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Monday, March 28, 2016

Farewell to a fellow Adenoid Cystic Carcinoma journey blogger

I just learned that Kathryn Seeley died March 23. She blogged her travels with cancer at A Rare Cancer Journey. Her last post, dated January 25, 2016, included a list of "do's and don'ts when it
comes to things to say to a cancer patient (or about me)":

1.  "She lost her battle to cancer."  (Read here.) The implication is that I just didn't fight hard enough.  Nothing could be more offensive.2.  "God never gives you more than you can handle."  This is another annoying cliché.  The God I believe in would never test people to see how much they can handle.  How mean would that be?3.  "Everything happens for a reason."  Really?  Bullshit.  This is one of the most insulting things a cancer patient can hear.  Classic Blame The Victim.4.  "What is your prognosis?"  Well, if it's not good, you've just made the person feel like crap having to explain that they're in bad shape.  And the list goes on....
I thank her for sharing her path for the rest of us to learn from, and for all the effort she put into keeping the world informed and aware.

Thursday, March 17, 2016

Adenoid Cystic Carcinoma in the news

Two fantastic bits of news regarding ACC (also referred to as AdCC). 

First one is about the past, in the form of a research article just published online February 12, 2016:

Sweeney L, Vermimmen F, Sinske S. MRI of a recurrent adenoid cystic carcinoma of the trachea, treated with fast neutron therapy. British Institute of Radiology. DOI: . The open access article describes a 51 year old patient who was operated on for ACC in 1981, and came back in 2011 for neutron radiation therapy for a recurrence. I am feeling for the patient for going through all of that, and for being a fellow wearer of ACC. My takeaway: pay attention to the number of years between procedures: 2011-1981= 30 years, the longest I have ever heard of someone with ACC. I did a happy dance when I figured out the time span. The patient might still be alive - the article goes on to say " Clinically, the patient is doing very well and is not reporting any late side effects of the treatment. "     Assuming the authors' last article update was before they submitted it in 2015, the patient would be 34 years past initial ACC treatment. I am cheering him and me and the rest of us wearing this cancer on with the hopes that more of us experience this longevity. I would welcome meeting this person via email, any day. 

Second one is about the future, regarding a cancer vaccine that is being developed in Australia:   VCA grants include Peter Mac trial of a new vaccine to prevent recurrence of colorectal cancer .  News from Australia says a cancer vaccine for colorectal and adenoid cystic carcinoma will be tested on humans in 2017. Professor Robert Ramsay is leading the team . I find the information shared promising, since they say they will be conducting human testing in 2017. Note: this isn't a done deal. Something could change their plans, the human testing might not take place, others' research could preclude what they are studying at Professor Ramsay's lab. I am glad there is any research going on regarding this type of cancer, which is why I share the news I find. 

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