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Thursday, March 29, 2018

The dx from Hell anniversary

On March 29th, 2017 my younger daughter Danielle got the devastating news, via an abdominal CT scan rad report confirmed by a liver biopsy px, that she'd been found to have Stage IV metastatic pancreatic cancer. 

In the wake of two successive chemo regimens that eventually failed to halt or reverse the progression of the disease (as expected via the clinical literature), she is now under home hospice care and not expected to survive much longer. We're keeping her comfortable and riding herd on pain management. Things are day by day, often hour by hour here.

See my prior post "A tale of two sisters." I will update things there as time permits.

Words fail to capture the unrelenting stress and sadness. I have been on continuous "tilt" for a year.

Above, I found this while rummaging through and cleaning out my late Mother's stuff some years back.

Below, my revised iPhone wallpaper.

The other day I fired up my iPhone in video mode, and Danielle and I frankly talked through some difficult end-of-life issues where we still had some loose ends hanging. That was difficult, but very good. I won't be posting that.

Final note for now: words also fail to express my gratitude for the grace and strength of my wife through all of this. We came together 44 years ago this month. She embraced the role of stepmom without hesitation. Cheryl has consistently gone above and beyond the call of duty where the kids are concerned. And she is all over it right now.

Below, Danielle and Mom during our November "bucket list" retreat to Manzanillo.


In my mailbox yesterday, latest issue of Science Magazine.

Lots of progress (and persistent problems). Too late for us personally, but others will eventually surely benefit.

If they can afford it. From the "Sticker Shock" article:
Physician Peter Bach at Memorial Sloan Kettering Cancer Center is appalled at the sky-high price of cancer treatments in the United States, and he is watching new immune therapies drive them higher still. Checkpoint inhibitors for various solid tumors cost about $150,000 a year, and a personalized treatment called chimeric antigen receptor–T cell therapy tops out at $475,000. Dozens more immunotherapies are in clinical trials, as companies race to reap the monetary rewards. For the past decade, Bach has immersed himself in health policy and economics to decipher and publicize what's driving these high prices. Science spoke with Bach last month...
I've lost track of what Kaiser has spent on Danielle. Safe to say it's well into six figures.

Another article of concern in the issue:
Too much of a good thing?

As the growing wave of excitement over immunotherapies has swept through the cancer field, a concern has arisen in its wake. Are there now too many clinical trials for these novel treatments, which enlist the immune system to battle tumors? One recent tally found more than 1100 studies combining a popular new class called checkpoint inhibitor drugs, which unleash suppressed immune cells, with other treatments. Some academic researchers, pharma executives, and other experts have decried this explosion of trials as a counterproductive glut motivated more by the race for money than good science and warned that many of these efforts may not finish because of a lack of participants. Other researchers, however, think the competition is healthy—and that the best studies and combos will prevail.
I'd like to hear from the folks at Science Based Medicine on this area of concern. Searching their site with just the phrase "clinical trials" turns up a spate of posts.

The government wants to free your health data. Will that unleash innovation?

In health care, breakthrough cures are no longer just hidden in the innumerable mysteries of biology and chemistry. Increasingly, they are locked away in a place even harder to access: electronic patient records.

These files could help establish which patients, with which backgrounds and disease characteristics, respond best to certain therapies — secrets that are often carefully guarded in service of patient privacy, and private profit.

But the federal Centers for Medicare and Medicaid Services is seeking to open the data floodgates. The agency wants to put patients in charge of their information instead of the hospitals and insurers that collect it and keep it locked within their own systems. And it wants to do so explicitly to help app and device makers gain access to high-quality data…
We shall see. The impediments remain legion and formidable.


Across the past four years or so, I have averaged reading about two books a week (plus all of my periodicals, and daily online source reading). There's just so much to continue to learn.

Lately, though, given Danielle's increasingly serious decline, my stash of only partially read books has piled up. A few days ago I ran across a book review post at Science Based Medicine commenting on this book:

I got it and am about halfway through it. Highly recommended. Great primer on the fundamentals of both "medical ethics" and the scientific method as relevant to medical R&D and clinical applications (and the BS of "alternative treatments").


April 1st -- My son had to leave to go back home to Baltimore today. I had NPR on the car radio during the trip to OAK airport and back, and heard a "Hidden Brain" segment involving this author:

"Consider that we have known the functions of the three other basic drives in life—to eat, to drink, and to reproduce—for many tens if not hundreds of years now. Yet the fourth main biological drive, common across the entire animal kingdom—the drive to sleep—has continued to elude science for millennia.

Addressing the question of why we sleep from an evolutionary perspective only compounds the mystery. No matter what vantage point you take, sleep would appear to be the most foolish of biological phenomena. When you are asleep, you cannot gather food. You cannot socialize. You cannot find a mate and reproduce. You cannot nurture or protect your offspring. Worse still, sleep leaves you vulnerable to predation. Sleep is surely one of the most puzzling of all human behaviors..."
Stay tuned. Just got it. Very interesting. Will tackle this stuff in a forthcoming post.

More to come...

1 comment:

  1. It breaks my heart to hear that your daughter has pancreatic cancer. My mother passed with this in 2006. Please tell your daughter that there are many wonderful people waiting to welcome her when she crosses the threshold. Ask her to please say "Hi" to my mom for me. Praying for you and your beautiful family.