Adenoid Cystic Carcinoma in the news

This April 21, 2012 article in the Wall Street Journal may require a login or subscription to view - check with your local library if the link doesn't work.
Title: Lab mistakes hobble cancer studies but scientists slow to take remedies
Reporter: Amy Dockser Marcus
Link: http://online.wsj.com/article/SB10001424052970204571404577257513760102538.html

A recent research project conducted and written up by Dr. Robert Mandic (University Hospital Giessen and Marburg, Germany) was discovered to not have been conducted on ACC, but cervical cancer cells, and had to be retracted at a loss of research support given by the ACCRF.

Turns out, cancer cell lines aren't always authenticated. In my humble opinion, being just a librarian and all, I would have figured that cell lines would be as closely watched as thoroughbred blood lines - the result is only as good as the dam and sire that begat it. Since I have a personal stake on horses running in this cancer-cure race (if scientists locate anything that offers a true treatment of ACC, I will get in line), I am shocked to find out that the scientists working so hard have been working blindly, not knowing for sure that they are growing ACC cells to test their treatment on. What the...? Heck, I think my cheek tumor is still in paraffin here in Omaha, and I know there are tumor banks brimming with samples around the nation, like that at the University of Virginia. I saw this company that sells cell culture products http://www.invitrogen.com/site/us/en/home/References/gibco-cell-culture-basics/cell-lines.html 
-even they advise not borrowing cultures from other labs. As shown in this research paper mentioned in the WSJ article, the supposed-ACC cells that scientists have worked on in the past are not only contaminated with other cancer cells, but some come from non-human sources: Genetic profiling reveals cross-contamination and misidentification of 6 adenoid cystic carcinoma cell lines: ACC2, ACC3, ACCM, ACCNS, ACCS and CAC2 http://www.ncbi.nlm.nih.gov/pubmed/19557180

My heart goes out to the scientists that are caught unawares and have to flush their research. I also send good wishes to ACCRF, for the funds that were raised by myself and others with or touched by ACC were spent without expected results. I have a cold shoulder for anyone that is not vetting their cell lines, though - again, the phrase that comes to mind: "What the ...?!"The scientists and the NIH, just like the Kentucky Derby, should require that cell lines are authenticated. Make sure you know the sire and dam before you enter that horse into my race for longer life, please. And for all of us paying attention to published research, please consider this another "caveat emptor"-buyer beware - for us to keep in mind.

Adenoid Cystic Carcinoma in the news

I saw this story about a GREAT fundraiser in Washington state:
School counselor sticks up for a cause
http://www.yakima-herald.com/stories/2012/04/27/school-counselor-sticks-up-for-a-cause

The photo says it all - John Kaluzny is stuck to the wall with duct tape. Students could donate to ACCRF, and get a foot of duct tape for every dollar donated. Mr. Kaluzny was diagnosed and treated for ACC in 2007, but it recently reappeared in his lymph nodes. I send good wishes to him and his wonderful family (his daughter helped organize this fundraiser for her senior project - go, Kaitlin!).

I will be watching for the next level to this fundraising effort: the school custodian, assistant principal, and principal will kiss a pig. Makes me want to send a check right now....
Congratulations to everyone at the McClure Elementary School - you certainly know how to show support and raise funds for this rare cancer!

Adenoid Cystic Carcinoma in the news

Today's stories have ACC meeting up with health care benefits. Two stories about Hans Bruns, a recently diagnosed ACC wearer, and his suit against Maine to reinstate his health benefits. The particulars of the story, and the comments on both of these news items, are worth reading.

From the Kennebec Journal: Patient sues state over MaineCare benefit cuts
http://www.kjonline.com/news/patient-sues-state-over-mainecarebenefit-cuts_2012-04-19.html

From the Bangor Daily News: Did the state violate the Constitution by kicking Aroostook County man off MaineCare?
http://bangordailynews.com/2012/04/19/news/state/did-dhhs-violate-constitution-by-kicking-aroostook-county-man-off-mainecare/

I would like to know where all of the cancer fund raising societies stand on cases like this - and Mr. Bruns is only one of many stories. If I do get to live 20 years with this cheeky condition, I will be in the medicare-level of care funding, which terrifies me.  What will I have as a financial backup if the state/federal/insurance/ACO folks decide that I am too ill to pay for my care then? (Just saw this JNCI 2010 letter, where it quotes another article that said "payers should not spend more" for a quality-adjusted life-year than $129,090.) I am already a no-code (don't give me CPR, not worth it at this point), and I am very realistic about no drug or treatment is out there that will rid this cancer, but there had better be plenty of morphine to reach for when the time comes, and a skilled person to give it to me. I will be watching to see how Mr. Bruns' case goes, as I imagine others on all levels will be.

Farewell to one of my supporters

I just learned that a college friend passed away on Sunday. Pat was probably the first one I talked out my fears with while waiting for scans to begin in 2006. She and I shared a conference motel room in Phoenix, and spent most of the dark hours at night sending nouns and verbs free. She was a year into her cancer treatment and recovery, and I was just beginning my path. Her no-nonsense demeanor and humor kept me company all the way through my first series of treatments and in the years since. I can only hope to be the friend she was to me.

The photo is of us in Boston, when I took my first trip on a plane after radiation in 2006.

Adenoid Cystic Carcinoma in the news

Recent stories about ACC and fellow ACC wearers, gathered from the Cheeky Librarian's Internet travels.

Best & Brightest: battle with cancer gives teen new focus
http://www.gazette.com/articles/best-137036--.html
-Story about Shane Leonard, Class of 2012 at Colorado Springs, diagnosed and treated for ACC in 2011. Go Shane! - sounds like you are heading for your future real good!

Patient to trek length of Thames for cancer charity
http://www.getreading.co.uk/news/s/2111764_patient_to_trek_length_of_thames_for_cancer_charity
-story about Stuart Gray, diagnosed with ACC in 2005 and having treatment for mets since, and his fundraising for the British charity Heads Up. Link to his fundraising site: http://www.justgiving.com/Stuart-Gray4
-another story about his upcoming 10 day walk:
http://www.maidenhead-advertiser.co.uk/News/Areas/Maidenhead/Father-who-battled-cancer-to-walk-the-Thames-to-raise-cash-for-charity-10042012.htm

Sharing a cancer story

I saw this personal cancer story on Boingboing.net:
A Season in Hell
http://boingboing.net/2012/04/12/hell.html

Even though my last cancer-related surgery was nearly 5 years ago, this story is still hard to read. I figure it is because he writes how I felt when going through it (and what I fear when considering future battles with a knife against the relentless cell invasion.)

The author says this in the comments, in case you know of any opportunities for him to visit and lecture:
"I'm working up a lecture version of this essay; any medical educators, narrative-medicine faculty, or doctors in teaching hospitals interested in hosting such a lecture should feel free to contact me via markdery AT markdery DOT com."