Join Jeanne Sather and I in Omaha at Creighton!

If you are in Omaha, please come by the Creighton Health Sciences Library at 3:30pm and hear Jeanne, I, and Dr. Amy Haddad speak on "Writing as a Therapeutic Tool". Dr. Haddad is a poet, Jeanne is a journalist, and (of course) I am the librarian. It promises to be a great hour of idea sharing! I am really looking forward to it.

CNN's medical expert weighs in on Suzanne Somers' advice

I don't generally go to CNN for my health advice, and am not sure how many of my readers do, but I found this opinion piece from CNNhealth.com's Conditions expert, Dr. Otis Brawley, and wanted to share for your information.
http://www.cnn.com/2009/OPINION/10/24/commentary.brawley.cancer.treatment/index.html?eref=rss_latest
I am all for investigating with my health care provider any and all alternative and complementary treatments - note: WITH my health care provider. My radiation oncologist probably got real tired of my reporting each week what multivitamin I was taking, but I reported them along with the prescribed medications, just in case it made a difference (example: read in the oped piece about Vit. C interactions with HIV meds). And all during my initial treatment and recovery months, I felt attacked if someone came over and started forcing their (usually non-health care professional) opinion of how I should be or should not be treated. Suzanne Somers just did it more publicly than most. Just the other night, while taking asthmatic number one son to Urgent Care, a stranger in the waiting room walked over to me and thrust a card at me with a name of a 'natural supplement' that she cured her son's asthma with. Gee, let me look up the evidence on that product, and get right back to you.
If you are considering other treatments, and they are out there in all levels of 'good' and 'bad', please let your health care provider know about them, and ask for a search by a medical librarian on any testing that has been done previously or currently with the product/treatment. Scientific studies are being conducted on many alternative treatments, and you can find out if you qualify to be added to the patient group and how to participate - just ask. But as a librarian and a fellow cancer warrior, I recommend that you take any advice that comes from outside your cancer treatment team (meaning: in-laws, concerned adult children, the Internet sites, discussion lists, celebrities, anonymous emails asking for money for products, whatever) with a huge grain of salt, and run the advice by your cancer treatment team. Yes, if there had been any way I could have avoided the radiation and surgery by dancing outside in the moonlight naked, I would have, you betcha (sorry, neighbors). But when considering the evidence showing outcomes of treatment procedures, me and the team (picture them like the Justice League) figured that was the best route at the time. Someday, folks will look back at my treatment as barbaric, as they simply swallow a pill to change the genes of Adenoid Cystic Carcinoma, just as we look back at the practice of bleeding patients as barbaric.
Repeating: evaluate the source of the information you are considering. Whatever worked for Ms. Somers, I am happy for her and wish her well, but wonder at the same time why she is charging for her book if it is going to do so much good health-wise - why not just put it up on the web for free? We need to look at other information offered to us the same way - if a company/person is making money on the advice/product that they are proposing cures cancer with or without doctors, how does that skew the advice they are giving? Yes, that includes checking to see if your doctor is being paid by any of the pharmaceutical manufacturers or medical device manufacturers - a patient should ask, and consider any potential conflict of interest.

Bathroom is DONE!

Just need to install the towel racks, and buy one more rug to put in front of the shower. Dear husband and I put the last of the IKEA drawers and doors together tonight (catalog, p.202-203). The sink plumbing (water in and drain out) took about 12 visits to Lowes. We have another set up just like this for our upstairs bathroom, so we are now trained to install that one too - maybe for spring break? Anyway, it was great to make plans and see them come to completion - I doubt I will ever take that for granted again.

Adenoid Cystic Carcinoma in the news

Thanks so much to Korean Cuisine, here is press release on a story from the Proceedings of the National Academy of Sciences (PNAS):

New cancer gene discovered
http://www.physorg.com/news174662445.html

Says that they have determined that ACC is caused by a newly discovered fusion gene. From the press release:
"Now that we know what the cancer is down to, we can also develop new and more effective treatments for this often highly malignant and insidious form of cancer," says professor Göran Stenman, who heads the research group at the Lundberg Laboratory for Cancer Research at the Sahlgrenska Academy. "One possibility might be to develop a drug that quite simply turns off this gene."

I couldn't find the citation listed in PubMed yet - here is what the press release included:
Recurrent fusion of the MYB and NFIB transcription factor genes in carcinomas of the breast and head and neck; Marta Persson, Ywonne Andrén, Joachim Mark, Hugo M. Horlings, Fredrik Persson, Göran Stenman

How to read articles on health and healthcare

Dr. Alicia White wrote this article that was posted to the United Kingdom's National Health Service site this past January:

http://www.nhs.uk/news/pages/howtoreadarticlesabouthealthandhealthcare.aspx

from the article: "... you need to analyse the article to see what it says about the research it is reporting on. Bazian (the company I work for) has appraised hundreds of articles for Behind The Headlines on NHS Choices, and we’ve developed the following questions to help you figure out which articles you’re going to believe and which you’re not."

NIH is expanding the Rare Diseases Clinical Research Network

from a press release seen at http://www.medadnews.com/News/Index.cfm?articleid=656279
(here is the original press release from the NIH site: http://www.nih.gov/news/health/oct2009/od-05.htm )

It appears that we as Adenoid Cystic Carcinoma survivors may have a chance to directly participate in clinical data collection. Describing the second phase of the RDCRN: "In this second phase of the RDCRN, the University of South Florida will continue these data management efforts, under a new name and with a slightly different charge, as the Data Management Coordinating Center (DMCC). The DMCC will develop uniform investigative clinical research protocols for data collection in collaboration with the RDCRN Steering Committee, monitor protocol adherence, data collection and data submission, and work with the each consortium's Data and Safety Monitoring Boards to establish protocols for adverse events notification and reporting."

MD Anderson is one of the 19 consortia listed, and will be studying ACC and other rare salivary gland cancers:
"CONSORTIUM TITLE, INSTITUTION, AND PRINCIPAL INVESTIGATOR: Molecular and Epidemiologic Characterization of Salivary Gland Carcinomas - University of Texas M.D. Anderson Cancer Center - Adel K. El-Naggar, M.D., Ph.D.
NIH COLLABORATORS: ORDR, NIDCR
DISEASES TO BE STUDIED: Salivary gland carcinomas: mucoepidermoid carcinoma (MEC), adenoid cystic carcinoma (ACC), adenocarcinoma (ACC)"

The RDCRN has not updated their page that shows open studies since 1 August 2009: http://rarediseasesnetwork.epi.usf.edu/study-overview.htm. I will keep watch on their homepage to see if the new studies are listed: http://rarediseasesnetwork.epi.usf.edu/ , as well as watch for that new DMCC site to start up - that may be the site that offers information on the new studies. I will announce the arrival of such a website on this blog, you can guarantee it. I want every one of us counted (that the study will include) in any future studying that may be done. (Caveat - I just saw this announcement at NIDCR: http://www.nidcr.nih.gov/GrantsAndFunding/See_Funding_Opportunities_Sorted_By/ConceptClearance/CurrentCC/TumorBiorepository.htm, so the data Dr. El-Naggar may be seeking may be biospecimens, and not our personal data. If this is so, I am slightly frustrated - someone should be creating a patient repository of our information to see if there is any common denominators that lead scientists to see what brings on this kind of cancer.)

Dr. El-Naggar, the PI on salivary gland project, is also Editor-in-Chief of the BioMed Central journal, "Head & Neck Oncology" http://www.headandneckoncology.org/edboard/start.asp?id=725260, and is a heavy-duty researcher in the pathology world: http://www.ucl.ac.uk/hnods/Council/Adel_El_Naggar . Here is his faculty page at MD Anderson: http://faculty.mdanderson.org/Adel_El-Naggar/Default.asp?SNID=1060595112

Man, I hope Keas has a librarian or two

I just saw this story on the New York Times site: Adding Health Advice to Online Medical Records http://www.nytimes.com/2009/10/06/technology/06bosworth.html?_r=1 .

The reporter, Steve Lohr, says in the article:

"The long-term answer to improving the health of the nation’s population and curbing costs, experts agree, is to help people make smarter decisions day in and day out about their own health. And the most powerful potential tool in the march toward intelligent consumerism in health care may be the Web."

I completely agree. Speaking as a librarian that has delivered consumer health information (and used consumer health information to make my own decisions) now since 1992, my recommendation to Mr. Adam Bosworth, owner of Keas, Inc. (http://www.keas.com), is to hire a team of librarians to join up with the computer experts, and the result will be successful and life-changing to those that sign up for the service.

Still looking to the future strongly

It has been a year since the last big round of doctors and scans and the worry (that would not leave no matter how much I worked to make it go away) that the cancer had returned, all the while during the worst global economic meltdown of my lifetime - and I am still looking to the future. I have my last radiation oncology appointment next week - seems I am too boring for them to continue following (grin). Well, really, this is the natural progression of their care - the doctor won't want to see me again until late effects might arise from the radiation I received (in about 20 years, if I have anything to do with it). Throughout the last 3 years of healing after the cancer treatment, I have been working towards raising my head and looking outward, instead of inward, and I have arrived at that point. Heck, I am even considering what my next career step might be in academia-land - how fortunate is that? Yes, I still deal with aches/pains/lack of taste/cold intolerance, but hey, that's life, and I am dealing with it in style (I hope). I remain ready to help anyone locate information sources for their own treatment paths - I am still a librarian, thanks to that skilled surgeon that removed the skull lesion in time, and the original surgeon that removed the tumor from my cheek, and the health care professionals/family members/friends that never gave up on me and kept me from giving up on my own ability to overcome some major crud (and that includes readers of this blog of all flavors-you know who you are!). To all readers out there - if there has been anything in this blog of use to you as you travel your own individual path, I am glad and it makes it worth the work. Please always remember to discuss any self-care activities you might read that worked/didn't work for me with your own health care professionals - each of us is different, and our care is individualized, so the health care professionals need to know what we are doing in the self-care arena. Here's to many more years for us all.