Always Thankful

We had a beautiful Thanksgiving Day with our family – everything we could have asked for.  In the morning we took the dogs for a long walk and then had a quiet afternoon dinner with family here at the house.

after dinner

 But it wasn’t all sunshine this week either. Johnny my Former Boyfriend is facing a very serious medical situation of his own.  A routine colonoscopy turned out to be anything but.  It revealed a mass in his sigmoid colon.  After a series of tests and scans the reality is that the tumor is cancerous and the cancer has spread to his liver and an adrenal gland.

We are confident Johnny is receiving the best medical care available.  He is scheduled to go into surgery next week.  It goes without saying that we’re facing a very serious and frightening situation. But we’re optimistic and Johnny is otherwise very healthy.  His doctor said his heart and lungs look great!  We are so grateful that we have all of you in our lives. Our only request is that you keep us in your thoughts and prayers.  We love you all.

Fraudulent Research and a slap on the wrist by the feds

Happy Photo Friday everyone!  It’s been a beautiful week in the Capital City.  So beautiful for November in fact that we took the dogs and checked out Glacier Ridge Park near our house. I’ve been able to enjoy this week without any doctor appointments – so the Former Boyfriend had a couple doctor appointments of his own.

at the park

On to the cancer research front. Here’s an article from Medscape about fraudulent cancer research at Duke University and the failure of the University to make changes and hold everyone accountable.

Last week, Anil Potti, MD, a former star cancer researcher at Duke University, was found by federal investigators to have "engaged in research misconduct" by including "false research data" in multiple published studies and other documents. He received a 5-year ban from federal grant funding as punishment.
However, the research in the published studies was undertaken by a team of investigators at Duke, including other clinicians, statisticians, and scientists. Various findings led, in turn, to large clinical trials that involved hundreds of patients and subsequent collaboration with other researchers. Is it fair that only one person should take all the blame?
And what is the institutional responsibility of Duke University, which had apparently been warned about research irregularities by a whistleblower in 2008?
These and other questions remain about the case, which is a scandal, say a pair of cancer research experts writing in a guest editorial published online November 13 in The Cancer Letter, a trade publication.
"A case with millions of taxpayer dollars misused, totally fabricated research, damage to hundreds of patients recruited for treatment with 'the holy grail' of cancer treatment, and a pathetic institutional response is being closed with a 5-year funding ban for one investigator, individually and alone," write editorialists Keith Baggerly, PhD, a biostatistician at the University of Texas M.D. Anderson Cancer Center in Houston, and C.K. Gunsalus, an expert in scientific misconduct at the University of Illinois at Urbana-Champaign.
The pair point out that, because of clinical trials associated with faked genomics data and flawed technical approaches, Dr Potti "put patients at risk" repeatedly from 2005 to 2010. Some patients subsequently filed lawsuits against Dr Potti and Duke, claiming that they had participated under false pretences in a "fraudulent clinical trial."
As previously reported by Medscape Medical News, the Duke research led to studies (later retracted) that reported advances in the use of genomics to predict cancer treatment responses, cancer recurrence, and other clinical events. The studies appeared from 2006 to 2009 in prestigious major medical journals, including the New England Journal of Medicine, JAMA, the Journal of Clinical Oncology, and the Lancet Oncology.
Some of the research led to clinical trials funded by the National Cancer Institute (NIH) that put patients at risk for harm and were eventually discontinued.
Dr Potti's Punishment Questioned
Notably, Dr Potti did not admit to having committed fraud to investigators from the US Office of Research Integrity (ORI).
Instead, he entered into a "voluntary settlement agreement" and "neither admits nor denies the ORI findings of research misconduct," according to an ORI report published online November 9 in the Federal Register. The report is the "final action" in the 5-year investigation.
Despite the grand scope of the faked research, no one else at Duke was reviewed or cited by federal investigators in last week's report.
Duke issued a statement last week that suggested that other Duke staff were duped by him.
"We are pleased with the finding of research misconduct by the federal Office of Research Integrity related to work done by Dr Anil Potti. We trust this will serve to fully absolve the clinicians and researchers who were unwittingly associated with his actions, and bring closure to others who were affected," said Doug Stokke, vice president of marketing and communications for Duke Medicine.
However, the Cancer Letter editorialists have damning words for Duke about the handling of the protracted scandal.
"This case is about as serious as one can imagine at the individual level. At the institutional level, it is beyond disappointing at every turn: in handing an internal whistleblower; in responding to credible, serious, and repeated external scientific queries; in managing the multiple conflicts of interest in the situation; in limiting the information available to an interim scientific review; in how its leaders testified to an IOM review committee; in its legal responses," the pair write.
The whistleblower was a third-year medical student who warned university officials about Dr Potti's misconduct in 2008. However, that student, Bradford Perez, was effectively silenced by school officials and researchers, as detailed in a report in the Cancer Letter earlier this year.
The editorialists think that Dr Potti got off too lightly. "Potti's behavior was egregious and warrants more severe punishment than just a 5-year ban on NIH funding," they note.
As troubling as Dr Potti's actions were, Duke's were worse, they argue.
"Even more worrisome than the extensive and persistent behavior of one investigator is the institutional oversight of the research and patient treatment," they write.
Duke could have acted much more quickly — by 2 years, argue Dr Baggerly and Gunsalus. "There is extensive documentation that multiple Duke administrators received credible information about serious problems in the Nevins/Potti lab as much as 2 years before they finally acted in 2010," they write, referring to Joseph Nevins, PhD, the Duke researcher who was Dr Potti's mentor.
The fraud committed by Dr Potti was "blatant" and was detectable upon careful review, say the editorialists. And they add that Dr Potti unlikely acted alone, saying there is an "implausibility" about that.
The pair would like a full accounting of who else was involved. "It's hard to tell how those around Potti — cast here as a sole and only bad apple — have been 'absolved.' Who, exactly, is on that roster? Who were the witting?" they ask.
They also observe that Duke did not take any action against Dr Potti until 2013, right after the Cancer Letter exposed Dr Potti for padding his resume. Among other accomplishments, he claimed to be a Rhodes Scholar. He was not. He was then fired by Duke.
Dr Potti is now working at a cancer center in Grand Forks, North Dakota, according to a report in Retraction Watch.

Some good results, and more work to do

The best doctors are the ones that partner with you.  I’m so very lucky to have Dr. Kanodia on my side.  Tuesday we went over my latest test results and here are the findings.  He checked six different methylation pathways and to his great surprise all six pathways were in the normal range.  Not much more to say there.

Unfortunately I had several functional vitamin deficiencies meaning that even though I take vitamins my body is not absorbing them.  Asparagine, Vitamin A, Calcium, Selenium, Vitamin E, and Vitamin K2 (and that is just the preliminary report.) So we’ve made additional changes and added probiotics into the mix of supplements that I take.

here's what that looks like on paper

One of the not so secret fears of anyone with a life threatening illness is that somehow, somewhere, there is some treatment that is better that what you’re currently doing, can access or afford.  I troll the internet just like anyone else, but at least I have Dr. Kanodia to talk to about some of the latest findings.  And he always comes back to everyday choices – how much I workout, what I eat/and don’t eat, and trying to keep a positive attitude along with monitoring my progress with the latest testing.

And now changing gears…November is National Hospice and Palliative Care Month.  Cancer and its treatment have made me think a lot about mortality.  Sometimes it feels very powerless.  But by determining what I don’t want (intubation, chest tubes, forced feeding, IV’s) I am quickly defining more about how I will live the rest of my life.  The National Hospice Collation encourages everyone to write out your own last chapter.  Think it through, write it down and make sure your family knows your wishes.  It’s your life and it will – hopefully much later than sooner also be your death.  Sorry, I didn’t mean to sound so morose.

  As far as working out I have found the work of Dr. Eric Goodman.  He’s a chiropractor with his undergraduate degrees in physiology and nutrition.  Here is the link to his website http://www.foundationtraining.com.  Using his 10 minute workout I feel stronger and more flexible than I have been in a long time and it’s been great for my posture.  I hope some of you will give it a try.

We’re having a quiet weekend around the house.  We hope all of you have a great weekend planned.