THE PILL

my guess:

Carolyn's birthday celebration at The Ivanhoe

Ferndale, CA

maybe 2008

When I was in high school telephones were dial-up affairs on the wall, and in many cases required the assistance of a human being (the “operator”, for you under 40.)  It was common knowledge that (shudder?) pot was a sure road to hard-drug addiction, misery, and death.  Nobody drank in high school, only a few would-be hipsters smoked, and as for sex – then as now nobody thought of anything else - but very little occurred.  Oddly enough, the girls didn’t want to get pregnant.  

However, that was before THE PILL.  With the advent of oral birth control it became possible to safely do what nature so vigorously called upon you to do – and not risk the consequences!  To me and my male friends THE PILL was an innovation equivalent in importance  to electricity!*

 

Well, it happens that at that time I was a faithful attendant at several church-sponsored evening youth activity groups.  That was because they had singing, guitar music, apple cider – and girls.  Lots of girls!  At those evening sessions there invariably would be some kind of informal “sermon”, in general laid on by an earnest and devout, well-scrubbed college boy, most likely a seminary student.  Uniformly we hormone-wracked high schoolers were enjoined to lay off sex until we were married.   The poor girls in the group were threatened with societal rejection, not to mention eternal damnation, if they took THE PILL.

Well, some did and some didn’t.  And young married women who wanted a career took the pill, as did women who simply didn’t want any more babies.  THE PILL was even good for guys; we could save on condoms, and delay that inevitable vasectomy. Maybe it WAS more important than electricity!

It turns out that THE PILL brought with it another, entirely unexpected, benefit – it helped protect women from ovarian cancer.  The NYTimes article cited below states that the death rate from OVCA dropped by 16% between 2002 and 2012.  This, the article goes on to say, is the result of less use of hormone therapy – and increased use, many decades ago, of THE PILL!  So, those naughty girls of the 50s not only had more fun – they lived longer!  So much for Protestant orthodoxy.

The same article recognizes that there has been a little improvement in the treatment of ovarian cancer, but not enough to make much difference. And early detection is not even mentioned.

http://www.nytimes.com/2016/09/27/health/ovarian-cancer-death-rate.html?_r=0

*Not that it did us much good.

KALAMAZOO TURNS TEAL

Hunsingers, Joyces, and Becks

Well, by God, good for Kalamazoo, Michigan!  As many of you don’t know – but should – September is Ovarian Cancer Awareness Month.  I told you that weeks ago 

 http://ljb-quiltcutie.blogspot.com/2016/09/the-fda-and-uspstf-strike-again.html 

but only managed to give away four of my teal pins, so far.  However, folks in Kalamazoo managed to turn the whole town teal, or thereabouts.  Kalamazoo is the home if Linda’s brother and his family, which numbers eight (unless some new grandkids have been slipped in without my knowledge.)  All but the ones under six are energetic activists, so I wouldn’t be surprised to learn that some of the teal was laid on by members of the Joyce-Hunsinger clan.  Thanks.

Here is the article:  http://wwmt.com/news/local/turn-the-town-teal-canvases-kalamazoo-to-raise-awareness-of-ovarian-cancer

  

TALC AND THE COURTS

What can I say?  I miss her

Here is an article that many of you won’t like.  It was written by a blogger who happens to be an attorney heavily involved in tort cases concerning the medical profession.  The specifics in this case concern lawsuits directed at Johnson & Johnson over talc and its relationship to ovarian cancer.  He seems to be somewhat skeptical of the way some courts have handled these suits.  His opinion seems to be that the role of the court should be that of “gatekeeper”; that is, they should determine which scientific evidence carries the presumption of validity – is based on experiments conforming to the accepted standards of the discipline.  This would seem to be a tall order for an elderly lawyer turned judge who flunked biology 101, but must be oerformed to prevent the jury (ALL of whom flunked biology 101) from tearing the defending party (often a hate worthy big corporation) into little pieces unjustifiably.  My take on this:

1)      Stop using talc, right now.  I suspect that it contributes to ovarian cancer, but I’m not sure – so don’t take the chance.

2)      If a company has reasonably good evidence that its product is harmful it should stop selling it and run an honest experiment to find out if and why.

3)      If a company knows that its product is harmful but does nothing about it, it should be sued out of existence and its CEO and Board tossed in jail.

4)      If a company sells a product (e.g., asbestos) in good faith, it should not be driven out of existence if, at a later date, harm is detected.  See Johns Manville as a case study.

5)      If I had it to do over again I would, of course, study cancer biology and go into research.  However, I would be sorely tempted to acquire both an M.D and a J.D.  Imagine trying a medical case with yourself as an expert witness!  Such people exist; all are rich and only die when they crash their Aston Martins into a bridge.

http://www.chem.info/blog/2016/09/talc-and-ovarian-cancer-does-reliable-science-even-matter-anymore

BRCA, Rucaparib - and Clovis Pharmaceuticals

At the great Sisters, Oregon quilting frenzy

As no doubt you deduced many months ago, the oft-used acronym BRCA stands for Breast Cancer; medical researcher types seem to like to like to paste together the first two letters of words to designate something.  That, for example, the famous HELA strain of cancer cells received its name from an equally famous patient named Henrietta Lax. 

Anyway, you really don’t want mutated BRCA1 or BRCA2 genes, because they accompany (cause?) a high susceptibility to breast – and, as it turns out – ovarian cancer.  But, if you DO have OVCA (see: ovarian cancer, OVCA) you should then hope that you are  BRCA-positive, because (for reasons I don’t understand) BRCA-positive cases are easier to treat.  The article cited below relates how rucaparib, a PARP inhibitor developed by Clovis Pharmaceuticals has been so successful in treating women with advanced BRCA-positive OVCA that it has been granted fast-track status by the NCI and FDA.  If you know someone in that unfortunate category, tell them to hound their oncodoc to get them in a trial.

http://www.targetedonc.com/news/rucaparib-granted-priority-review-for-ovarian-cancer

Yes, I thought I had read this “news” before – and written about it.  17 months ago!  Boy, Clovis must have a skillful publicity guy!

http://ljb-quiltcutie.blogspot.com/2015/04/cancer-and-stock-market.html

CURE?

Linda contends with the cat from hell!

The latest Fred Hutch magazine has an interesting, but not very clarifying, discussion of what the word “cure” means in oncology.  The article infers that it is a statistical concept, but then fails to clarify.  That may be deliberate; real statistics would either drive us away or bore us to death.  I remember asking Linda’s oncologist about the possibility of a complete cure.  He did a verbal version of a soft-shoe Shuffle off to Buffalo dance routine and introduced the concept of “chronic disease” (see http://ljb-quiltcutie.blogspot.com/2016/08/a-new-approach.html).   I was so ignorant that I thought I’d received an answer!

Well, this Fred Hutch article provides a definition of “cure” that seems logical to me.  You are “cured” when your disease has disappeared and you are no more likely to see it flare up again than the general population is to get it in the first place.  That makes sense to me, although in practice it might be very hard to apply.  Here is a glossary of onco-speak from the article:

If the doctor says                                                            He/she means

Stable disease                                                                 Tumor constant in size or severity

Partial remission                                                             Tumor getting smaller and/or less virulent

Complete remission                                                        Tumor gone.  No evidence of disease

Cure                                                                                 No trace of tumor – which won’t come back*

For my money, the best way to judge how far out of the woods you are is to use a Kaplan-Meier curve based on plentiful data.  Such a plot illustrates the probability that someone with a given disease will be alive at various times after diagnosis.  (I wish to hell that I could draw – and post – an example, but I don’t know how. )  Anyway, plot the probability of being alive on the Y-axis and time on the X-axis,  The curve will fall off toward increased time, and (hopefully) flatten out eventually.  For a nasty bastard like pancreatic cancer it drops rapidly, then flattens near zero; for something like prostate cancer it falls off much less precipitously and begins to flatten out at a much higher probability.  Got that?  Well, never mind, just remember this:  if you have a disease and find that you plot on the near-horizontal part of the curve, for all reasonable purposes you can consider yourself cured

You can get the graph you need by going to the following:  

http://seer.cancer.gov/faststats/selections.php?  And fiddling around for awhile.

As an example, pancreatic cancer victims are “cured” by this definition at 12-15 years, but at that time only about 5% of them are alive.  OVCA patients are considerably more lucky.

*Don’t use this definition.  Use the one in the text, above.

VOLUNTEER? A confession.

Linda at the famous market in Otovalo, Ecuador

About 1988

The elevation there was over 10,000 ft.

Notice the small size of the people.  

When you read these blog entries, at times you may glance at the blurb printed nearby, which purports to explain what I’m on about, as our British friends might say.  Sadly, it no longer is completely true.  Only in a very restricted sense do I continue to volunteer at Fred Hutch or the Rivkin Center.  Advancing age and increased  traffic flow make it inadvisable for me to fire up my sturdy little jeep and tempt fate on I5.  I still stand ready to tackle jobs that I can do at home, but none such seem to materialize.  But I still write this blog, and I hope that counts..  

THE FDA AND USPSTF STRIKE AGAIN!

Cleansing ceremony before mountain adventure

As I prepared to construct this blog a powerful lot of extremely colorful language trickled through my head.  I managed to suppress most of it, but a bit may seep out from time to time.  Forgive me.

Jesus H. Christ!  The news today is that the FDA has joined our old friend the USPSTF in recommending that CA125 should not be used to screen for ovarian cancer.  Not even in its ROCA form.  Not even for post-menopausal women.  Not even if you toss in a family history of ovarian or breast cancer.  Not even if you are positive for BRCA mutations.  Not for nothing, apparently.

And the Ovarian Cancer Research Fund agrees, apparently. 

Add to that the fact that many (most?) doctors either don’t know the OVCA Symptom Index, or don’t think it works (see recent blog about Gilda Radner) and you arrive at the current situation: most OVCA sufferers are diagnosed in Stage IIIc or IV, and have at best a 45% chance of living five more years!

And why not use ROCA or some similar technique?  Cost!  False positives!  Hain’t passed the crucial tests with a high-enough margin of error!  (I just choked back a particularly harsh epithet.)

I appreciate the efforts of our medical experts to protect us from harm.  But can’t we put more of all that brain power and money to work doing something positive?  We could save a lot of lives if we could detect early stage ovarian cancer.  If we had a Cancer Czar, as I have suggested, he or she might be persuaded to make this a priority.  But with the present Moonshot structure – not a chance.

By the way, this being Ovarian Cancer Awareness Month, I will send you a classy teal pin, free of charge, if you promise to (1) wear it, and (2) email me your address.

http://www.foxnews.com/health/2016/09/08/fda-warns-against-widely-used-ovarian-cancer-screening-test.html

GILDA and GENE

First Wedding Anniversary

I had known that Gilda Radner died, at an obscenely early age, of ovarian cancer, but until now I had not realized that Gene Wilder and she were associated and that he spearheaded creation of the Gilda Radner Ovarian Cancer Research Program at Cedars-Sinai hospital in Los Angeles.  Linda, of course, would have known all about it, but lacking her it took Wilder’s death to alert me.  I have spent a frustrating hour trying to read about Wilder’s activism, but to little avail – obscenely irrelevant and obnoxious pop-ups invariably interrupt, just as I am making progress.  Damn capitalism, anyway!

But I seem to have determined that the poor diagnosis Radner experienced was the object of Wilder’s wrath.  Apparently Gilda complained for nearly a year of recognized OVCA symptoms: see

http://ljb-quiltcutie.blogspot.com/2012/09/ovarian-cancer-awarness-month-spread.html

She was told not to worry, apparently, and was offered neither a CA125 test nor an ultrasound.  When Medical Science finally caught on, she was stage IV.

Wilder says that neither he nor Gilda knew anything at all about OVCA symptoms.  Neither, apparently, did one or more doctors.  Those of you who do read this blog have no such excuse.  If your medical authority attempts to give you the brush-off you will, for God’s sake raise well- informed  hell!

Sometimes I wonder it primary care physicians aren’t unduly influenced by all the chatter about how much America spends on health care.  “Ultrasound and CA125 analysis cost money:  maybe we should just wait and see.  After all, there are only 21,000 or so new OVCA cases yearly, out of more than 100 million American women, so the odds are good”.  Please join me in saying, SCREW THAT!

Life is a lot more important than money.

So, I keep coming back to the thought that early detection is, perhaps, the most important current line of OVCA research.  It happens that Linda’s cancer might have been diagnosed early, but for an all-to-human medical error.  When she was diagnosed four months later she was stage IIIc.  She “let go of it (that fact)”, and thus so must I – but sometimes I find that hard to do.

So, thanks, Gene, for your help.  We’ll get the bastard yet!