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Thursday, December 31, 2009

Adenoid Cystic Carcinoma in the news

1. "Tricia's Tree" raises money for cancer research,122509triciastree.article
The SouthtownStar reports about a fundraiser conducted at the First Midwest Bank in Crestwood (Il) by the husband of Patricia Mason. Mrs. Mason passed away earlier this year from ACC. Folks that donated money to the American Cancer Society at the bank could place a purple ornament on the tree, with purple being Mrs. Mason's signature color. My condolences to Mr. Mason and his daughter for their loss of such a cool lady, and I congratulate them on such a great way to mark her memory for others to follow.

2. Another link that I found shouldn't have been where I found it. It is evidently a copy of a letter written to an insurance company, complete with great journal references, about benefits of using proton radiation on ACC. I think it is from the discussion list of ACCOI, based on the title of the header, but not sure how it got posted on the blog where I found it (if I had seen it on the discussion list only, I wouldn't post it here - very bad etiquette. Posting it since I found it "in the wild".): "Re: [ACCOI] references and research articles regarding dosage amounts .
If you want to get copies of the journal articles mentioned, please call/go to the nearest library listed in this directory: , and ask how about their services for consumer health information. Usually, if the journal is held in the library, you can go and make a copy for yourself, but if it has to be requested from another library, there may be a fee involved (please consider it a dry-cleaning fee, and just cover it to get access to the full-text).
Here are links and email addresses for the ACCOI website and discussion board, if you wish to join:
ACCOI website:
Post message:
List owner:

Thursday, December 24, 2009

Hello from the Blizzard of 2009

We are supposed to get 14 inches of snow or more by the time the storm ends Saturday night, but right now, about 10 inches of it is tearing through the air at 40 mph. Lucky the dog was outside at midnight, answering the call of nature - if it is true that animals speak at midnight on Christmas, I didn't hear what he said over the wind (probably better that I didn't, though). Half the household has to work tomorrow - Walgreens is open, as is security at our university, so two will be leaving early to get to work, keeping any Christmas celebrating postponed until tomorrow night. I wish everyone a great holiday, and may all your dreams come true. I thank goodness that I have an insulated house with running water and central heating to face this storm with, instead of how folks had to face bad winters in the past here in Nebraska. Merry Christmas to all!

Thursday, December 17, 2009

Nothing funny about shingles

I was diagnosed with shingles on Tuesday, and have tried to come up with something funny to say about the experience, but have lost my grin. I waited an hour to set up a same-day appointment after we first saw the blister rash (the dear husband was the first to diagnose it, so I was only going for a second opinion). The PA that I met with later that morning prescribed an antiviral med, and offered pain medication later if I need it. The reason I was so hot on getting the antiviral medicine is to try to keep down the postherpetic neuralgia that follows shingles - they say that your best chance to fight this is by getting medicine within the first 72 hours. Since I already wear enough neuralgia to share with a neighborhood, keeping more at bay is a big deal to me.
Lucky for me, I don't do paper hanging for a living (the rash is on the upper chest by my right arm). But wearing clothes is an issue - yet required for my job, imagine that. Having plain white t-shirt between me and outer clothes has been a big help, keeping the rougher fabric away from the rash.
I know that anyone with cancer or other diseases that affect the immune system have a higher chance of developing shingles, so this wasn't a total surprise. Just a big disappointment, another pain to deal with, and not how I wanted to face the holidays. I work hard to be just as reliable and vital at work as before the cancer came, and hate it whenever something comes up to remind the bosses that I am 'damaged goods'.
For more information about shingles, including photos in case you need to check out your own rashes, check out MedlinePlus:

Sunday, December 13, 2009

Recent literature on Adenoid Cystic Carcinoma

If you or someone you know experienced ACC and was treated at the Ohio State Medical Center, you might be anonymously mentioned in their recent article published in The Laryngoscope:

Patterns of recurrence and survival of head and neck adenoid cystic carcinoma after definitive resection. . (To get full text of this article, check with your local library listed here: - interlibrary loan fees may apply. You can also pay for a one-day access fee to the publisher off of this page:
The abstract of this article says that there was "no difference in survival, rate of recurrence, or time to recurrence" between patients that received radiation therapy and those that received surgery alone. Speaking with my taste-impaired tongue, I would really want to spare anyone else radiation therapy if there is no evident benefit in keeping the cancer at bay, but this research only looked at 57 people that received radiation, out of a total of 99 people. Too small a group, folks. What I would hope to see is someone to re-run this research on many tertiary care center records, and get some useful evidence to help guide the treatment protocols for my type of cancer.

Another recent article, in the journal Cancer E;pidemiology, Biomarkers & Prevention, describes incidence rates of cancers of the major salivary glands, including Adenoid Cystic Carcinoma: Incidence of Carcinoma of the Major Salivary Glands According to the WHO Classification, 1992 to 2006: A Population-Based Study in the United States. (You can get an interlibrary loan copy - may incur fees - from the libraries listed in the link above, or go directly to the publisher's site and pay for access: ) I guess this one may include me, since my cancer was detected and reported in 2006.
Who links to my website?