Friday, November 27, 2009

Going away to celebrate the 25th Anniversary

It isn't the destination, it is the journey, and what a journey it has been! It is probably a good thing those two in the photo didn't know what they were up against in the 25 years ahead of them. 2 wonderful children; 2 wartime activations; 9 moves, including two overseas (I might have forgotten one or two); 3 stock market crashes; 2 experiences in purchasing a home; loss of loved ones; welcoming new loved ones; but overall, pretty darned lucky in life and in love. We are heading back to Kansas City to see the Plaza lights - that was about the most we could afford when we first married and had one night together before I headed back to college and he back to Ft. Sill on Monday after our wedding on a Dec. Saturday. We are going to splurge this time, and actually stay in town two whole nights...

Thursday, November 26, 2009

I wish everyone a fine Thanksgiving

I have so much to be thankful for, and you, the reader of this blog, are on my list. Thank you for following this blog, and for letting me know how the information (as well as occasional jokes) has been a help to you.

Monday, November 23, 2009

Turning down comments, thanks to spammers

I have been receiving a ton of spam comments from a couple of my blogs, including this one, so I am adjusting the comment feature to see if they will leave me alone in the future. Most of my regular readers know my email, and those that are new can find me through the profile. Just remember - neither I nor my readers need any more information about drugs for body parts that I do not possess.

Saturday, November 21, 2009

Adenoid Cystic Carcinoma in the news

A fellow Nebraskan with Adenoid Cystic Carcinoma is now in Tijuana, Mexico undergoing treatment at the Oasis of Hope. Here is the story about Adam Spady's current fight with ACC, as told in the Imperial Republican newspaper: http://www.imperialrepublican.com/index.php?option=com_content&view=article&id=1394:bake-sale-to-benefit-adam-spadys-cancer-treatment&catid=36:news&Itemid=76

I took a look at his recent Caring Bridge journal entry, where he does quite a job at explaining how a long-time cancer patient views the treatment system here in the USA. Since I too have had life altered due to treatment, I completely understand his refusal of more chemo, now that his ACC is back. (Hasn't been much chemo to show effectiveness against ACC in the research.) I am so glad Adam has his family with him, and wish them all the best in their fight. If you are interested in donating to his travel funds, there are instructions in the newspaper article about who is collecting donations. (Note to anyone wishing to create a non-profit to support cancer patients - please consider writing checks for travel costs incurred by patients. Please!)

Another item in the news is a press release from the Exelixis company, who presented promising results on their drug known as XL147 this week at the AACR-NCI-EORTC International Conference on Molecular Targets and Cancer Therapeutics in Boston. In the press release http://ir.exelixis.com/phoenix.zhtml?c=120923&p=irol-newsArticle&ID=1356958&highlight=, They specifically say that a patient with adenoid cystic carcinoma "had a documented decrease of metastatic disease". The trial only included 21 patients, though, and has only been going since October 6, 2009. Patients have been treated with a combination of the XL147 and 150mg of erlotinib. There are currently 5 studies in ClinicalTrials.gov that are using XL147: http://clinicaltrials.gov/ct2/results?term=xl147. I think this is the one that was reported at the conference: http://clinicaltrials.gov/ct2/show/NCT00692640?term=xl147&rank=4. I am very happy for the one ACC patient that experienced a measurable decrease from this drug, but they need to get a whole lot more of us in that study before the results are truly remarkable. If you have ACC mets, take a look at understanding clinical trials here: http://clinicaltrials.gov/ct2/info/understand , and consider contacting them to see if you can participate. Here is the contact information:

Please refer to this study by its ClinicalTrials.gov identifier: NCT00692640

Contacts
Contact: Exelixis Contact Line 1-866-939-4041

Locations
1. United States, Michigan
Karmanos Cancer Institute Recruiting
Detroit, Michigan, United States, 48201
Contact: Erik Troxtel 313-576-8496
Principal Investigator: Patricia LoRusso, DO

2. United States, Tennessee
Sarah Cannon Research Institute Recruiting
Nashville, Tennessee, United States, 37203
Contact: Narquita Kizzie 615-329-7426 Narquita.Kizzie@scresearch.net
Principal Investigator: Howard A. Burris, III, MD

Tuesday, November 10, 2009

Fight cyberchondria - use a librarian to help search health topics!

Saw this in the Washington Post:
A glut of Google can give you a virtual fever

http://www.washingtonpost.com/wp-dyn/content/article/2009/11/06/AR2009110603473.html


from the article: "It's a paradox: The more you read in an attempt to reduce your fear, the more you try to figure things out, the more anxiety peaks. Very few people know how to navigate the Internet and evaluate information when they're anxious, and yet that's when they tend to go online."

If you are searching for health information, and somehow found this blog, please put the keyboard down and contact your local public library. You can request searches with their reference department, and they will find only the information you need. My reference librarians kept me from focusing on how many people die with my kind of cancer, and I could concentrate on what my health care team was telling me, and the hard work of healing.

Monday, November 09, 2009

What brought about the Cheeky Librarian blog?

I gave a bit of the reason on why the Cheeky Librarian blog came to be when I spoke at the Creighton University event. I first started writing emails to my friends to keep them up with the adventures that culminated in my diagnosis of ACC. Then, since I had already been a librarian blogger (http://libeducation.blogspot.com), I figured this medium might be the answer I was looking for in spreading the word. My posts began with my radiation treatment, since I figured telling my experiences might offer someone else a bit of information if they were on a similar path. (Adenoid Cystic Carcinoma is so rare, telling more information about my diagnosis wouldn't offer much to anyone else unless they were my true friend or a voyeur, and my true friends already knew most of the story, so I haven't written much here.) My mom generally said in the best mom-like way that one's issues do not impact the universe, which I take to mean that just because I am going through this stuff, I should not expect others to be as wrapped up in it as I felt some days. So having the blog gave me a venue to record the events in a non-intrusive way.
A funny thing happened while writing the posts, though - I think I read them more than anyone else. My writing became my own cheer leading, showing me that I had already endured a lot, and I could endure more as the radiation treatments zapped their way from parotid to skull base every business day for 6 weeks. Even in the darkest days, I saw humor from earlier ones, and could then find the humor in current situations. On days when I feared going out in public because of the way I looked, I saw photos of myself and figured I could bear the stares again. I was reminded of the kindnesses of my family and my friends, and felt buoyed up all over again, as if they had just done the kindnesses.
Now that I am healed up (from both the initial treatments, and the skull surgery that followed in 2007), I keep adding to the blog in order to raise awareness of others facing ACC (check out the ACC in the news posts as well as the blogs on the right side of this blog), sources of good information, and general life-stuff. I still read this thing, and need to see that life does go on, scan-dances and all.

Adenoid Cystic Carcinoma in the news

From Salt Lake City's Deseret News: Team, Grandma Lift Each Other
http://www.deseretnews.com/article/705342286/Team-grandma-lift-each-other.html

Hey, hey, he's a Monkee! - an interview with Peter Tork from the Lafayette-West Lafeyette, Indiana Journal and Courier:
http://www.jconline.com/article/20091106/ENT06/911060342/Hey--hey--he-s-a-Monkee-

And another story about the discovery of the gene that causes ACC http://cordis.europa.eu/fetch?CALLER=EN_NEWS&ACTION=D&SESSION=&RCN=31360
The statistics given in this story may cause one to freak out (I am reserving judgement at this time): 80%-90% ACC patients die within 10 to 15 years of diagnosis, with 15 year survival rate of 40%. (This just means I gotta live faster, that's all.)

Tuesday, November 03, 2009

Adenoid Cystic Carcinoma in the news

I saw this in the news over the weekend:
$6.5 million gift to UCSF from Irwin and Joan Jacobs for head and neck cancer research
http://news.ucsf.edu/releases/6.5-million-gift-to-ucsf-from-irwin-and-joan-jacobs-for-head-and-neck-cance/

Mr. Jacobs was diagnosed with Adenoid Cystic Carcinoma in 2007, and went through treatment. He and his wife have endowed two distinguished professorships, one in otolaryngology and one in radiation oncology. The press release says it is thought to be the largest gift for head/neck cancer research.

I picked up a couple of things from this announcement:
I hope all of us ACC-wearing folks are known for something other than having a rare cancer - we are all so much more than that, as his bios illustrate. Neither one that I checked says anything about having rare cancer:
http://en.wikipedia.org/wiki/Irwin_M._Jacobs

http://www.qualcomm.com/who_we_are/leadership/exec_bios/irwin_jacobs.html

Another thing - I know now how big a donation I need to make to support Adenoid Cystic Carcinoma research, and have it be the biggest (grin!). If you have the chance to donate to support research on this rare cancer, I can recommend the Adenoid Cystic Carcinoma Research Foundation: http://www.accrf.org/. And they aren't expecting us to call only when we have a spare $7 million lying around - they take any amount and put it to very good use.
 
Who links to my website?