Can Choosing the Wrong Shoes Reduce Your Life Expectancy?

I just had dinner with a newly-diagnosed lymphoma patient who had suggested a clinical trial to his doctor. His Doc strongly advised against it.  Good job.

What is the sound of one hand waving?

Clinical trials are best used for people like me, who have already pretty much run the gamut of standard treatment, and whose cancers are resisting all "normal" treatments. My chances of surviving cancer as a guinea pig outweigh the alternative, which is Surviving Just By Maintaining a Happy, Bouncy Attitude 
(aka "Static Wave of Vertical Springing Movements In Emoji-like Manner").  
I think Queen Elizabeth, God bless her, brought 'static waves' to an art form. She was Emoji-happy years before internet.

Newbies are wise to have clinical trials on their radar, but trials are really more of a last resort, not a primary treatment option. . .the stuff that your doctor orders is worth a try, and might have a 90% response rate. Trials don't know the response rate until after you've taken the trial, yeah? Could be 2%.

I finally figured out HOW to choose a clinical trial.
(If you're really interested in how-to details you can link to my pdf about Searching for Clinical Trials).  But suffice it to say that I chose the trial drugs I wanted, then found the closest hospital that offered those drugs.

There are a few steps to be taken before you get into a clinical trial. I think the first part is they check your sanity and ability to communicate. Then you sign the papers, get the blood tests, have a CT scan or a biopsy or whatever to prove that you have a nice cancer going. . .THEN you get to start the trial.

Hmm. . .looks promising!

So. . . I drove 5 hours from northern Virginia to North Carolina, and paid money for the clinical trial doctor visit, and the blood draw, and signed all the papers. The 'Financial Care Counselor' told me that if my insurance doesn't cover it, no problem, they'll put me on a payment plan that I can afford even if the bills get well into the thousands.  Happy Happy Happy.

Then came the stalling. . . The clinical trials team is facing a possible glitch in insurance, and say I'm the first self-pay patient they've seen. They say that the sponsor of the trial (Bristol Myers) demands insurance coverage. Then a couple of days later, no, it's actually not Bristol Myers, but rather their own hospital, that is having issues with my "self-pay."

But aren't I only responsible for paying for standard-care cancer treatment, and the drug company will pay for any extra expenses for their clinical trial drugs and extra tests?  I asked.

Yes,  they said.

So I cannot receive standard-care cancer treatment if I pay for it personally, because I'm also involved in a clinical trial? I asked.

Hmm. . . I think it would be hard for this hospital to justify that one. And they're evading answering that question.

Standard-care treatment for a broken arm is to take an x-ray and put a cast on it.
Standard-care treatment for the flu is to take your temperature and send you home with fluids and tylenol.
Standard care for cancer is a bit more complex, but it's all still according to the book.
Standard-care treatment is something that I did as a "self-pay" when I went in for my initial evaluation and doctor exam.  I am officially a self-pay patient in good standing now.
It seems that this hospital has lots of those.
 

Just trying to get treatment here. . .

So should I now be eliminated from a clinical trail because I'm a self-pay patient?  Does the National Insititute of Health support that? I don't know, but I doubt it.

It's enough to make your head spin

Head's up. . . if you have medical treatment in the USA, and do not have insurance but pay cash, they usually drop the bill down 25 to 50%.   Insurance, at a few hundred dollars/month, also demands you pay a fee for every visit.  So. . . If you see a specialist for $500, and your insurance charges you $300/month and a $200 deductible (fee) for that visit, you've just paid $500 cash to see your specialist that was "covered by private insurance". Get it?. 
But if you were uninsured and get the cash discount, you may only have to pay $250 total.

I have bigger problems. . .

Now that we have Obamacare in the USA we get fined for not buying insurance ("How can that be legal?" we ask. "Do we also have to purchase tea from Boston again?")  But if you're actually going to doctors regularly, the Obama fine + deductible + insurance bill is usually still more expensive than just paying cash with the cash discount (and affordable payment plans. . .us poorer folk have no hope of holding money "out" for a 12% return anyway). 

The clinical trial underlings were ready to denied me entrance to the clinical trial due to payment methods. So I took it up a notch. Then they weren't sure, then no. Er, yes. No. Dunno?
The woman who manages incoming patient finances called me.  She was lovely, clever, and kind. But she let it slip. . ."you could pay in advance for the CT scans. . ."
Is it your hospital policy to have patients pay in advance for standard-care treatment?  Blank. Switch subject quickly.


This North Carolina hospital has no record of my income, assets, taxes, finances, credit score, or resources.

I think that I was initially denied entry into this clinical trial because the trials intake staff are guessing that I'm a little financially shabby, and they're not allowed to ask if I am or not.
The answer would be "not," but they don't know that because they're not allowed to ask, yeah?
Now their Supervisor is looking-into-it-without-calling-me-back-as-promised. 
We've all met those ladies, right?  

I asked her about the self-pay policies, and whether self-pay precluded me from participating in a clinical trial there. We were all at that polite-but-taking-notes stage.
"We can't tell you ANY of our hospital policies," she said. 
Any? I thought. Really? Even the Slippery Floor policy?  I thought. Or the Fire Alarm policy?
"I'm going to e-mail someone to ask about our policies," she said
"Who are you going to contact?" I asked.
"I don't know." she said
"You're going to email them but you don't know who they are?"
"I won't tell you who I'm e-mailing for advice because I don't want you to contact them."   
Scary!
And THAT was the supervisor of the clinical trials team.  Not quite the Hope-Giver.

My life expectancy expiration date is July 2017, but my husband accidentally leaked out today that it's sooner than that.
One month of bureaucracy is 8% of my entire life (before hubby comment).  
In this month, my CA-125 cancer blood count has jumped from 95 to 185. 
In the time it took them to Not Act, my cancer load doubled.

I don't need to like this chosen North Carolina hospital. But they have the clinical trial drugs that I want, and I feel strongly in favor of my choice in clinical trials drugs. 
My Virginia hospital is lovely, but they are running out of FDA approved options for me, (we're on to the lesser-prescribed chemo that gains a couple of months, or hormone therapy which does not hold my vote of confidence at this stage, at this time.)
And my hospital doesn't have any immunotherapy clinical trials to offer. Darn it.

It just happened that I came as an anomaly to a private hospital that seems to be flexible, as are their fluctuating financial and terminal-cancer-caregiving policies.
But perhaps not so flexible if they guess you're potentially shabby.

Perhaps if I had spent a little less time working with my family and a little more time ordering shoes on Zappos I could have seen this thing through with more credible authority? I would have had the RIGHT strappy sandals instead of just color-coordinated flip-flops, reeking of poverty.

Unfortunately, my advice to cancer girls is WEAR THE RIGHT SHOES.   It might matter. 




Since I wrote the above, my lovely patient advocate got the ball rolling. 
Then the RIGHT person in the financial office called me a few days ago.
"This should only have taken a few days!" she said. "They should have given it to me!"

I got the call today. I'm in.  
A chance to be Not Dead Yet for a little while longer! (OK, only a 10% chance that  I'll respond, but it sure beats Zero!)

I should start my clinical trial Next Week!
And it's so hot outside that I'm going to wear flop-flops anyway.

Whatever it takes to keep cool, I say!

They cured AIDS? I Didn't Get the Memo

Somewhere along the line I have almost forgotten my goal, which is to be treated for cancer.

When you're first diagnosed for cancer, everyone around you, family, friends, medical people, all react very strongly. They're on it. 
You name it, they're there for you. Ask and it shall be granted.
And strangers jump in. They're there to help. Prayer teams just ask your name and they'll give you their all. 
Having terminal cancer isn't even a factor. I could have an easily-removable mini-lump and I think people would be just as supportive.  I LOVE all you cancer-supportive people. You give us faith in the entire human race, and your strength and positive outlook is so readily absorbed by those of us who need it. Keep it up, you're helping in so many ways that you'll never be aware of. Take it on Faith. . . and keep going.

As the cancer patient here, all of this confuses me mentally in so many ways. I feel like a superstar, but it's only because I've shown my mortality so blatantly.  That's OK. . . I love the help, I love the prayers, in whatever form they may take. They all work.

Yesterday I talked to an old close friend from my days in San Francisco. He has been HIV positive since the 1980's. Back then, I was reading "And The Band Played On," which is all about the beginning of AIDS (totally great non-fiction classic!). Which boasted Doris Ober as an editor.  Who is a heritage-breed goat associate of mine, and who kindly just mailed me a copy of her new book, "The Alzheimer's Years."  She's so on it.  And she writes brilliantly. . .
Doris is such an insightful writer of cutting-edge issues and writes so fluidly and engagingly. Get the Book!

Old San Francisco friends remember when AIDS was big, but ARC (Aids Related Complex) was considered to be somehow different and lesser. Then they decided that ARC was a bit silly, because it was really AIDS after all. Then, the byword was "HIV positive." And I lost it from there--I moved away to the boonies and became a wife with kids and different concerns.

So yesterday, with my newfound confidence, I was hoping to maybe tell my HIV-positive friend how to navigate clinical trials. I started by talking about T-cells with cancer.
It turns out that since the 1990's my friend was treated for HIV in a way that now he tests negative for HIV (and continues to do so).   T-cell stuff is old news.

Wow. They cured AIDS without my knowing? I don't follow the news, but you think that it would have passed along somehow? THEY CURED AIDS? Really? But then another friend implies  maybe not. . and he's a public health specialist in San Francisco. I can't wait until he comes to visit (late June!) to explain all of that.

So I still have stage 4 low grade ovarian cancer. Could they cure that also without my knowing?  YES.  Yes, they could. Some people just lose sight, lose the fight, or maybe just don't know how to keep looking. When you "sign up" for cancer, nobody sends a note in the mail saying "BTW we cured that". 

A decade ago I spent 2 hours per day with the ear-shattering screaming of a colicky baby, but a few months after these penetrating, hearing-damaging cries lightened, I met a parent in the local pharmacy with a similar child. Picking up their colic meds. Oh, they have stuff for that now?

I didn't get the memo.

I am resuming my attempts to find ways to combat my cancer.
Thank you, Julie, for such  a strong message of "Don't Give Up!"

Trial an Error--Be Your Own Avocado

OK, for those of you catching up or joining in . . .

After being diagnosed with stage 4 ovarian cancer a couple of years ago, and having EVERYTHING removed, (even "AAppy" my Adorable Appendix), I did a couple of rounds of chemo, mixed with clinical trials, and recently the Milo/MEK  (rhymes with  "I know, Blech!") clinical trial.

My current medical program is "Try a treatment until it fails, then try another until it, too, fails."  
My life expectancy is summer 2017. That's when they run out of stuff to try.  For Low Grade Stage 4 Ovarian Cancer, death is expected but we get a couple of pain-free fun years first.

Am I discouraged? No way! But y'all understand "dog years". . . I now mirror hamsters, for whom one year equals 50 human years.  But hamsters have the right idea:
Pack it all into the cheeks and let the rest go!   
And what woman over 50 wasn't already thinking that anyway?     Omm. . .Hammy. . .Omm!

Sleepy, Zitty Girl Quitting MEK

And so. . . there was a local woman on the Milo/MEK trial whose stage 4 ovarian cancer tumors disappeared because of MEK, and she's still happy as a clam, cancer-free after over a year on Milo/MEK. YAY!! 
We can't even begin to feel as jubilant as her family who loves her dearly. Wow. Great job!  Keep on going!

I didn't get the same result.   At all.   My tumors kept growing with MEK. The rash was so bad I couldn't move properly. I couldn't stay awake more than 8 hours a day (did I mention I'm a mommy?)
So I quit the trial.  Acne-Be-Gone!

OK Doc, what next?

Doctor offered another chemo (obviously not first choice, I tried and failed those), or (obviously also not first choice) hormone therapy. Or a clinical trial for another toxic drug that tends to compromise your immune system.
"But I want immunotherapy."
My medical team was sorry that they had no immunotherapy medicine or clinical trials available at their hospital for my ovarian cancer, and wished me luck in my search.

And with that, I was on my own.  

The clock is still ticking

My husband was surprised. The hospital had, 2 years ago, rushed me into surgery. They then rushed me into chemo. They zipped me back into chemo as needed. But now, they're not so quick to ask if I've managed to find some clinical trial immunotherapy treatment or whatever.  

You'd think they'd say "OK, but come back next month anyway so we can check you over." 
Nope. 
"And let's make sure you have your port flushed so you don't die of a port infection." 
 No alert came in. 
Or at least " Call us and let us know how you're doing, and whether you found something." 
Nope. 
Or, "Here's a couple of phone numbers to help get you on your way." 
Nope. Nada. Nichts. Sayonara! Avocado!

To be honest, when I last talked to my doctor I didn't even actually know what, exactly, immunotherapy is.   
"Maw, Paw, Ah'm a-goin' out to look fer gold in Californ-y. Never seen it, don't know how they git that gold, but ah'm a-goin' and maybe ah'll get rich from gold."
"OK Bye, Honey! If you ever need us to forward your medical records, be sure to write!"
Maybe my perception was off.  I mistook health-givers for caregivers. And that mistake made me feel somehow excommunicated when, in one day, they pretty much let me go solo to chase a rainbow. And my time is running out. A day spent in trying-to-figure-out-who-to-call-for medical-treatment is a LOT of time when you only have a year left. It took me weeks.

PTSD (post traumatic stress disorder) thankfully isn't kicking in right now, because I'm still in the fight for the next stage, which seems to be entirely dependent on self-motivation but it's certainly within sights. Maybe that's a key to kicking PTSD. I can stress-out my own self now; my trauma can be self-induced. I'm free, my serious threat stems from me only.

I understand that my perceptions of the delinquencies of my own actions to combat and survive cancer still exist, and my cells are still under siege. But I am changing the focus, gradually making it more positive if not less intense. I'm turning self-doubt into positive activity, I'm walking away from toxic cures in order to focus on cures that come from within myself.

So with tumors growing and no real future plan, off I went.

I AM my own avocado

And I avocado for others too

People always say "Be Your Own Advocate."  
But if you're like me, and visualize spoken words as written, but are also a little dyslexic, it's hard not to interpret that as "Be your own Avocado."  
Really? Truly?  
Yes. I need to be my own avocado, and so I shall be.  
"Think Green" has a whole new meaning now.


On My Own?
So off I went with a limited (and possibly skewed) vocabulary, no science background, diminished energy, and my dream for immunotherapy that was a bit too nebulous and uneducated for any real action. I wanted it but didn't know why or how to get it.
What the heck IS immunotherapy? Sure, we can guess that it's when your immune system somehow fights cancer. 
But it's not an address that you can plug into your GPS: I was wishing and walking in a fog with dreams and no direction.  
Wow!  Fifteen again! Cancer keeps us young. 
And growing.   Yup, my tumors are growing.

My sisters all grew up to be really effing clever.

I got on the web and searched immunotherapy stuff, but most of it is written by scientists for scientists and I panicked, and hit a mental roadblock. I just didn't get it. PD-L1 ligands, monoclonal antibodies, CTLA-4, G2 DNA, antiangiogenics. . . Eek!

So then I did what all savvy girls do. . . I called my big sisters. I told them that I didn't want web links, I needed them to figure out the basics for me and to put it all into really simple terms so that I could understand it all.

Love those sisters! In no time flat they got me through the basics of immunotherapy, and once I got my basics down and my self-confidence back, my learning curve surged up, and I could begin research on various immunotherapy types, and drugs, and their bio effects. 

 

When I began my search for immunotherapy, I had no idea what "NIH" was. It turns out that it stands for the National Institutes of Health. 
It's like a HUGE University, where every building is for a different health issue. The National Cancer Institute is one group/building there, and I think there is also a National AIDS Institute, etc.   
Anyway, this huge facility, run by the USA Federal Government, is in charge of all  USA clinical research trials.  If your research on mice went well and you want to test it on humans, you HAVE to go through NIH. Trials on humans go through a few Phases, and after success on all 4 or 5 phases the Food and Drug Admin (FDA) will approve the drug, and then doctors can prescribe it.
NIH is "Clinical Trial Central."  Ta-Da!   And less than 2 hours' drive from my house!

Road sign at NIH facility. . . I hope they aren't all quacks!

Lofty view from NIH clinic

But you know what?  NIH can't do EVERY trial there, because that would skew results, yeah? Trials need to be ongoing in lots of different places around the country.  Sure, that makes sense..
But at NIH, the central authorizing agency of every friggin' trial in the USA, they'll only discuss trials that they are doing at their own hospital, and won't discuss the other dozens of trials available nationwide that might be more suitable to my particular needs. 
So if you go in and say "Oh my goodness you guys approve any and all clinical trials for cancer patients, and I really was hoping for blah and blah blah" your request will fall on deaf ears.  
Like my own hospital, if they're not offering it, they're not offering it.   Period.  On your own. 

It's all new, but CAN be understandable

But they're not stupid, either. 
So this is how I worked it:
I contacted EmergingMed (private USA company that matches clinical trials with patients, with no cost to patient).  They matched me with 17 possible clinical trials in my area.
I researched every drug listed on all 17 clinical trials (YouTube, cancer.gov, NIH Dictionary) and put them on my own personal drug list in alpha order. By the time I had done THAT, I knew what most of these drugs were or did, but I didn't understand all of them.

NIH searches cars, bodies, purses

When I went to NIH, I had a working vocabulary of what they offered, and loads of simple questions which they could answer in simple terms. Bless their hearts, "simple terms" is a challenge in their field, but they did well.
By the time we left, I knew what we needed to know.

I have a "dream cocktail" of immunotherapy drugs.
By prescription, they are not available for ovarian cancer, although they are FDA approved for other cancers.   
Some of the cool ones are available as clinical trials, but you're also not allowed to add other meds when you're on a clinical trial. So my cocktail is possible, but can't be met. Yet.

While we were walking out of a day-long meeting with NIH people, we met a woman who was just about to start her clinical trial, HuMax IL-8 (an immunotherapy). Turns out we have the same cancer (low grade ovarian is very rare). Her treatment was on my list of questions but somehow we missed it.  In turn, this lady had never heard of the clinical trail that was presented to me as the only low-grade ovarian cancer immunotherapy available.  Hmmm. . . Fishy?

I didn't get my ideal immunotherapy cocktail. We'll probably sign up for the clinical trial that NIH offered but we will continue to shop around fairly aggressively until we find the right treatment match.    
I'll actually fight for that, if my kids and hubby lighten up the load a little so I CAN research and do that.  Or, my entire life might be lost to picking-up and laundry. And honestly I don't think I'd be the first woman to die for that reason.
Perhaps, in the meantime, a strawberry daiquiri cocktail will suffice. . . 
Here's me, after the NIH day, at the BEST Thai Restaurant nationwide, Bangkok Gardens in Bethesda. NO atmosphere, great service, but every single hint of flavor was more perfect than you could hope for. And every flavor balance was in tune. It was the oral equivalent of the best orchestra you've ever heard.