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View Full Version : Husband-and-wife team lead stem cell program to put an end to cancer



barbara
05-13-2010, 01:33 PM
April 21, 2010
BY TED PINCUS
There's nothing like a life-shortening disease to alter one's perspective. I always thought I was indestructible, and I guess I think I still am. But last September when the good folks at Northwestern Memorial's Oncology Department pegged me as an anemic enigma, gave me a bone marrow biopsy and diagnosed multiple myeloma, it did make me feel vulnerable for the first time in my life.
I had survived Air Force pilot school as the worst trainee on record. (On my first solo flight, the instructors actually placed bets on whether I'd arrive back on Earth intact.) My wife, Sherri, and I have sailed small craft against heavy seas in the Mediterranean, South Pacific and Caribbean without a qualm.
But this experience is different, and in three installments I've agreed to share it with you as I go through it. Multiple myeloma prevents your bone marrow from producing red blood cells. It is incurable but containable. Treating it is a relatively young science.
Nobody has the slightest idea of where it comes from -- not from smoking, drinking or a gargantuan diet. And, cancer always was an affliction that happened to other families, not mine. (My ancestors always specialized in cardiac arrests.) But somehow I knew this thing wasn't going to be a walk in the medical park.
When you first get the news that you have a little cancer -- if you're like me -- in the weeks that follow you enter five fascinating stages of mental attitude.
The first is disorientation. Can this really be happening to me? I've escaped almost every malady except a hernia and a hangnail. They must have gotten the biopsy results mixed up. Am I really not immortal?
The second is fear. You can't beat the prospect of potential death to give you some cold sweats in the night. Of course the doctors speak to you only in euphemisms. There's an unwritten rule in the oncology clinics that nobody ever mentions death. Terminal is someplace where they park railroad trains. Keep it all light and upbeat.
The third is anger. Why me? With only 19,900 new cases of myeloma in the United States each year, why did my number come up? But to me, the fear and anger phases passed quickly. In reality, it's only parting with those I love that scares me -- not dying. I could drop dead tomorrow and not feel cheated in the slightest. I've made it to age 76, beating the mortality tables and vastly outliving my forefathers.
Most of all, I've been blessed with an incredibly lucky life, replete with an amazing, passionate, multi-faceted mate; five warm, high-achieving children; standout sons- and daughters-in-law (who even pick up an occasional dinner check); 10 bright grandkids; a legion of long-term friends worldwide; a soul-satisfying professional career spawning a unique business that still thrives; fulfillment in government work, and a resolve never to retire. My cup runneth over. No way am I being short-changed.
Fourth came denial. I simply pretended this wasn't happening. That didn't last long. The minute they started me on chemotherapy I began learning the facts of life and how to keep score on cancer.
In med-tech talk, myeloma cells in your bone marrow produce abnormal immunoglobulin-A, which is called a monoclonal protein, or the "M Protein." These are the bad guys that crowd out red blood cells (and the white that boost your immune system). Normal blood has roughly a 100 IGA count. When they told me that mine registered 2,250, denial seemed a bit ridiculous. Besides, at my ripe age, people no longer view you as a hypochondriac.
The fifth phase was determination, a resolve not only to overcome the problem but to get through the process while ignoring the side effects and not slowing down my life. I sacrificed not a single aspect of lifestyle, even tennis. It was extremely difficult, but rewarding and is the most important lesson I could offer anyone stricken with a serious disease.
While I've always had a Panglossian outlook, it was crystallized by one of my early clients, W. Clement Stone, Chicago insurance mogul and author of Success Through A Positive Mental Attitude. Maybe it's just part of my heritage. As Golda Meir once said: "Pessimism is a luxury that a Jew can never allow himself."
Thus, when they started me on Revlimid, a chemo drug used to combat and control myeloma, I ignored the minor side effects and left, pill bottle in hand, for a month's driving trip with my wife from the Alps through the United Kingdom. It was a piece of cake.
Returning, we then spent the next month at our Manhattan apartment for business and theater. That's where it all began to catch up with me. Nobody had warned me that chemo effects are cumulative. While anemic, my energy level was adequate, then a bit drained, then sapped before finally disappearing. A two-block walk became a challenge.
Although I had eluded most of the nightmarish side effects printed in the Revlimid literature (to protect the hide of the manufacturer), fatigue emerged as my worst enemy. The rude fact is that chemo-produced fatigue isn't simply being "tired."
Very gradually, you feel like somebody punctured your body and let all your stamina trickle out, and then wrapped you in a suit of lead armor. Every motion becomes an effort -- no pain, just effort.
Rushing back to Google, I found that the drug Ritalin could help counteract the fatigue syndrome, combined with Decadron steroids, or sometimes Prednisone. This worked. But for how long?
I decided to seek the long-term answer. And I found it by switching to a new doctor -- a leading myeloma specialist and head of the transplant program at Lurie Cancer Center at Northwestern Memorial.
He's Dr. Jayesh Mehta, a non-stop dynamo who looks about half his age of 45. A fanatic about his specialty, he's pursued his quest ever since earning his doctorate at Bombay University and focusing on transplant research at Hadassah University in Israel. Emigrating to the United States, he has been a key factor in the pioneering development of transplant technology and has written no less than 77 published papers for global consumption.
His quick, responsive style and recommendation for an aggressive, proactive approach to the disease really clicked with me. To truly arrest myeloma and get it behind you, only a stem-cell transplant will do the trick, he says. All else is a holding action. I signed up immediately. He shifted my chemo to Velcade infusions. My M protein number is now down from 2,250 to the 400s and heading south.
I'm now slated for the five-week transplant sequence starting today and will alternate as outpatient and inpatient. He warns me that geezers of my vintage have only a 50 percent chance of success at this game and that the chemo is far heavier than I've ever known, driving my immune system to zero. I say let's go for broke.
My next installment will be written while I'm going through whatever they throw at me. One of the isolation room amenities (besides incredible hospital cuisine, as always) is Wi-Fi for a laptop. With that connection to the outside world, plus six unread books and a smuggled martini, how bad could it be?
I'll let you know.


Installment 2



Ted Pincus receives treatment at Northwestern Memorial's Prentice Pavilion for Hematology/Oncology patents.


May 12, 2010
BY TED PINCUS theopincus@hotmail.com
Welcome to Transylvania-West, where everyone is out for blood. Yours. It's a virtual Vampire Jamboree. But there's nothing sinister or scary about the posh two top floors of Northwestern Memorial's Prentice Pavilion, reserved purely for Hematology/Oncology (that's blood cancer to you). It's the creation of a husband-wife team of amazing medical pioneers who are taking the cancer fight to the next level: Dr. Seema Singhal, director of the myeloma program, and her fellow Mumbai, India-born mate, Dr. Jayesh Mehta, the guru who directs its stem cell transplant program. I call him Chemo Sabe.
Mehta never has been content with simply helping people cope and get along with cancer. He's out to eradicate it. And that's why my floor-mates and I are here. We've chosen not to just keep popping chemo pills and hope for the best, but trust his far more aggressive approach and try to drive this thing into remission.
Blood cancers are different than any others. They're invisible, they're throughout your entire system. No tumor to X-ray and remove or radiate. Myeloma, which gobbles up your marrow and prevents it from producing energizing red cells and immunizing white cells, later attacks bones and kidneys.
But if you have to pick a cancer, pick this one. We Myelomites have it easy. My heart goes out to those suffering here from the really rough stuff -- the pain of pancreatic or stomach cancers or the suffocation of lung cancer.
We're the lucky ones -- and for another big reason: stem cell transplant has licked this malignancy. While never entirely curable, it can be driven away for years by this radical, tough and hazardous -- but proven -- process.
What is it? Well, the theory is to drain your blood, wring you out, and start over. Of course when they blast you with extra heavy chemo, it's designed to destroy your entire marrow system, the good blood as well as the bad. It's like you have to get the gunk out of a sponge by squeezing out all the soap and clean water along with it.
So the climax of the process is to leave your system depleted for 24 hours and then flooding it with the good stuff. And where do they get that? From you -- your own stem cells that have been "harvested" in advance, frozen and held to reinfuse in you as soon as your system is cleansed. Imagine freezing chicken soup for a rainy day, thawing it out and savoring it at the right moment.
Making all this magic possible is a prep period that we all must endure. It's a week at Prentice in 90 hours of nonstop chemotherapy designed to attack the myeloma cells and reduce them to the point where The Big Shocker finally can finish the job. So step one is they open up your jugular and slide a catheter up the vein, pop out an opening in your chest and hang two external ports -- which will be used for the coming month for receiving drugs, giving up stem cells, and then receiving clean cells at the end. More IV pokes go into your arms. (Appropriately, since they must have realized that "pincus" are the first two syllables in "pincushion.")
The ports are first connected to a colorful circus of IV bags hanging above your head, suspended on a steel rack set on rollers. It has to accompany me as my big brother when in the bathroom or when traipsing down the hallways to schmoose with my compatriots, whom I interviewed for this article.
We knew we hadn't come to Prentice for the food. But gastronomy aside, it surely offers state of the art in care and amenities. Your bed buttons control about 50 positions and enable you to summon everyone but the Surgeon General. Your TV becomes a computer monitor. You have hi-fi, Wi-Fi, schmy-fi. There's 24-hour room service.
They even allow your wife to smuggle in a martini each night before dinner (although I continually complained that it was difficult to get the olive through the IV tube).
And they spare no expense in keeping you adequately entertained -- a wake-up each two or three hours per night for vital systems tests.
(Even weight? How many pounds can you lose between midnight and 3 a.m. -- and who cares?)
There's a rumor that the CIA Interrogation Division is studying the sleep deprivation techniques they've developed here. Then there are the trips to test labs on a merry gurney ride to drain more blood, blood, blood. They keep an eye on every corpuscle. (And with all the baldies around here, this place isn't exactly a barber's bonanza).
I thought of erecting a sign above the entrance saying: All Ye Who Enter Here Will Feel Less Healthy When You Leave.
The wisecrack here is that it isn't cancer that kills you, it's the chemo. But that's not really true.
Although they're flooding your system nonstop with four drugs simultaneously, with names that are totally unpronounceable, it doesn't mean that you suffer all the side effects that they predict in the literature. Each of us caught a few, however, because they like everyone to feel accomplished when they leave. Mine were a little staph infection, a little pneumonia and a little blood clot, all of which I managed to overcome sequentially and easily.
But whether we tolerate the shock treatment with indigestion or equanimity, Mehta has instilled a critical medicine into the mix -- a will to ignore the downside and focus on the goals here. It works.
Take Lawrence Swader, 53, of south suburban Harvey, who owns a security alarm company. With a wife, daughter and grandson, he was diagnosed with myeloma last November, and went on Mehta's Velcade.
"It all shook me up at first and the fatigue was rough, but I went through the Prentice chemo prep and was ready for the transplant this week. I credit the team here with keeping spirits high and focused on remission," he tells me.
Then there's Linda Maher, 57, an administrative assistant at a West Dundee physical therapy center. "It all happened so innocently," she says. "There I was buying a pair of red shoes and, when bending over to fit them I sensed a flashing pain in my rib. When they later scanned it they found not one but five bone lesions in my body and mid-stage myeloma.
"I signed up with Dr. Mehta and went through the chemo process and then a transplant last October, which was partially successful. But because he freezes the millions of extra cells of yours you can have a second chance at this, called a tandem transplant, which I'm having this month. I'm going to win this."
The longer you're in this game, the more you realize that mental attitude isn't the important thing -- it's everything. And the quality of living is what counts, not the quantity.
That's the thought I've been keeping in mind as I enter harvest time down on The Olde Transplantation. I'm spending four to five hours a day hooked up to Vampira, my personal blood-sucking machine. (Please send garlic). Then when I've given them enough stem cells, I'll take a week off and go back as an in-patient. It will begin with a bang -- a high dose of Melphalan, the most potent blood-blaster there is. The very next day they give me all my frozen stem cells back (if they remember where they stored them) and return me to red-blooded American boyhood once again.
The fascinating thing here is the change in patient communications psychology at American hospitals. In the old days, they tried hard to build spirits by sending positive vibes about the likely outcomes of drugs and procedures. Nowadays, they do the opposite. Every briefing sheet contains the most dire possible consequences of the drug you are about to consume -- severe nausea, vomiting, constipation, palpitations, heartburn, rashes, shortness of breath. After these warnings, most patients will feel pleasantly surprised.
This reverse stealth strategy is designed to lull you into feeling that you had a good time here. In fact, the staffs are trying harder to make this a reality.
Ted Pincus is a Sun-Times financial columnist, a lifelong corporate communications consultant, and adjunct professor at DePaul. He was a member of the Obama Economic Policy Committee during the presidential campaign.