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Wednesday, June 26, 2013

Cancer - diet and nutrition

I am gathering evidence-based information that is available on how (or if) cancer can be influenced through diet and nutrition. First site I want to share is from the National Cancer Institute:

Fact Sheets: Diet and Nutrition

This is a list of fact sheets that summarize the results of studies dealing with nutrition or diet and cancer.

More to come on this and tangental topics surrounding the food we take in and cancer (both pre- and post-diagnosis). If you know of a good resource on diet/nutrition and cancer, please let me know about it in the comments.

Sunday, June 23, 2013

7 year anniversary since original surgery and diagnosis

Open Road II 
Yep, 7 whole years. And they have been pretty good ones, if I say so myself. There are some things I haven't been able to change (still the fattest person I know that has ACC-what's up with that?), some things I did (began side jewelry business, refocused on what is important to me), and some things aren't that different (still like taking photos and traveling for fun and library outreach). Just very glad I am still casting a shadow, and able to interact with all the great people I knew before and have gotten to know since. Here's to more miles of traveling the ACC road together.

Monday, June 17, 2013

Adenoid Cystic Carcinoma patient is seeking information on clinical trials

I happened across this during a search for ACC on the web:
Technology wanted: Seeking clinical trials for treatments of Adenoid Cystic Carcinoma
-a Canadian is offering $2500 for accepted lead

I haven't thought of seeking clinical trials this way - I would have gone to a medical library (the ones in Canada are wonderful!) and asked them to search for me. Getting a crowdsourced-search going isn't a bad thing, though, which is why I am mentioning it on this blog. The IdeaConnection post goes on to say:

NOTE: The client is already aware of the trials being performed by Snjezana Zaja-Milatovic at the University of Virginia, and the Axitinib trial being performed at the Memorial Sloan-Kettering Cancer Center. 

Cheeky Librarian again - A basic method of searching for clinical trials - If you go to the link on the right side of my blog and click on Search for ACC, you will find 96 trials that include the words adenoid cystic carcinoma. Click the box next to show only open studies, and you will see 22 studies listed. Take that list to your care team, and see if you are a candidate for any of them. 

Another site, CenterWatch, has a page for Head and Neck Cancer - I will add that link to the resource listing on the right side of this blog: 

Wishing the best for the person seeking the information. And if you know of another clinical trial, please sign up at that IdeaConnection site, and maybe your lead will get you the $2500. 

Added information - NIH has a free volunteer registry you may want to sign up for, called ResearchMatch. You can sign up through a link towards the bottom of this NIH page: . It appears to be limited to the United States, but worth checking out. 

I located this Canadian site for clinical trials: , but they say they aren't affiliated with Health Canada. So I went to Health Canada, and located this site for their clinical trials lists: . I will add the second site to the research links collection on the right side of this blog.

Wednesday, June 12, 2013

Happened to see this call for freelancers to find top clinics in Canada that treat Adenoid Cystic Carcinoma

Saw this project call asking for bids from freelancers:

Wondering what sort of flame war I would start if I posted myself to do the project for free? (I figure my qualifications as a medical librarian AND having the cancer should move me to the top of the heap - plus the whole "free" thing.) This is the exactly the type of question you should be able to contact your local medical library with in order to find out the answer.

The librarians would ask you questions like:
-what do you consider qualities of a top clinic? (the person may be interested in number treated, or amount of research published by clinic teams, etc.)
-what would you like included in the list? (contact information, websites, recent and completed clinical trials, etc.)
-are you limiting clinics that reside within Canadian borders, or do you wish to include those clinics outside Canada that are sponsored/connected to Canadian research teams?

I love that the top bid is over $1200 for work completed within 3 days. I need to share that figure with our Head of Reference so we can do some ROI figuring of our own for the searches we complete daily for our health care teams and consumers.

Please let me know if you have ever successfully bid on and were paid for work completed with this site. It may offer us working through cancer another avenue for a bit of cash to cover health care bills. I would want to know someone that had actually received money for work completed before even suggesting it as a source of extra pay, though.

Thursday, June 06, 2013

Sending Happy Birthday wishes for everyone

My Scion Xb, shining in the Kansas sun
When I lived in Germany, we had two birthdays - one for the day we were actually born, and one on our "name day". I figure that anyone that has had a cancer diagnosis has probably either limited number of remaining birthdays, or (more probably) realizes a bit stronger than regular folks the importance of marking birthdays. I have marked anniversaries of the cancer trek, but refuse to call any of those dates a celebration (even the last day of my radiation was not one to celebrate, just to be endured.) So, on this day, one that I know at least 3 people are celebrating as their birth-day, I join Jay Lake's wish of making this his birthday to all of us, and propose that anyone (walking the cancer path or not) should have it as their second birthday. Party it up, everyone! Or just smile in the knowledge that we are casting shadows together for one more glorious day.
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