Sunday, July 31, 2011

Adenoid Cystic Carcinoma in the news

Great quote from Peter Tork
When the Burlington Free Press (Vermont) asked Mr. Tork how having Adenoid Cystic Carcinoma had changed his life, he replied,
"None, zero, zip, zip-a-dee-doo-dah. If it took cancer to change my view of life, then my view of life was not very solid beforehand. I’ve been blessed to have a philosophy that didn’t need to shift."

You can read the full interview here:
Hey, hey it's The Monkees' Peter Tork
http://www.burlingtonfreepress.com/article/20110728/ENT/110727020/Hey-hey-s-Monkees-Peter-Tork?odyssey=nav%7Chead

Sunday, July 24, 2011

Adenoid Cystic Carcinoma in the news

2 items located in the news -
From the UK - Michaela Davis is raising money for ACC as a tribute to her stepdad, Keith Bunton, who was just diagnosed with Adenoid Cystic Carcinoma this past September:
Colchester schoolgirl's cycle tribute to cancer victim stepdad
http://www.gazette-news.co.uk/news/9155790.Girl_s_cycle_tribute_to_cancer_victim_stepdad/

(Maybe because I am forever curious in all things geographic, I looked up the location of Colchester - it is in Essex.)

You can check out their Facebook page here. And the direct link to her fundraising page at JustGiving.com is:
http://www.justgiving.com/michaela-davis0
--------------
I found this July 15th story - if I have posted it before, blame the swiss-cheese brain, please.

A benefit for Gary Eccles, retired Peru, IL firefighter, is set for August 6th:
http://www.newstrib.com/articles/news/local/default.asp?article=28560&aname=Gary+Eccles+benefit+set+for+Aug.+6

They have a Facebook page here.
from the article: "Donations can be mailed to Peru Fire Department, 816 West St., Peru, IL 61354. Make checks payable to “Gary Eccles” and write “fundraiser” in the memo line."

Tuesday, July 19, 2011

Adenoid Cystic Carcinoma in the news

Congratulations go out to a fellow ACC warrior Melanie Jaggard and her husband, Charlie, who are expecting twins! Yay! Good news!! From Wales Online:
Young woman with rare form of terminal cancer due to give birth to twins
http://www.walesonline.co.uk/news/wales-news/2011/07/19/rare-cancer-woman-will-be-first-sufferer-to-give-birth-91466-29078429/

But I do ask you, dear reader, if you have information to assist with what the reporter, Simon Gaskell of the Western Mail,  and Mrs Jaggard says later in the article:
"But after searching endlessly to find a precedent for their circumstances they drew a blank, leading them to believe Melanie is the first-known ACC sufferer to become pregnant.


“We can’t find any other person with a history to see what may or may not happen,” Melanie said.
“I didn’t want to get pregnant if there was any evidence it would have a negative impact on the twins or a negative impact on my health because there was no point having a family if I couldn’t see them grow up and support them and the rest of it.
“The doctor said: ‘From a human perspective I can’t give you any evidence it might have a negative impact. If you want to have a family and get on with life, go for it’.”


Read More http://www.walesonline.co.uk/news/wales-news/2011/07/19/rare-cancer-woman-will-be-first-sufferer-to-give-birth-91466-29078429/#ixzz1ScWo5aff


Update - located another story on the Jaggards here: http://www.southwalesargus.co.uk/news/9147022.Gilwern_woman_with_terminal_cancer_is_expecting_twins/

Donate to their fundraiser here: http://www.justgiving.com/charliejaggard

Cheeky Librarian here again - as for my becoming pregnant after ACC diagnosis, the only thing that kept me from doing it was my impending 50th birthday. All my parts are still in working order, no matter what ACC is or isn't doing currently, so in theory (and if the power that moves the world has a huge, really huge, sense of humor), I could have a baby (gulp!). Since I have annual massive medical charges for scans (massive to me-everything is relative, boys) and trying to save for a retirement that may not actually take place, deciding on purpose to bring a baby into the household is not my first choice. But I bet that there are folks that have had babies during or after their initial or subsequent diagnoses. If you know of someone, or are someone, please leave a comment. If anything, to let Mel and Charlie know that their leap forward to grab life by both fists can have a very happy ending.

Monday, July 18, 2011

Adenoid Cystic Carcinoma in the news

Article published July 16th in The Jamestown Sun - "JHS sophomore fights rare cancer"
http://www.jamestownsun.com/event/article/id/140122/

Mackenzie Gerszewski was diagnosed with ACC on May 7th, and had surgery to remove the tumor, upper jaw, and palate. She is about to go through radiation treatments. The article announces the benefit hog roast and auction to be held tonight from 4-8pm at St. John's Academy. If you can't attend, but want to donate to help with medical bills, send me a comment and I will give you a phone number to call.

I sure hope the benefit pulls in lots of funds to help the family with the medical bills, and that Miss Gerszewski has the best care ever in order to heal up.

Friday, July 08, 2011

Caveats for gene-based cancer research

I posted earlier this year about a success story from San Antonio where they used genetic testing on one ACC warrior's tumor to customize treatment protocols, and evidently experienced reduction in tumor size: Genetic tissue testing leads to 'personalized' cancer treatment.

The New York Times has a July 7th story about genetic cancer testing programs today - and how they have not held up to scientific standards: How a Bright Hope in Cancer Fell Apart.
A chilling quote from the story: "... as patients and their doctors try to make critical decisions about serious illnesses, they may be getting worthless information that is based on bad science."

If you or anyone you know is exploring this type of personalized treatments, please continue to ask questions about the science behind the tests they use. As special as we are, we deserve the best science.

Wednesday, July 06, 2011

Getting your official life in order before you die

Yeah, I said the three-letter word. Because we all have to deal with it, and the favor we can grant our survivors is to have our papers in order. (Now, when someone reads this after I have shuffled off the immortal coil, they will know the irony of my posting this information - IF I didn't follow the advice I have received today).

I saw this article in the Wall Street Journal:
Designing your death dossier - 25 documents you need before you die
http://online.wsj.com/article/SB10001424052702303627104576410234039258092.html 

I am currently going through our papers and STUFF, coming to grips with the fact that items that hold potential collectible value are in reality decades away from being showcased on The Antiques Roadshow, and shredding/tossing/unloading. Pretending I am looking at someone else's stuff, and chucking it. At the same time, getting the important papers together so those unlucky enough to be tasked with tying up loose ends after I am gone can figure out what off-shore accounts they should cash in first (heh - that is a sarcastic joke, in case you are with the revenue service).  Number one daughter has left the country for international schooling, and while she and number one son are mostly out of the house, it is time to move it-move it-move it (said in the great Sgt. Carter's voice from the tv show, Gomer Pyle, USMC).

If you have the power to send strength and stamina through the Interwebs, please funnel some my way! And if you are joining me in this effort, let me know how it works for you. 

Adenoid cystic carcinoma in the news

News about Pfizer funding research on how its drug, Axitinib, affects cancer through the National Comprehensive Cancer Network, including adenoid cystic carcinoma:
http://www.businesswire.com/news/home/20110705005836/en/Researchers-Receive-Grants-NCCN-Oncology-Research-Program 

Sites that were awarded, and type of cancer studied (links to these centers and names of researchers are in the article above):
-Memorial Sloan-Kettering Cancer Center (ACC)
-Roswell Park Cancer Institute (advanced melanoma)
-H. Lee Moffitt Cancer Center & Research Institute (advanced carcinoid tumors)
-University of Michigan Comprehensive Cancer Center (head/neck cancer)

Other studies on this drug in the Clinical Trials database:
http://clinicaltrials.gov/ct2/results?term=axitinib

Research published that mentions the drug name and/or number:
http://www.ncbi.nlm.nih.gov/pubmed?term=axitinib%20OR%20AG013736

Mention of the drug in financial news:
http://search.cnbc.com/main.do?target=all&keywords=axitinib&categories=exclude

The search function on the FDA drug site didn't retrieve anything-but Pfizer has gone for approval, based on its performance on renal cancer:
http://www.fda.gov/Drugs/default.htm

Monday, July 04, 2011

Good goal, weird place to have the recruiting, IMO

In my opinion (IMO), more people should sign up for long term studies on healthy living. Following humans (usually a set group, like nurses http://www.channing.harvard.edu/nhs/) generally results in observations that others can use to improve their own lives.

So I was excited to see this headline:
 Relay For Life seeks committed research subjects (from The Free Press http://mankatofreepress.com/latestnews/x1692752295/Relay-for-Life-seeks-committed-research-subjects). The American Cancer Society is recruiting 500,000 volunteers for its Cancer Prevention Study 3. Cool - they plan on following up for 20 or 30 years - this cancer warrior will gladly sign up for that. Then I read the following:

"Participants must meet a few requirements. In addition to completing a short survey at the event, participants must be willing to complete periodic follow-up surveys. Also, they must never have been diagnosed with cancer (not including basal or squamous cell skin cancer)."

Ohhhh. They are aiming for the families and supporters of cancer survivors/patients that have died - the ones that have been diagnosed already need not apply. Kind of bloodthirsty, but makes sense (after all, the term "prevention" is in the study of the title). But how about using the Relays and Walkathons to recruit the 12 million or so of us that have been told we have cancer for one or more of the ongoing studies (like at the CDC http://www.cdc.gov/cancer/survivorship/what_cdc_is_doing/brfss.htm). Put me on the mailing list - not sure I would answer a phone survey cold, but if I knew questions were coming, I would be forthcoming.

And this goes out to ACCOI and ACCRF- I hear that there are reunions of ACC fighters coming up in the months ahead (you can see the 2010 gatherings here). I sure hope someone is passing around a survey or two to this focused group of people, to the ones that attend and those of us that cheer from the sidelines. We are such a small group, it would hardly make anyone's Excel software breathe hard to gather all of us in one file.

Sunday, July 03, 2011

If you or a loved one is newly diagnosed with Adenoid Cystic Carcinoma

I am glad that you found this blog, but so sorry that we have to meet under these conditions. There are links on the right side of the blog for more information on ACC, (also known by the acronym AdCC). If you are new to the topic and still under treatment, searching on the internet may not be the best action you can take at this time, since you need to concentrate on getting healed up and staying strong. Increasing your health literacy is very important.  Please contact your local library (could be a public or medical library) that serves consumer health information, and have them do information searches for you so you will have a focused collection of information to take to your health care professionals the next time you discuss your treatment options and long term outcome expectations. You can locate such a library in your area by going to this link at MedlinePlus:http://www.nlm.nih.gov/medlineplus/libraries.html

Since this is a rare condition, finding out others' unique experiences may not be the best method for you to plot your own treatment path - in other words, you shouldn't be looking up your own or your loved one's conditions on the internet at this time. Really. I used our Consumer Health Information Resource Service (CHIRS), and the librarians gave me the health information I needed at the time I needed it, and saved me from dwelling on individuals' stories, enabling me to concentrate on my own path without distraction. Of course, once I was out of active treatment, you can bet that I traveled the web and added my voice to encourage others on this path, and still do so.

If you happen to be facing head/neck radiation, some of my coping strategies are recorded at the beginning of this blog - click back to the Fall of 2006 and you will find the posts.
If you are a cancer survivor (I still haven't found a better term for those of us on the other side of initial treatment), I salute you, and look forward to learning from you.


No matter who you are or how you found this blog, I hope some of the information I have recorded here is useful to you in some fashion. And please let me know your story - I will share it with others that read this blog. 

Wishing the Monkees a great show tonight at Harrah's Stir Cove in Council Bluffs

I would love LOVE to be attending tonight, if anything to cheer on a fellow ACC warrior who has jumped back fully into his life (Peter Tork) - but it is not to be. I hope they have a better time of it on the banks of the flooded Missouri River than they did up in Minnesota (faced both a government shutdown AND a thunderstorm there). I imagine they will have a book's worth of stories by the time their tour is over this year. Cheering you all on from Peony Park neighborhood in Omaha, guys. Thank you for making the world a better place through your music and talents. And an aside to Mr. Tork - keep on keeping on. 
Let me know how great a time it was, ok?
 
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