Saturday, February 28, 2015

Anti-PD1 trials and tribulations: Scans...

Have I mentioned lately how incredibly much I companies?  I HATE INSURANCE COMPANIES!!!  ALL of them.  I have paid insurance premiums for myself and my family since I was 18 years old.  I had basic regular checkups.  I had two completely normal pregnancies and deliveries.  I have been in the emergency room once with anaphylaxis to pecans, was given epi and sent home.  I have managed my asthma well through meds and exercise and have had only one doctor visit and chest X-ray due to complications.  My children had basic well child care, a couple ear infections, one rash and three ER visits between them.  My husband sees his doc once a year.  That's it.  And despite my melanoma crapola...BCBS and for a brief time, Alliant, STILL MADE MONEY on us!!!  MADE MONEY!!!!!  Yep, I actually did the math!

One of my first horrible exchanges with an insurance company was not about me.  As nurse manager for a pediatric office and coordinator of care for the more complex patients, I was setting up planned transfusions for a little guy with sickle cell disease.  As I'm sure most of you know, in sickle cell disease, red blood cells are crescent shaped, rather than nice fat round ones that can't get tangled up with one another.  Unfortunately, patients with sickle shaped cells do have clumping which can cause a crisis as these cells jam up in joints causing pain, or in organs...causing lack of blood flow and ischemia past the "clump".  If that happens in your brain, you can have a stroke...even if you are only 8 years old!!!  But, if you give patients transfusions of healthy circular red blood cells you can decrease the clumping!  Back to my story...while setting up the transfusions, I had to deal with the insurance carrier, cause Lord knows!!! - you can't just do what is right for the patient!!!  I turn in the requisite paper work.  I send in the patient's history with documentation of need.  DENIED!!!  I call.  Speak to a total bitch, who tells me that transfusions were not indicated for this patient's condition.  I asked, "His condition being sickle cell disease, from which he has already suffered a mild stroke?" She replied, "Yes.  Transfusions are not needed in sickle cell disease."  "Ma'am," I said, "What exactly are your credentials?"  "Oh, I'm a nurse!" she said.  "Really????" I say!  "Did you PASS boards???"  After going crunk on her ass and I don't know whose else, yes, the transfusions were approved.  Poor, little Frank.  I loved him and his family very much.  If only that had been the last patient I had to fight with insurance companies for!

But...back to my continued hatred....  SO.....on Wednesday a very sweet girl who works in the imaging department where I have been having CT's with contrast of neck, chest, abdomen and pelvis and an MRI with/without contrast of my brain every three months until I graduated to every 6 two years ago, since 2010, called to tell me that the brain MRI had been denied by my insurance.  (And NO!!!  These studies ARE NOT paid for by my trial, though they ARE REQUIRED by same!  Just so you know!!!)  She had provided every bit of info they requested, fought with them, had gotten them to approve the CT of the neck which they had also denied (though they had approved the others - go figure!) but could not get them to budge on the MRI.  She apologized, but there was nothing more she could do.  I call.  Not a human who actually makes decisions, mind you.  Not even a person who works for BCBS, my insurance carrier.  But, a person employed by a company BCBS has outsourced their REJECTION work to, Med Solutions.  Solutions for whom, I wonder????  She was a fake automaton who said when I inquired, that my MRI had been denied because they were not indicated more often that every 6 weeks.  Well, that's just fine honey, cause I haven't had one for 6 months!!!  Oh, oops...let me look, well no...then it was denied because 'the patient' (Yes, she actually said that...while talking to ME....THE PATIENT!) has no symptoms of a problem with their brain, despite previous brain tumors, and MRI's are not indicated just to see if a treatment is working.  WHAT the F&*#!!!!?????

Bottom line, B called my local onc, who called some A$$H@L# at Med SOLUTIONS and got it approved.  I would for an insurance company!  Don't tell me about how the woman I spoke with is just trying to make a living and didn't really make the decisions.  I know that.  Still...I would NEVER any capacity...for an insurance company.  I would clean mortar from used bricks, clean blood and muck from dental spittoons and other folks nasty toilets and something else on the side, if that's what it took to feed my family, before I would work for an insurance company. WAIT!  I've already done all those things!!!  Hmmm.....well....MAYBE....I would work for an insurance company...for ONE DAY!  What a day it would be!!!!!!!!!

Anyhow, rant over.  No...just paused....for now...

MRI of brain = clear.  Same holes.  This rattie has a brain like Swiss cheese!  Guess that's fitting.  Rest of bod.....same bumps and baubles.  I think radiologists compete with prior readers (No, Virginia, you never get the same one.) to find 'one more thing' and provide a GIGANTIC list of everything it could POSSIBLY be...including tumors...rather than a definitive diagnosis.  This one did.  A little lumpy thing on the right chest, very close to the surface, that B confirmed has been there for years, which the radiologist noted as well, and in OUR humble opinion is probably scar tissue from a clamp placed during surgery to remove the right upper lobe of my lung.  Anyhow, Weber and his peeps will get the final say...but all appears to be clear from melanoma.  Sooo...there!!!

What do you call a doctor who hedges his bets?  A radiologist.
What kind of sandals does a radiologist wear?  Flip flops.
What kind of doctor is always in the dark?  A radiologist.

You get the idea.  Sorry you rad guys and girls.  Some of you are brilliant, helpful and kind.  But, you ALL make really long lists of possible explanations for things you see on film.  I could have provided YOU that differential when I sent the patient in!!!!  You're supposed to help NARROW that list!!!

It's been quite a week.  May your scans be clear, your insurance company from another planet (cause they all suck on this one) and your radiologist have excellent vision, dedication, and precision.  Much love - c

Friday, February 27, 2015

On scan day, and everyday.....

Adam Levin - Lost Stars

You and me, baby!!!
Please don't see, just a [girl] caught up in dreams and fantasies
Please see me, reaching out for someone I can't see
Take my hand let's see where we wake up tomorrow
Best laid plans sometimes are just a one night stand
I'll be damned Cupid's demanding back his arrow
So let's get drunk on our tears and
God, tell us the reason youth is wasted on the young
It's hunting season and the lambs are on the run
Searching for meaning
But are we all lost stars, trying to light up the dark?

Who are we? Just a speck of dust within the galaxy?
Woe is me, if we're not careful turns into reality
Don't you dare let our best memories bring you sorrow
Yesterday I saw a lion kiss a deer
Turn the page maybe we'll find a brand new ending
Where we're dancing in our tears and
God, tell us the reason youth is wasted on the young
It's hunting season and the lambs are on the run
Searching for meaning
But are we all lost stars, trying to light up the dark?

I thought I saw you out there crying
I thought I heard you call my name
I thought I heard you out there crying
Just the same
But are we all lost stars, trying to light up the dark?
But are we all lost stars, trying to light up the dark?

Love you, Bentie - les

Wednesday, February 25, 2015

Love for my J's....

I have many precious folks in my life, but several are my J's!  I am a lucky girl!  I thought of you all, today.  Not trusting myself to express what I really mean....I looked to others to help show you my heart.  I am still not certain my words adequately express the appreciation I feel for what each of you have endured and the generous support you share with me....but this is for you....

For J....
As William Feather has said, "[The way] to get the most out of life is to look upon it as an adventure."  Something you have done in spades, my friend!!!  Sarongs.  Travels.  Melanoma trials, misfires, and misfortunes.  Yet, you have never bemoaned your fate, nor allowed pain and misery to change your sweet, funny, loving disposition.  I love your new opportunities for adventure.  Just keep the speed demon under control!!!  Enjoy!

For J....
Dad gum, girl!!!  You must have a thing about your right side and shoulder!!  So sorry for the recent accident and the pain and trouble it has caused you.  You have endured so much!  Surgery, radiation (coming to work right after!!!!), eye injections!! Our talks and your example have provided guidance and encouragement as clearly as a light removing shadows from my path.  Like Agatha, you have shared a similar spirit:  "I have sometimes been wildly, despairingly, acutely miserable, but through it all I still know quite certainly that just to be alive is a grand thing."  She may have written it, but you have lived it.  Someday, I will grow up to be as brave and strong as you.  Thanks for sharing your strength with me.  Now!!  Get better!!!!

For J....
I know that for you, this is a day of sorrow and loss that I cannot fully appreciate.  It seems that Rilke thought of you when he shared...."There are no classes in life for beginners; right away you are always asked to deal with what is most difficult."  And so you do...beautifully, lovingly, and well.  Photos, especially those taken by those who love us, really do offer a window into the soul.  I have seen photos taken by you, of your love, that clearly say.... "I am loved.  I am happy.  This woman knows my heart and it is good."  You did that.  And so much more.  For so many.  Even me.  May your heart continue to heal and your memories become sweeter with every passing day.

Much love to you all.  I hold you in my heart.  Thanks for sharing you with me. - Celeste

Friends open the door to my heart.

Sunday, February 22, 2015

Winter games...

As always in life, regardless of season, this winter brought births and losses.  Beautiful times.  Frustrating moments.  I've ellipticalled more often than run outdoors; usually 4 times a week.  I've dealt with mercifully brief bouts of rashes and mouth ulcers.  Work has been busy.  Lots of little critters sick with flu and other bugs, yet still fun with the exuberant spirit of childhood. For instance:  my greeting to a particularly bright 4 year old.... "Oh, no!  Are you feeling bad?"  Impressive snorting and dramatic swallowing of mucus is exhibited, followed by careful placement of busy, slightly gooey hands about 1 1/2 inches apart.  "Not real bad.  I'm only this much sick!"

 There was winter weather.....
Ice, ice baby!!!
Sewing...two practice dresses to get acquainted with my serger and this pattern so as to be brave enough to address print placement and cut into the fabric Ruthie gave me....  But, I did it!!!


Dinners with friends...
Playing with ever...but with large thanks to a dear one who gave me:  World Spice at Home, by Beville and Hearne.  Love it!  Thus far it has produced:
Five Seed Roasted Potatoes...which I really liked:
2 #'s small potatoes   2 T olive oil    1 t  mustard seeds   1 t nigella seeds
1 t cumin seeds     1/2 t ajwain seed     1/2 t fennel seeds     1 t Kosher salt
Oven at 425.  Blanch potatoes for 8 minutes, drain.  Toast the spices in oil until you make a big mess. Toss potatoes with spices and oil.  Spread in one layer on baking sheet and roast for 20-30 minutes.  Sprinkle with salt and pepper.  Yummy.  (Though I must confess, those pictured are only 4 Seed Potatoes, as I did not have the ajwain seeds at that time!  But, I do now!!!) 

Rosie's new fav:  Honey-glazed Eggplant with Ras el Hanout...
Ras el Hanout is a blend of spices (22 in my cookbook!!!) that originally, spice merchants in North African bazaars combined, each making it a little differently, and sold as "head of the shop"!  Luckily, you can find the blend ready made in shops like World Market. 
1/2 c honey     1/2 c olive oil     1/4 c white wine vinegar     1 T ras el hanout
1/2 t Kosher salt     4 small or 2 large eggplants, cut in half moon slices
Whisk ingredients, except eggplants, together.  Toss the eggplant slices in mixture and let sit, stirring occasionally to coat, for an hour or so.  Sear in single layer in hot skillet, though you have to be careful not to let the honey burn, flipping pieces from side to side, until golden and soft.  You will probably have to do this in batches.  Place them on a greased baking sheet as they are done.  Once all are browned, drizzle any remaining sauce over.  They can be done ahead by several hours to this point.  When ready to in hot oven (400) until sizzling.  Yummy.  Sweet and spicy!

More Sewing with skirts made for Roo...
Five Days at Memorial, by Sheri Fink.
The story of that hospital and its occupants during Katrina.  Let's just say: it did not go well!  Here folks had the worst outcomes of the many caregivers and patients who found themselves trapped and desperate during that horrible storm. Suffice it to say, that I can almost (ALMOST, mind you!) comprehend the thought process behind the alleged "euthanasia" that went on at Memorial better than I can tolerate the complete abandonment of care that so many of the doctors and nurses at that facility adopted...from the start!!!  Hell, we send medics into war zones and THEY manage!!!!  It is an incredibly researched, well put together story...but, don't read it unless you're willing to be supremely frustrated!!!

The Immortal Evening, by Stanley Plumly.
The story of a legendary dinner in 1817, hosted by the painter Benjamin Robert Haydon and attended by John Keats, William Wordsworth, Charles Lamb and sundry others....all seated in a large room with Haydon's painting, Christ's Entry into Jerusalem, hanging behind them.  With the guests not only present for dinner, but as part of the crowd in the painting as well.  The book required a great deal more work than a normal read in order for me to appreciate the characters and events. For instance, I learned:  John Keats, think Ode to a Grecian Urn, was a licensed surgeon, and earned his keep that way.  However, he suffered bouts of depression fearing he would never be a poet and died at the age of 26 from TB.  Wordsworth [Remember...I wandered lonely as a cloud...???] was a long-lived pompous old goat who brooked no interruptions or criticism, dying at age 80.  Lamb was a writer and essayist who stuttered but paid bills for himself and his crazy ass sister who killed their mom with a kitchen knife when they were in their early 20's, through his work in an accountant's office.  He never married and took care of his sister his entire life.  I might have to read some of his writing.  He was quite witty and one of his essays is titled:  "Lawyers, I suppose,were children once."  Joseph Ritchie, another MD, stopped by the gathering just before his adventure to find the source of the River Niger during which he fell sick and died.  And then there's Haydon.  A man deeply in love with his wife and children, but the worst provider EVER, focused as he was on his desire for gigantic canvases painted with religious histories...that NO ONE wanted to buy, rather than on paintings of the day and portraits at which he excelled!  He spent time in debtors prison on at least three different occasions.  Shockingly, his plight worsened after every visit.  He was a very good, popular writer/lecturer and a sought after dinner guest being well read and entertaining in this time before TV and internet.  He finally did himself a fashion fitting how he his studio after his last showing had done less well than PT Barnum's exhibition of Tom Thumb. Initially - unsuccessfully - shooting himself in the head, followed by cutting his neck in one direction...again unsuccessful....finally, in the other he attained his desired end.  However, he will be forever owed a debt of gratitude that I cannot repay.  His admiration for the Elgin Marbles, hidden away in an old barn and then in a backyard garden, led him to petition for and succeed in their preservation as well as the creation of the British Museum!  A more magnificent place I don't think I will ever see.  (Yes, better than the Louvre!)  While I can certainly argue that the Elgin Marbles belong in Greece, at least they are not languishing, hidden from all, in a barn!!! So....not sure if this sounds like a recommendation....but it is!

There was a re-read of All Over But the Shoutin', by Rick Bragg.  'Cause that boy can tell a tale and it sounds like home.

And the discovery of a tiny little book, Three Men in a Boat, by Jerome Jerome. I know, his parents didn't like him. Maybe it's just me, but I found it funny as hell.  Yeah, probably just me.  But...give it a won't waste too much of your time.

There was writing....  Lots of writing. (More to come on that one!) Organizing and researching of melanoma articles.  My personal cookbook - re-done - as it was suffering from all manner of scribbles and notes stuck in.  A French Cookbook from a little place my friends visited years ago...left in my care to translate with almost finished.  Sorry, Kay!!!  Bet you thought it had been swallowed up!!!  But, no!!  It has been well cared for and will soon be done!  And, Eric...your question has not been ignored!!!  I have been diligently putting together information on anti-PDL1: MEDI4663 and MPDL3280A.  A post is coming soon, I promise.

As more scans and another Tampa journey approaches, Spring will come, we will March Forth, and all the ice will be but glistening, fragile memories....
Happy matter the season - love, c

Wednesday, February 18, 2015

To everything there is a season....

To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, a time to reap that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together;
A time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.    ~ Pete Seeger

Zeno.  The sweetest pound puppy ever.  Your laughing face made me smile.  Your eager loping run kept me going.  Your ultimatum was loud and clear:  "We don't leave our people behind!" You will be missed my friend. - c

Friday, February 13, 2015

I swear, I lived!

I've taken care of so many kids with cystic fibrosis...too many.  And while treatments and prognosis have improved, it is still a horrid disease.  But in caring for these kids, I met some of the bravest, funniest, and most amazing people the world has ever known.  Melanoma has been like that, too.  It has cost me much.  Yet, there are beautiful, strong people in my life I would never have known without it.  I work hard to learn from all the incredible survivors I have been blessed to know.  Life can sling shit with a shovel.  Despite what has come my way, I hope I have lived.  I hope I have shown at least some of you, that life CAN be LIVED, no matter what.   I wish this.....for you.......

OneRepublic - I Lived

Hope when you take that jump
You don't feel the fall.
Hope when the water rises
You built a wall.
Hope when the crowd screams out
They're screaming your name.
Hope if everybody runs
You choose to stay.

Hope that you fall in love
And it hurts so bad,
The only way you can know
You gave it all you had.
And I hope that you don't suffer
But take the pain.
Hope when the moment comes,
You'll say.....I, I, I, I did it all.  I, I, I, I did it all!

I owned every second that this world could give.
I saw so many places, the things that I did,
Yeah with every broken bone,
I swear I lived.

Hope that you spend your days-
That they all add up.
And when that sun goes down
Hope you raise your cup.
I wish that I could witness, all your joy

And all your pain-
But until my moment comes
I'll say.....I, I, I, I did it all.  I, I, I, I did it all!

I owned every second that this world could give
I saw so many places, the things that I did,
Yeah with every broken bone,

Thanks to all of you who make my LIVING possible.  Thanks to OneRepublic.  Blessings to Bryan.  Dude, you have owned every second!  We should ALL live like you!!!! Love - c

Monday, February 9, 2015

#immunotherapy #NPR #mainstream????

Heard this on NPR on my way to work this morning.....

A report on the amazing progress that has been made in utilizing the immune system to fight cancer.  Not a terribly scientific explanation, but a very accurate and understandable one!   Way to go Rob Stein!

"Immunotherapy for cancer means developing treatments to harness your immune system and using your own immune system to fight the cancer," says Dr. Julie Brahmer, an associate professor of oncology...  
Scientists have been trying to do this for decades. After all, our immune systems can fight off all kinds of health threats. So, why not cancer? But nothing seemed to really work.
"It's been very frustrating," Brahmer says.
But scientists recently discovered that cancer takes a page from Harry Potter: It puts on a kind of invisibility cloak.
"Cancer can keep the immune system from recognizing that it's bad and keep it from attacking itself," Brahmer says.

Now scientists have found a way around this. 
"The breakthrough is in therapies called 'checkpoint inhibitors,' " Brahmer says.
Check point inhibitors are drugs that pull off cancer's invisibility cloak by blocking the switch that turns it on.
"It prevents that invisibility cloak or that force field or shield ... from going up," Brahmer says, "so it can't shield itself from the immune system."
And these drugs seem to be working, at least for some patients — melting away the toughest tumors, such as some melanomas, the deadliest kind of skin cancer.

Checkpoint inhibitors can cause serious side effects when the immune system attacks healthy cells, causing dangerous, even sometimes life-threatening organ damage. But so far that appears to be relatively rare.  Most patients just get a little tired. Some...get an itchy rash. But compared with traditional chemotherapy, it's easier in most cases.
"You can live a great life," Brahmer says, "travel and try to live your life as normally as possible. That's definitely different than chemotherapy."

One big question is, how long will these drugs keep working? Traditional chemotherapy often stops working with time — the length of effectiveness varies depending on the patient, the type of cancer and the stage at which it was diagnosed. But so far checkpoint inhibitors seem to keep going a lot longer, even in patients who have stopped responding to standard chemotherapy. No one knows yet how much longer.  But Brahmer says so far it looks promising.
"We're reporting three-year survival rates in [lung cancer] patients who we would say typically should not be around," Brahmer says.
For melanoma, researchers have followed patients for even longer, she says.

But another big question about these drugs is how much they cost: more than $120,000 for each round. That has drawn some intense criticism.
"Cancer immunotherapy is the most exciting thing we have going on in the field," says Dr. Peter Bach, director of the Center for Health Policy and Outcomes at the Memorial Sloan Kettering Cancer Center in New York. "It's frustrating that the companies are gouging the U.S. system with their prices."  The companies that make checkpoint inhibitors defend their price tags and say they will help make sure patients can afford them.
"Any patient who needs access to a checkpoint inhibitor made by Bristol-Myers Squibb will have access through a robust patient-assistance program," says Michael Giordano, who heads oncology drug development at the company.
Brahmer hopes doctors will figure out a way to cut the costs and says patients may not have to stay on the drugs indefinitely. That's because when patients stop taking them, immune system cells known as T-cells seem to remember how to keep the body cancer-free.
"We think that over time your immune system creates memory," Brahmer says.
The T-cells remember how to attack the tumor and stop the cancer from putting up a shield. "So those T-cells continually keep that cancer under control. Even without treatment," Brahmer says.

Brahmer knows she and other researchers will have to treat many more patients for a lot longer to really know just how well these checkpoint inhibitors work, and for how long. Many scientists suspect it will take a combination of checkpoint inhibitors to get the most out of our immune systems to fight cancer.
"We're trying to figure out how to personalize this treatment," Brahmer says. "Who needs just one checkpoint inhibitor? Who needs a combination to really unleash the immune system? That's where this is probably headed."

Well!!!!  LOOOOOVE the Harry Potter reference.  Not sure why it's up to docs to cut costs since Big Pharma sets drug pricing and reaps the benefits.  Glad to hear an echo of what Weber has been saying...that one need not take immunotherapies forever....that the T-cells can learn from and remember their mistakes.   Really LOOOOOOVE that BMS will make sure that anybody who needs it will get the medicine!!!!   Hmmm.....  Sat by a lady with lung cancer getting her infusion of anti-PD1 (nivolumab, now opdivo) while I got mine...almost 2 years ago.  (I think about you often, my dear.  Read the book you recommended.)  What a tangled web we weave.  Had been wondering when these drugs...pretty certain that Nivo was the drug being used in this article....would hit the mainstream news. Such an improvement in options since 2010.  Soooo not enough.  Thanks to the thinkers who think.  Thanks to the ratties who stand, endure and demonstrate.  Thanks to the supporters who pull us through. 

Doors open sometimes.  Much love - c

Thursday, February 5, 2015

Ipi, Nivo, Combo and Radiation for patients with Melanoma Brain Mets!!! Finally!

New Trial for patients with brain mets in AU

This report is poorly written, and a little ambiguous, but it seems clear that this trial has begun treating melanoma brain met patients.  Patients are given either Nivolumab (Opdivo) alone or Nivo combined with ipi (Yervoy) best as one can tell....Nivo combined with radiation.  How the radiation is added and with which drug is the part that is a little unclear.  But either way....I shout...YAY!!!!!  It's about time!!!!!

I've been yelling....YES, NIVO AND IPI CAN WORK IN THE BRAIN!!!!!

Overview of effective brain met treatments

More brain met data from 2013

anti-PD1 works in the brain!!!

And when you add radiation:

ipi and radiation

SRS and anti-PD1

Outcome with stereotactic radiosurgery and ipilimumab for malignant melanoma brain metastases.  Abstract from ASCO 2014.  Shoukat, Marcus, Rizzo, et al.

Patients with melanoma brain mets who underwent SRS between 1998-2012 (n=176) were compared to those who additionally received ipi (n-38).  Median overall survival for the cohort was 9 vs 7 months in the non-ipi group.  Patients in the ipi group had a median survival of 28 vs 7 months in the non-ipi group.  No increased toxicity or need for repeated SRS in the ipi group.  Conclusion:  SRS with ipi appears safe and associated with an increase in overall survival in patients with melanoma brain mets.

Results from the folks (like me who had had brain mets) in my NED Nivo trial: Me and my fellow 33 ratties...our Nivo trial results

And finally....bigger folks than I ask the question.... Should melanoma brain met patients be allowed in trials?

YES, YES, YES, YES!!!!!!!!!!!!!!!!!!   Hang in there ratties!!! - c