trial for MPD patients.

Sol reported that MPD doctors vary in how aggressively they are inclined to treat MPDs. While some have found that Alpha-Interferon can stop the progress of fibrosis, others are only willing to use it minimally. Several doctors favor minimal treatments for as long as possible in asymptomatic patients.

Sol is willing to provide copies of the audio tapes from the patient seminar. If you're interested, contact mpdinfo@scn.org.

Carol offered to send out copies of our MPD Brochure (Adobe Acrobat pdf file, opens in new window) to hematologists/oncologists in the area to share with their MPD patients. We plan to work with the Leukemia & Lymphoma Society to help spread the word about our support group.

Michele encouraged everyone to participate in the Big Stair Climb for Leukemia on March 21. To join the CBCs-R-Us team, contact mpdinfo@scn.org.

May 14, 2003 1-3 pm at UW

Several members of the Support Group met to discuss:

How can we reach more people diagnosed with MPDs (in the NW area)?
What would members like on the web site?
Who is doing the Light the Night Walk?

We scheduled the next meeting for January 25, featuring a presentation by Sol from the Patients' MPD Conference to be held in NY October 15. Sol also recommended the source he uses for supplements (www.customvite.com). Sol has also found NORD (National Organization for Rare Diseases) to be of value.