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Saturday, May 25, 2013

Adenoid Cystic Carcinoma genome has been sequenced!!

Yes, I am pretty darn excited at this news!!

Memorial Sloan-Kettering Cancer Center has announced: 

Investigators Sequence the Genome of a Rare Head and Neck Cancer

Their article about this was also just published - here is the PubMed link:
The mutational landscape of adenoid cystic carcinoma
(Remember, you can request a copy of the full-text of the article through your local public or medical library. Delivery fees may apply. Or, you can click on the publisher's link on the PubMed record and pay a higher price for full-text with a credit card. Since this study had NIH funding, the article will most likely be free to the public after a bit of time-say 6 to 12 months- has gone by.) 

Best sentence of their abstract comes at the end: "Collectively, our observations establish a molecular foundation for understanding and exploring new treatments for ACC."

In case you wonder if those donations you have been collecting or giving make a difference - here is the list of all the funding agencies behind this monumental research effort (so please, keep on giving and collecting!) (PS-links are mine, so you can get to see more about who is behind the research, and in the case of the ACCRF, get right to the donation page, so we can raise this work to the next level!):

This research was funded by the National Institutes of Health under grants RO1CA154767, R21DE023229, and 5T32CA009685; the Geoffrey Beene Foundation; the STARR Cancer Consortium; the Louis Gerstner Foundation; the American Head and Neck Society/American Academy of Otolaryngology — Head and Neck Surgery Foundation; the Howard Hughes Medical Institute Medical Research Fellows Program; and the Adenoid Cystic Carcinoma Research Foundation.

Update (5/29/13) NIDCR also had an announcement on this:

Saturday, May 18, 2013

I saw a YouTube video about an Adenoid Cystic Carcinoma wearer curing their cancer through macrobiotic diet

First, so very glad to hear another ACC wearer has had a baby after treatment, and isn't he such a cutie! Also glad that mom is doing well, cheering very loudly for that! Her choice of not doing radiation is an option everyone has - I chose to do the radiation in 2006 based on my age and relative health. If I had been older, probably wouldn't have chosen it, either.

Second, glad to hear that the macrobiotic diet is keeping her life healthy-I have heard that type of diet (after they expanded from just brown rice and water, back in the old days) was one to follow if one wants to be vegetarian. 

Third, I could just as easily say that me eating chocolate pudding 'cured' my cancer, as I have been "no evident disease' (the official term) since 2007. Am I cured? Doubt it - ACC doesn't leave that easy - that isn't its style.  Nothing I can do at this time to keep it away, either - no matter how much tumeric or juice well-meaning people have told me to eat, nor midnight animal slaughters, nor negative vs. positive thinking, nor yearly scans. The company's logic doesn't make sense when they imply that following the macrobiotic diet is what has kept cancer from returning. No way of knowing that. Just saying. 

However, there are ample opportunities to conduct clinical trials to prove alternate therapies work to cure cancer.  A 2012 meta-analysis of the medical literature conducted to search for research on German cancer diets (published in German, but an English abstract is in this PubMed link: ) concluded -

"The most often mentioned "cancer diets" are Budwig diet, Gerson's regimen, lowcarb dietcancer cure of Breuß and macrobiotic diet. These diets can be classified according to the principle idea of carcinogenesis as follows: cancer as a lack or abundance of a substance or as a consequence of pathological metabolism of cancer cells. Staying in line with a specific diet the patients are thought to be able to cure themselves or at least substantially contribute to cure. However, we did not find any scientific publication of a clinical study which describes positive results regarding survival. On the contrary, data show malnutrition and side effects."

That is great news for companies such as Cancer Compass-An Alternate Route (the author of the blog is unnamed; I couldn't find out who the individual is, even when visiting the About page: ), or Denny Waxman, the macrobiotic counselor featured in the films (, as proponents of alternative and complementary therapies have a wide-open field to run actual trials to test out these therapies against traditional treatments, and see how things shake out. Run the study, and alert the world with the findings! I would sign up for a macrobiotic study, and I bet there are other ACC patients that would be interested, too. Checking today (5/18/13), I only located one study that had the keyword 'macrobiotic' in it when I searched the Clinical Trials database (, completed in 2006 - no results published (personal comment: aw c'mon guys, really? give us some results!). 

I know there is great interest on curing or preventing cancer through our own actions, through diet, exercise, moving to a safer neighborhood, changing jobs, whatever. Believe me, if I could point out something that brought on my own cancer, I would be telling EVERYONE how to avoid what I experienced and continue to experience. (And I wouldn't be making money on the news, either. Again, just saying.) 

After reading the comments on a recent story about an actress making a decision to adjust her chances of having a BRCA gene-related cancer, I know there is much more scientific work needed to address the discussion of alternate/complementary vs. traditional treatments. (By the way, I entered a comment on that story that said people can increase their own health information literacy by asking questions through their local library that serves consumer health information - let me know if that comment showed up.)

Finally, I sure hope they paid her (the ACC wearer in the films) well for showing up and telling her story, and I wish her years of happiness ahead. 

Saturday, May 11, 2013

Just learned of an Australian source of support for Adenoid Cystic Carcinoma

Found this group on Facebook - posting their Facebook page with permission:

You will need to ask to join - it is a closed group.

Sunday, May 05, 2013

Ever think cancer can be a blessing? Check out this blog.

I happened to locate a beautiful blog, For The Family, when searching the web for mentions of ACC.
Jenny A., the author, has written about 10 (so far) blessings of cancer that I wanted to share. Thank you for your writing, Jenny A.

About a funeral and family

Good advice from a potato chip box at the Hy-Vee
Just returned from visiting our hometown to attend a funeral of a close uncle. He and I talked freely about death and how we hoped to meet it and what we hoped people would do (and not do) to mark our deaths. His funeral was attended by people from all walks of life - he was that kind of man, one that everyone liked. I will miss him like crazy. He was a model of keeping family first - and I sure hope that I have followed his teaching.

While at my mom's home, I was able to visit with my brother and his wonderful family. He too keeps family first, and revels in doing things together. I am so proud of him, being the dad that his kids need (yes, even as young adults, having the advice and support of a dad is important!), and now a grandpa to a wonderful grandson. My mom is so cool - she told me that she is proud of both of us and how we have grown up. I just tell her it is all her fault, or due to her diligence, whichever way one wants to look at it (grin!). She worked so hard while we were growing up, but still found ways to spend time with us (more valuable time than what they call "quality time" now). I came back to my home and told my kids (young adults, both of them) that I was proud of them and how they have grown up - can't say it enough. My dear husband is and always has been such a great dad to them, even while deployed in the military, and then in person as a stay-at-home dad for 16 years (a braver man I have not met). He hears daily through my actions and words how wonderful he is as the leader of our family.

I am writing all of this down (in a somewhat coherent fashion, I hope) so that it will be recorded somewhere for my kids to see later. All of us will stop being around to tell others how special they are to us. Don't pass up the chance to kiss a cheek, lighten a day, cheer someone up. Like the potato chip box at Hy-Vee says, handle everyone you know and meet with tender loving care. We are all in this together, until we aren't.
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