A Tweet To A Blog

Just when I think I can't be surprised by the power of social networking...yep, something happens that surprises me. After several months, I went back to my twitter account and used it for taking notes during a Symposium. The next day, a friend twittered a workshop that I couldn't go to and I got insights I otherwise wouldn't have. I was pretty happy with that, and wanted to keep some activity up, so I decided to pick my research blogs back up and twittered a few links to remind myself to post them. I didn't think anything of it. Today I got a note that I had a new follower on my twitter. I checked the profile, and it is a breast reconstruction surgeon in San Antonio. Must have picked up my tweet on the San Antonio Breast Cancer Symposium. Now that is pretty cool. He appears to be an active blogger and posts lots of great information, so I will advertise his blog while I'm thanking the amazing aspects of social networking. He also is on Facebook.

Breast Cancer Reconstruction Blog, http://breast-cancer-reconstruction.blogspot.com/

Message Sent To The Lymphatic Research Foundation

I would like to know how I could become more involved in advocating for lymphatic research, particularly as it relates to lymphedema induced by breast cancer treatment. I am in Champaign, Illinois, the home of the University of Illinois and Mills Breast Cancer Institute. I am a patient advocate with the North Central Cancer Treatment Group. Apart from donating, what can an individual like me do to advocate for research and improved treatment?

Thank you,

xxxxx

Ovarian Cancer Clinical Trial

To bring up with my oncologist in January, but there is at least one criteria that I may not meet:

Phase II Randomized Study of Levonorgestrel in Patients at High Risk for Ovarian Cancer (Levonorgestrel in Preventing Ovarian Cancer in Patients at High Risk for Ovarian Cancer)

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=532268&version=HealthProfessional&protocolsearchid=4876012

Another to bring up:
National Ovarian Cancer Early Detection Program Blood and Genetics (NCT00531778)
http://www.clinicaltrials.gov/ct2/show/NCT00531778?term=NCT00531778&rank=1

Alamo Breast Cancer Foundation Scholarships

Scholarship applications for the 2009 San Antonio Breast Cancer Symposium will be taken starting April 2009.

Patient Advocacy

Last month I started my journey along Patient Advocacy. I joined the Patient Advocate program through Carle Clinic and Mills Breast Cancer Institute. The program is part of the North Central Cancer Treatment Program (NCCTG), associated with Mayo. Patient Advocates play an active role in cancer research by bringing the patient perspective to the investigative and clinical environment. As a patient advocate, I get the opportunity to attend scientific meetings, review trial protocols, and make presentations to interested groups of scientists and clinicians. I joined the Patient Advocacy group specifically to bring the Young Adult issues to the forefront of research.

Some patient advocate stories: http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/885 http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/895

News from San Antonio Breast Cancer Symposium 2008

http://media.curetoday.com/htmlemail/sabcs/
(Be sure to check out all 3 Days of updates!)

Something to take note of: Zometa, a bisphosphonate that is used to prevent bone loss, has been found to have positive effects on preventing cancer-recurrence.

Article in the Washington Post (Dec. 11, 2008) also mentions benefit to pre-menopausal women:

"In June, doctors were stunned when a big study found that Zometa _ given to prevent bone loss caused by certain cancer treatments _ also greatly cut the risk that cancer would recur in women who developed the disease before menopause"

8 weeks to go

and I am feeling really unprepared. Not physically. I know I can do this physically. But I haven't yet gotten my walking shoes. I haven't looked for a sleeping bag or mattress. I think I need to be sending in my medical form or some such thing. I haven't thought about who I might share a tent with. But I still have time for all of this, don't I?

I've been tracking my miles since April, and I have racked up over 450 miles so far. That's pretty good. This weekend I am supposed to walk 15 miles Saturday and something like 10 or 12 on Sunday. It's so time-consuming, but I will try hard to fit it all in.

We have a fundraiser on July 8. I am only halfway to my goal.

Still a lot of work and preparation to do.