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.
 
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