Dear MISTER SASB: My grandmother’s got stomach cancer. She’s had surgery, drugs, and chemo. Now the doctor says she should get hospice care which totally (if it’s okay to say) sucks big time. Grannie taught me to read and to ride a bike and even how to cut cocaine. There MUST be something they can do! –  Nancy Trill

Dear Nancy:

It sounds like yer granny could open up her own pharmacy.

Anyway, to answer your question, her Docs COULD get your granny hooked up with a clinical trial that offers some new hope. But they probably won’t. Denise Mann (Web MD) says most patients who could qualify for clinical trials, won’t even hear about them. At least, not from their own doctors.

This doesn’t mean doctors are a bunch of bums. The ones I’ve worked with (and consulted) are almost uniformly terrific. They work hard and they’re, mostly,  very smart. BUT they are human (surprise!). Just so many hours in a day. Just so many dollars in a paycheck. They can’t be everywhere. Can’t do everything. Gotta go home sometime. And this has a lot to do with why they’re shy about introducing their patients to clinical trials. Keeping up with 8,000 trials is SLIGHTLY impossible. When would that “keeping up”  happen? Before 5 AM? Or after 2 PM? Medicine is intense. The hours are long and the stakes are high. And there’s a lot of required reading just to stay current in day-to-day practice.

Also, there’s the relationship thing.  Maybe a particular clinical study does offer “a shot” (usually a long one). Still. It probably means the patient’s off to some distant place at a time that’s infinitely crappy and emotional horrendous.  And the patient and his.her doc often have a thing going, a doctor patient relationship. Believe it or not, separating from the Doc who took the patient this far down  Dismal Road  can be tough for both the patient and the physician.

INVESTIGATE EARLY

People, naturally, do the regular stuff, first. If things don’t work out, maybe they start looking around for unregular stuff.  It’s tempting to see clinical trials like the extra innings. After the first nine. (A little baseball metaphor here.) Well, sorry, Bub, but that may be too late. Some of these trials won’t let patients who are practically gonners into their programs. They need to get at them earlier in the progression of the disease.

THE RIGHT ANSWER

You’re kidding, right? If I knew the right answers to this stuff, do you think I’d be sitting here cranking out blog articles? I don’t know how to get doctors back into this loop either.  But something’s gotta change. That’s for sure. It’s not right to expect patients, on their own and at the worst possible time in their lives, to become medical detectives, capably sorting through the relevant research. And it’s not like NO doctors are referring to clinicals. Maybe we need to understand what the doctors who get this right are doing.

Mister ScienceAintSoBad‘s an optimist. He thinks things will improve.

Sooner’s better than later.

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Credit for above cartoon (which I don’t exactly understand either) to, xkcd.

OUR BUDDY, MISTER PYLORI

THE BUG THAT SHARES YOUR LUNCH

Helicobacter pylori. Ever hear of it? It’s a bug that eats your gut.

I guess you could say it dines where you dine.

It wasn’t THAT long ago (1982) that two Australians, Barry Marshall and Robin Warren, discovered that these little helicobacter pylori were involved with ulcers. An amazing, amazing thing, really, since everyone KNEW that ulcers were caused by stress. Bacteria couldn’t live in the stomach where it’s so acid.

That’s where we were wrong.

We now know that there are bugs (I’m being terminally cute here, I mean, microorganisms) which can live in places you wouldn’t believe. Hot, dry, cold, acidic, basic, radioactive. We call them “extremeophiles”. If they can live in yer gut, what next? Could they live on Mars?

In New York, even?

Well.

In fact, helicobacter pylori do inhabit the intestinal tract where they are associated with ulcers, gastritis, and cancer. The obvious question: if this stuff can be caused by microbes, can antibiotics help?

Sure.

Which means that some people are getting cured.

If everything goes right.

Not so fast, though. Ever hear about antibiotic resistance? Every time we get our hopes up, there always seems to be a new disappointment. Finding out about helicobacter pylori was a great step. But efficiently rousting MISTER pylori from the gut?  Currently that means using several antibiotics as well as strong anti-acids.

Sometimes it works.

Sometimes it doesn’t.

Where to turn? How about the University of Rhode Island?

RHODY TEK

LAB ON A CHIP ( Mohammad Faghri, Dept Of Mechanical Engineering, URI )

Ever heard of the University of Rhode Island? It’s a public university in a state the size of a  parking lot.

URI seems to be having its own “Sputnik moment”, something ABC’s Christiane Amanpour (a URI graduate) calls ” a whole new era of technological, scientific.. progress”. Stanford and MIT have nothing to apologize for. Excellent centers of science and engineering. But they’re looking over their shoulders at “Rhody Tek”

A group of URI’s scientists have reduced the functionality of a medical testing lab onto a single chip. Drop of blood. Instant results. This technology  may wind up in apps for the iPhone. Android phones, too.

Another group’s figured out how to use saliva (instead of blood) to monitor immunosuppressive drugs. (Don’t see the big deal? I’m happy for you. I hope you never do.) And another group’s working on a patch for anti-tick vaccines. (I said the STATE’S small. I didn’t say the insects were.)

URI’s Graduate School of Oceanography, which had a research vessel on station monitoring the BP oil spill,  has hundreds of projects cooking.

(My wife? Maybe she works at this fine institution, maybe she doesn’t. I would NEVER let something like that influence my objectivity!!!!)

What’s URI got to do with h pylori?

A group headed by Dr. Steven Moss is  developing a vaccine against helicobactoer pylori. The vaccine is delivered nasally, by the way. Yet another “sniffer”. (The work’s in the Journal Vaccine.) In addition to the researchers from URI,  Moss is working with scientists from Brown University, Rhode Island Hospital, and Epivax, Inc..  In the  careful way that researchers talk, he calls this work “encouraging” but “preliminary”.

Which it is.

If everything works out, there’ll be a lot less miserable digestive tracts on this planet.

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Image credit: Wikipedia commons.

This work is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported License.

DOCTORS CAN BE VERY REASSURING (1906)

THE GOOD

Life’s good, right? You’re very loved.

Money? Enough. Who needs more? Besides. Money’s not what counts. Summers are warm. Winters? Crisp. With snowball fights, skiing, and frosty branches glistening in front of the window.

It’ll always be like that. Nothing bad’s gonna happen. I Promise.

THE UGLY

Just in case my spell doesn’t work, here’s a resource. It’s for when somebody gets sick.

Very sick.

So sick that he or she runs out of options and the Doc, so optimistic and reassuring at first,  looks uneasy and emphasizes the need to be realistic. This is a place to go that’s out beyond the end of the road. Maybe it’s the next road. It’s called TrialsCentral.org . It was started  by Kay Dickersin  and a group from The Center for Clinical Trials and Evidence-based Healthcare at Brown University.

Couple of things to remember.

First, be sure you get yourself a second opinion. You’re not being disloyal. It’s a routine part of medicine. Your doctor won’t be the LEAST bit uncomfortable. He or she will be glad to make some recommendations. In fact, your Doc will also help you go over the possibilities for possible clinical trials.  You shouldn’t  feel you need to do this on your own.

Clinical trials are labeled as phase I, phase II,  phase III or phase IV. Phase I’s where they weed out the REAL stinkers. They’re looking at side effects and what can be tolerated. Mostly, they’re not looking for sick people anyway. Phase II’s where thing’s get a little more serious. They’re starting to figure out “efficacy” and trying to figure out what’s the right dose. Phase III’s where they get to spend lots of money recruiting subjects in trials in various locations around the country. These are the make/break tests that determine if it gets approved. The phase IV trials are kinda “tune ups” that’re done on drugs that are already out there.  (There are also “phase 0″ trials – ultra cautious tests on a few people. A sanity check to make sure they’re ready to do the Phase I stuff).

STUBBORN ENOUGH TO LIVE

If you’re looking for a miracle (am I mixing metaphors?) you’re interested in Phase III trials.  But. remember, even in a phase III trial with a very promising drug there’s a good chance you may be placed in a control group, meaning that you don’t get the drug or its benefits. And trials are EXPERIMENTS. They’re risky. You might have a better (short) life if you just carry on.

But you’re a gambler, aren’t you? You’re not gonna go unless you HAVE to. And you’re damn well not gonna go without a fight. Well don’t  forget that you may be able to argue for “compassionate use” (single patient access), meaning screw the science, just the drug please. Not EVERYONE wants to give a life for science.

Just a small footnote. (Well, I have to say this.) MisterScienceAin’tSoBad would never, knowingly, give you any bad advice or misinformation, but biomedical engineers don’t treat patients and don’t give medical advice. I do offer the very best information that I can but where your health’s at stake, you’ll want to verify anything you read here.

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Attribution for above image: By Anonymous [Public domain], via Wikimedia Commons

ANGELO'S TRAINER-BOX KEEPS SURGEONS SHARP AS A SCALPEL

A KIDNEY HAS TO GO

My brother-in-law’s still a handsome guy in his mid seventies. He’s fiercely loyal to my sister and his kids, a “drivin’ fool” who runs his magnificent RV across country at the drop of a beanie, and he’s the “go to guy” in the family when it comes to automotive questions.

But for several years, he’s been battling cancers acquired (probably) during his military service.

R’s been in remission for seven years thanks to the remarkable work of Dr. Shimon Slavin (International Center for Cell Therapy & Cancer),  a pioneer in immunological therapy. Recently, however,  a mass was discovered on one of R’s kidneys.

The kidney has to go.

A DECISION HAS TO BE MADE

R had to decide between an open incision or laparoscopy, the new “modern” approach, which involves manipulating tiny tools inside the abdominal cavity while observing with a tiny video camera. Laparoscopy is all done through small holes in the abdomen rather than through a large incision and can mean faster recovery and less scarring.

“You’re the science guy, R said.  What do you think? Should I take a chance on laparoscopy?”

“Well, the recovery’s easier with laparoscopy,” I said. “What’s not to like?”

“Here’s the thing,” he said. “I’m afraid they’ll have to chop up the kidney to remove it. I wouldn’t want all that cancer juice sloshing around in me.  Who knows what other organs could be affected.”

R’s fears certainly seemed reasonable. In fact, surgeons do worry about “spills”, cells that drip from an instrument during surgery.  So I called Angelo Tortola (Venture Technologies) who designs the tools used in these procedures. He also makes the training simulators that surgeons use to perfect their techniques.

After explaining a little about my brother-in-law’s background and describing the problem, I asked him if he could help.

“You called the right guy,” he said. “I had to give up one of my own kidneys about two years ago.”

Since Angelo had never mentioned this to me, I was very surprised.

“You’re OK now, right?”

“Completely. The cancer was fully contained. But I have a story.”

“Don’t let me stop you.”

“My doctor was ‘old school’. He was determined to go with an open incision.  Even after I asked about laparoscopy, he stuck to his position. Safer. Best result.

“But the more I read, the more I wondered.  Finally, I set up an appointment at Mass General Hospital in Boston with a leading surgeon – one who I happened to know did a lot of laparoscopic procedures.

“After reviewing my situation, he said I would be a good candidate for laparoscopy but I could choose an open procedure if I wished.

“I asked him about the relative advantages. He said that laparoscopic removal of a kidney was just as safe as an open procedure with lower risk of certain complications during recovery.

“So, I asked, how do I decide?

“Well, he said, with the open procedure it’ll take you longer to get back on your feet.

“How much longer? I asked.

“With the open procedure, it could be up to a year till you are fully normal, he said. With laproscopy, you should be functional within a few days.”

“Now THAT,” Angelo said, “is an amazing difference. And, you know what? He was right.  A couple of weeks later, I was on an airplane, on the way to a meeting.”

I asked Angelo about R’s concern. Does the kidney get chopped up before it is removed?

“Not to worry,” Angelo said. “That’s not how they do it. The organ is removed in one piece. And everything’s placed in a plastic bag before removal.

“You tell your brother-in-law that either choice is safe. It’s up to him.”

STELLATE CELL ACTIVATION (Hey! I needed a picture.)

Oncology: Pancreatic Cancer. Head/Neck Cancer

What’s your favorite cancer?

I bet it isn’t pancreatic cancer.

The request queue for cancer’s pretty short. But the least popular members of this rather unpopular group of diseases may be things like the oral cancers (head and neck), pancreatic, and lung cancer. Course I haven’t taken a survey, and I bet there’re plenty of others that aren’t big favorites either. But if you DO have the bad luck to have a tumor, you want it to be at an early stage and easy to get at.

The pancreas, when it goes bad, doesn’t send off early warnings and it isn’t easy to get at. Aesthetics aside, things would probably work out much better with the pancreas if it were located on your ear. Signs of disease would be easier to spot early and snipping off the bad thing would be an outpatient procedure.

CANCER BOMBLETS

Well Mark Howard (University of Kent, School of Bioscience) hasn’t figured out a way to rotate your pancreas to your ear but he seems to be onto something equally (some would say more) exciting than a pancreas hanging off of your right ear:  cancer bullets.

Dr. Howard’s “thing” is the shape of certain amino acids (peptides). He was able to figure out how to optimize their ability to lock onto (bind with) cancer cells. Hook the amino acids to the right drugs, and you have a delivery system,  a “cancer bullet”.

DOES IT WORK?

You WOULD ask!

MISTER ScienceAintSoBad’s beat is science and Mark Howard is, in every sense, a scientist. But this is early in the process. It’s a remarkable accomplishment and he gets himself a ScienceAintSoBadRating of 10 which, while not a Nobel Prize, isn’t pigeon crap, either.  But that doesn’t mean this’ll permanently eradicate cancers. And, if it does, it remains to be seen if it will work for everyone. Those studies haven’t been done yet.

ScienceAintSoBadFingers are crossed.