Monday, August 18, 2014


Clockwise from my beautiful wife:  Daughter Karen; Linda's mother, Marion; Carolyn's younger son, Eben; Daughter Kristen; and me.
Carolyn must have taken the picture.
My “hits” on this blog have fallen from 40-50/day a few weeks ago to 4 yesterday and zero so far today.  Obviously I had better get cracking.  I have two subjects in mind; I will inflict one on you now & the other in a few days.
I have written several times about how our shared ignorance of cancer science worked to prevent Linda and me from finding advanced, experimental therapy, therapy that might have saved, or at least prolonged, her life.  (She did get into one “trial”, called “dose dense”.  This consisted of having chemo every two weeks instead of every three.  Big deal.)  Well, now I know lots of things that I wish I had known back then.  I just learned about another this morning.  Here it is:
The article is heavy to anecdotal evidence.  It relates how one woman who was diagnosed with stage 4 ovarian cancer is still alive, and flourishing, after five years.  She was the recipient of a treatment called HIPEC, which acronym was never defined in this short article.  It consists of (1) undergoing a complete surgical “debulking”, removing the tumor and, in her case, most all the organs of the body that I have ever heard of, (2) having warm chemotherapy drugs inserted directly into her peritoneal cavity, and presumably somehow sloshed around, followed by (3) the normal course of chemo therapy.  It is working for her, and I am happy for that.  It seems to have been used successfully in several other types of cancer.  Apparently there is a phase 2 trial going on right now to test if it will help lots of other ovarian patients.
Everyone who reads this blog should keep this therapy in the back of his or her head.  It may turn out to be very important.  One hopes.
I should warn you not to click on the video that accompanies this article.  If you do, and if your experience is anything like mine, you will have to wade through some extremely annoying advertisements.

Saturday, August 9, 2014


Linda and Mitzi
She later ran off with the big orange tomcat next door.
Mitzi, that is - not Linda
It would be difficult for anyone not physically located on an asteroid to be unaware of the Ebola outbreak in West Africa.  As of today (8/9/14) at least 1000 people have died, in five separate countries.  Many more are infected.  Currently, under the best of circumstances  one’s likelihood of surviving an Ebola infection is less than 50%.  What to do?
Well, other than quarantine and hospital care, there’s not much in the weapons arsenal at present.  If only there was a drug that would kill the nasty little wormlike monster.  Well, there is, but there are problems.
A tiny company called Mapp Pharmaceuticals, from San Diego, has something they call ZMapp.  They make the stuff somehow using tobacco plants.  (Hooray!  Finally tobacco is good for something.)  Doses of ZMapp have been given to two white American medical workers, who contracted the virus in the line of duty.  As of this moment they are both alive, and one claims to be doing well.     
So, inevitably, the question is asked: “How come the drug went to white Americans, and not to Africans?”  Well, in its magisterial way, the NY Times has provided an answer.  Here it is:
Here are some facts that must be considered.  First, there is damned little ZMapp in existence.  (Mapp Pharma has only nine employees, and I suspect that tobacco doesn’t grow well in San Diego.  If only the company was located in Humboldt County & marijuana would work as well as tobacco!)    It will take so long to manufacture a significant supply of the drug that the Ebola outbreak should already have run its course.  Also, ZMapp has not been clinically tested – in fact; it hasn’t even properly finished the obligatory preliminary animal trial.  Imagine what would happen if Mapp Pharma gave the stuff to a bunch of Africans, most of whom then died.  Actually, you don’t have to imagine – something very similar happened to Pfizer in 1996, with dire consequences.
The ethical question of how to dole out the drug apparently is sufficiently perplexing and important that the World Health Organization has summoned a group of medical ethicists to discuss it. 
So, anyway, the question is “fraught”, whatever that means.  What do you think?

Friday, August 8, 2014


Carolyn and Linda
Sand spit near Pt. Townsend
Pretty windy, I suspect
I have neglected this blog for the past week or so.  Linda’s sister Carolyn was visiting and I felt justified in goofing off.  Together with Linda’s very good friend Florence, we drove my indomitable jeep up to Twin Lakes in the North Cascades, east of Mt. Baker.  Bright sunshine, glorious scenery, and not a bug in sight!  Thank you, Lord!
But now Carolyn is gone, and my excuses disappeared with her.  Fortunately, the NY Times furnishes some interesting material, part of which I will discuss now.
Well, to get the thick biology out of the way, it appears that scientists at Cambridge University (the one in U.K.) have found proof that mutation of a third gene, PALB2 by name, contributes to susceptibility to breast cancer.  “Third”, because BRCA1 and BRCA2 already are well understood to be bad actors in the breast cancer field (also ovarian, as you probably already know).  The BRCAs are “double strand repair genes”, which means that they code for proteins that stitch the DNA molecule back together when, during cell division, it incorrectly breaks in two.  PALB2 seems to contribute to this process, in ways that I don’t understand.  I wonder if this new gene also is important in ovarian cancer.
An interesting tidbit: men get breast cancer, too, although not often – and the BRCAs and PALB2 are contributing factors.   
And then, at the end of the article arfrives the almost inevitable statement that screening for BRCA and PALB mutations in “normal” women is not recommended, although it is for women with a well defined family history of this disease.  The stats for breast-cancer probability in mutation-carriers quoted in the article make this a no-brainer.  It is just too bad that there isn’t enough wealth sloshing around so that screening the general population would be feasible.  But, heck, if we spent that much money on the war on cancer there wouldn’t be enough left over to fight the war on terror, or any other wars, for that matter.  That would be a hell of a fix!

Tuesday, July 29, 2014


Where?  When?
File this one away somewhere.  With any luck you will never need it, but if you do – here it is.
How to find a clinical trial:  When Linda was diagnosed with stage 3c epithelial ovarian cancer neither she nor I knew what that was, nor what to do about it.  We knew that things called clinical trials existed, but we didn’t know how to find them or whether they could be trusted, let alone would do her any good.  We relied on our oncologists for guidance – and, sad to say, we didn’t get much.  Knowing about and utilizing clinical trials probably wouldn't have saved her, but then again, who really knows?.  So, you should  know about clinical trials.
To find a clinical trial in your vicinity, simply go to the NIH web site “”.  It is easy to use, up to date, and exhaustive.  Were Linda alive today I would go to that web site and type in “ovarian cancer and Seattle”.  This request would return 130 studies, of which 24 currently are recruiting.  (The rest are either full or recently completed.)  Clicking on any of the 24 would give me who to contact, as well as a description of what the investigator(s) are trying to find out.  Searching on “ovarian cancer and Bellingham” returns 12 studies, three of which are open.  And these examples are based on using “basic search”; there is a button for “advanced search” that can narrow the possibilities down much further.    
Note that many of these trials are run by drug companies.  Before you shudder and turn away in disgust: they are supervised by the NIH and most of them have academic researchers on staff.  You may not like drug companies (really, who does?) but we damned well still need them.
I hope this turns out to be useless information.

Monday, July 28, 2014


In better times
Here is a tough one to read.  Tough, but we all should read it.  I’m trying to muster the courage to read his book.
To cheer up I think I will go look at cute baby pictures on Facebook.

Sunday, July 27, 2014

LINDA'S TEAM, 2014. The final report.

Patches knew a good lap when she saw one.
To start with the good news:  Linda’s Team skunked the Fred Hutch team.  We raised $1530 to their $1105.  Hooray for us, and thanks to all of you who donated.
The bad news?  I have 15 hotdogs and two dozen buns to freeze, plus enough beer and pop to last a year.  I guess I didn’t advertise the thing well enough, because only Karen and Florence showed up.  My cousin-in-law Pieter Berendson also was here; he cooked the hot dogs – all two of them.  Maybe next year I should go back to a full-fledged hard press to advertise the event.  I didn’t think I’d have the energy to do it this year, but in retrospect I was wrong.  Wait ‘til next year!

Thursday, July 24, 2014


Linda and Carolyn, 1991
Nice shot.  Where at?
I have used up my quota of free articles from the NY Times web page, but maybe Dick Ingwall will keep me in the loop.  Inshallah!
My last article was an interesting essay on the woes of the pharmaceutical industry.  If you haven’t used your ten free peeks, you may be able to read it at:
Again, Inshallah!  (I am reading a spy novel that uses lots of Arabic ejaculations.) 
So, apparently the pace of innovation in the pharm industry has slackened rather dramatically.  The reasons seems to be economic as well as regulatory.  It costs so much to develop mass-market drugs that Big Pharma often despairs of recovering their investment, let alone of making a profit, before their patent runs out and generics take over 80% of the market.  Also, some new drugs cost so much that medical insurance plans won’t cover them.  (Try $84,000 per dose for a new “blockbuster” drug for hepatitis C.) 
Oddly enough, the exception to this dearth of innovation seems to revolve around the so-called “orphan drugs”, which are drugs developed to confront diseases (including several kinds of cancer) that are exceedingly rare.  Apparently the FDA permits smaller and cheaper clinical trials for these drugs, because there are too few sufferers to people a full-size Stage 3 clinical trial.  Also, the insurance companies are less reluctant to pay for such drugs – often costing $100,000 or more per treatment – because there are so few potential claimants.    
As one wag put it, “more people are studying orphan diseases than actually HAVE orphan diseases.”
FYI:  Linda’s Team trails Fred Hutch by $5.00 as of this morning.  Remember – I will (grudgingly) match anything you contribute .