Signposts in the War Zone

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When describing the emotional effects of getting a cancer diagnosis, Michael Lerner of the Commonweal Cancer Help Program put it this way: “Receiving a cancer diagnosis is like a soldier being dropped into a jungle war zone without a map, compass or training.”

An apt description.

Except that a soldier at least has weapons.

Thankfully, in the jungle war zone of cancer are guides, who appear in various forms: the oncologists and radiation specialists who direct your treatment, the infusion nurses who explain what will happen along the way, fellow patients and cancer survivors who can tell you their stories and really understand what you might be experiencing. They have cleared your path through the jungle.

But also along that path are a variety of signposts, some helpful, some not, and it is often only in hindsight that the value of those signposts is clear.

Unfortunately, some of the signs that the experts post on the jungle path point the wrong way.  For example, a recent report from the Yale Cancer Center determined that between 10% and 20% of breast cancers classified as estrogen-receptor-negative might actually be positive. In an already chaotic landscape full of noise and confusion, such a misdiagnosis only heightens your fear and sense of helplessness, and can add a hefty measure of anger that you carry with you as you retreat to find the right path.

At other times, a signpost might be erected only to be taken down later on. Earlier this year, the FDA revoked its approval of Avastin for patients with breast cancer, saying that it was not safe or effective.  Avastin is a chemotherapy drug used to treat a variety of cancers, but according to the FDA, the risk-benefit ratio for those with breast cancer doesn’t merit use of the drug. So those who had luck in following this signpost no longer are able to, and that includes the women with triple-negative cancer who did benefit from its use. This dilemma, however, applies only to women on the jungle path in the U.S.  Avastin is still approved for use in breast cancer patients in 84 other countries.

Sometimes, a signpost is erected too soon and serves only to provoke anxiety. A report from the UCLA Medical Center links high levels of stress to the spread of cancer. Besides inducing more stress about stress, the additional irony is that this signpost is only for mice as yet, not humans. So too for the signposts about the effects of ACE inhibitors and beta-blockers and chondroitin sulfate.

There’s something to be said for posting signs of hope along the path, as these reports do with their results. But with that hope comes the risk of disappointment when the findings of further studies serve to dismantle these signposts.

And always, along any path, some signposts might even be missed.  Back in June, a briefing in the journal Cancer reported that almost half of women with advanced breast cancer over the age of 65 “are not receiving post-mastectomy radiation treatment, despite the publication of major guidelines recommending the therapy.”

On my particular path through the jungle, two signposts directed the type and frequency of my chemotherapy.  At the time I underwent chemo, the largest signpost read ACT – Adriamycin, Cytoxan, and Taxol – the only chemo cocktail available for those of us with triple-negative disease.  By the time I had chemotherapy, however, a new signpost had been added to this one, and it read “dose-dense therapy,” a different way of administering the drugs.  Instead of receiving one large dose of drugs every 3 weeks, as is customary for many types of cancer, I received a smaller dose every week for 24 weeks.  The premise of this “metronomic” dosing is that the cancer would have less of a chance to regenerate with a steadier dose of drugs and the side effects would be minimized. I followed these signposts because my guide, my oncologist, pointed me that way.

In hindsight, it’s been a relief to find that these two signposts did indeed have merit.  A study of Adriamycin and Cytoxan, from a group of drugs called anthracyclines, used in conjunction with a taxane drug are an effective treatment for triple-negative disease, but not for other types of breast cancer. The review noted that the combination works best in adjuvant treatment—that is, chemo after surgery (rather than before) – the approach the doctors used for me. Another study determined that dose-dense chemotherapy is most effective for hormone-negative breast cancer, with better overall and disease-free survival. These studies validated the merit of two of the signposts on my path. With a sigh of relief, I can walk a little taller on the road.

Those of us affected by cancer, either directly or indirectly, will always be in the jungle because cancer and the treatments for it are always changing, always confusing, and it’s difficult to get your bearings. We note the signposts and choose the direction, our only weapons the health care workers who point the way and our own stamina and determination.

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The Wild West of Treatment

Well it’s been another wild week in west Olympia.  With the time off work and my part-time hired help, you’d think I’d have nothing but time on my hands.  Wish it were so.

This week’s infusion went ahead as scheduled, number two in the Taxol series, even though my white count has dropped again.  Down to 2.0, that pesky threshold number that can make or break the routine.  My doctor said it was OK to go ahead though, since the total count wasn’t below 2.0 and the neutrophils, the most important subset of white cells, were acceptable.  We don’t know the reason for the drop. Could be just the one injection of Neupogen last week (we were anticipating being able to back off these because the Taxol is “kinder and gentler” to bone marrow), could be still some fallout from the Adriamycin/Cytoxan.  Apparently, those drugs can have residual effects for up to 3 weeks after they’re stopped.

Which is why I can’t yet answer the question I’ve been asked: How is the new drug making me feel?  Seems I’m still in a transition phase.

As with last week, the premedication of Benadryl knocked me out and I had a nice nap during the infusion.  I can’t eat a popsicle while I sleep, but I’m still trying to figure out how to work the angles on that treat.  I didn’t put my hands on ice yet. The naturopath suggested it, the oncologist said he didn’t think it necessary, and the nurses can go either way.  So much for the idea of science being hard and fast.

Fortunately, the drowsiness from the Benadryl dissipated quicker — I’m told a body builds tolerance to it — so I got by without a nap at home.  I’m still on the steroid energy kick, which usually washes out around Thursday afternoon. Though the drugs have changed, I’m still taking about the same number of them, and will have a clearer sense in a couple weeks of exactly what’s happening.

I’ll continue with the Neupogen, hoping the white cells level off soon.  The night-time dose of Ativan seems to have lost its effect, so I’m making the switch to melatonin in search of that increasingly elusive good night’s sleep. Another side effect of the chemotherapy is instant menopause, with all its inherent, uh, charms. The most bothersome of these at the moment is the night sweats. Throw the covers off. Get cold. Drag the comforter back on.  Get hot.  Throw the covers off….  You’d think all that activity would count for aerobic exercise. I could work off any weight gain from a bedtime snack in no time at all.

But surely there are better ways to maintain weight. Can’t stay in the triple digits with all that activity.

Anyway, between the sweats and my son’s middle-of-the-night growing pains (those darn children — they GROW, and at the most inconvenient times), the steroid high and the Benadryl knockout, it does feel a bit like the Wild West in my body and soul this week.  Chemicals leave their mark on the psyche as much as they do on the body.

I continue to puzzle over how I came to be in this situation. I have few risk factors (70%of patients don’t have any of the standard factors) and no family history (only 15% of patients have one).  I’ve taken pretty good care of myself, done the exercise, eaten healthful foods, gotten the mammograms.  I think about where I’ve lived, possible chemical/carcinogen exposures. It’s a never-ending loop and I look for any truth in public information that can help me make sense of things.

Last week, I attended a dinner for breast cancer survivors (something I both dreaded and desired), and the keynote speaker addressed some of the psychological impact of this diagnosis. She said that everyone dealing with this disease tries to figure out what caused it, even though no one can ever tell you what lead to its development. There’s no direct link as there is for smoking and lung cancer.  But she said it’s a necessary part of the mental process once a patient receives the diagnosis, so at least I know my line of thought is normal, even though the search may be futile. As part of the process of making sense of things, I’m trying to dig below the surface of generic public information to find the truth as I am discovering it to be.

One publication that holds a tremendous amount of data is the annual report by the American Cancer Society (Cancer Facts and Figures) that shows in detail the cancer rates throughout the country by type of cancer, sex, age, geographic region and other details. If you’re interested, you can find it here:
http://www.cancer.org/downloads/STT/500809web.pdf

There’s more information than you might want, but the map alone is worth a look.  In the section on breast cancer, I found a bit of truth that has been missing from most generic public sources on the subject: the fact that having dense breast tissue can be considered a risk factor and has a definite influence on how accurate a mammogram is.  The more I’ve thought about my situation, the more irritated I’ve become with that mantra projected at women: “Get your yearly mammogram!” as though that’s the surefire way to catch breast cancer early.

I’m guessing I’m not the only woman who’s gotten caught in that gray area where mammograms fail. It’s good to finally see science starting to register dense tissue as a risk factor, but it’s still not showing up on the information that’s disseminated to the general public. I’d like to see that change. I’d also like to see better methods for catching this disease when it really is early. If breast cancer really is present for 3, 5 or even 6 or 8 years (as Dr. Susan Love believes) before it can be detected on mammograms, there has to be a way to catch the disease sooner. Mammography is not actually a form of
early detection.

Of course something patients with any illness wonder about is whether they’re getting the best care available, and that’s true for me as well. We have done our due diligence of reading and research, getting second opinions, keeping our eyes open and, fortunately, I’ve consistently come to the conclusion that I’m in good hands of care. That feeling was enhanced by an informative article in this week’s Newsweek that researched outcomes of cancer treatment at medical centers around the country. The article helps clarify the confusion about where to go and what to expect for various treatment centers. If you’re interested, you can find that article here: http://www.newsweek.com/id/218235.

A couple people have commented to me how courageous I am, going through all this. I don’t know as that courage really has much to do with it. Yes, it’s a necessary component of the journey, but when you’re put on a sudden and serious path, and it’s the only way through the forest, the journey has less to do with courage than simply doing what has to be done. Can you call it courage when there really isn’t any other choice?

The Politics of Cancer Drugs

Another gorgeous day with The Mountain. We’re having a lucky string of beautiful days, but it can’t be Indian summer yet (she says, fingers crossed) because we haven’t had a frost.

The happy drugs are still at work, so I feel good and managed to do this morning ALL those dastardly exercises I’m supposed to be doing every day.  I’ve been frustrated at the slow progress of regaining full arm motion and getting rid of residual numbness and pain. The surgery was back in mid-June, after all. But the physical therapist says chemotherapy slows everything down, so she thinks I’m doing fine.

The Popsicle Report:  Doesn’t matter what shade it is — light, medium or dark — green is a yucky flavor.

I passed the halfway point of chemo yesterday (yeah!) with the last infusion of the Adriamycin, and will finish off the Cytoxan this week. White cells are at 3.8, a little low, but still manageable for continuing treatment.  I should be getting a flu shot, but would like to wait till the white cells are back up into normal range.

My next lesson in chemistry comes with the drug I switch to next week — Taxol.  This drug was developed beginning in the 1960s from the bark of the Pacific yew tree (a more appealing source than the red dirt Adriamycin came from!). The original tree, Taxus brevifolia, was found in a forest north of the town of Packwood, out here in Washington, so it seems I’m in the neighborhood of its origin. But there were delays along the research road, which included fights, even in Congress, over who had fair claim to it and its trademarked name, and ecological concerns about the destruction of the trees for the sake of collecting the bark. So the drug only came into use in the late 1980s. Fortunately, alternate sources for Taxol have been developed, so the Pacific yew tree is safe once more.  Taxol is also used to treat lung, ovarian, and head/neck cancer.

The messy details of the drug’s development give some credence to the claim by pharmaceutical companies that drugs are expensive to research and produce (thus justifying their high costs), but it’s sad to see how politics and greed get in the way of important drugs reaching patients.  On the other hand, there’s the problem of drugs being released before there is sufficient follow-up data to be sure they’re safe. A recent example are the reports that are starting to surface about the Gardasil vaccine for the HPV virus. This one doesn’t affect me directly, but my daughter falls into the age group it’s being recommended for.

As with Adriamycin and Cytoxan, Taxol goes after rapidly dividing cells, so again there are the side effects of hair loss and mouth sores, along with the added possibility of neuropathy (tingling, burning and other nerve problems) in fingers and toes. The infusion will take about an hour, longer than what I’ve been having, but I don’t know if that time includes a Popsicle. There are other side effects, some of which are related not to the drug but to the solution the drug is suspended in for infusion. So along with my happy drug, dexamethasone, I’ll also have to take some Benadryl and Zantac before the infusion to prevent an allergic reaction. The nurse said she’d need to sit with me for the first 15 to 20 minutes of the first infusion to monitor for any reaction. Apparently, if it’s going to happen, it happens the first time, but not after that.  (Gee, nothing like a little heightened anxiety for making the switch.)  But she also said that, compared to the drugs I’m on now, Taxol is “a walk in the park.” Makes you wonder what kind of parks these nurses walk in.

As cancer-treating drugs go, Taxol does seem a bit safer than Adriamycin and Cytoxan, which both show up as known or probable carcinogens on the list put out by the American Cancer Society. If you want to see what else is on the list, you can find it at:  http://www.cancer.org/docroot/PED/content/PED_1_3x_Known_and_Probable_Carcinogens.asp

You’ll recognize some of the standard elements we’ve heard about: asbestos, formaldehyde, radium, and mustard gas.  But there are some surprising items listed too: betel nut, Chinese-style salted fish.  And chimney sweeps and furniture manufacturers beware — your whole profession can induce cancer.

Other cancer-fighting treatments show up on the list as well.  Tamoxifen, widely used in treating certain types of breast cancer (but not mine) is there, as is arsenic, which the infusion nurse tells me is used in minute amounts for a certain type of leukemia.  People undergoing that treatment get a small dose every day (including weekends) over the course of a year.  This idea of using cancer-inducing substances to treat cancer is a bit like the “hair of the dog” cure for a hangover. “Here, take some of what can make you sick. You’ll feel better!”  (By the way, alcohol consumption shows up on the carcinogen list too.)

Two other items that show up on the list are birth control pills and hormone replacement therapy (HRT), estrogen being the culprit behind both. If you look at lists of risk factors for breast cancer published for the general public (for example: http://www.mayoclinic.com/health/breast-cancer/DS00328/DSECTION=risk-factors), you’ll see HRT there. But the use of birth control pills is conspicuously absent from that list. So here is yet another gray area in the world of medicine and science with respect to cancer. What do we really know about the causes (because all of us with this diagnosis rack our brains trying to figure out how we got it) and why is there so much conflicting information about it?

The harder you look, the more elusive the answers.

So I comfort myself by looking at the surprising connections arising from my situation.  During a bout of warm sunny weather a few weeks back, I was basking out on the deck, head uncovered, taking care of paperwork, phone calls, etc. The hummingbirds had no interest in me this time, but the next morning I noticed my scalp was pink.  A bit of a sunburn there.  As I was describing the situation to my dad on the phone later that day, he said “Yeah, that happens to me every year.”  And in a different phone conversation, my brother admitted that he has the same problem, adding “just wait till it starts to peel.”

Never thought I’d be commiserating with my male relatives about a sunburned head.

Better Living Through Chemistry?

Happy first day of autumn.
Out here, we’ve taken a trip back into summer — gorgeous day, 80 degrees.  Last night, we refilled the hummingbird feeder, hoping to prolong the little guys’ visits. We had four this year and the kids named them: Fred, Bob (or Bobette, we’re not sure of the sex), Noodle Neck and Clementine.  So now along with begging for a cat, a rabbit, a snake, or another pet, my son also wants a hummingbird to keep.  Too bad.  He’s stuck with just a dog. Unless he wants to make pets out of the spiders. It’s spider season here.

The Popsicle Report:  Yesterday’s flavor — purple.  Not grape.  Not raspberry.  Just one of those popsicles whose flavor is its color.  Purple.

We weren’t sure what to expect with the infusion yesterday.  The cold my son brought home last week he shared first with my husband and then with me, and I’m still coughing. We weren’t sure if they could do the infusion under the circumstances, but since I haven’t been running a fever and the white cell count looked “beautiful” as the doc put it (I’m sure he meant that in the scientific not the aesthetic sense), the routine continued.  I talked with Dr. L at length about the rollercoaster pattern of the white cell count.  He said it’s not unusual during chemotherapy, and not necessarily something to worry about, unless it forces a significant delay in the schedule.

So we’ve figured that 2 shots of Neupogen a week are sufficient — 3 being an overabundance and 1 being obviously not enough.  We’re trying not to be “wasteful” (as the doc put it) with the Neupogen — given that a month’s dosing (at 3 shots a week) is $6,000.00.  (Yes, that price is right.  There’s no generic version.)  Thankfully, our insurance coverage brings our co-pay down to $25 per order. We’re not sure if I’ll still need it after the switch to Taxol in a couple weeks, so I have to call in a refill order that’s as precise as possible. The pharmacy doesn’t take back leftovers, but the doc says if we don’t use it all, he can pass the extras on to those who need but can’t afford the drug.

As I was thinking about all these drugs I’m taking, I decided to do a little research. Not into the side effects, since I was overloaded with information about those at the beginning, but into the genealogy, so to speak.

Adriamycin caught my attention primarily because of the name (Its generic name is doxorubicin; Adriamycin is the brand name).  The -mycin part gives it away as an anthracycline/antibiotic, and it’s used to treat a variety of cancers: prostate, breast, lymphoma, ovarian, and others. It works by short-circuiting the DNA of cancer cells so that they die. The drug was developed in the 1950s in Italy from soil microbes, and got its notorious cherry-popsicle color from the red soil the microbes were taken from.  The prefix Adria-, as it turns out, indicates the geographic region of Italy where the microbes were found — near the Adriatic Sea.

Now isn’t that a lovely image for a drug whose nicknames are “red devil” and “red death.”

Cytoxan, the drug I take daily in pill form (generic name: cyclophospamide), is also used to treat diseases besides cancer:  autoimmune disorders like lupus and rheumatoid arthritis, something called Minimal Change Disease (a kidney disease in children), and multiple sclerosis. It too works by stopping cell growth, and was first developed and tested in the 1950s.

Neupogen (generic: filgrastim) is the magic drug to build white blood cells, specifically neutrophils.  It’s used primarily for patients undergoing cancer treatment, but also for anyone exposed to dangerously high levels of radiation. On the box, it says the drug is a recombinant granulocyte colony stimulating factor (rG-CSF) derived from (can it be?)  E. coli. This is the first I’ve ever heard of E. coli being a useful thing.  Think of that the next time you contemplate your spinach.

My “happy drug” — the steroid I get just before the infusion — is dexamethasone (brand name: Decadron). It prevents inflammation and suppresses the immune system, and they give it to patients like me to prevent any reactions to the Adriamycin infusion and enhance the effects of the antinausea med.  But it’s used for a wide range of situations, anything from dental work to altitude sickness and even ear infections in dogs. With prolonged use, it can make you gain weight (though those shots of olive oil might be the better choice), and has a host of other nasty side-effects with long-term use. I haven’t noticed any “‘roid rage” on the minimal dose I get, but I sure can get grouchy a couple days after the infusion as the drug flushes out of my system. A friend of mine said that, if she had only 6 months to live, this would be the drug she’d take because of its mood-enhancing effects.

The one other drug I take (besides the Ativan at night for sleep) is Zofran (generic: ondansetron). It’s strictly an anti-emetic, meaning it prevents vomiting, and is a fairly new drug, being patented in the 1980s and FDA-approved in the ’90s.  The first generic appeared in 2006 (which maybe explains why I’ve taken 3 different versions of this drug — one round and yellow, one oblong and white, and the flavor-coated, fast-dissolving one they give me before the infusion). Other, off-label uses include treating schizophrenia, sleep apnea, Parkinson’s disease, addiction to opium, and alcoholism.

With all these drugs and the supplements the naturopath suggested (probiotic, fish oil, CoQ10), I rather wonder how much of my blood is really blood. Advertisers did once promise us “better living through chemistry.”  I wonder if this is what they had in mind.

Dive-Bombed by a Hummingbird

I’m a bit late getting this out due to the clutter on my desk and in my brain.  I just realized it’s SEPTEMBER already, and time speeds on. The sun is out.  The mountain is out (though it looks like we’ll get rained on all holiday weekend).  And I’m waiting for the handyman to come back to finish up the jobs he started earlier today.

The Popsicle Report:   Blueberry-lemon!  On a stick. I wish I knew what brand it was because I’d sure buy these.  Despite what it sounds like, it was quite tasty.

Chemo round #8 down — a third of the way through the whole chemotherapy treatment. Four more of the Adriamycin infusions and then I switch to the Taxol for 12 weeks.  I saw my regular doc, who thinks things are going along OK.  The white cell count is up again (4.5 from last week’s 4.0), so he says I can back off the Neupogen shot to once a week.  The schedule of shots is not an exact science, but becomes whatever suits the individual patient. Fortunately I didn’t have any bone pain after the shots this past week, and the mouth sores are gone.  The red cell count is low, but not yet in need of bolstering.  It does indicate anemia, though, which leads to fatigue.  I have sporadic bouts of fatigue, but nothing incapacitating — more a sleepiness than a body-tiredness. I’m also a bit irritable, but I think that’s because it’s time for my kids to get back to school (next week!).  They’ve become rather like ferrets — all over everything, full of noise and wrangling.

I also saw the naturopath last week. No changes to his plan, except he’d like me to gain a couple pounds of “reserve” weight. (“Let’s see if we can get you into triple digits!”)  He recommended eating protein, good carbohydrates (I could easily gain pounds with just a couple doughnuts!), and “good” fats — for example, nuts, avocados, and olive oil.  Jokingly, I asked if I should just chug the oil out of the bottle.  He said (with a straight face), “Well you could, but you could also do shots.”

Imagine THAT experience.

Apparently he did shots of the stuff once when he had to gain weight for a sports team. I suppose it’s no worse than Sylvester Stallone chugging raw eggs in the first Rocky movie.

Yesterday, I treated myself to an oncology massage. With all of the events over the summer, I’ve been feeling rather like the Scarecrow in The Wizard of Oz after the flying monkeys get to him.  (“They tore out my chest and they threw it over there…”)  Mammogram, MRI, ultrasound, two biopsies, CT, bone scan, PET scan, two surgeries, physical therapy, chemotherapy (and radiation to come).  I figured I deserved it.  The oncology massage is similar to a regular massage, but lighter, and the therapist incorporated some reflexology (massage of the feet) and Reiki, a sort of laying-on of hands to open energy channels in the body (an Eastern practice).  The downside was that she had to wear gloves.  Apparently there can be some skin-to-skin transfer of the Cytoxan, the other cancer drug that I take orally every day.

A couple interesting “side-effects” of the chemo that I haven’t seen mentioned in all the information I’ve been given:

One day last week, I was standing out on the back deck talking with someone on the phone when I heard a loud buzzing and looked up to see a hummingbird hovering only a few inches from my face.  My startled movement scared it off, but later that same day, it happened again.  Loud buzzing.  Fat little bird body within inches of my face. Bold little bugger, I thought.

And then I realized — the scarf I was wearing had a large red flower on it.  He had me figured for food.

The other “side effect” occurred at the gas station.  I was waiting in line to pull up to a pump and noticed the car to my right, which was also waiting and had just stalled.  The woman driving started cranking the ignition, trying to restart the car, and while I watched, I noticed the telltale headscarf tucked neatly and completely down over her ears and the nape of  her neck.  I put down the passenger-side window and asked her if she needed help. (No way should someone have to deal with cancer, chemo AND a stalled car.  That’s just not fair.)  She thanked me but said no, that the car would start in a few minutes, and sure enough, it did.

We both rolled up to our respective pumps, and while we were waiting for the tanks to fill, she came over to me and asked if she could assume that my headscarf meant the same thing as hers — going through chemo.  I told her yes, I was going once a week and she said, “Oh, yours must be breast cancer.”  I puzzled over how she put those pieces together (maybe breast cancer is the only once-a-week regimen?), and she said she’d just finished chemo.  “Mine’s ovarian,” she said. “I’ll trade ya!”

Fortunately, I long ago developed the ability to disconnect what my brain thinks from what my mouth says at critical moments like these.  My brain said, “No way!” while my mouth changed the subject. You see, there’s a continuum of cancer. On one end are the noninvasive ones that grow slowly, can be removed easily and never return.  On the other end are ones that give little notice, grow swiftly, can’t be detected early, or are relentless, like the brain tumor that just claimed Ted Kennedy’s life.  Breast cancer has the same   stages as other types of cancer (I to IV), and even a Stage O.  Sometimes it is detected early, sometimes not, sometimes it’s aggressive, sometimes not. Ovarian cancer, on the other hand, can be fairly aggressive and is often not detected until it’s advanced, and so the fact that this woman could joke in such a way with me at the gas pump was a remarkable testament of her spirit.

When I changed the subject, we talked about wigs, insurance, and skirted across a number of other health-related topics.  She said that she knew of a number of people (“like you,” she said) who had followed all of the rules of staying in good health and ended up with cancer anyway.  As I drove away, I was both happy and horrified.  Happy that I could bond with someone just on the basis of a headscarf.  Horrified that I could bond with someone over the reason for the scarves. They mark our inclusion in a group neither of us wants to belong to.

An odd and unpredictable journey.  That’s what this is.