Monday, December 31, 2012

A Happy New Year to all of us

Ending a calendar and starting another. Pretty cool to be doing, actually. Very glad to be here, casting a shadow and still paying taxes. This year has seen so many of my friends leave due to cancer - my heart misses them daily. I imagine the year ahead will also bring loss, but I am making an official request that more good happens than loss for us all during 2013. And if anyone in the Great Power of the Universe job is listening, please toss in a few winning lottery tickets for some folks that I know will use the winnings wisely - I would appreciate it.

I wish you, dear reader, laughter most of all; lots of loving moments; and the ability to go outside at least once per day into the big, bright world. And I thank you for reading my story.

Jack Klugman, my hero

I learned of Jack Klugman's death on Christmas Eve, and remembered his TV characters (Odd Couple played often on our home TV, as did Quincy,MD). I didn't remember until I saw this Washington Post article that he probably extended thousands (if not millions) of lives through his work to support Orphan Drugs:
 http://www.washingtonpost.com/blogs/wonkblog/wp/2012/12/25/jack-klugmans-secret-lifesaving-legacy/

His influence and hard work changed the world.

If you are seeking an organization that continues this valuable work of fighting a rare disease, please consider donating to the Adenoid Cystic Carcinoma Research Foundation: http://www.accrf.org/.

Sunday, December 09, 2012

Adenoid cystic carcinoma in the news

1. I recently saw this news item from Windsor, Ontario, Canada:
Carpenters Aid Family
http://www.windsorstar.com/Carpenters+family/7563679/story.html
The Carpenters Local 494 heard there was a need, and now Alex Rocha has a wheelchair ramp at his house. Mr. Rocha, who was diagnosed with ACC in 2010, can now get in and out of his house easier, thanks to his community's support (which even included the local Home Depot).

2. Updated search on ACC in the Clinical Trials. Gov site:
http://clinicaltrials.gov/ct2/results?term=%22adenoid+cystic+carcinoma%22&Search=Search

Monday, November 05, 2012

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. Listen closely to your care team and work towards healing. Increase your health literacy-your understanding of the instructions and information that they give you.  Please contact your local library (it 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 if you want to share, please let me know your story - I will share it with others that read this blog. 


You may notice that the topics lately have been about me living life in my new normal, post-cancer. I trust that you too will be back to living life in the new normal after healing.

Friday, September 14, 2012

One more post about non-cancer websites

Thanks for the indulgence to link to something not directly about Adenoid Cystic Carcinoma. Here is the Wall of Websites that were started or improved by women taking part in the Startup Training School One K in 1 Day event: http://startuptrainingschool.com/wall-of-websites/

In case you ever wondered about the power of women using technology, this site should show you the evidence!

Sunday, September 09, 2012

Activities in my life - a new website!

There was one thing that cancer brought into my life that I hadn't experienced much before - not an increased love of life (I was already well-aware of how precious life is, as any military wife grows to realize), nor a new zest for physical activity (the head hurts when it bounces - 'nuf said) - it was making jewelry that made other people light up and smile when they looked at it and tried it on.
I have been making and selling it now for a couple of years through my company Teresa Hartman Designs - and have now made a website for it: http://teresahartmandesigns.com . (If the link doesn't work yet, it only got switched on today - evidently the servers have to chew on it awhile before moving it to the new address.)
It is a beginning that has taken place in a year full of endings of one sort or another, and I am so glad I took the chance and made it happen. It was due to the encouragement of the One K in 1 Day project, an online group of 1000 business women around the world that joined to get their websites onto the Internet. This was a one day event, but if you are interested in taking on something like this (and yes, you DO have the know-how to make it happen, especially with the support this group gives), check out the source company in Great Britain that led the group as it leads others to success - http://startuptrainingschool.com/

Friday, September 07, 2012

Adenoid Cystic Carcinoma Research Foundation has updated its website

You can check out its new website here: http://www.accrf.org/
They have reorganized the patient information, arranged information specific to researchers, and generally improved the site overall. Please consider this wonderful organization in your estate planning or annual gift list - 100% of the monies donated go towards Adenoid Cystic Carcinoma research.

They also offer a link to the partner organization that has a ACC support message board: ACCOI http://accoi.org/ . Their list is a Yahoo Group - sign up and see if it offers you information or even just a place to make comments that others facing or having faced similar situations can support you and/or your family members. (If you are a free Yahoo email user as I am, watch it that Yahoo doesn't turn off your account if you don't check in every so often - I lost all my previous messages that way, and only now have been renewing my contact with the group.)

Thanks to both ACCRF and ACCOI for the work they do on behalf of ACC wearers like me. This ACC wearer appreciates all the fights you take on to keep information and research flowing!


Monday, September 03, 2012

Finally, I am in fashion

I saw this post on the Fusion Beads blog (a really great bead store that I really must visit again soon!):
Pantone Fashion Trend Color Report Fall 2012
http://fusionbeadsblog.com/2012/08/31/pantone-fashion-trend-color-report-fall-2012/

Please note that one of the colors is Titanium. My temporal plate that was installed in 2007 is made of that material. I will interpret this cosmic coincidence as the Cheeky Librarian is now at the height of fashion as deemed by Pantone.

Ok, ok, maybe not - but as a jewelry maker, I am pretty excited to see this range of colors for the coming season.

Sunday, September 02, 2012

For those of us with rearranged ears or radiated necks: Comfy Earrings!

Since I no longer have spices or flavors to jazz up my days, bling pretty much has to pick up the slack. I love making and wearing (and sharing!) my necklaces that I make and sell through Teresa Hartman Designs (website coming real soon!). But earrings have just escaped me. When the surgeons went after the first tumor, my ear was removed and replaced closer to my head (gee, hope you aren't reading this during a meal...), and got even closer after the radiation took place.  Think Steven Colbert, only with a 50+ female face attached. I have not been able to wear post earrings since then, 6 years now, since the sharp point in the back hits my radiated neck and no amount of bling can overcome a day long pain in the neck. I gave my entire collection of jewelry to number one daughter (made her day, I can tell you!). I have stuck with hoops, especially those that have few pointy parts near my head, and basically really glad I still have an ear to hang something in.
I just learned about these earrings: Comfy Earrings http://comfyearrings.com/
The owner says on her site that she merged the best things about regular earrings and body jewelry (yep, I too have noted that body jewelry has smoother backs for more comfortable wearing). Give it a look-see. These might fit your needs.

Friday, August 24, 2012

"[cancer] The medical and life logistics of treatment"

Having cancer is hard work - for patients, survivors, supporters, caregivers, everyone.

Sharing a link to this very informative post with permission from the author, Jay Lake:
http://www.jlake.com/2012/08/22/cancer-the-medical-and-life-logistics-of-treatment/

In the post, Mr. Lake shares a list of the logistics he is dealing with as a State IV colon cancer patient, newly diagnosed with his 3rd metastasis. Please take a look at that list - if you or someone near you is facing cancer, that list gives you a chance to see where you might be able to help, or at the very least, acknowledge their path.

This librarian is grateful for permission to share Mr. Lake's post. I already knew of Mr. Lake through his excellent writing (science fiction and fantasy - please, check out his bibliography and read his work!).

Sunday, August 19, 2012

Congratulations to the UAE on starting up their cancer registry again

I saw this in the news: Cancer registry new weapon in war against UAE's third biggest killer
http://www.thenational.ae/news/uae-news/health/cancer-registry-new-weapon-in-war-against-uaes-third-biggest-killer

The Ministry of Health is starting up a national cancer registry again, after a previous attempt in 1998 lost national coverage in 2001 (it still exists, just covers a smaller area). A quote from Dr. Anwar Al Hammadi explains why a national registry is so important:

"The ministry, HAAD and the DHA can work together to make this happen," he said. "There are so many forms of specialised treatment, including non-surgical measures.
"A registry would allow us to note the trend, track the patients and treat them accordingly. It's absolutely necessary."
Here in the US, we don't have a national registry. We have a National Program of Cancer Registries http://www.cdc.gov/cancer/npcr/, which supports local, state, and territory registries. You can go to their map and click on your state to be able to see cancer incidence data: http://apps.nccd.cdc.gov/dcpc_Programs/default.aspx?NPID=3
Here is the Nebraska page, just for example: http://apps.nccd.cdc.gov/dcpc_Programs/default.aspx?NPID=3&PID=167
We also have some population-based cancer registries that feed data to SEER: Surveillance Epidemiology and End Results http://seer.cancer.gov/registries/list.html . 
In case you want to know more about becoming a cancer registrar, or wonder what they do in their career: http://www.ncra-usa.org/i4a/pages/index.cfm?pageid=1
Other information on cancer registries - let me know if you find other sources:
Australasian Association of Cancer Registries (the association's link was down -I located this page covering information) http://www.spacetimeresearch.com/australasian-association-of-cancer-registries.html
CancerMondail (worldwide) http://www-dep.iarc.fr/
Global Initiative for Cancer Registry Development in Low- and Middle-Income Countries http://gicr.iarc.fr/index.php?page=home&lang=1&item_id=1
National Cancer Registry Programme (India) http://www.ncrpindia.org/Cancer_Atlas_India/index.aspx
North American Association of Central Cancer Registries http://www.naaccr.org/

Saturday, August 18, 2012

Coming up September 8th: 6th Annual Attack ACC Family Fun Run/Walk

I saw this in the Chicago Sun-Times Southtown Star:
http://southtownstar.suntimes.com/lifestyles/14463584-423/charity-briefs-for-aug-14.html

Walking for a cure: The Sixth Annual Attack ACC Family Fun Run/Walk, which raises money for research of adenoid cystic carcinoma — a rare form of cancer — is scheduled for 9 a.m. Sept. 8 at the Hickory Creek Junction Forest Preserve, on U.S. 30 about one mile west of Wolf Road near New Lenox. Doctors told the family of Alicia Almanza, of Mokena, a 20-year survivor of ACC, that ACC is so rare that there is minimal research in the works. Alicia’s daughter, Courtney, believes that her mother should have the same shot at a cure as those with other cancers, and helped create the nonprofit Attack ACC. Proceeds will be sent to the University of Virginia Comprehensive Cancer Center, one of few U.S. cancer centers that does research on ACC. For more information, visit www.attackacc.org.

If you get the chance to join this fundraiser, do it! They have the best times there! One of them is the Survivor Meet & Greet, where you will have the chance to meet others facing the challenges after an Adenoid Cystic Carcinoma diagnosis. From the Attack ACC site:

Date: Friday, September 07, 2012  
Time: 6:00 PM - 9:00 PM Attack ACC Meet & Greet

Please RSVP ASAP. We will be serving pizza and refreshments. Survivors and family are welcome to come and join us! We would love to see you come out and join us!

Location:
Parkview Christian Church
11100 Orland Parkway
Orland Park, IL 60467
708 478-7477 / 708 478-5686

Parkview Christian Church is located on the corner of 183rd St and Wolf Rd (Approx. 112th Ave West)
Feel free to contact us for any clarification of directions or any other concerns! 

Saturday, August 11, 2012

I am proud to be one of Dan's 120

Hard to write this, and I don't know if I knew of it before (how did I miss it?!?) - Dan Dube' died May 3 of this year. He was the first of only 2 people I have met in person with adenoid cystic carcinoma, and I truly enjoyed our visit in person and later via email. A wonderful tribute to him is on the ACCRF site: http://www.accrf.org/dan-dube/ . Adenoid Cystic Carcinoma Organization International also has a memorial to him: http://accoi.org/news/index.php?nid=75

Here is the post and a photo of Dan and I in 2008, when we first met. I am honored to be among the folks that he helped, and I sure hope I carry on his legacy. Thanks to all who offer support to those of us wearing this particular cancer. Everything helps.

Sunday, August 05, 2012

What sidetracks you from thinking about your adenoid cystic carcinoma?

As I delve deeper into the planning and the execution of plans for the beginning of the year events at our university of medicine, I notice that I can go days at a time without thinking of ACC or when it might come back - until I get that twinge in my neck or cheek that serves as a reminder of previous battles with the critter. I am very interested in learning how you keep your mind away from dwelling about this 'insidious' cancer - please share in the comments.

Monday, July 30, 2012

Adenoid cystic carcinoma in the news

Excellent news received about a book written to help children understand cancer - second story on this page (read the first story as well - apoptosis is what we are all striving for daily) -
http://www.jpost.com/Health/Article.aspx?id=279262
"Explaining Cancer to Kids"
A young woman in Israel,  Sivan Rosen Geta, was diagnosed with adenoid cystic carcinoma, then went on to become a mother. Not finding suitable resources available, she wrote and illustrated a book to help her own daughter understand about her momma's cancer. Her book has now been translated into English: "Cancer, and not the Zodiac Crab".

Her site for the book (in Hebrew): http://www.sivanrg.com . You can order the English or Hebrew version of the book on this page of her site: http://www.sivanrg.com/Order.aspx . The drop-down choice at the bottom center of the page - click on it, choose "english" if that is the version you are ordering, and the yellow button will take you to PayPal to complete your order.

Friday, July 13, 2012

Another news story about adenoid cancer cell mixup in research

From the public television KQED's QUEST website:
The Great Cancer Cell Mix Up
http://science.kqed.org/quest/audio/the-great-cancer-cell-mix-up/?utm_source=rss&utm_medium=rss&utm_campaign=the-great-cancer-cell-mix-up

A story about the mix up experienced by California scientists working on adenoid cystic carcinoma cell lines, only to find out that they had been working with cervical cancer cells and non-human cells.
I wrote about the lost research due to mis-identified cell lines earlier on the Cheeky Librarian blog:
http://cheekylibrarian.blogspot.com/2012/04/adenoid-cystic-carcinoma-in-news_30.html

The NIH Catalyst has this article from 2008 on mis-identification of cell lines: http://www.nih.gov/catalyst/2008/08.03.01/page2.html 

and here is a link to a citation in PubMed:
Cell line misidentification - the beginning of the end
http://www.ncbi.nlm.nih.gov/pubmed?term=20448633

I am pretty sure that the scientific community can start to follow the standards set by the thoroughbred racing community, and begin creating, recording, and asking for documented facts on the source of the cell lines they are culturing and/or purchasing. Some records would be better than no records, especially if it means they will be comparing apples to apples in their future research. Since I am on the outside of the scientific world, but wear the cancer they are studying, I have a horse in this particular race, and it is one I hope that my horse won't win before their correct research helps me put the hobbles on him. I am hereby offering my cells for culture - I can prove the dam, sire, and breeding site and conditions, folks. Just contact me in the comments, and we can work up a deal that will keep the mice and cervical cancer cells out of your lab.

Monday, July 09, 2012

FDA Safety and Innovation Act

I saw this mentioned on the BIOtechNOW site today - an op-ed piece by the President and CEO of NORD, Peter L. Saltonstall:
http://www.biotech-now.org/health/2012/07/fda-safety-and-innovation-act-a-monumental-step-forward-for-patients-with-rare-diseases

I am not sure how this will take action at the individual level - after all, no one has ever asked me for my Rare Disease card, so I am not sure how they are qualifying the population that is supposed to be included in treatment. However, if the work of NORD resulted in the FDA making funding available for rare disease research, they have my vote of thanks. Now, if that FDA support transfers to the actual drug and medical device manufacturers, then I will be cheering us all on. Maybe I can apply to be a trainer for the "enhanced staff training for FDA reviewers with regard to orphan product reviews", or become a virtual librarian as a member of the "increased staffing and expansion of the Rare Disease Program in CDER and CBER".

Other news covering this passed act:

FDA safety and innovation act is passed in Deleware: http://www.communitypub.com/news/x537695762/FDA-safety-and-innovation-act-is-passed-in-Delaware

FDA safety and innovation act signed (NORD press release)
http://www.marketwatch.com/story/fda-safety-and-innovation-act-signed-a-monumental-step-toward-the-development-of-safe-and-effective-treatments-for-millions-of-americans-with-rare-diseases-2012-07-09


San Diego-based West Wireless Health Institute, BIOCOM, and CONNECT applaud President Obama signing FDA User Fee Bill into law http://www.marketwatch.com/story/san-diego-based-west-wireless-health-institute-biocom-and-connect-applaud-president-obama-signing-fda-user-fee-bill-into-law-2012-07-09

Pew Commends US Congress for Passing FDA User Fee Legislation (press release predates today's presidential signing) http://www.marketwatch.com/story/pew-commends-us-congress-for-passing-fda-user-fee-legislation-2012-06-26

FDA gets device, but not drug tracking
http://www.fiercepharmamanufacturing.com/story/fda-gets-device-not-drug-tracking/2012-07-05

Saturday, June 30, 2012

6 year anniversary since being diagnosed

6 years ago tonight, dear husband and I along with number one son and number one daughter were watching Queen Latifah in "The Last Holiday". We were still reeling with the news they had given me earlier in the day, that the tumor they had removed on June 22nd was adenoid cystic carcinoma. We had chosen the dvd before going to the dr., but the irony of the movie's topic wasn't lost on me, no matter what news I had been given. I kept telling the kids and husband that I was different than the lead character - I hadn't put anything off in life, so I didn't have any regrets. Well, let me tell you today, I still don't. I am so very glad I have had the past 6 years, and looking forward to another set (and yeah, I am greedy, probably two more sets after that!). Who knows what the next 6 years will bring, but the last were pretty fantastic. Thanks to all who read this for your support, for putting up with me when I was hard to put up with, for joining me in the optimism of the new day, and for just listening when I needed to say stuff or told really really bad jokes to get on the other side of difficult moments. I won't ever say that cancer was the best thing that happened to me - I considered life precious before that bump in the road. But I am very glad that I have had the last 6 years to let those around me know how precious you are to me.

Saturday, June 16, 2012

Announcement of "Partnership WITH Patients" conference this September

I just learned of this conference that is still in the planning stages, aiming to take place in September 21-23, 2012 in Kansas City. I am thinking this would be a WONDERFUL place to join up as patient advocates for Adenoid Cystic Carcinoma, if you can get to Kansas City in September.
Here is a blog post about it at e-patients.net, dated June 14th:
Regina Holliday announces "Partnership WITH Patients" conference
http://e-patients.net/archives/2012/06/regina-holliday-announces-partnership-with-patients-conference.html

and the original post on the Regina Holliday's Medical Advocacy Blog:
Cinderblocks and Patient Summits
http://reginaholliday.blogspot.com/2012/06/cinder-blocks-and-patient-summits.html

The location of the conference will be Cerner's continuing educational facility on the Riverfront. Back in the 90's when I worked for the University of Missouri-Columbia, I knew a team from Cerner that was working on creating the UMC electronic patient record. The company does a lot, based on their events page. Here is a quote from Ms. Holliday's post about what she sees when she looks at Cerner today:
When I look at Cerner I don’t see an old legacy EMR system.  I see a future cloud/ legacy composite that could save lives.  I see one company among many, many companies willing to collaborate with patients.  I see what amazing things we can accomplish if we all work together and shoulder this task.  I see a space where we can come together and educate patient speakers about HIT, patient safety and health policy.  I see the potential of helping 200 new patients advocates as the next generation of e-Patient Dave’s, Trisha Torrey’s and Regina Holliday’s.

Thursday, June 14, 2012

Adenoid Cystic Carcinoma in the news

The wonderful foundation, ACCRF, is featured in this video posted today on Vimeo: http://vimeo.com/44057727

I admire what the Kaufman family has achieved, and add my voice to the audience out here that is benefitting from the research they have helped begin over the past 5 years. Thank you for all you have accomplished, ACCRF founders, staff, supporters, researchers - this Cheeky Librarian is very grateful!

Wednesday, June 13, 2012

The future of health care is in good hands

I met for two hours today with 80 sharp, energetic, and driven SMDEP students, and I can confidently report that we will be in great hands when they become our professional health caregivers. Here's to the next generation. May they enjoy learning from us as their patients.  [Edit on 6/18/12 - check out their activities on this great blog: http://smdepunmc.weebly.com/ -th ]

Newly located support resources for adenoid cystic carcinoma

I received word about ACC being mentioned on the American Cancer Society support forums. Here is one link, in case you want to join the conversation: http://csn.cancer.org/node/241633


Also, I located ACC mentioned on the Cancer.net site - I am linking the printer-friendly version here for easy reading. There are really great questions to ask your doctor at the end of the entry:
http://www.cancer.net/patient/Cancer+Types/Adenoid+Cystic+Carcinoma/ci.Adenoid+Cystic+Carcinoma.printer
I am pretty much "pro" for this site, but "con" on the fact that they only list head/neck areas that catch ACC. Pretty sure from my readers and from those that I follow on the web - primary ACC can exist in just about any secretory gland area, as well as cutaneous (skin).

Saturday, June 09, 2012

Adenoid Cystic Carcinoma in the news

Sad news received today. Sandra Baer, long-time ACC fighter, passed away on Wednesday. Her obituary: http://www.legacy.com/obituaries/bostonglobe/obituary.aspx?n=sandra-a-baer&pid=157956235&fhid=8784

She worked as the Director of Disability Services at Tufts University. Here is a link to their note outlining her great accomplishments in her position, and about her leaving her position to care for her health.

Her interview in this 2010 student newspaper story shows her high level of care about what students face: http://www.tuftsdaily.com/life-on-the-hill-comes-with-extra-challenges-for-students-with-physical-disabilities-1.2417799#.T9N77ZlYuZY

I never had the good fortune to meet Ms. Baer, but I know she touched many, many lives, and did not allow the diagnosis of ACC stop her from living. Because of that, I share her story as an inspiration to myself and others fighting ACC or supporting their loved ones who are fighting it. I send my sympathies to her family, and to the Tufts family for their loss. I only hope that I can reach and positively influence half as many lives as Ms. Baer did.

Friday, June 08, 2012

Adenoid Cystic Carcinoma in the news

I learned of Donna Bush today - she is a 23 year survivor of ACC (yay Donna!), and was interviewed as she participated in her local Relay for Life. The story by Russell Blair of the Meriden, CT Record-Journal:
Meriden-Wallingford Relay for Life Kicks Off At Lyman Hall
http://www.myrecordjournal.com/local/article_de714396-b1e6-11e1-ab82-0019bb2963f4.html

Thursday, June 07, 2012

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. Listen closely to your care team and work towards healing. Increase your health literacy-your understanding of the instructions and information that they give you.  Please contact your local library (it 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 if you want to share, please let me know your story - I will share it with others that read this blog. 

Monday, June 04, 2012

Adenoid cystic carcinoma in the news

News from the ASCO annual meeting:
http://www.marketwatch.com/story/oncomed-presents-first-in-human-phase-i-data-on-anti-notch23-antibody-at-asco-2012-06-02
Findings from the study going on at the START Center for Cancer Care were presented at the Annual Meeting of the American Society for Clinical Oncology (ASCO).  Title of the poster:
"A First-in-Human Phase I Study to Evaluate the Fully Human Monoclonal Antibody OMP-59R5 (anti-Notch2/3) Administered Intravenously to Patients with Advanced Solid Tumors,"
This was the first in-human application of the drug - a Phase 1 study. They have 30 patients enrolled, and report that there is evidence that the "Notch pathway" is being modulated. "The Notch pathway plays a central role in embryonic development, the regulation of stem and progenitor cells, and is implicated centrally in many human cancers." Also from the press release: "Several patients had prolonged stable disease for greater-than or equal to 56 days (tumor types included Kaposi's Sarcoma, adenoid cystic carcinoma, rectal cancer, and liposarcoma)." 
I believe this is the clinical trial entry - they are still recruiting: http://clinicaltrials.gov/ct2/show/NCT01277146?term=OMP-59R5&rank=1 . I saw that one of the exclusions is "subjects with known HIV infection", which gave me pause, since one of the tumors mentioned is Kaposi's Sarcoma - but if you check here, you will see that HIV is not the only cause of KS.

One of the recipients of this drug may have been mentioned in an earlier news story on this blog: http://cheekylibrarian.blogspot.com/2011/04/adenoid-cystic-carcinoma-in-news.html . I emphasize the "may" - the earlier news item didn't name the treatment protocol given. 

Please remember that this finding does not signal our cure, nor even if there is an alternative towards managing ACC. This was a Phase 1 trial - to understand clinical trials and their types and phases, please check out this site: http://clinicaltrials.gov/ct2/info/understand.

Tuesday, May 29, 2012

Ok folks - where is our ACC virtual patient registry?

Time to act is now. I saw this story at NPR:
Patients find each other online to jump-start medical research
http://www.npr.org/blogs/health/2012/05/28/153706146/patients-find-each-other-online-to-jump-start-medical-research?ps=sh_sthdl

Has there been an ACC virtual patient registry and I missed it? Slept through it? Quick - tell me where I can sign up!

Monday, May 28, 2012

Our grieving doctors

Memorial Day primarily recognizes the ultimate sacrifice given by our soldiers - and as a retired military wife, I have seen a slice of what that sacrifice really means, and I honor every one of them and their families on this sacred day.
But when I was growing up, we called this 'decoration day', and went to the graves of our ancestors to pay our respects. I can remember seeing the adults' faces as they would discuss the departed's final days, or share funny stories, and I am sure, contemplated the day when we would be talking the same way over their graves. I learned a lot about how life and death were faced by my elders, and probably picked up most of my strong feelings about my own story's end from those times.
I now work in a medical center, where dying and living pass in the hallway every minute of every day. I am cared for by excellent health science professionals and students, who I hope know that they did a great day's work by removing my cancers and following me as I traveled back to wellness.  I teach graduate health career students on how to locate information and the evidence they need to add to their knowledge as they go about gaining skills to cure and relieve pain and suffering. 


The Assertive Cancer Patient posted a link to a New York Times article on this topic:
http://assertivecancerpatient.com/2012/05/grieving-doctors.html


I haven't had much exposure in the last 12 years on how these students are prepared for the loss of their patients. I don't want them seeing the loss of my life as a failure, but as a natural progression, since as we all know how life has an ending. I understand that health science students are heading for the best grades and every successful milestone they can record as they work so very hard towards their goal of the specialty they seek. But I would find it more useful at this point in my life to know as a patient what their score was on a course of palliative care,  or  the "good death" seminar,  or their beliefs on the limits of science and my quality of life, than what they scored on a microbiology final (yes, that is important too, but I am trying to make a point here.)  In my opinion, some things, birth and death included, are handled better by the art of medicine than the science of managed medical care. I hope my caregivers are keeping my wishes in mind when they come up with treatment plans, that's all. 

Friday, May 18, 2012

An interesting post

For those of you that know about my connection with the head/neck team at UNMC, here is a recent story by Kalani Simpson, UNMC Public Relations, for your information:


DR. LYDIATT'S 'APE-TYPICAL' FOLLOW-UP VISIT


http://app1.unmc.edu/PublicAffairs/TodaySite/sitefiles/today_full.cfm?match=9437


Saturday, May 12, 2012

Adenoid cystic carcinoma in the news

A couple of stories seen recently. 
Bill Ellis of Novato, California, has been chosen to fire the starting gun tomorrow morning for the Tour of California bicycle race, according to this story by Will Jason of the Marin Independent Journal: http://www.marinij.com/novato/ci_20604339/novato-cyclist-cancer-survivor-fire-opening-gun-at
He was a long-distance endurance rider at the time of his ACC diagnosis and treatment. The article is a good one - even describes a little about what he goes through daily as a head/neck cancer survivor.
Cheering you on from fly-over land, Mr. Ellis, along with the 35k people that are expected to hear that gun go off tomorrow morning. And I agree with your last quote in the article: "I'd never say never."
I also saw this by Bob Padecky at The Press Democrat about Mr. Ellis - it covers more of his story: http://www.pressdemocrat.com/article/20120510/NEWS/120519936/1062/SPORTS0905?Title=Start-of-Sunday-s-race-will-start-with-thank-you-
I am going to be watching the televised coverage to see you in your moment of glory, cheering you on like the rest of your fans!
---------
I saw this on the web - not sure if a news story took me to it, but if it did, thanks to the reporter that shared it. The University of Tennessee Graduate School of Medicine is the recipient of a memorial for Kelly L. Krahwinkel. Mrs. Krahwinkel was diagnosed with ACC in 2007, went through treatment but passed away 13 months later. U. of Tennessee has created an endowed chair, and continues to accept memorial donations to support this permanent legacy. A touching introduction to Mr. Krahwinkel by her oral surgeon, Dr. Eric R. Carlson, can be found at the endowment website: http://gsm.utmck.edu/oral_surg/endowment.cfm . Dr. Carlson goes on to give a bit of insight into why our caregivers begin and continue their hard work, and choose each day to walk the hard road of cancer with us: 
"Providing cancer surgery to patients brings great personal fulfillment to me and my colleagues.  It is an honor that our skills present the opportunity to assist patients in their struggle against their cancer, to educate residents and fellows, and to make clinically relevant observations during therapy that will help future patients. "


As a recipient of much skill and care by the expert health care providers and excellent students at the University of Nebraska Medical Center, I applaud U. of Tennessee in creating and maintaining this memorial. May Kelly's memory live on long into the future, and all the best to the research that benefits from her family's donation.
-------------
A wonderful story from KARE (Channel 11) about Gabriele Anderson, track star and graduate of University of Minnesota and heading for Olympic trials in Oregon this June. I have linked to her story before - she was diagnosed with ACC, then thyroid cancer, and has worked very hard to come back after each setback. Keep on keeping on, Ms. Anderson - you truly are a positive model! (And let me know if you ever figure out a way to bottle your energy - I know some mid-lifers that would pay a pretty penny for a teaspoon of it!)


---------------
Thieme Publishers has announced that a second edition of "Chest Imaging Case Atlas" has been published for radiologists. Among the cases included in this education reference: Adenoid Cystic Carcinoma. For those of us that will benefit from all of this education, thank you. And as a medical librarian, I am thrilled to see it offered as an e-book through Amazon, Barnes&Noble, and iTunes!

Wednesday, May 02, 2012

Spring travels

If you thought you saw a Cheekymobile last week anywhere near I-70, I-29, I-435, 69 highway, or 50 highway, you might be right. The annual trip took place, this time in the great state of Kansas. I can recommend Overland Park, KS, as a premier vacation destination! My mom and I spent our way across town, seeing great theater and enjoying the best pies in the world at The Pie Bakery (who also has the coolest url in the world:
http://mmm-pie.com/). I also visited best friends in the Kincaid, KS area on may way back to Omaha. We are already discussing next year's travel possibilities!

Monday, April 30, 2012

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.

Saturday, April 28, 2012

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!

Friday, April 20, 2012

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.

Tuesday, April 17, 2012

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



Sunday, April 15, 2012

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."

Friday, March 30, 2012

Spring is all around

Sending good wishes to all readers, and hopes that spring is being good to you. Things here are ok - some ups, some downs. I get up and head to work, happy that I have a great job and work with good people. I check my digital connections and see that I have many wonderful friends. And I was able to be present to watch an historic NCAA game here in Omaha (Norfolk over Missouri - both teams gave it their all).

In addition to having the wonderful game to look forward to (thanks to the generosity of my great mentor!),  I joined the club of new Lytro camera owners! (Last year, the highlight of my spring was winning The Box from http://boingboing.net - this year, it was waiting for the arrival of a brand new Lytro). You can see my first efforts on my picture gallery site: https://pictures.lytro.com/bibliotek . The cool thing about the photos (if I have taken them right) - you can click within the picture and refocus the photo on different parts. Try it with the library dinosaurs.

Another cool activity - my library is taking part in a discovery project to see how iPads can be used to add productivity and information resources to health professionals and students. There are a lot of health science librarians taking part - if you are near a medical facility that has a librarian in NE, KS, MO, UT, CO, WY, there just may be a shiny new iPad being worked over. We librarians are a demanding bunch, believe me - substance and results trump style every time.

I have been touching base with some fellow ACC-wearers, either by direct email or through their blogs or Caring Bridge sites. If you know of anyone that wants their story highlighted here, please get them my blog address and ask them to comment. I would love to share their story.

Some other things have gone on that I will post later.

Monday, March 12, 2012

Just heard - Christopher Lyles died March 5th

My deepest sympathy goes to Mr. Lyles' family for their loss. He was a true explorer as the second person in the world to receive a synthetic trachea. Here is the obituary I saw today, from  The Baltimore Sun:  
Christopher Lyles, Defense engineer
 http://www.baltimoresun.com/news/obituaries/bs-md-ob-christopher-lyles-20120309,0,7288440.story

I will forever be in the shadow of this great man. His sister says it all: "He put his life on the line so other people can live longer," his older sister, Erica Greene, said of the risk the surgery presented. "In the future there will be tracheal transplants [in the U.S]. But someone had to be the first do it."

More about what Mr. Lyles did, as covered by the media and linked through some of my earlier posts:
http://cheekylibrarian.blogspot.com/search?q=lyles





Saturday, March 10, 2012

Cancer in the news

Thanks to BoingBoing (http://boingboing.net), I saw this story yesterday:

Cancer is even more complicated than we thought
http://boingboing.net/2012/03/09/cancer-is-even-more-complicate.html

quote from the story: "Scientists have long known that the same type of cancer can play out in very different ways, from a genetic perspective, in one patient compared to another. But this new research shows that, even within the same patient—even within the same tumor—different samples of cancer cells have more genetic differences than they have similarities."

As a person with Adenoid Cystic Carcinoma, I figured on this all the time, but find it interesting that they say all cancers are more complicated. When we who are ACC-wearers check in with each other, we often find very different stories about how things (treatment side-effects, progression or regression of the cancer, etc.) are experienced. I bet if we had 200 of us rare cancer wearers together, very little would be in common outside of the biggies of us all having cancer invade our persons and our lives, and living through 'the valley of the shadow' of treatment and healing. Our doctors (gp's, oncologists, surgeons, take your pick) are basically bookies (well-meaning, excellently trained, caring), trying to outguess where or even if the cancer is coming back (pretty much with ACC, they agree that the "when" is a given, if we live long enough otherwise). So far, I am keeping my bookies poor - their bets haven't been successful, and I am still casting a shadow and paying taxes, while dodging expensive tracking procedures that haven't been proven to lengthen my lifespan.

Wednesday, February 29, 2012

Adenoid cystic carcinoma in the news

First - I saw this story from Staffordshire (UK): Survivor takes up charity challenge after beating rare cancer: http://www.thisisstaffordshire.co.uk/Survivor-takes-charity-challenge-beating-rare/story-15342320-detail/story.html

Bernie Webbe, mom of two young children, is going to raise money for Macmillan Cancer Support to help others suffering for cancer. And she isn't doing it close to home - she is going to take 10 days in May to walk across Peru! You can make donations on her site (today's figures show she is over half-way to her goal of 4000 British Pounds): http://www.justgiving.com/Bernie-Webbe

Congratulations to Mrs. Webbe and her strong family that has supported her through ACC treatment twice. Bernie, you are an amazing person to undertake this challenge - go for it! This Cheeky Librarian (that wears her scars on the other side of her head) will be cheering you on, thanking you for bravely taking every step of the way!

Second - the Bascom Palmer Eye Institute (BPEI) celebrated its 50th anniversary by hosting a scientific meeting. http://www.modernmedicine.com/modernmedicine/ModernMedicine+Now/BPEI-marks-anniversary-with-meeting/ArticleStandard/Article/detail/762191?contextCategoryId=40139
Among all the research shared:
"Results of a recent study of 19 patients with adenoid cystic carcinoma of the lacrimal gland treated via a novel approach called intra-arterial cytoreductive chemotherapy demonstrated survival rates of 94% at both 5- and 10-year follow-up, compared with 43% and 29%, respectively, for patients with conditions managed by conventional therapies. Two of the patients have had more than 15 years of disease-free survival, one of them for 22 years. "

Thursday, February 23, 2012

Adenoid Cystic Carcinoma in the News

Located this news item from February 4, 2012: Former Mason City [IA] woman has college surgical unit named in her honor http://globegazette.com/news/local/former-mason-city-woman-has-college-surgical-unit-named-in/article_0d620802-4ef5-11e1-9839-0019bb2963f4.html . From what I have found and read on Ms. Gonzalez, she was a true inspiration.

Sherry (Brant) Gonzalez died from ACC last March 22nd. The Miller-Motte Technical College named their new surgical technology suite after her on January 27, 2012, honoring the way that she "continued to change futures and lives when she helped her fellow students and also when she was an instructor..."-quote from another article: http://www.clarksvilleonline.com/2012/01/25/miller-motte-technical-college-to-hold-ribbon-cutting-for-surgical-technology-suites-new-name-and-new-equipment/

And a third article, showing a photo of the suite: http://www.theleafchronicle.com/article/20120131/BUSINESS/301310046/Miller-Motte-surgical-unit-in-Clarksville-renamed

I learned about Sherry Brant Gonzalez through her father's obituary of January 27, 2012, which includes a request for memorial contributions to ACCRF:  http://www.thestarpress.com/article/20120128/OBITUARIES/201280326 .

I send my sympathy to the family for their great loss. And I recognize that Mason City has lost not one but two shining lights.

Wednesday, February 22, 2012

Adenoid Cystic Carcinoma in the News

Gerald Babao's story is told in today's South Charlotte News/The Charlotte Observer, from south Charlotte, North Carolina: Fighting rare cancer with extreme exercise
http://www.charlotteobserver.com/2012/02/22/3022022/fighting-rare-cancer-with-extreme.html

I really like what he says right off the top: "I can't control the fact that I have adenoid cystic carcinoma." He then goes on to say, "The only thing I can control is making sure that I'm as healthy as I can be and living an active lifestyle."

His quote at the end of the article,  "All I can do is be as healthy as I can and perhaps prolong the cancer from coming back and metastasizing. In the meantime, I'm not sitting around waiting. I plan to continue to be active and push myself to be as healthy and active as I can be."

Read more here: http://www.charlotteobserver.com/2012/02/22/3022022/fighting-rare-cancer-with-extreme.html#storylink=cpy


Go, Gerald, go! And I send cheers along for his family, who are supporting this great fund-raising Ironman.

Monday, February 13, 2012

Fellow ACC-wearer shares his story

Adam Spady, the only other Nebraskan I know that has ACC (another one was in our group, but she has moved east), gave me permission to post his comments here that he put on one of my earlier posts. I really appreciate fellow ACC-wearers sharing their stories - since ours is such an individual and rare cancer, we can't really use others' paths to predict where our own will go, but somehow knowing what others have done or are doing gives comfort. Plus, we might find alternative care paths or coping methods that might fit our own needs. As a medical librarian, I have to repeat: I urge anyone reading anything on this blog that I or others have shared to first discuss with their health care provider before stopping or starting any treatment. Now, the next words you read will be from Adam (I will add his contact information here if he gives me permission - otherwise, just post a comment and he will see it) -thank you for sharing, Adam!:


Hi Teri, this is Adam Spady. Thank you for the nice post on my caringbridge site the other day, I appreciate it:) I believe you had posted on my site last yr, but I think I was down in Mexico at the time doing treatments and I forgot to reply to your post when I got home. Anyhow, I didn't read your whole blog but I was just curious what type of radiation you had? And I think I saw you had surgery initially? Any chemo? I was just curious b/c I'm doing alt treatments now through a hospital in Tijuana, Mexico called Oasis of Hope after going through the whole cut/burn/poison i.e. surgery/radiation/chemo here in the US.
Initially, I had fast-neutron radiation (the most nasty type there is I believe) back in 1996. Then I was in remission for almost 9 yrs and thought I was home-free until it came back w/a vengeance (as they say it often does) in '05. At that time I had surgery in Dec, followed by 3 months of chemo/radiation (3 types of chemo & standard radiation not the "neutron bomb" again) in early '06. Then it spread to my lungs (probably caused by either the surgery and/or chemo) and I had the right middle lobe removed in '07. 2008 marked the beginning of reconstructive surgeries to repair the damage caused by all the horrible treatments, which consisted of about 6 months of multiple surgeries (w/breaks in between to let me heal). Then in '09 I found out the cancer was in my liver (again probably spread by either surgery and/or chemo).
A couple yrs prior to that I had decided that never again could I or would I put my self through those horrific treatments. Then fortunately I came across Oasis of Hope through personal research online (www.oasisofhope.com) and ordered their free book. After reading it, I decided that would be the place I'd go if my cancer ever came back...and that's just what I did shortly after I found out it had spread to my liver, beginning treatments there in the fall of '09. The nice thing about these alt treatments is there are NO side effects (at least I've never had any)and you can do them in the comfort of your own home (for the most part), as it basically amounts to taking a bunch of pills (vit/min/nutrients) everyday and going back only a couple times a yr for maintenance boosters (the things you can't do at home, like massive IV doses of Vit B-17, Vit C, Vit K, Ozone Therapy, etc). My cancer is stable for the most part, it's still there but not at all very active and I've been living w/it as such for the past 2+ yrs. Oasis views cancer as a chronic disease and they try managing it w/all the vit/min supp (allowing your body do what it was designed to do, naturally heal itself) instead of blasting it out of you like they do here in the US, w/no regard for the permanent damage caused to your body by the treatments. The first 2 guiding principle at Oasis are "love the patient as yourself" & "do no harm to the patient". Now I really hope & pray your cancer never comes back, but unfortunately the odds are not exactly in our favor (as I've come to find out) esp in this toxic world that we live in. So if you would ever like to know more about the treatments at Oasis, I'd be more than happy to answer any ?'s you might have about them:)
Oasis truly is LIGHT YEARS ahead of the way they treat cancer in this country, but sadly money, politics, corruption, greed, deception, etc dictate the types of treatments that are made available to us here in the US (see the books "Cancer - Step Outside the Box" & "World Without Cancer - The Story of Vitamin B-17"). After learning of this, it used to make me so angry and while it still isn't right, I'm at peace now knowing that God will "...bring to ruin those ruining the earth" as it states in Rev 11:18. The people responsible for these corrupt & dishonest practices may not be polluting or physically harming the earth itself, but they are harming the people which I'd like to think are the most important part of the earth in God's eyes...

Take Care
Adam Spady

P.S. Teri is my Mom's name:)

Sunday, February 12, 2012

Adenoid cystic carcinoma in the news

from Kent, UK:
Memory of my brave girl will live forever
http://www.thisiskent.co.uk/Memory-brave-girl-live-forever/story-15052326-detail/story.html

Keziah Shorten from Tonbridge went through the first windpipe [trachea] transplant in the world in 2010 during her treatment for ACC, then underwent a second transplant in September 2011. She passed away January 10th this year after complications. Her mom, Tracey Hayter, shared her daughter's story and bravery in this news account.

Fund-raising page and Keziah's story:
http://www.justgiving.com/tracey-hayter

Adenoid cystic carcinoma in the news

I think my data might be included in this article, as I was diagnosed in 2006. If you were diagnosed ACC in your head/neck region while living in the USA between 1993 and 2007, and are still casting a shadow, you too could be included in the data. Ask for full-text through your local library (hopefully free or low cost), or you could pay for full-text at the Wiley site: http://onlinelibrary.wiley.com/doi/10.1002/cncr.27408/abstract:


1. Cancer. 2012 Jan 31. doi: 10.1002/cncr.27408. [Epub ahead of print]

Adenoid cystic carcinoma of the head and neck: Incidence and survival trends
based on 1973-2007 Surveillance, Epidemiology, and End Results data.

Ellington CL, Goodman M, Kono SA, Grist W, Wadsworth T, Chen AY, Owonikoko T,
Ramalingam S, Shin DM, Khuri FR, Beitler JJ, Saba NF.

Rollins School of Public Health, Emory University, Atlanta, Georgia.

BACKGROUND: Adenoid cystic carcinoma (ACC) of the head and neck (ACCHN) is a rare
tumor of minor salivary, parotid, and submandibular glands. The biologic behavior
of the disease is poorly understood, and nonsurgical treatment strategies have
yet to be standardized. The long-term prognosis continues to be guarded, with an 
estimated 10-year survival of <60%. Population-based studies examining ACC are
scarce. The authors aimed to analyze incidence rates and survival outcomes for
patients diagnosed with ACCHN using national population-based data. METHODS: Data
were obtained from the US National Cancer Institute's Surveillance, Epidemiology,
and End Results (SEER) program. Newly diagnosed ACCHN cases reported to SEER from
1973 through 2007 were categorized according to their sex, race, age, year of
diagnosis, marital status, treatment interventions, primary tumor site, and
disease stage. Incidence of ACCHN and postdiagnosis survival were examined over
time and compared across different demographic and disease-related categories.
RESULTS: The authors identified 3026 patients with ACCHN. The mean age at
diagnosis among those cases was 57.4 years (range, 11-99 years). Analyses of
incidence data demonstrated a decline in ACCHN rates between 1973 and 2007, noted
across all sexes and races with no detectable inflexion points. The overall
5-year, 10-year, and 15-year survival outcomes for ACCHN patients were 90.3%,
79.9%, and 69.2%, respectively. Females, patients with localized disease, and
younger patients were found to have significantly better survival across all time
periods (all comparison-specific log-rank P values <0.001). Multivariate analyses
revealed better prognosis among women compared with men (hazard ratio [HR], 0.73;
95% confidence interval [CI], 0.65-0.82), among married compared with unmarried
individuals (HR, 0.81; 95% CI, 0.71-0.91), with certain sites of origin and stage
of disease (HR, 2.788; 95% CI, 2.36-3.29), and in those who had surgery of the
primary tumor site (HR, 0.45; 95% CI, 0.37-0.54). CONCLUSIONS: The overall
incidence of ACC is declining. The noted differences in survival based on sex,
marital status, site of origin, and treatment intervention require further
investigation. Cancer 2012. © 2012 American Cancer Society.

Copyright © 2012 American Cancer Society.

PMID: 22294420  [PubMed - as supplied by publisher]

Saturday, February 04, 2012

From ACCRF - Dovitnib study opens at the University of Virginia

I received this in my email - sharing it here for information. I recommend the two ACCRF publications linked below, too. By the way, in case anyone is wondering - I think I am currently in the "no evident disease" category. I am very glad that there are studies supported through ACCRF for when/if I become a patient with progressive disease, though.


ACCRF
February 2012 

Dovitinib Study Opens
at the University of Virginia 

The University of Virginia has begun screening ACC patients with progressive disease for a new clinical trial. Supported by Novartis Pharmaceuticals, the Phase II study will enroll 10 patients to determine the efficacy and safety of the oral drug Dovitinib, an inhibitor of FGFR, VEGFR and PDGFR. ACCRF-supported studies at the University of Virginia and elsewhere have identified FGFR as a molecular target that may play an important role in ACC. Detailed information on the clinical trial is available at:

http://clinicaltrials.gov/ct2/show/NCT01524692

Only ACC patients with actively growing tumors may enroll in the clinical trial. Such patients or their physicians may contact the Clinical Research Coordinator in Charlottesville, Virginia, USA:

Erin Yarde, MS
Phone: 434-243-8588
Email: ery7b@hscmail.mcc.virginia.edu

ACC patients should discuss with their physicians whether a clinical trial is appropriate. They also may learn more information by consulting two ACCRF publications:

Looking for Signposts: An Update on Progressive Adenoid Cystic Carcinoma (July 2011)

A Guide to Systemic Therapy for Patients with Progressive Adenoid Cystic Carcinoma(November 2010)

The publications discuss the history of past clinical trials involving ACC patients, recent advances in the molecular understanding of ACC, current treatment options and contact information for open clinical trials. The clinical trial of Dovitinib is an example of the welcome and growing trend of matching molecularly-targeted drugs with those patient groups deemed most likely to benefit based on basic and pre-clinical research.
 

Sunday, January 15, 2012

Adenoid Cystic Carcinoma in the news

The Cheeky Librarian here, letting you know the stories in the news or on the Internet about fellow ACC-wearers that I have located recently.

1. Christopher Lyles is back in the news with his new trachea:
http://abcnews.go.com/Health/Wellness/us-patient-artifical-trachea-transplant/story?id=15354809 

http://www.thestatecolumn.com/health/cancer-patient-pioneers-first-stem-cell-trachea-transplant/

2. Cancer.net has added or updated their existing topic page on ACC:
http://www.cancer.net/patient/Cancer+Types/Adenoid+Cystic+Carcinoma

3. I visited a site new to me - Cancer Forums http://www.cancerforums.net/
I can't tell who is producing this site, even after I registered for it. I located one person on there that said they had been diagnosed with ACC.

4. I got a metaphorical kick in the gut while searching for news on ACC - I located a blog that has stolen earlier posts that I wrote for the Cheeky Librarian blog. I am letting Google know and reporting to the home site that hosts the blog that stole my posts. After I get the word out officially, I will let you know the outcome. And if you have any advice, please let me know. I figure others have 'scraped' my blog for the information, and I don't take it as a compliment on the quality of my writing.

2012 and Adenoid Cystic Carcinoma still in my life

Omaha has been spoiled here with warmer than usual winter weather, but last week's weather reminded me that the cold is not ever far away. It was sub-zero wind chill two days when I left the house to go to work, and even with wrapping myself up and wearing a hat all day, the head pounded. I am glad the weekend did not involve leaving the house, and today was much warmer, so I should face Monday with less pain. It gets hard to concentrate, and since my head holds my greatest tool for work as a medical librarian, this is a coping issue.

I want to thank all of those who share their stories about having ACC and continuing their lives while facing the stress of living with cancer. I feel that we "get each other"whenever we email or comment, knowing without having to say it out loud what life is like now that we know we are mortal and are paying the bills that proved it to us. I have lost a few of the people that shared this change of perspective, and I really miss them. I value greatly the others that I email with - and just wanted to say thank you in public.

If anyone has some advice on how a person can keep on keeping on, I would eagerly share it here with others. Drop me a note, please.
 
Who links to my website?