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Wednesday, February 29, 2012

Adenoid cystic carcinoma in the news

First - I saw this story from Staffordshire (UK): Survivor takes up charity challenge after beating rare cancer:

Bernie Webbe, mom of two young children, is going to raise money for Macmillan Cancer Support to help others suffering for cancer. And she isn't doing it close to home - she is going to take 10 days in May to walk across Peru! You can make donations on her site (today's figures show she is over half-way to her goal of 4000 British Pounds):

Congratulations to Mrs. Webbe and her strong family that has supported her through ACC treatment twice. Bernie, you are an amazing person to undertake this challenge - go for it! This Cheeky Librarian (that wears her scars on the other side of her head) will be cheering you on, thanking you for bravely taking every step of the way!

Second - the Bascom Palmer Eye Institute (BPEI) celebrated its 50th anniversary by hosting a scientific meeting.
Among all the research shared:
"Results of a recent study of 19 patients with adenoid cystic carcinoma of the lacrimal gland treated via a novel approach called intra-arterial cytoreductive chemotherapy demonstrated survival rates of 94% at both 5- and 10-year follow-up, compared with 43% and 29%, respectively, for patients with conditions managed by conventional therapies. Two of the patients have had more than 15 years of disease-free survival, one of them for 22 years. "

Thursday, February 23, 2012

Adenoid Cystic Carcinoma in the News

Located this news item from February 4, 2012: Former Mason City [IA] woman has college surgical unit named in her honor . From what I have found and read on Ms. Gonzalez, she was a true inspiration.

Sherry (Brant) Gonzalez died from ACC last March 22nd. The Miller-Motte Technical College named their new surgical technology suite after her on January 27, 2012, honoring the way that she "continued to change futures and lives when she helped her fellow students and also when she was an instructor..."-quote from another article:

And a third article, showing a photo of the suite:

I learned about Sherry Brant Gonzalez through her father's obituary of January 27, 2012, which includes a request for memorial contributions to ACCRF: .

I send my sympathy to the family for their great loss. And I recognize that Mason City has lost not one but two shining lights.

Wednesday, February 22, 2012

Adenoid Cystic Carcinoma in the News

Gerald Babao's story is told in today's South Charlotte News/The Charlotte Observer, from south Charlotte, North Carolina: Fighting rare cancer with extreme exercise

I really like what he says right off the top: "I can't control the fact that I have adenoid cystic carcinoma." He then goes on to say, "The only thing I can control is making sure that I'm as healthy as I can be and living an active lifestyle."

His quote at the end of the article,  "All I can do is be as healthy as I can and perhaps prolong the cancer from coming back and metastasizing. In the meantime, I'm not sitting around waiting. I plan to continue to be active and push myself to be as healthy and active as I can be."

Read more here:

Go, Gerald, go! And I send cheers along for his family, who are supporting this great fund-raising Ironman.

Monday, February 13, 2012

Fellow ACC-wearer shares his story

Adam Spady, the only other Nebraskan I know that has ACC (another one was in our group, but she has moved east), gave me permission to post his comments here that he put on one of my earlier posts. I really appreciate fellow ACC-wearers sharing their stories - since ours is such an individual and rare cancer, we can't really use others' paths to predict where our own will go, but somehow knowing what others have done or are doing gives comfort. Plus, we might find alternative care paths or coping methods that might fit our own needs. As a medical librarian, I have to repeat: I urge anyone reading anything on this blog that I or others have shared to first discuss with their health care provider before stopping or starting any treatment. Now, the next words you read will be from Adam (I will add his contact information here if he gives me permission - otherwise, just post a comment and he will see it) -thank you for sharing, Adam!:

Hi Teri, this is Adam Spady. Thank you for the nice post on my caringbridge site the other day, I appreciate it:) I believe you had posted on my site last yr, but I think I was down in Mexico at the time doing treatments and I forgot to reply to your post when I got home. Anyhow, I didn't read your whole blog but I was just curious what type of radiation you had? And I think I saw you had surgery initially? Any chemo? I was just curious b/c I'm doing alt treatments now through a hospital in Tijuana, Mexico called Oasis of Hope after going through the whole cut/burn/poison i.e. surgery/radiation/chemo here in the US.
Initially, I had fast-neutron radiation (the most nasty type there is I believe) back in 1996. Then I was in remission for almost 9 yrs and thought I was home-free until it came back w/a vengeance (as they say it often does) in '05. At that time I had surgery in Dec, followed by 3 months of chemo/radiation (3 types of chemo & standard radiation not the "neutron bomb" again) in early '06. Then it spread to my lungs (probably caused by either the surgery and/or chemo) and I had the right middle lobe removed in '07. 2008 marked the beginning of reconstructive surgeries to repair the damage caused by all the horrible treatments, which consisted of about 6 months of multiple surgeries (w/breaks in between to let me heal). Then in '09 I found out the cancer was in my liver (again probably spread by either surgery and/or chemo).
A couple yrs prior to that I had decided that never again could I or would I put my self through those horrific treatments. Then fortunately I came across Oasis of Hope through personal research online ( and ordered their free book. After reading it, I decided that would be the place I'd go if my cancer ever came back...and that's just what I did shortly after I found out it had spread to my liver, beginning treatments there in the fall of '09. The nice thing about these alt treatments is there are NO side effects (at least I've never had any)and you can do them in the comfort of your own home (for the most part), as it basically amounts to taking a bunch of pills (vit/min/nutrients) everyday and going back only a couple times a yr for maintenance boosters (the things you can't do at home, like massive IV doses of Vit B-17, Vit C, Vit K, Ozone Therapy, etc). My cancer is stable for the most part, it's still there but not at all very active and I've been living w/it as such for the past 2+ yrs. Oasis views cancer as a chronic disease and they try managing it w/all the vit/min supp (allowing your body do what it was designed to do, naturally heal itself) instead of blasting it out of you like they do here in the US, w/no regard for the permanent damage caused to your body by the treatments. The first 2 guiding principle at Oasis are "love the patient as yourself" & "do no harm to the patient". Now I really hope & pray your cancer never comes back, but unfortunately the odds are not exactly in our favor (as I've come to find out) esp in this toxic world that we live in. So if you would ever like to know more about the treatments at Oasis, I'd be more than happy to answer any ?'s you might have about them:)
Oasis truly is LIGHT YEARS ahead of the way they treat cancer in this country, but sadly money, politics, corruption, greed, deception, etc dictate the types of treatments that are made available to us here in the US (see the books "Cancer - Step Outside the Box" & "World Without Cancer - The Story of Vitamin B-17"). After learning of this, it used to make me so angry and while it still isn't right, I'm at peace now knowing that God will "...bring to ruin those ruining the earth" as it states in Rev 11:18. The people responsible for these corrupt & dishonest practices may not be polluting or physically harming the earth itself, but they are harming the people which I'd like to think are the most important part of the earth in God's eyes...

Take Care
Adam Spady

P.S. Teri is my Mom's name:)

Sunday, February 12, 2012

Adenoid cystic carcinoma in the news

from Kent, UK:
Memory of my brave girl will live forever

Keziah Shorten from Tonbridge went through the first windpipe [trachea] transplant in the world in 2010 during her treatment for ACC, then underwent a second transplant in September 2011. She passed away January 10th this year after complications. Her mom, Tracey Hayter, shared her daughter's story and bravery in this news account.

Fund-raising page and Keziah's story:

Adenoid cystic carcinoma in the news

I think my data might be included in this article, as I was diagnosed in 2006. If you were diagnosed ACC in your head/neck region while living in the USA between 1993 and 2007, and are still casting a shadow, you too could be included in the data. Ask for full-text through your local library (hopefully free or low cost), or you could pay for full-text at the Wiley site:

1. Cancer. 2012 Jan 31. doi: 10.1002/cncr.27408. [Epub ahead of print]

Adenoid cystic carcinoma of the head and neck: Incidence and survival trends
based on 1973-2007 Surveillance, Epidemiology, and End Results data.

Ellington CL, Goodman M, Kono SA, Grist W, Wadsworth T, Chen AY, Owonikoko T,
Ramalingam S, Shin DM, Khuri FR, Beitler JJ, Saba NF.

Rollins School of Public Health, Emory University, Atlanta, Georgia.

BACKGROUND: Adenoid cystic carcinoma (ACC) of the head and neck (ACCHN) is a rare
tumor of minor salivary, parotid, and submandibular glands. The biologic behavior
of the disease is poorly understood, and nonsurgical treatment strategies have
yet to be standardized. The long-term prognosis continues to be guarded, with an 
estimated 10-year survival of <60%. Population-based studies examining ACC are
scarce. The authors aimed to analyze incidence rates and survival outcomes for
patients diagnosed with ACCHN using national population-based data. METHODS: Data
were obtained from the US National Cancer Institute's Surveillance, Epidemiology,
and End Results (SEER) program. Newly diagnosed ACCHN cases reported to SEER from
1973 through 2007 were categorized according to their sex, race, age, year of
diagnosis, marital status, treatment interventions, primary tumor site, and
disease stage. Incidence of ACCHN and postdiagnosis survival were examined over
time and compared across different demographic and disease-related categories.
RESULTS: The authors identified 3026 patients with ACCHN. The mean age at
diagnosis among those cases was 57.4 years (range, 11-99 years). Analyses of
incidence data demonstrated a decline in ACCHN rates between 1973 and 2007, noted
across all sexes and races with no detectable inflexion points. The overall
5-year, 10-year, and 15-year survival outcomes for ACCHN patients were 90.3%,
79.9%, and 69.2%, respectively. Females, patients with localized disease, and
younger patients were found to have significantly better survival across all time
periods (all comparison-specific log-rank P values <0.001). Multivariate analyses
revealed better prognosis among women compared with men (hazard ratio [HR], 0.73;
95% confidence interval [CI], 0.65-0.82), among married compared with unmarried
individuals (HR, 0.81; 95% CI, 0.71-0.91), with certain sites of origin and stage
of disease (HR, 2.788; 95% CI, 2.36-3.29), and in those who had surgery of the
primary tumor site (HR, 0.45; 95% CI, 0.37-0.54). CONCLUSIONS: The overall
incidence of ACC is declining. The noted differences in survival based on sex,
marital status, site of origin, and treatment intervention require further
investigation. Cancer 2012. © 2012 American Cancer Society.

Copyright © 2012 American Cancer Society.

PMID: 22294420  [PubMed - as supplied by publisher]

Saturday, February 04, 2012

From ACCRF - Dovitnib study opens at the University of Virginia

I received this in my email - sharing it here for information. I recommend the two ACCRF publications linked below, too. By the way, in case anyone is wondering - I think I am currently in the "no evident disease" category. I am very glad that there are studies supported through ACCRF for when/if I become a patient with progressive disease, though.

February 2012 

Dovitinib Study Opens
at the University of Virginia 

The University of Virginia has begun screening ACC patients with progressive disease for a new clinical trial. Supported by Novartis Pharmaceuticals, the Phase II study will enroll 10 patients to determine the efficacy and safety of the oral drug Dovitinib, an inhibitor of FGFR, VEGFR and PDGFR. ACCRF-supported studies at the University of Virginia and elsewhere have identified FGFR as a molecular target that may play an important role in ACC. Detailed information on the clinical trial is available at:

Only ACC patients with actively growing tumors may enroll in the clinical trial. Such patients or their physicians may contact the Clinical Research Coordinator in Charlottesville, Virginia, USA:

Erin Yarde, MS
Phone: 434-243-8588

ACC patients should discuss with their physicians whether a clinical trial is appropriate. They also may learn more information by consulting two ACCRF publications:

Looking for Signposts: An Update on Progressive Adenoid Cystic Carcinoma (July 2011)

A Guide to Systemic Therapy for Patients with Progressive Adenoid Cystic Carcinoma(November 2010)

The publications discuss the history of past clinical trials involving ACC patients, recent advances in the molecular understanding of ACC, current treatment options and contact information for open clinical trials. The clinical trial of Dovitinib is an example of the welcome and growing trend of matching molecularly-targeted drugs with those patient groups deemed most likely to benefit based on basic and pre-clinical research.
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