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Wednesday, May 28, 2008

Adenoid Cystic Carcinoma in the news

Ms. Betty Leubner, a 40 year survivor with Adenoid Cystic Carcinoma, passed away last Tuesday. Here is a story about her in the Milwaukee Journal Sentinel, by Amy Rabideau Silvers: .

Here is a link to her patient profile at the TomoTherapy (she was the first head/neck cancer patient to receive this type of focused radiation in 2005) website:

Please note - ACC wasn't the cause of her death. May we all have 40 years from the date of our diagnosis, and live like Ms. Leubner did.

Monday, May 26, 2008

Adenoid Cystic Carcinoma in the news

I have to remember to search the news for the other term used for adenoid cystic carcinoma: adenocystic carcinoma. Using the alternative term, I found the following items about Milton McPike, of Madison, Wisconsin:

Cancer forces McPike to resign from UW Board of Regents:

Mr. McPike passed away the last weekend in March. Here is a tribute to him by Heather in Wisconsin: Thursday Thirteen #53: Milton McPike

A very great man.

Thursday, May 22, 2008

The Assertive Cancer Patient blog mentioned in a CNN article

I just saw this article over at CNN:
After Cancer Diagnosis, What Comes Next?

It mentions Jeanne Sather's blog as a source of information - I totally agree!

The only sites that they don't mention in the article, that they should have, are:

Use this site for information on health topics, drug information, encyclopedia articles, and directories for health care professionals and organizations.

Go Local
Go to this site and check to see if your state is listed. You can use this directory to locate health professionals, services, organizations, and support groups that are nearest to you or your loved ones.

Finally, if you have had a recent diagnosis, PLEASE ask a librarian for assistance in searching for information. None of us should be Googling into the middle of the night, looking for our own health information. We need evaluated, top-quality information - and librarians do that. After you are well on your way to healing, THEN you can Google your heart out, and won't be so scared from the tales you read online. When I was first diagnosed, I only used librarians - after radiation treatment finished, THEN I went out on the web to see what I could see, and to figure out how to handle survivorship. You can find a library at this link: .

Wednesday, May 21, 2008

Press release about interim results on a clinical trial involving 2 ACC patients

Genentech Provides Update On Studies Of Investigational Biooncology Agents To Be Presented At The American Society Of Clinical Oncology Meeting

South San Francisco, Calif. -- May 15, 2008 -- Genentech, Inc. (NYSE:DNA) today announced results from studies of several investigational agents targeting the biological cancer pathways of HER (human epidermal growth factor receptor) signaling, Hedgehog signaling and apoptosis (programmed cell death). These data will be presented during the 44th Annual Meeting of the American Society of Clinical Oncology (ASCO) taking place May 30 to June 3 in Chicago. Results will be presented from a Phase II study of pertuzumab in HER2-positive metastatic breast cancer and Phase I studies of trastuzumab-DM1 (T-DM1), an investigational HER2 antibody-drug conjugate; GDC-0449, a small molecule antagonist of the Hedgehog pathway [bold type by th]; and two novel agents designed to trigger apoptosis, ABT-263 and Apo2L/TRAIL.

"Early clinical data with these investigational anti-cancer agents reflects our significant research effort and demonstrates Genentech's commitment to discovering the next cancer breakthroughs," said Susan Desmond-Hellmann, M.D., M.P.H., president, Product Development. "By exploring new cellular targets and cancer growth pathways, we hope this research may ultimately lead to improved treatment options for people with cancer."

A First-in-Human, First-in-Class, Phase I Study of Systemic Hedgehog Pathway Antagonist, GDC- 0449, in Patients with Advanced Solid Tumors (Abstract #3516)
Patricia LoRusso, D.O., Karmanos Cancer Center, Wayne State University, Detroit, Mich.; Oral Presentation; Sunday, June 1, 2008, 8:00 a.m. - 8:15 a.m. CDT; W375a

Interim results will be presented from a Phase I study evaluating the safety, tolerability and pharmacokinetic profile of GDC-0449, a small molecule antagonist of the Hedgehog signaling pathway, in 19 patients with refractory solid tumors that have not responded to prior treatment. GDC-0449 demonstrated a favorable pharmacokinetic profile, with high sustained micromolar plasma concentrations and a terminal half-life of greater than seven days. No dose-limiting adverse events were observed at the three dose levels of GDC-0449 studied.

Two cases of reversible drug-related Grade 3 hyponatremia (lowered serum sodium level) and one case of reversible Grade 3 drug-related fatigue were reported. Stable disease was achieved in two patients with adenocystic carcinoma (a rare cancer most commonly found in the salivary glands) and partial responses were observed during this study in two patients with advanced basal cell carcinoma (BCC).

Data were reported earlier this year (American Association for Cancer Research, April 2008) for nine patients with advanced BCC, including the two advanced BCC patients described here, from an expansion cohort of this study. Stable disease or partial responses were achieved in eight out of nine patients (six partial responses, two stable disease) without significant toxicity.

This is the first study to evaluate a systemic Hedgehog antagonist in human clinical trials. Abnormal activation of the Hedgehog pathway appears to be an important mechanism for tumors to survive and grow. Mutations of the Hedgehog pathway have been implicated in the development of several tumors, such as BCC. Additionally, the progression of several solid tumor cancers has been associated with over-expression of the Hedgehog ligand, including colorectal cancer.

Genentech is initiating three Phase II studies of GDC-0449 this year. A Phase II study in first-line metastatic colorectal cancer began enrolling patients in Q2 2008 and other studies are planned in advanced BCC and an advanced epithelial tumor. Genentech is developing GDC-0449 under a collaboration agreement with Curis, Inc.

About Genentech
Founded more than 30 years ago, Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes medicines for patients with significant unmet medical needs. The company has headquarters in South San Francisco, California and is listed on the New York Stock Exchange under the symbol DNA. For additional information about the company, please visit

For the full prescribing information and Boxed Warnings for Avastin, Herceptin and Rituxan please visit

URL for full press release:

URL for Curis press release:

Wednesday, May 14, 2008

Adenoid Cystic Carcinoma in the news

A powerful story about students living after cancer in The University Daily Kansan, including Jessica Roark, who was diagnosed with Adenoid Cystic Carcinoma in her tear duct:

Living In Remission , by Mary Sorrick.

Thank you, Jessica, for allowing your story to be told. And congratulations to all of the KU (and other college) cancer survivors for "keepin' on". You are proving that life is what matters.

Monday, May 12, 2008

Entries Invited for Lilly Oncology on Canvas Art Competition

[This contest includes friends of cancer patients, so you are eligible to enter. Thanks to Siobhan for spotting this and sharing!-th]

Entries Invited for Lilly Oncology on Canvas Art Competition
Deadline: June 30, 2008
The Lilly Oncology on Canvas: Expressions of a Cancer Journey Art Competition and Exhibition was developed by Eli Lilly and Company ( ) in 2004 as a way to honor the journeys people embark upon when confronted with a cancer diagnosis. The 2008 competition invites U.S. and Puerto Rico residents who have been diagnosed with cancer, their health care providers, family members, friends, and caregivers to submit their cancer-inspired artwork.
Copyright (c) 2000-2008, the Foundation Center. All rights reserved. Permission to use, copy, and/or distribute this document in whole or in part for non-commercial purposes without fee is hereby granted provided that this notice and appropriate credit to the Foundation Center is included in all copies. RFP Bulletin (May 9, 2008)

Sunday, May 11, 2008

Roadtrip update

I highly recommend a roadtrip to somewhere you have always planned to go, just to clear the cobwebs out. Don't worry about high gas prices - they look like they will always be with us. I figure I spent less on gas than two round-trip plane tickets, anyway.
We (my mom and I) headed south to Gulf Shores, Alabama (, staying for 4 days and 3 nights at a beach front condo managed by Meyer Realty ( The condo was just as nice as it was presented on the website, putting us closer to the ocean that we had thought possible outside of a cruise! I haven't signed up for another visit yet, but the last week of April sure made a nice time to visit the beach - after the Spring Breakers had left, and before the Memorial Day onslaught of tourists. While at Gulf Shores, we shopped enough at Foley, Alabama ( , ) to get on the good side of the Chamber of Commerce! We ate wonderful seafood - the best was the Royal Reds, the local shrimp (huge!). We took two days to drive down from Missouri, and three days to drive back, staying in St. Louis on the way back at a wonderful olde English inn, the Cheshire Lodge ( I look forward to my next visit there - it was a great place to stay! The last day of the trip, we visited the Butterfly House in Chesterfield, MO ( I hope this wasn't once in a lifetime, but if it was, we sure made the best of it! Thanks to my mom for making this happen - without her encouragement, I don't think I would have tried it. Here are to more travels for us all.

Monday, May 05, 2008

Update from the Live Like Andi Foundation

[I am honored that Mike O'Connell of the Live Like Andi Foundation has read my blog. Mr. O'Connell left two comments on previous posts, but I wanted to elevate his comments to post level so you wouldn't miss them. -cheeky]

1. Thanks for all of the great blog support. The Live Like Andi Foundation Run/Walk for ACC Research was a huge success! We had 900 participants and raised over $75,000 for ACC reaseach. We donated $25,000 of our proceeds to Marnie Kaufman at the ACC Research Foundation. Marnie attended the event on 4/12 and appeared on the Local NBC News with me. For more [information] Visit or to view photos.

2. Great News. Keep up the positive attitude. ACC patients must realize that they are in this for the long fight. ACC most likely is not gone but undetectable. Get your scans and MRI's moved up to every 3-4 months. Early detection and non-invasive radiation on a minimal basis (zap the little tumors early) are the KEY! Thanks for all of the great support/blogs regarding my wife Andi O'Connell's - Live Like Andi Foundation for ACC. Mike O'Connell
Who links to my website?