I'm collecting the high fives now, if you please. My last round of chemo and my final injection of Neulasta are behind me. I face three weeks of recovery from this latest round of drugs, and then I can officially close this chapter of treatment. What a relief!
My medical team seems to think that I weathered chemo well. During my check-up, the nurse noted approvingly that I both fended off nausea and retained my eyelashes. While I'm pleased to have been a gold star patient, I'm ready to part ways with the intravenous drugs. Indeed, the only injection system that I want any proximity to at the moment is the one that regulates the flow of fuel in my car. Unless....
And this a big unless. I'm currently weighing whether to participate in a clinical trial sponsored by the National Cancer Institute, which includes the possibility of receiving several IV drug doses over the next three years. Since I'm not sure how to proceed, I hope that you'll bear with me while I publicly gnaw on my decision here.
The trial, which is being carried out at cancer centers across the country, looks at the effects of three different osteoporosis drugs on preventing bone metastases in women with breast cancer. Bones are the most common site for breast cancer cells to migrate. An earlier study, conducted in Europe, has already shown that one osteoporosis drug -- Clodronate -- had a positive impact on reducing metastatic bone cancers in patients with early-stage breast cancers. Presumably this outcome was because stronger bones are more impenetrable to cancer cells than weaker ones. Now, U.S. researchers want to compare Clodronate to two other drugs -- Ibandronate and Zoledronate. Six thousand women are being recruited for this three-year study, including me.
All of this sounds fine. However, no drugs are free of potential side effects. Osteoporosis drugs fall under the pharmaceutical group called bisphosphonates. Basic Internet research turns up articles from all corners of the globe citing correlations between bisphosphonates and incidents of serious problems in the jaw bone. Although these complications are rare, bisphosphonates may trigger "osteonecrosis" of the jaw, which means that the cells in the jaw bone die off causing permanent damage and significant dental problems. This side effect occurs more often in one of the study's three drugs, Zoledronate, which is given intravenously. The two other drugs are given orally.
This clinical trial is double-blind one, meaning that neither the participants nor their doctors know to which prong of the study they will be assigned. Thus, every one has a one-third chance of landing in the Zoledronate arm of the study and thus assuming the greater risk of the potential jaw problems. Since USC/Norris is a research center and one of the study sites, I've been approached several times about my willingness to participate, and I've yet to give a definitive answer. I have until the end of May to either opt in, or skip the whole thing.
Usually a decisive person, I'm stymied by this choice. On the one hand, I tend to believe I would benefit from the Clodronate in a couple of ways. Since I have no reason to distrust the results of the European study, I would receive its assistance in warding off future breast cancer problems. Also, given my fair skin and small bone structure, I am definitely an osteoporosis candidate, so the Clodronate would also pitch in on that front. Finally, a voice in my head keeps whispering to me about the inherent rightness of stepping up when one is called upon to make a contribution to the greater good.
On the other hand, who wants problems with their jaw bones? While I'm not afraid of needles, I don't really welcome periodic doses of a strong intravenous drug over the next three years.
So, what to do? When faced with a decision that lacks an easy answer, my habit is to look for a piece of evidence that will tip the scale one way or the other. To this end, my oncologist has scheduled a bone density test to see if I have any evidence of osteoporosis now. The bone density test is a pre-requisite to participating in the clinical trial anyway, so I'm proceeding with the preliminaries without yet committing.
Feel free to share your thoughts here. While this is my decision alone, I'd welcome your input, so post comments or send e-mails. Clinical trials conducted on actual people are one way we gain knowledge. But they're not without some risk.
I can anticipate a couple of questions you may already have, so let me sort those out now:
1. Why not just take the Clodronate and skip the clinical trial? I posed this question, and my doctor's answer was only if my bones currently showed evidence of osteoporosis. The FDA has only approved Clodronate to treat osteoporosis, so he can not ethically prescribe it to a patient without evidence of bone loss. The results of the European study showing Clodronate's positive impact on breast cancer have not been replicated in the U.S., and the FDA has not adopted them.
2. Can I pull out of the clinical trial if I land in the Zoledronate group? Technically, yes. The study does not require a legally binding contract. But that's not my style, and I'd rather not be disingenuous with the researchers at USC, where I'm a patient. Either I commit fully to the study, or I skip it. That said, if I developed some problem during the study, I would, of course, step out.
Any thoughts?
3/28/08
3/24/08
Scenes From The Chemo Ward
At USC/Norris Cancer Hospital, patients check into Day Hospital for their chemo treatments. You may be imagining a foreboding place populated by really sick people. I pictured a darkened room where everyone was incapacitated because of nausea. But my preconceived notions were just wrong. Let me draw you a more accurate picture.
Instead of beds, Day Hospital is furnished with about 25 blue barca loungers. The room is bright with a large bank of windows, and the nurses are both cheerful and competent. Patients are assigned to a blue recliner, where they put their feet up, cuddle into a light blanket, and idly pass the time. Some people bring laptops. Others doze, read, listen to IPODs, or chat with the person in the adjacent recliner. Meanwhile, their IVs do the heavy lifting and control the steady drip of drugs into their veins.
What is striking about Day Hospital is that there is no single characteristic that typifies a cancer patient -- not gender, not class, not race. Not even age is a reliable indicator, since some patients have been surprisingly young. Over the course of my treatments, I've exchanged smiles with a business woman in her fifties, who was working industriously on her laptop. I've observed a man in his forties, who napped while his wife patiently sat reading beside him. And I've eavesdropped on a couple in their sixties, who were frantically working their phones to rectify a lapse in their health insurance coverage.
On my last visit to Day Hospital, I chatted briefly with an elderly woman who was talking to everyone who walked by her chair. Dragging my tethered IV stand with me, I walked over to her to ask about her elegant knit cap. I was curious if she had stitched it herself. A flattering shade of green, the hat sat perfectly on her head, falling just over her ears and low on her forehead, but still allowing her luminous blue eyes to peer out. In response, she proudly told me that her daughter had knitted several such caps for her in advance of her hair falling out.
In turn, she asked me about my eyebrows. She wanted to know whether I had I lost them and then had re-grown a new set, or if I was still holding onto my original pair. I happily answered that I was still holding onto my pre-chemo brows, as if this were an achievement for which I could actually take credit. She confided that her brows had vanished, but she had since grown a new set. We chuckled together at the indignities. But as I went back to my own recliner, I had a twinge of worry about her. Despite her gregariousness, she appeared frail and was getting a blood transfusion while we talked.
For the most part, though, people have not seemed that sick. Their demeanors have been normal, and as far as I can tell, people are eating. Most patients have readily accepted the nurses' offers of sandwiches or soup. I heard one man even ask if he could have a bottle of Dos Equis with his lunch. The nurse replied, "What?" He repeated, "Dos Equis." Again, she said, "What?" On his third try, he said, "A bottle of beer." The nurse responded, "Oh, if you had said cerveza, I would have understood." Undeterred, the man said, "Well, can I have a cerveza?" "No" was her answer, but she did bring him a coke.
Chemo, it's just not what you expect.
Instead of beds, Day Hospital is furnished with about 25 blue barca loungers. The room is bright with a large bank of windows, and the nurses are both cheerful and competent. Patients are assigned to a blue recliner, where they put their feet up, cuddle into a light blanket, and idly pass the time. Some people bring laptops. Others doze, read, listen to IPODs, or chat with the person in the adjacent recliner. Meanwhile, their IVs do the heavy lifting and control the steady drip of drugs into their veins.
What is striking about Day Hospital is that there is no single characteristic that typifies a cancer patient -- not gender, not class, not race. Not even age is a reliable indicator, since some patients have been surprisingly young. Over the course of my treatments, I've exchanged smiles with a business woman in her fifties, who was working industriously on her laptop. I've observed a man in his forties, who napped while his wife patiently sat reading beside him. And I've eavesdropped on a couple in their sixties, who were frantically working their phones to rectify a lapse in their health insurance coverage.
On my last visit to Day Hospital, I chatted briefly with an elderly woman who was talking to everyone who walked by her chair. Dragging my tethered IV stand with me, I walked over to her to ask about her elegant knit cap. I was curious if she had stitched it herself. A flattering shade of green, the hat sat perfectly on her head, falling just over her ears and low on her forehead, but still allowing her luminous blue eyes to peer out. In response, she proudly told me that her daughter had knitted several such caps for her in advance of her hair falling out.
In turn, she asked me about my eyebrows. She wanted to know whether I had I lost them and then had re-grown a new set, or if I was still holding onto my original pair. I happily answered that I was still holding onto my pre-chemo brows, as if this were an achievement for which I could actually take credit. She confided that her brows had vanished, but she had since grown a new set. We chuckled together at the indignities. But as I went back to my own recliner, I had a twinge of worry about her. Despite her gregariousness, she appeared frail and was getting a blood transfusion while we talked.
For the most part, though, people have not seemed that sick. Their demeanors have been normal, and as far as I can tell, people are eating. Most patients have readily accepted the nurses' offers of sandwiches or soup. I heard one man even ask if he could have a bottle of Dos Equis with his lunch. The nurse replied, "What?" He repeated, "Dos Equis." Again, she said, "What?" On his third try, he said, "A bottle of beer." The nurse responded, "Oh, if you had said cerveza, I would have understood." Undeterred, the man said, "Well, can I have a cerveza?" "No" was her answer, but she did bring him a coke.
Chemo, it's just not what you expect.
3/17/08
Too Bare To Bear
Women with fair skin are not meant to be bald. Trust me on this.
People have visibly winced or gasped when I've revealed this next little secret, but, honestly, I haven't looked at myself in the mirror with my head uncovered for about five weeks. "How do you tie on your bandanna?" they ask. No problem. I wrap it around my head, off-frame. Then, with my scalp safely hidden, I step in front of the mirror to make final adjustments. This regimen has worked fine. Really.
After three rounds of chemo, one doesn't need a visual confirmation to know what lies beneath the scarf. My head undoubtedly resembled the noggin of a much abused rag doll, the kind with the patchy coiffure. So, on Sunday, when no other clients or staff were in the salon, I had Jay, the ever-dependable hairdresser, take a shaver to the loose strands. Mind you, I made him swivel the chair 180 degrees, so that my back faced the mirror for this operation.
Then this morning, I got up my gumption and peeked at my reflection. Let me say that I was right before. Some images are best left to the imagination, and scalps that have never seen the sun have no business being exposed. With my final chemo cycle scheduled for the last week of March, I'm hoping that I can achieve a fine covering of fuzz by mid-May. Just in time for summer.
The good news is that, except for a diminished energy level, I haven't felt that bad. I do admit to having a little trouble in the kitchen, however. Chemo has caused my taste buds to go off kilter, particularly in the salty ranges. But I enjoy cooking so much that I haven't stopped. My husband and son, who are always grateful for whatever food I prepare, have assured me that my meals are still up to par, even if nothing tastes quite right to me.
Thankfully, the end of this chemo trip is starting to come into focus, and it couldn't arrive too soon. By the middle of next week, when I undergo my last treatment, I'll only have to sustain the final three-week recovery period. Knowing that the debilitating drugs are behind me, those days will most assuredly zoom by.
People have visibly winced or gasped when I've revealed this next little secret, but, honestly, I haven't looked at myself in the mirror with my head uncovered for about five weeks. "How do you tie on your bandanna?" they ask. No problem. I wrap it around my head, off-frame. Then, with my scalp safely hidden, I step in front of the mirror to make final adjustments. This regimen has worked fine. Really.
After three rounds of chemo, one doesn't need a visual confirmation to know what lies beneath the scarf. My head undoubtedly resembled the noggin of a much abused rag doll, the kind with the patchy coiffure. So, on Sunday, when no other clients or staff were in the salon, I had Jay, the ever-dependable hairdresser, take a shaver to the loose strands. Mind you, I made him swivel the chair 180 degrees, so that my back faced the mirror for this operation.
Then this morning, I got up my gumption and peeked at my reflection. Let me say that I was right before. Some images are best left to the imagination, and scalps that have never seen the sun have no business being exposed. With my final chemo cycle scheduled for the last week of March, I'm hoping that I can achieve a fine covering of fuzz by mid-May. Just in time for summer.
The good news is that, except for a diminished energy level, I haven't felt that bad. I do admit to having a little trouble in the kitchen, however. Chemo has caused my taste buds to go off kilter, particularly in the salty ranges. But I enjoy cooking so much that I haven't stopped. My husband and son, who are always grateful for whatever food I prepare, have assured me that my meals are still up to par, even if nothing tastes quite right to me.
Thankfully, the end of this chemo trip is starting to come into focus, and it couldn't arrive too soon. By the middle of next week, when I undergo my last treatment, I'll only have to sustain the final three-week recovery period. Knowing that the debilitating drugs are behind me, those days will most assuredly zoom by.
3/10/08
Sticker Shock
Last Wednesday, when I offered up my vein for the third chemo cycle, I arrived at the 50 percent point in my treatment. Following the same orders he prescribed after my second cycle, the oncologist again instructed me to return the next day for an injection of Neulasta, a drug that stimulates the bone marrow to make white blood cells and thus prevents infection.
This time, however, before I arrived for my dose of Neulasta, I received an astonishing phone call from the hospital. An insurance person was calling, as a courtesy, to clue me in on Neulasta's price tag.
I should say that three weeks earlier, after receiving my first dose of Neulasta, I thought to myself that the drug racing to my bone marrow had to be on the pricey side. After all, Neulasta has an important and specialized job, and it seems to keep working at its assigned task for the duration of the three-week chemo cycle. Both smart AND highly focused, all in a single dose -- these attributes don't come cheap.
Idly considering what such a drug might cost, I reasoned that about 18 months earlier, I had paid a little more than $100 for an inoculation for my son, Joe, to prevent him from contracting meningitis in the college dorms. Given that the meningitis vaccine's price must be at least partially set by its volume distribution to students nationwide and given that cancer is generally a big-ticket disease, I assumed Neulasta fell into a much higher price bracket. I was guessing that it hovered in the $400 per dose range.
Imagine my surprise when the woman on the phone calmly stated that Neulasta cost $1200. Startled, I said, "For the series?" I was quickly doing some mental arithmetic and figured that if I received three Neulasta doses, each worth $400, my bill would total $1200. "No," she said, "Apiece."
So, I'm now the proud purchaser of $2400 worth of Neulasta, and since I'm still due for one more chemo cycle, my tab for this drug is likely to reach $3600 before March is over. This sticker-shock scenario raises so many questions about universal health care and the pharmaceutical industry and the insurance companies that they furrow my normally untroubled brow. But wait. Don't we pay elected officials to grapple with these conundrums?
Not to worry about me personally, though. I'm one of the fortunate sick people who has health insurance. By receiving a designer drug, I've done nothing more than guarantee that I'll meet my shockingly high deductible sooner in the calendar year rather than later.
The situation does cry out for a cost-benefit analysis, however. On the benefit side, Neulasta did impart some good effects. I felt better overall during the second chemo cycle than the first one. Presumably, my good phase was due to the addition of Neulasta, which quietly urged the growth of white blood cells. Moreover, should I have not taken the drug and developed an infection, a hospital stay would have been far more expensive than the total cost of the Neulasta injections. Cost-benefit analysis: Probably worth it.
Anyway, it's too late to be counting hundreds now. Combating a serious disease is -- at least in this way -- similar to finding yourself tired and hungry, but the only available restaurant is a posh one. You look at a menu, and you're aghast at the prices. But you really have no choice, except to order. You need food, and now is not the time to quibble over the cost of an entree.
One more thought, Amgen, which manufactures Neulasta, is a Southern California company, based in Thousand Oaks. At least I'm buying local.
This time, however, before I arrived for my dose of Neulasta, I received an astonishing phone call from the hospital. An insurance person was calling, as a courtesy, to clue me in on Neulasta's price tag.
I should say that three weeks earlier, after receiving my first dose of Neulasta, I thought to myself that the drug racing to my bone marrow had to be on the pricey side. After all, Neulasta has an important and specialized job, and it seems to keep working at its assigned task for the duration of the three-week chemo cycle. Both smart AND highly focused, all in a single dose -- these attributes don't come cheap.
Idly considering what such a drug might cost, I reasoned that about 18 months earlier, I had paid a little more than $100 for an inoculation for my son, Joe, to prevent him from contracting meningitis in the college dorms. Given that the meningitis vaccine's price must be at least partially set by its volume distribution to students nationwide and given that cancer is generally a big-ticket disease, I assumed Neulasta fell into a much higher price bracket. I was guessing that it hovered in the $400 per dose range.
Imagine my surprise when the woman on the phone calmly stated that Neulasta cost $1200. Startled, I said, "For the series?" I was quickly doing some mental arithmetic and figured that if I received three Neulasta doses, each worth $400, my bill would total $1200. "No," she said, "Apiece."
So, I'm now the proud purchaser of $2400 worth of Neulasta, and since I'm still due for one more chemo cycle, my tab for this drug is likely to reach $3600 before March is over. This sticker-shock scenario raises so many questions about universal health care and the pharmaceutical industry and the insurance companies that they furrow my normally untroubled brow. But wait. Don't we pay elected officials to grapple with these conundrums?
Not to worry about me personally, though. I'm one of the fortunate sick people who has health insurance. By receiving a designer drug, I've done nothing more than guarantee that I'll meet my shockingly high deductible sooner in the calendar year rather than later.
The situation does cry out for a cost-benefit analysis, however. On the benefit side, Neulasta did impart some good effects. I felt better overall during the second chemo cycle than the first one. Presumably, my good phase was due to the addition of Neulasta, which quietly urged the growth of white blood cells. Moreover, should I have not taken the drug and developed an infection, a hospital stay would have been far more expensive than the total cost of the Neulasta injections. Cost-benefit analysis: Probably worth it.
Anyway, it's too late to be counting hundreds now. Combating a serious disease is -- at least in this way -- similar to finding yourself tired and hungry, but the only available restaurant is a posh one. You look at a menu, and you're aghast at the prices. But you really have no choice, except to order. You need food, and now is not the time to quibble over the cost of an entree.
One more thought, Amgen, which manufactures Neulasta, is a Southern California company, based in Thousand Oaks. At least I'm buying local.
3/6/08
Birthday Blog
A year ago, when I quietly celebrated my 49th birthday, I imagined that this February, my husband and I might be in Rome or in Madrid toasting to my 50th. When I learned that chemotherapy was going to forestall those plans, however, I started to grapple with some nagging "what if" questions about how best to mark the milestone birthday on the horizon.
1. What if I felt too awful to celebrate at all?
2. What if I looked terrible?
3. What if I had no hair?
4. What if I had no eyebrows?
5. What if I let my birthday pass and did nothing? How would that feel?
Truth is that all of those vain and self-absorbed questions, except for maybe the last one, were much trepidation about nothing. In the end, I felt good. I looked fine. I did lack hair, but my new bandanna collection has been serving me well. I still had eyebrows, thankfully. And, yes, I would have been really mad if I did nothing to celebrate the event.
Despite the chemo, I spent a lovely afternoon at home with close friends and family. Those who live in other parts of the country sent cards and flowers and left phone messages. Whether they were present in person or in spirit, everyone's good wishes reaffirmed how generous and caring people have been to me during this period and how very much I appreciate your continued support. My sincere thanks to all of you.
1. What if I felt too awful to celebrate at all?
2. What if I looked terrible?
3. What if I had no hair?
4. What if I had no eyebrows?
5. What if I let my birthday pass and did nothing? How would that feel?
Truth is that all of those vain and self-absorbed questions, except for maybe the last one, were much trepidation about nothing. In the end, I felt good. I looked fine. I did lack hair, but my new bandanna collection has been serving me well. I still had eyebrows, thankfully. And, yes, I would have been really mad if I did nothing to celebrate the event.
Despite the chemo, I spent a lovely afternoon at home with close friends and family. Those who live in other parts of the country sent cards and flowers and left phone messages. Whether they were present in person or in spirit, everyone's good wishes reaffirmed how generous and caring people have been to me during this period and how very much I appreciate your continued support. My sincere thanks to all of you.
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