July 12, 2017 — A Living Drug

A hopeful news bulletin today from the New York Times:

“A Food and Drug Administration panel opened a new era in medicine on Wednesday, unanimously recommending that the agency approve the first treatment that genetically alters a patient’s own cells to fight leukemia, transforming them into what scientists call ‘a living drug’ that powerfully bolsters the immune system to shut down the disease.

If the F.D.A. accepts the recommendation, which is likely, the treatment will be the first gene therapy to reach the market. Others are expected...”

This particular treatment focuses on an uncommon form of childhood leukemia, and is earmarked for the 15% of patients who don’t respond to other treatments. Here’s how it works:

“The treatment requires removing millions of a patient’s T-cells — a type of white blood cell — and genetically engineering them to kill cancer cells. The technique employs a disabled form of H.I.V., the virus that causes AIDS, to carry new genetic material into the T-cells to reprogram them. The process turbocharges the T-cells to attack B-cells, a normal part of the immune system that turn malignant in leukemia. The T-cells home in on a protein called CD-19 that is found on the surface of most B-cells.

The altered T-cells — called chimeric antigen receptor cells — are then dripped back into the patient’s veins, where they multiply and start fighting the cancer. Dr. Carl H. June, a leader of the University of Pennsylvania team that developed the treatment, calls the turbocharged cells ‘serial killers.’ A single one can destroy up to 100,000 cancer cells.”

It's fascinating to me that the new treatment uses a stripped-down form of the HIV virus as a pack-mule to carry the re-engineered genetic material back into the patient's cells. There's a kind of poetic justice in using one killer to fight another.

Although the article refers to this treatment as a “drug,” it stretches the usual definition of the word. It’s part drug, part treatment protocol.

Whatever it is, I’m glad to see it’s ready for prime time. It can’t be long before other, similar treatments for a variety of cancers will follow.

June 5, 2017 — Keep Waiting, Keep Watching

I've just returned from Memorial Sloan-Kettering's satellite facility in Basking Ridge, New Jersey. I had a routine ultrasound followed by a consultation with my surgeon, Dr. Jay Boyle. Routine, yes, but - since I'd had a biopsy of a lymph node on the left side of my neck several months ago that revealed recurrent papillary thyroid cancer - I knew this would be a discussion about treatment options. They're also pretty certain that several small nodules that have been detected in my thyroid bed (where the thyroid used to be) are also cancerous, but those are too inaccessible for a needle biopsy.

I also knew that, because Dr. Boyle saw no need to move my appointment up after news of the biopsy results came in, this is a relatively slow-moving situation.

Bottom line is, we decided to continue watchful waiting for now. I'd told the nurse that was my preference, based on what I knew, and she told Dr. Boyle of my wishes before he came into the room. He's agreeable with that. He said that, as far as he's concerned, we could go either way. He did say that, if we decided on surgery, he'd recommend removing a whole lot of lymph nodes as well as the nodules in the thyroid bed, because it's not easy to keep going back in there and remove a lymph node here, a lymph node there. With each new surgery, there's more potential for damage to the tissues of the neck area. He said that, based on the location of the nodules, surgery would present about a 10% chance of permanent damage to the nerve that controls the vocal cords. I speak for a living, so permanent hoarseness and weakness of voice is not something I'd consider lightly.

I asked him where in the body thyroid cancer usually metastasizes to, and he said the lungs and the bones are the most common. In either of those cases, though, he said it's usually treatable with either further radioactive iodine treatments or beam radiation.

The ultrasound showed no change in the size of the thyroid-bed nodules, nor of the couple of abnormal lymph nodes they've been watching, but it did show a new, very small lymph node in the same area that also looks abnormal. The doctor said he could only barely feel any of those lymph nodes as he palpated my neck.

The other doctor who's involved with this decision is my MSKCC endocrinologist, Dr. Stephanie Fish. Dr. Boyle tried unsuccessfully to get Dr. Fish on the phone to find out why, exactly, she'd ordered the biopsy - because he said that, in his experience, when a doctor orders a lymph node biopsy, it's generally because surgery is a likely outcome (if it turns out there's a malignancy, of course). When I reminded him of my non-Hodgkin lymphoma history, he said that could explain it - there would be a need to determine which of my two kinds of cancer was causing the swelling in the lymph nodes. Different cancer, different treatment protocol. (We now know, of course, it’s the thyroid cancer that’s recurred, not the lymphoma.)

I see Dr. Fish on July 31st. They drew blood today that will provide her with thyroglobulin numbers and other crucial information she needs, prior to that appointment.

It's kind of nerve-wracking to wait all that time, and a little frustrating that the two doctors weren't on the same page prior to my arrival today. Dr. Boyle said he will talk to her, though, and I'm sure he'll call if there's any change.

I'm OK with this outcome. I'd rather not face another surgery at this time, if if can be avoided. With years of watchful waiting for my NHL behind me, I'm comfortable with the "don't shoot till you see the whites of their eyes" approach. Sure, I'll continue to live with uncertainty, but what else is new?

Today's appointment confirms for me how important it is to be go into such meetings well-informed, and to speak up about my own preferences as a patient. Some treatment decisions are less than clear-cut, clinically speaking, which leaves significant room for patient preference to be taken into consideration.

Next appointment with Dr. Boyle is in 6 months. As I've said, I see Dr. Fish in just under 2 months.

July 10, 2016 — Living Beyond

Last December, I wrote a blog entry acknowledging the tenth anniversary of my first cancer diagnosis. I dared to hope it could be a sort of capstone for this meandering project. Maybe I was finally out of the woods. Maybe ten years meant I was “cancer-free.”                                    
Recent events have proven otherwise. My December annual visit to Dr. Stephanie Fish, my endocrinologist at Memorial Sloan-Kettering, turned up some abnormalities in an ultrasound of my neck. Several tiny nodules had appeared in my thyroid bed — the area where the thyroid gland had once been — that looked worrisome.  Dr. Fish reassured me that it was too early to tell if this was significant, but arranged for me to come back for another ultrasound in six months.

I’ve now had that follow-up test. Dr. Fish informed me there are unmistakable “signs of disease” in the thyroid bed, as well as some swelling of nearby lymph nodes. The usual treatment for recurrent thyroid cancer, she explained, is further surgery. Because I already had a routine follow-up scheduled with Dr. Jay Boyle — my thyroid surgeon — she told me I should ask him what treatment options he recommends.

Last week, Claire and I drove up to the Memorial Sloan-Kettering satellite clinic in Basking Ridge, New Jersey to see Dr. Boyle. He confirmed everything Dr. Fish had told me. The thyroid cancer is back. The truth is, it probably never left me. He’d warned me back then that it’s difficult to surgically remove every microscopic bit of thyroid tissue. That’s the reason for the radioactive iodine treatment I’d had at the time: it’s a precautionary cleanup of the whole area. But it’s not always 100% effective.

As for the lymph-node involvement, he told me that was visible even at the time of my surgery, but is of no greater concern than the newly-appeared nodules.

Well, what’s ahead? A biopsy?

The nodules are too small to biopsy.

A further radioactive iodine treatment?

Not likely. That’s a one-time approach, much less effective on the second go-round.

What about further surgery?

The nodules, he explained, are still very tiny and are therefore hard to remove surgically. They’re also located in an inconvenient place, close to the nerve that controls my vocal cords. If I opt for surgery, there’s a 10% chance of permanent hoarseness as a side-effect. Dr. Boyle knows as well as I do that I make my living with my voice.           

As for the lymph nodes on the left side of my neck, they’re closer to the skin and therefore easier to remove, but that would require a large incision that would do damage to delicate neck tissue. Such an incision would make further surgery in that area — should it ever be required, down the road — problematic.

Better to postpone surgery, he advised. Thyroid cancer is typically slow-moving. At 59 years of age, I just may outlive it. If I do reach the point where surgery is indicated, it would be just as effective then as it would be now.

The treatment Dr. Boyle recommends is one that’s become familiar to me as a non-Hodgkin lymphoma survivor: watchful waiting. Dr. Fish has already ordered a follow-up ultrasound for six months from now. Dr. Boyle thinks that’s an appropriate precautionary step, but he doesn’t expect to see a big change.

A short while after our visit to Dr. Boyle, I had a conversation with a friend who’s a breast cancer survivor. She’s had a long series of surgeries and treatments. She, too, is not in any immediate danger, but her scans have revealed some recurrent disease.

My friend told me she’s stopped updating friends and family about every detail of her situation, because it’s hard for others to grasp what watchful waiting really means. “We’ll always have cancer,” she told me, frankly. “People who haven’t lived through it have a hard time understanding that. They don’t understand that the most aggressive treatment isn’t always the best choice.”

My situation exactly.

Recently I read a little article in Cure magazine by Mike Verano, a psychotherapist and cancer survivor. It’s called "Moving On After Cancer." Mike’s point is that few people are ever able to move on after cancer, to attain the much-heralded “closure.” Most cancers are simply not that sort of disease.

Mike has this to say:

“Thirty-plus years into the practice of psychotherapy, I’ve learned that telling someone that their recovery depends on ‘moving on’ is akin to telling a depressed person to just ‘be happy.’ My approach these days is to talk about living with rather than living without, allowing over forcing and, most importantly, realizing that life moves on in wellness and illness, joy and suffering, pleasure and pain. I firmly believe that illness does not halt this process; it does not put the brakes on existence. Feeling stuck comes from a trick of the mind that sees suffering, of any kind, as an unnecessary detour and waste of time.

Once we allow our lives to unfold with cancer as part of our experience, we awaken to the literal meaning of the word survive which is ‘to live beyond.’ This is the wisdom of being told that we become survivors on the day we receive our diagnosis. Thus, the need to discover the way ahead, to put psychological, emotional and spiritual distance between ourselves and the illness is already being met. Therefore, the work is often a matter of staying out of our own way as we move through this process.”

Survival as “living beyond”: I like that insight. It sounds positively theological. Jesus Christ says he has come that we “may have life, and have it abundantly.” It’s so very easy for us to ascribe to cancer the power to make this God-given life less abundant than it already is. Cancer has no such power.

We watch. We wait. We live. We love. We have cancer.

We live beyond.

June 3, 2015 — Rituximab’s Latest Dance Partner

Some encouraging news from the world of lymphoma research:

“Polatuzumab plus rituximab in relapsed/refractory follicular lymphoma showed high overall response rates at two doses of polatuzumab, with a higher complete response rate at 2.4 mg/kg, data presented at the 2015 American Society of Clinical Oncology (ASCO) annual meeting have shown....

Researchers enrolled 45 patients with relapsed/refractory follicular lymphoma and assigned them to receive polatuzumab at 2.4 mg/kg or 1.8 mg/kg with rituximab 375 mg/m2 every 21 days until disease progression or unacceptable toxicity.

Results showed that overall response rates were 76% (19/25) and 75% (15/20) in the 2.4 mg/kg and 1.8 mg/kg groups, respectively.”

Rituximab — which I received, in conjunction with the CHOP chemotherapy cocktail in 2006 — continues to be the gold standard in treating non-Hodgkin lymphoma. For refractory (recurring) disease, the doctors are continually trying new combinations of rituximab with other drugs. This combination — for indolent disease — is the latest variation.

Keep at it, researchers!

May 12, 2015 — The Mountain Lion in the Fridge

“What’s it like to go through cancer treatment? It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE...”

That’s the beginning of a rather creative blog post by a cancer survivor named Caitlin Feeley. It brought a smile to my face because it’s so accurate.

Not the mountain lion in the fridge part, of course: but the things various people say to you as you’re trying to claw your way up the mountain where the only creature capable of fighting off the mountain lion — a bear — happens to live. Things like, “That’s not really a mountain lion, it’s a puma,” and “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

I don’t feel right about cutting and pasting the whole thing here, but here’s a link where you can read the whole piece.

Well done, Caitlin. You captured the experience.

November 17, 2014 — Bye, Bye Bexxar

There are many ways our market-driven healthcare-funding system in the United States is just plain crazy, but one of the most damaging is the way it tends to suppress certain vital and effective medications. This has evidently just happened to Bexxar, which is no longer available. Along with its competitor Zevalin, Bexxar is a radioimmunotherapy agent.

Radioimmunotherapy is an ingenious bonding of a monoclonal antibody drug — Rituxan (rituximab) — with tiny radioactive particles. It delivers a one-two punch: the Rituxan chemically seeks out the cancer cells and the radioactive particle destroys them.

Radioimmunotherapy has proven to be very effective, and has the added advantage of doing its job in just one dose, with minimal side effects.

What’s not to like?

The people who really don’t like it are oncologists. And why? Because not many of them have the proper qualifications to administer it. As a hybrid of nuclear medicine and oncology, radioimmunotherapy requires doctors either to be dual-certified in both disciplines or to be part of a large clinic or group where both specialties are represented (a rare thing, in this case).

Many oncologists profit on two levels: both their professional fees and the fees they charge for running a chemotherapy suite. If their chemo suite doesn’t offer nuclear medicine as well, they lose a big chunk of change by referring a patient out.

An oncologist who refers a patient for radioimmunotherapy loses tens of thousands of dollars in billable fees. That’s a powerful financial incentive to stick with traditional chemo — even though that treatment takes longer (many months of infusions as compared to a single injection) and often has arduous side-effects.

This is not a problem for a large, multi-specialty clinic, but the typical oncology practice — which includes a group of oncologists only — can’t handle it. As Dr. Bruce Cheson of Georgetown University puts it, “patients had to be referred from one doctor to somebody somewhere else, which meant not only losing control of the patient, but also losing income from the patient.”

In many cases, radioimmunotherapy agents cost less — not as a single dose, but when averaged out over the total time required for treatment.

“There is actually no other drug out there with a track record like this,” writes Dr. Mark Kaminski of the University of Michigan, who helped devlop Bexxar. “Approximately 30% of patients can achieve long-term remission with Bexxar lasting over a decade. That's the biggest disappointment with this drug, now that it's gone, for patients with this disease — it was an easy treatment, it took only one week to finish, and if there were any side effects, they were all reversible. I've been giving Zevalin lately because I don't have Bexxar to work with, but I don't have as much confidence that it will be a solution for patients as much as Bexxar would have been.”

If we had a single-payer healthcare system (like Medicare), and if doctors practiced in multi-specialty clinics like the Mayo Clinic or the Cleveland Clinic — where they receive a salary rather than billing patients by the hour — then doctors wouldn’t stand to lose by recommending radioimmunotherapy. More patients would benefit.

Why do we expect physicians to be both medical practitioners and entrepreneurs? Sometimes those two functions are in conflict with one another, and this is a prime example.

Too often in our healthcare system, profits come first and patients second.

July 6, 2013 - Healing Bubbles

OK, I’ll admit this sounds a little wacky, but evidently it’s the real deal.

Researchers at Oxford are investigating ways of treating cancer with bubbles.

Yes, bubbles.

It’s a new way of delivering chemo drugs: inside tiny bubbles injected into the bloodstream.

Now, before you start quoting your favorite Agatha Christie novel featuring some nefarious murderer whose m.o. is injecting air bubbles into the victim’s blood, let me make clear that these are very tiny bubbles — so small as to cause no difficulty as they pass through blood vessels.

The goal of this novel treatment is to reduce chemo’s side effects. If the toxic chemicals are carried inside bubbles, the researchers at Oxford’s Biomedical Ultrasonics, Biotherapy and Biopharmaceuticals Laboratory (BUBBL) reason, they’re less likely to do harm to healthy tissue.

(Yes, that acronym was “BUBBL.” Nice to see scientists with a sense of humor.)

Once the bubbles reach their target, technicians direct a focused ultrasound beam at the tumor, which evidently makes the bubbles floating by adhere to the surface. Then, they zap the clusters of bubbles with a higher-intensity ultrasound signal, bursting them and spreading the chemo agents all over the tumor.

Quite apart from the chemo-laden bubbles, this same researching team is learning that highly-focused ultrasound beams can cause bubbles to form in living tissue. The article from Oxford Today, the University’s alumni/ae magazine, describes how this works:

“A transducer — the device which creates the sound beam — can send a high frequency sound wave into the body, creating pressures at the focus capable of causing spontaneous formation of bubbles. As the pressure is quickly varied, those bubbles expand and contract rapidly, and their motion creates such large increases in temperature that a section of cancerous tissue about the size of a grain of rice is effectively cooked and killed. By repeating that process it’s possible to destroy entire tumours — without ever cutting a patient open.”

We’ve been hearing for some time about a technology known as Cyber Knife — a highly focused radiation beam that can fry tumors without invasive surgery. Now, it seems, bubbles can do something very similar.

And who thought bubbles were just a kids’ toy?

June 29, 2013 - "Time, Time, Time Is on My Side, Yes It Is"

OK, this is really good news. A study of the survival rate of follicular lymphoma patients is showing a significant and steadily growing improvement since the 1960s.

The study results are published in an article, “Improvements in observed and relative survival in follicular grade 1-2 lymphoma over four decades: The Stanford University experience,” in Blood, June 18, 2013.

I don’t have follicular lymphoma — the small cells in my “B-cell, diffuse mixed large and small cell” grading evidently don’t display the same shape under a microscope as do follicular cells — but both are small-cell indolent lymphomas, treated more-or-less the same way. So, I take this good news to apply to my situation as well.

I’ve known this for years — that survival rates are getting better and better, as new treatments are steadily being rolled out — but it’s good to see some actual numbers, as part of a long-term historical study.

The study conducted at Stanford University identifies four historical eras:

Era 1, pre-anthracycline (1960-1975)
Era 2, anthracycline (1976-1986)
Era 3, aggressive chemotherapy/purine analogs (1987-1996)
Era 4, rituximab (1997-2003)

I’m off the chart in this study — a member of Era 5 — because I received my R-CHOP chemo (three chemo agents including anthracycline, plus the steroid prednisone, plus rituximab) in early 2006. So, my odds ought to be as good as, and probably better than, the era-4 patients.

Median overall survival rate steadily improved from approximately 11 years in eras 1 and 2 to 18.4 years in era 3. It’s not yet been reached for era 4 — because too many people in that cohort are still alive for researchers to have established their median age at death.

OK, so pre-rituximab follicular lymphoma patients are surviving for an average of 18.4 years after treatment. Rituximab-era patients up through 2003 are presumably doing much better than that (although the researchers can’t say, yet, by how much, because the numbers still aren’t in). I’m in the 15-year cohort beyond even that, that still hasn’t closed.

Even if the Era 4 numbers were to surprise everyone and reflect only a very modest gain (say, a 20-year average overall survival rate), that would peg the typical life expectancy of people who were treated at age 49, as I was, at age 69. Yet, because of the revolutionary impact of rituximab, the Era 4 group’s survival rate will likely prove to be much higher than that.

The news gets better. I’m not in Era 4. I’m in the yet-to-be-studied Era 5. Projecting the Stanford researchers’ steady increase into the future, that would push the average overall survival rate for patients from my era higher still.

I’m aware that I’m basing this speculation on the abstract, rather than the full article (which requires a subscription to the journal, Blood, to read online). I’m also aware that, once we get out of Era 3 (the latest one for which an actual median overall survival rate can be measured), we’re dealing in some very soft — and in the case of my Era 5 — even non-existent numbers. But, the trends look good.

“So teach us to count our days that we may gain a wise heart” (Psalm 90:12). I’m pretty sure the psalmist is talking about remaining aware of just how soon one’s own death may be coming. Does numbering our days in the opposite direction make us less wise?

I don’t know, and I don't much care. I’ll take the good news, all the same.

June 14, 2013 - Another Testimony for Radioimmunotherapy

A recent news article reports on another research study singing the praises of radioimmunotherapy (RIT), as an alternative to a stem-cell transplant. In RIT, radioactive isotopes are bonded to particles of rituximab (Rituxan), which just so happens to be the drug I received in conjunction with my R-CHOP chemotherapy in 2006. The radiation, which is delivered directly to the cancer cells by the rituximab, makes RIT a one-two punch that is proving to be very effective in enhancing long-term survival.

The two leading RIT drugs are Bexxar and Zevalin.

It does require doctors to think outside the therapeutic box, because practitioners must have one foot in each of two different treatment areas - oncology and radiology - that are usually the province of different medical specialists. While RIT treatments are very expensive, typically patients need to receive just one (as compared to multiple rounds of chemotherapy or traditional targeted-beam radiation, or the vastly more expensive - and more risky - stem-cell transplantation option).

VANCOUVER, British Columbia — In patients with refractory or relapsed aggressive lymphoma, immunoradiation combined with high-dose chemotherapy is associated with better progression-free and overall survival than chemotherapy alone when used in advance of autologous stem cell transplantation.

The BEAM chemotherapy consists of BCNU, etoposide, cytarabine, and melphalan.

"We started adding immunoradiation to BEAM about 9 years ago," said Tzila Zwas, MD, professor of nuclear medicine at Tel-Aviv University in Israel. "It was the hematologists' idea, because BEAM alone extended patients' lives by a few months only. The prognosis was very grave."

When Y-90 ibritumomab tiuxetan (Zevalin) was added to high-dose chemotherapy, "it was so successful — extending lives by over 2 years — we decided to conduct a multicenter trial," she explained....

The Z-BEAM approach improved overall and progression-free survival, "which is critical in hematology," said Dr. Zwas. The researchers also found positive effects in elderly patients. "This is very good news because we are dealing mostly with elderly patients. Refractory or relapsed aggressive lymphoma is not as common in the young age group. If elderly patients can achieve quality of life with low toxicity, it's unbelievably beneficial to them," she added....

Dr. [Norman] LaFrance said he hopes to see radioimmunotherapy combined with chemotherapy in earlier stages of disease and in other indications. "It's an evolution that hasn't occurred quickly enough, but I think it will," he explained. Medical oncologists are not trained to deal with radiation therapy, and there could be issues of reimbursement. "It's complicated, it's multifactorial, but I think it's turning the corner that people think combining radioimmunotherapy with chemotherapy is the right thing to do."

- Excerpted from "Radioimmunotherapy Improves Lymphoma Survival," by Jim Kling, Medscape Medical News, Jun 14, 2013.

April 12, 2013 — In the Gray Area

From time to time, I take advantage of educational conference-call opportunities that are made available by some of the leading cancer research and patient-support organizations. This afternoon, I listened to one that featured Dr. Owen O’Connor of Columbia University and Dr. Bruce Cheson of Georgetown University, both of them lymphoma specialists.

I’ve heard Dr. Cheson numerous times in the past (that's him to the left). Dr. O’Connor was a new name to me (see below for his photo).

The program was sponsored by CancerCare.org.

Often, my chief take-away after listening to such programs is to feel reassured that I’m pretty much on top of the subject of recent advances in lymphoma treatments. That, in itself, is encouraging.

Today, though, I actually heard a few things I hadn’t heard before. Or, if I did hear them before, they didn’t register with me.

The first has to do with the vexed question of what sub-type of NHL I actually have. My initial diagnosis was for small B-cell lymphoma, which is usually understood to be an indolent form of the disease (as is the relatively common follicular lymphoma). My second-opinion from a pathologist at Memorial Sloan-Kettering in New York, however, identified a significant number of large cells (more dangerous, but also more susceptible to curative treatment), which set me out on the chemotherapy journey on which I embarked in early 2006. The new diagnosis at the time was “diffuse mixed large and small B-cell.”

As a result, when I attend lymphoma educational conferences where they ask participants with B-cell NHL to break out into workshop groups, some follicular and others large B-cell, I never quite know where to go.

Today I heard Dr. O’Connor speak of the fact that, when it comes to diagnosis, there is often a significant gray area between high-grade (somewhat more aggressive) follicular lymphoma and diffuse large B-cell. He also said there are well-documented examples of “histologic transformation of follicular lymphoma,” which means that a patient’s disease actually changes fro one form to another.

I’m not saying that happened to me, necessarily. It’s just that it highlights how the pathology reports that doctors often present to patients with such certainty are sometimes as much an art as a science.  Dr. O’Connor pointed out that, in the case of some patients, if you were to present the same pathology report to ten different pathologists, as many as three or four of them may differ from the others with respect to grading of the disease.

That would put me squarely in the gray area, it would seem. It also means I’m likely always to have difficulty deciding which workshop group to join.

Generally, the news continues to be encouraging. Both doctors emphasized that, in the world of B-cell lymphoma, there are a great many treatments to choose from in the event of relapse. Here’s hoping I’ll never need them, but in case I do someday, it’s good to know there’s a choice.

They also made me feel like the R-CHOP treatment — harsh as it was — was, indeed, the most appropriate choice for me at the time. One of the callers in the question-and-answer session was wondering whether it’s best for a newly-diagnosed follicular lymphoma patient to start off with Rituxan only, rather than more traditional chemo agents. Dr. Cheson was quite clear that, the younger the patient is, the more important it is — all things being equal — to start with the harsher treatment first. Not only are the benefits likely to be longer-lasting with traditional chemo, but older patients are more likely to have difficulty tolerating it. So, it’s better to use it while you can, as a primary rather than a refractory treatment, while you’re relatively young.

I’ve often wondered, as well — especially as I speak to other patients whose disease is quiescent and who are pursuing long-term maintenance Rituxan treatments — whether watchful waiting continues to be the best course of action. Dr. Cheson put my mind at ease in that regard, by repeating news of some research studies I’ve already heard about. Specifically, these studies have found that, while maintenance Rituxan treatments may cause longer remissions, when everything is said and done, the overall survival rates of those who have had these monthly IV drips is no better than those who have not.

Anyway, it was a productive and reassuring hour to spend — even considering the ambiguity that goes along with living in the gray area. Thanks to the good folks at CancerCare for putting on such a useful program!

December 29, 2012 — A Donor’s Story

Here’s a story that makes me feel good — especially so, since I could potentially be on the receiving end of this sort of generosity someday.

These words were spoken by William Hudson, a CNN producer, after making a bone-marrow donation to save the life of a total stranger:

“I knew that no matter how much time and money I did or did not donate to nonprofits and charities doing important work, this was different. Here was a patient with a blood cancer whose particular immune system resembled my own. Turns out I, among potentially everyone in the world, was in the best position to save her life. It’s an awesome responsibility and opportunity.”

The most important thing, in making this sort of life-saving difference for someone else, is to join the national bone marrow registry. As Mr. Hudson explains it:

“Joining is a small time investment — all it takes is a few cotton swabs of saliva — but understandably seems to have no payoff. The chances of ever becoming a donor are only about 1 in 540.... I was on the registry for five years before I received a potential donor letter.”

According to the article, should a member of the network be selected as a donor, there are two ways the necessary stem cells can be harvested: an actual bone-marrow harvest (a minor surgical procedure), or the much easier peripheral blood stem cell donation, or PBSC — which is not much more difficult than taking a pill for five days, then donating blood. Procedures have improved to such a degree in recent years that, for most adult recipients, either procedure works well. In the case of some children, an actual bone-marrow donation is preferred.

I’ve had the preliminary tissue-typing done at the Hackensack University Medical Center so that, should my indolent lymphoma flare up in a dangerous way, I could receive a bone-marrow donation. I’ve struck out with both my brothers — both were tested, but were not good matches for me — so in that event I’d be dependent on an anonymous donor. According to the best medical science today, the only potentially curative treatment for the sort of lymphoma I have is a transplant (although at this time, when my disease appears to be dormant, the potential side effects outweigh the advantage of seeking a transplant).

Becoming a donor — even joining the registry — is a beautiful thing.  To find out more about joining the registry, go to marrow.org.

October 21, 2012 – Death of a Cancer Treatment Pioneer

Today, I run across an obituary for a true cancer treatment pioneer, Dr. E. Donnall Thomas, who died at age 92.

I’d never heard of Dr. Thomas till I read his obituary, but I’ve certainly heard of the procedure he perfected: the bone-marrow transplant.  He shared the 1990 Nobel Prize in Medicine for this work.

His obituary in today’s New York Times includes this:

“When Dr. Thomas began his research in the late 1950s, bone marrow transplants were seen as a frightening last resort. Patients suffered dangerous complications from the procedure, and survival rates were grim. The patient’s immune system would either destroy the transplanted marrow as foreign, or the transplanted marrow, which contains immune system cells, would destroy the patient's lungs, kidneys and other organs.

The only successes were in identical twins because their tissue types matched.

Many physicians abandoned the approach, believing that bone marrow transplantation would never be safe enough to be practical. Dr. Thomas persevered, despite numerous failures and the criticism that he was exposing his patients to undue risks....”

Dr. Thomas’ story reminds us of how difficult cutting-edge cancer research can be.  Sometimes – as was his experience – repeated setbacks lead some researchers to give up on a specific strategy. In such an event, only the truly committed remain in the game.

It takes a certain mix of confidence, stubbornness, and gutsy perseverance to continue to tweak the experimental treatment protocols until obstacles are finally overcome and success is achieved.

Before gladiatorial contests in the ancient Roman coliseum, the equivalent of playing the national anthem was for the combatants to stand before the Emperor and say “We who are about to die salute you.”

There are a great many cancer survivors who could very well bid farewell to Dr. Thomas with a slight variation on that theme: “We who are not about to die salute you.”

A big thank-you to all who persist in the field of cancer research, despite setbacks!

August 23, 2012 – You Takes Your Chances

Here’s an article that gives me pause. In the August 20 “Well” medical blog in the New York Times, Jane E. Brody comments on the possible overuse of medical diagnostic scans that could contribute to secondary cancers: perhaps as many as 1.5% of all the cancers that occur in the United States.

And why is this of such concern to me?  To anyone who knows my medical history, it should be obvious.  Ever since my non-Hodgkin lymphoma diagnosis in late 2005, I’ve received somewhere between two and five radiation-based scans a year: some of them CT scans, others CT scans combined with a PET scan. I had the greatest number of these during and just after my chemotherapy. In recent years, the number of scans has decreased: first, to about three a year, and now, two.  With my indolent lymphoma continuing to snooze away, I seem, now, to have settled into a pattern of two alternating scans a year: one CT, the other PET/CT.

These are not quite full-body scans, but are pretty close to it: neck, chest, abdomen and pelvis.  Everything but the arms, leg and head, in other words.

I’ve had so many scans, I’ve lost count. Really. I probably should have kept a central log of all my scans, but I haven’t – although I suppose that information could easily be mined from my thick file at Dr. Lerner’s office.

Now, here’s the kicker. Just over a year ago, I had surgery to remove my cancerous thyroid gland.  Was the thyroid cancer merely a matter of bad luck – a disorder I was destined to develop anyway, independent of the lymphoma? Or was it caused by something related to my previous cancer treatment - like radiation from all those diagnostic tests?

A CT scan delivers a relatively modest, measurable amount of radiation.  In and of itself, one scan doesn’t amount to much. The question no one really knows the answer to is whether or not there’s a cumulative effect.

A PET scan is a whole other matter. With respect to radiation, PET scans are to CT scans as a double vodka is to a thimbleful of beer. They involve getting injected with a radioactive-glucose solution that courses throughout the body, carried by the blood.

Ever since getting diagnosed with thyroid cancer, I’ve wondered about the secondary-cancer thing - but reading this article brings that worry home once again. I know that, after a nuclear disaster like Chernobyl or Fukushima, the first thing people in the affected geographic region are supposed to do is swallow potassium iodide pills to protect their thyroids. The thyroid, it seems, is the organ in the body most susceptible to radiation.

It's like the canary in the coal mine.  Or, the uranium mine.

This next bit of information is, of course, anecdotal, but it gives me something more to think about.  Last fall, when I went for my post-thyroidectomy radioactive-iodine treatment, I shared the treatment room that afternoon with a young Hodgkin lymphoma survivor who had undergone her chemotherapy at exactly the same time I’d had mine.  She had Hodgkins and I non-Hodgkins, so our chemo regimens were naturally different, but presumably, in the years that followed, she received roughly the same series of diagnostic scans as I did – to make sure her cancer was gone, and stayed gone.

Two blood-cancer patients. Both treated for their cancer at the same time. Both develop thyroid cancer and have thyroidectomies at about the same time. Coincidence?

Maybe.  Like I said, the “evidence,” such as it is, is purely anecdotal.  Two cases do not a medical trend make.

But, still... it does make you think.

Of course, the radioactive-iodine treatments she and I both received – swallowing those hot pills, in order to fry any leftover thyroid tissue still floating around in our bodies – was a way-bigger jolt than anything delivered by a diagnostic scan.  She and I ingested so much radioactive material, we had to keep our distance from our loved ones for several days afterwards.  Granted, thyroid cancer was no longer an issue for either of us - we no longer had thyroid glands. But, what about our other organs?

Don’t get me wrong.  I dutifully submitted to all those diagnostic scans and will continue to do so, because it’s important to keep a vigilant eye on my lymph nodes. Six years ago, I let my medical bartenders drip six highly-toxic chemo cocktails into my veins, knowing that at least one of the ingredients in those concotions, adriamycin - the one they call “the red death” - burns the skin on contact and is strongly suspected to cause secondary cancers in a small, but measurable percentage of patients.

If my lymphoma ever yawns, throws off the bedclothes and gets up to stumble around like Frankenstein's monster, one of the treatment options I'll want at the top of my list is radioimmunotherapy (Bexxar or Zevalin), which involves an injection of Rituxan bonded to radioactive material.

It’s all about the odds. We cancer patients say “bottoms up” to the chemo bartender.  We shoot up with radioactive glucose like some oncological junkie.  We smile and say “cheese” to the PET-scan photographer.  And all because we know our odds are better with those interventions than without them. The oncological Russian-roulette revolver may hold considerably more than the traditional six rounds, but even if its rotating cylinder’s chambers are numbered in the hundreds, one of them does still hold a bullet.

We pays our money (or, our insurance companies do).  And, we takes our chances.

It has ever been so, in Cancerworld.

July 4, 2012 – Preaching from a Wheelchair

I’m spending the Fourth of July in Pittsburgh, at the Presbyterian Church (U.S.A.)’s 220th  General Assembly, which is meeting all week. Presiding over the General Assembly is an elected Moderator, an officeholder who’s sometimes an ordained minister (a position we sometimes call “teaching elder”) or a lay leader (a “ruling elder”).  For the past couple of years, Cynthia Bolbach, a ruling elder from Washington, D.C., has been our Moderator.  On Saturday, as planned, she passed the Moderator’s cross and stole to the Rev. Neal Presa, whom this Assembly had just elected as her successor.

Cindy has served the church during a difficult time.  At the 2010 General Assembly, the church opened the door just a crack, removing a constitutional provision that barred those in committed same-sex relationships from ordination as deacons, ruling elders or teaching elders. Now it’s up to the ordaining bodies – presbyteries in the case of ministers, or local-church sessions, in the case of ministers – to decide who’s suitable to serve.

Because it’s the Moderator’s job when the Assembly’s not in session – which is most of the time – to travel around the country, even the world, promoting and interpreting what the church is doing, Cindy’s had to deal with more than the usual number of angry Presbyterians who just don’t understand why the national church would allow such a thing.

By all accounts, she’s done a marvelous job. As with no other issue, the question of the ordination of gays and lesbians  brings out the worst in some people. Again and again, Cindy has walked into confrontational situations and faced anger, in some cases even outright meanness, with patience and grace.

She’s not walking much any longer. During her moderatorial tenure, Cindy was diagnosed with cancer.  She’s not shared the particular type of cancer she has, nor her prognosis – preferrring to keep that information private – but she did let it be known that her swan song here in Pittsburgh is taking place during a round of chemotherapy treatments.

Cindy preached, and presided over the opening session of the Assembly, from a wheelchair. This is something she chose to do.  She had a very able Vice-Moderator, the Rev. Landon Whitsitt, who could certainly have carried on in her absence, but it was obviously important to her to finish the job herself.  On both days when she was in front of the Assembly, Cindy seemed low on energy, but she fulfilled her role with grace and good humor.

Cindy simply did what people with cancer most want to do.  She kept on living.

I don’t think she’ll be much in evidence during the rest of the Assembly.  Having passed the mantle to her successor, she may have gone back home to continue her treatments, for all I know. Or, she may be simply taking it easy, conserving her energy for the things she most wants to do.

Whatever the case, whether here in Pittsburgh or back home in Washington, Cindy is surrounded by the prayers of a grateful church.  We admire her strength, perseverance and faith.

June 25, 2012 – Tweaking the Cocktail

If ever there were a good time to be a lymphoma patient (not that I think there ever is), it’s now.  Every annual meeting of ASCO (the American Society of Clinical Oncologists) seems to offer news of some new variation on treatment protocols that promises a heightened survival rate.

The latest one for follicular lymphoma – as I learn today from an e-mail bulletin sent around by the Leukemia and Lymphoma Society – is a new combination of Rituxan (the monoclonal antibody drug I received along with my CHOP chemotherapy) and an old drug that’s been around for a while, Revlimid:

“John Leonard, M.D., of Weill Medical College of Cornell University presented promising results for a Phase III trial of a new Rituxan combination to treat patients with follicular lymphoma (FL). Dr. Leonard reported that using Revlimid plus Rituxan very much increased overall response rates for relapsed FL patients (73% in this trial vs. 50% for Rituxan only in previous trials). A Phase II trial of this combination for newly diagnosed FL patients is already underway.”

Revlimid, its manufacturers admit on their website, is an “analogue” of Thalidomide – one of the scariest names out there in the field of pharmacology. OK, let’s be real: Revlimid is Thalidomide, but with the drug’s notorious history I can understand why they’d rename it.  I still remember, as a kid, paging through an issue of LIFE magazine with its chilling, black-and-white photos of the children born with horrible birth defects as a result of that drug.  From 1957 to 1961, Thalidomide was commonly given to expectant mothers to prevent morning sickness.  No one knew that many of the children born to these unfortunate mothers would have no arms – other than small, vestigial appendages that could in no way substitute for the real thing. Very sad.  (Not to mention, a gold mine for the trial lawyers.)

As a cancer drug, Revlimid is evidently effective: and, as long as the patient isn’t an expectant mother, it’s supposed to be safe (or, at least, as safe as most other cancer drugs, all of which have a certain risk to them).  Lots of chemo drugs come with a warning label saying they’re not for expectant mothers, or may cause sterility.  Doctors have raised that sort of warning with me, at various times as I prepared for treatment, but when I tell them Claire and I are not only done having children, but that I’ve had a vasectomy, it lays those concerns to rest pretty quickly.

It’s not cheap, though: Wikipedia.com reports that Revlimid (medical name, Lenalidomide) costs an average of $163,381 per year.  Ouch.

Dr. Leonard’s work is only a Phase I trial, with Phase II now underway, so this drug cocktail is a long way from being ready for prime time.  I’m glad to know someone’s out there, though, with the medical-research equivalent of a cocktail shaker, trying out new drug combinations.  From early indications, chances are that this one may be in production in several years’ time, so it's one more reason to be hopeful, should the day come when I need treatment again.

June 20, 2012 – Looking for Burglars in an Empty House

Today I drive to Memorial Sloan-Kettering’s satellite facility in Basking Ridge for a follow-up visit with Dr. Boyle, my thyroid surgeon.

The worst part of the trip, it turns out, is the drive up there.  I-287, a ring-road around New York City, is one of the most congested highways in the country.  Today, it’s a parking lot.  Given the time of day, there has to have been an accident or breakdown or something, but I don’t stick around to find out. Already running late, I bail out at the nearest exit (once I creep up to it), and use my GPS to chart out an alternate route on back roads.

I’m an hour late when I get to the place, but they manage to adapt.  First is a thyroid ultrasound – one of the easiest medical tests ever, from the patient’s standpoint.  Lie down on your back on a gurney, in a darkened room, while the technician squirts pre-warmed goo on your neck (that’s a technical medical term, I believe) then slides a sensing device all over your neck for five minutes or so.

It occurs to me, as I’m lying there looking up at the ceiling, that this follow-up test is something like looking for burglars in an empty house.  I no longer have a thyroid gland, and Dr. Boyle was confident, following the surgery, that he’d removed the entire thing, leaving no thyroid tissue behind.  I had the radioactive iodine treatment last fall, just in case.  Today’s visit is likewise one of those “just in case” situations.

The visit with the doctor himself is brief and uneventful. After ascertaining that I’m having no difficulties, and that I’m continuing to see his colleague Dr. Fish, the endocrinologist, to make sure I’m taking the most appropriate daily dose of Synthroid (the replacement thyroid hormone), he tells me I’m doing fine and that he’d like to see me in a year.

That’s encouraging.  I wonder about the necessity of today’s test and consultation, but I suppose it fits into some kind of standard follow-up protocol.

I didn’t think we’d turn up any burglars.  What would they be looking to steal, anyway, after the scorched-earth policy of my thyroidectomy?

June 11, 2012 – Robin Roberts, Survivor

A remarkable television moment this morning, as ABC Good Morning America broadcaster Robin Roberts delivers an emotional announcement that she has myelodysplastic syndrome (MDS), and is starting treatment that will ultimately result in a bone-marrow transplant.

This isn’t the first time Robin has been in the news with a very personal medical story.  Five years ago, she received successful treatment for breast cancer, and spoke about it on the air. Today, she sat on a couch with other members of the Good Morning America team gathered around her for support, and told her viewing public of her diagnosis.  A helpful stagehand had attached a box of Kleenex to the couch with velcro.  She didn't need it.

It’s really worth watching the video clip of Robin’s Good Morning America announcement.  It’s a fascinating mini-case-study of what it means to live with cancer, in community with others. The reactions of her colleagues sitting on either side of her are just as illuminating to watch as she herself is.



Although Robin didn’t use the “C” word on the air, MDS is considered to be a blood cancer in the same family as leukemia and lymphoma.  Treatments are similar.  Robin has the good fortune to have a sister who’s a perfect donor match (which tells me she’s going to have an allogeneic stem cell transplant, generally considered to be the most effective).  Good for her.

At such future time as I may have to have a stem cell transplant, a donor’s not going to be so easy to find.  Both my brothers have been tested, and we’ve learned that neither one of them fits into the 25% of siblings who are typically a good match, so I’d have to rely on finding a volunteer through the National Bone Marrow Donor Registry.

Robin is planning to continue working, even though a PIC line may be visible on her arm (not a big deal for most people, but in the image-conscious world of TV journalism, it’s significant). She will, of course, eventually be out on sick leave for an extended period of time, as she goes into isolation for the actual transplant.  Yet, in the months leading up to that time, as she receives various drugs to prepare her for the big event, she’s going to keep going before the cameras, living life as usual.

While this may sound extraordinarily courageous to some viewers – and, indeed, to some of Robin’s colleagues sharing the couch with her – to anyone who’s been in that situation it’s not so surprising. What most of us want to do, once we’ve gotten over the initial shock of our diagnosis, is to keep on living our lives.  This is the second time around for Robin, when it comes to cancer treatment. While she’s obviously emotional going before the cameras to tell her story, it makes sense to me that she wants to keep on keeping on, with a minimum of fuss.  In Robin’s own words, “It’s about focusing on the fight, and not the fright.”

If her viewers catch sight of a bandage on her arm, indicating the presence of her PIC line, then it will be a helpful reminder that there are far more people living with cancer than dying from it.

December 30, 2011 - More on Out-of-Reach Zevalin

Dr. Vance Esler, oncologist and blogger, posted a comment on my last entry that's worth my cutting and pasting it here:

"Carl, it is an oversimplification to say that oncologists don't refer patients for Bexxar or Zevalin because it isn't in their own personal arsenal. In fact, a fair amount of the treatment is done by the medical oncologists.

Every day medical oncologists take financial risks. We buy and administer expensive drugs, hoping that the insurance carriers will reimburse us enough to cover the costs. We are used to this.

But Bexxar and Zevalin are administered by nuclear medicine physicians, and they are NOT used to taking the financial risks. Furthermore, they don't know how to bill for such drugs, and they are afraid to try.

So no one in our 600,000 person service area offers the treatments. The medical oncologists are not licensed to dispense the drugs, and the people who are licensed are afraid to take the financial risks.

Thus, the medical oncologists are forced to look for alternatives."

Interesting perspective Vance has: that it tends to be the nuclear-medicine doctors who aren't up to speed on administering radio-immunotherapy agents like Bexxar and Zevalin, and are therefore more likely than oncologists to be at the root of the problems these effective medications have had in making their way into the marketplace.  Vance knows a lot more about this than me, so I'm happy to say that I stand corrected.

I find it pretty shocking that his 600,000-person service area in Texas doesn't have a single qualified specialist who's stepped up to the plate to offer these treatments to patients who could use them.

Still, to me this points out, once again, the shortcomings of our free-market, entrepreneurial approach to healthcare funding, that puts doctors in the position of having to assume unacceptable financial risks in order to deliver proven, effective treatments to their patients.  Those who are determined to keep the government out of healthcare funding are continually spouting the line that, left alone, the invisible hand of the market will eventually even everything out.  This is a clear example of just how false such economic dogma is, when applied to cancer treatments.

December 23, 2011– Mademoiselle Zevalin’s Empty Dance Card

Interesting article, here, about the difficulties ibritumomab tiuxetan (Zevalin) has been having, getting accepted as an effective treatment for non-Hodgkin lymphoma.

So, at the Oncologists’ Ball, why is Zevalin – which is actually a pretty hot little number – treated like such a wallflower?  Dr. John Pagel, of the Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance, thinks he understands the reason:

“Unfortunately, oncologists still have to refer the patient to a radiation oncologist or nuclear medicine physician for administration of the drug, which can be a barrier for treatment in some cases.”

Gee, d’ya think?

For most oncologists to prescribe Zevalin for their patients, they have to give up the privilege of dispensing treatment themselves.  Since many oncologists – who have invested big bucks in elaborate chemo suites, where they dispense medicines costing tens of thousands of dollars – earn their money not just from the medical wisdom they dole out, but also from the meds, telling a patient “I think Zevalin could help you” means foregoing the income from several months of costly chemo treatments.

Is it any wonder so many oncologists stick to the classic approaches, which just so happen to use the treatment agents they’re licensed to dispense?

Zevalin, along with Bexxar (the other leading drug of this type), is the highly-effective Rituximab bonded with radioactive particles.  The CD-20 targeting agent in Rituximab seeks out and travels to the malignant cells – unleashing Rituximab’s own cancer-fighting properties – but then the radiation zaps ‘em again.  It’s a potent one-two punch.

Sort of reminds me of the sharks with laser beams that were the weapon Dr. Evil lusted after in the silly Austin Powers movies.  Rituximab’s the shark.  Radiation’s the laser beam.  Get it? (Can you hear the screams of a metaphor being stretched beyond all recognition?)

How do you suppose radioimmunotherapy studies of drugs like Zevalin are received at professional conferences, when very few of the members of the professional association are licensed to dispense the drug?  (Doctors who administer radioimmunotherapy have to be double-qualified, both in oncology and in either radiology or nuclear medicine.)  These docs-on-holiday hear reports of the science behind these treatments, and they can’t really argue with it, but it can’t fail to enter their minds that, in order to prescribe these drugs, they’ll have to let some other doctor’s practice collect the revenue.

I’m not charging oncologists with running some kind of cartel or cover-up.  It's just that I'm enough of a Calvinist to point out that they’re only human, and therefore such a thought can’t fail to enter their minds.

Again, it’s the basic structure of our healthcare system that’s the real root of the problem. Force doctors to function as small-business entrepreneurs who are paid according to treatments dispensed rather than according to clinical outcomes, and a proven drug like Zevalin gets pushed to the back burner.

It would be interesting for someone to study which sorts of oncologists are referring patients for radioimmunotherapy more often – those who own their own practices, or those who work for organizations like the Mayo Clinic, where they’re all on salary.

Are there any investigative journalists reading this, looking for a scoop?  Just crunch those numbers. I’ll bet you’ll see a correlation.

November 9, 2011 – Second-Guessing Symptoms

I’ve developed a sore throat today.

That in itself is unexceptional.  It’s November, and we’ve had some unseasonably warm days.  It’s the sort of weather when sometimes I go out without a jacket and discover it’s a little chillier than I thought, having observed the bright, inviting sunshine through the window.

Prime time for sore throats and other cold symptoms, in other words.

Yet, I can’t help recalling what they told me up at Sloan-Kettering about the dry mouth that’s a common side effect of radioactive-iodine treatments.  It can kick in any time from a day or two after the procedure until many weeks later.  And it can last up to a year.

The preventative?  Suck on sour candy to keep the ol' salivary glands a-pumping.

Sounds like old-timey apothecary’s advice, doesn’t it?

I bought a bag of sour balls and have been following instructions, although the last day or two, I’ve been slacking off.  Everything seemed fine, so I figured that was maybe OK to do.

My mouth doesn’t feel especially dry right now, but maybe this is how it begins, I tell myself.

On the other hand, maybe it’s just a plain, garden-variety sore throat.

After you’ve had cancer treatment, they give you long lists of symptoms to look out for. Very often there are so many of these, and they’re of such variety, that they can be easily be confused with other, minor ailments that come and go.

Yet, there’s something about our wayward minds that leads a great many of us to imagine the worst-case scenario.

Is my sore throat the result of suddenly-underactive salivary glands that were singed by the radiation?  Or is it just the beginnings of a common cold?

At lunchtime I drove over to the drugstore and invested in a jumbo bag of lemon-mint Ricola throat lozenges.  I figure that covers both eventualities.

Pucker up!