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Health & Fitness

April Mtg, Research funding, Pain Webinar & more

There are 7 elements to this posting:

April Meeting

Capitol Hill Politics and PanCan Research Grants

Find out what's happening in Menlo Park-Athertonwith free, real-time updates from Patch.

Local Breaking Research News

Budget Deficit Workshop

Find out what's happening in Menlo Park-Athertonwith free, real-time updates from Patch.

Stanford Support Groups

Cancer CAREpoint Support Group

PanCan webinar on Pain and Symptom Management

 

Monthly Affiliate Meeting hosted by our gracious host, Sports Basement in Campbell (they provide refreshments and a discount!)

Hello Friends,

April is National Volunteer Month, and the Silicon Valley Affiliate of the Pancreatic Cancer Action Network is fortunate to benefit from the efforts of truly amazing volunteers, who are dedicated to making a real difference in the fight to defeat pancreatic cancer. If you too would like to contribute a few hours to the fight, please contact us.  We have opportunities to match your interests and availability.  

And please join us for our affiliate meeting highlighting volunteering and advocacy.

Tomorrow Wednesday April 16th at Sports Basement in the Pruneyard, Bascom Ave. (between Hamilton and Campbell Avenues In Campbell) From 6:00 – 8:00 pm.  Refreshments provided.

We will be honoring Our Volunteers During National Volunteer Month

We are looking forward to seeing you there.

 

How Capitol Hill Politics are Impacting Pancreatic Cancer Research

This was a webinar on 26 March 2014 by the Pancreatic Cancer Action Network

Julie Fleshman, Pres/CEO of PanCan, noted pancreatic cancer is presently the 4th most lethal cancer and is expected to be 2nd by 2020

PanCan made 94 grants over last decade (2014 crop to be announced in April, 14 grants announced so far to the tune of $4.6 million and more announcements later in the month, see http://www.pancan.org/research-grants-program/grants-awarded/by-year/2014-pancreatic-cancer-action-network-research-grants/ for details)

2014 saw 75K queries to PALS and there are 58 Affiliates

Work on what became the Recalcitrant Cancer Research Act started in 2008 AFTER PanCan led the charge to produce a groundswell of interest in the public and in Congress.  Ultimately, there were 354 co-sponsors (Congress total 535) and this bill was one of only 2% of the bills that passed into law (signed by Pres Obama 3 Jan 2013).  Bill defines Recalcitrant as a 5 yr survival worse than 50%, so only lung, brain and pancreas qualify.  Bill requires NIH to build a research framework, but effort is not explicitly funded so our work is not finished.  Bill requires framework by July 2014, but that for pancreas was delivered in March (early).  I found it very interesting that PanCan is pushing NIH to get the lung portion done on time.  NIH identified 4 (unranked) Priorities: Relationship to diabetes; Biomarkers (early diagnosis); Immunotherapy; KRAS targeted therapy.

Dr Channing Der (UNC, Chapel Hill), one of the discoverers of KRAS issue in early 80s and a recent PanCan grantee, spoke to the research issues.  He showed a pancreatic cancer map similar to that in Siddhartha Mukherjee’s “Emperor of All Maladies” for prostate cancer (DNA map with peaks corresponding to frequent mutation sites).  As is well-known, KRAS was the largest peak, but three other peaks were nearly as prominent, namely SMAD4, TP53 and CKN24.  It sounds to me as if we need therapy for four different targets.  Key researchers are Harold Vermus, David Heinbrook and Frank McCormick, the latter at UCSF.

Dr Der also spoke to the difficulty of getting funding.  Presently only 10% of the grant proposals are funded, though a comparable proportion of the proposals are science-worthy but still unfunded.  It becomes problematic (read political) to see which research programs stay alive.  The other pernicious element to scarce funding is that researchers spend a great deal of time chasing funding, rather than running their research programs.

Megan Gordon Don, head of PanCan’s DC office, noted that a poll of Congressional staffers says that appearing on the hill is the single most persuasive action, cited by 97% of the staffers.  Advocacy Day 2014 is June 17, while 16th is training, 15th is Research Lecture, 14th is Purple Stride. 

Another piece of news is that one can get guidance from PanCan if one wants to attend a Town Hall meeting.  No doubt the purpose is to make sure our message is consistent from one of us to another.  Typical elements would be wear purple, know proper questions.

Another interesting point: NIH is not the source of all federal funding, as there is a small Dept of Defense element.

Also interesting that a question was whether objectives are ever revisited … Answer is yes, as the Recalcitrant Cancer Research Bill calls for metrics, which would be used to measure what works and what does not.

Link to the actual NIH report will be posted at PanCan website.

 

Breaking News on the Research Front

UCSF just appointed to a well-funded national dream team, locally led by Dr. Margaret Tempero

http://cancer.ucsf.edu/news/2014/04/08/pancreatic-cancer-dream-team-tackles-baffling-deadly-disease.5244

 

Lisa Niemi Swazie has funded a research grant at Sanford under Dr George Fisher

http://med.stanford.edu/cancer/features/research_news/Patrick_Swayze_Pancreas.html

 

Not exactly pancreatic cancer, but our very effective in the US House of Representative, Anna Eshoo (who got the Recalcitrant Cancer Research Act PASSED in 2013 after 5 years of preparation) sponsored a Budget Balancing Exercise, entitled “Principles and Priorities.”  The exercise was attended by about 120 citizens and written by the Concord Coalition.  Each group of 8-10 constituted a mock Congress and had to vote on 43 line items that would affect the budget.  At the end of the exercise, we toted up the results which ranged from about $1 to $4 trillion deficit reduction over 10 years. The reason I bring up the subject is that one line item was to decrease funding for the NIH!  Fortunately, our group voted no to this action.

 

NOT to dilute PanCan’s efforts but to supplement them …

There are two different Support Groups at Stanford relevant to pancreatic cancer.  One is specifically for pancreatic cancer on the 2nd  Wednesday each month (camille.wheatley@gmail.com) while the other is for Gastroenterology Caregivers (ELHarris@StanfordMed.org) on the 1st  Wednesday each month.  Both meet on 875 Blake Wilbur in room CC2105 of the Cancer Center at 6PM.

 

Martha Man, MD and Beth Dunn, Palliative Social Worker (both from South Bay Oncology & Hematology) spoke at Cancer CAREpoint in mid March.  The key learning for me was that palliative does NOT equal hospice and end of life.  On the contrary, if holistic efforts are employed, even terminal patients will experience about 3 months more quality time.

Speaking of palliative treatment, PanCan presented a good webinar on the subject namely

Pain and Symptom Management in Pancreatic Cancer
Andrew T. Putnam, MD – Smilow Cancer Hospital at Yale New Haven.
This webinar was recorded on March 5, 2014  http://youtu.be/ClY5yaBxxh8

The link to Pain and Symptom Management shows only the slides, while youtube has the audio as well.  The biggest surprise to me was that the pain killer, fenatyl, is 100X more powerful than morphine.  No wonder the fen-fen diet of a few years ago was so dangerous!  Another distinction was that addiction (e.g., chemical as with nicotine from smoking) is not the same as psychological dependence (compulsive drive).  Yet another surprise was that NSAIDs can mask more serious issues.

Other archived PanCan webinars are available at

http://www.pancan.org/section-facing-pancreatic-cancer/learn-about-pan-cancer/educational-events/

 

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