Wondering what to make of life before the Necessary End

We all know that cancer is treated with chemotherapy and that chemo causes hair loss. This is a Big Deal for me.

Before you go getting all “don’t be so vain” on me, imagine yourself going to a meeting with a potential new client with–what?–a wig and false eyelashes? Save me!

That’s the problem: the chemo treatment will last about 5 months (6 treatments, 3 weeks apart). Three months after that, the hair begins to grow back. Three months after that, and the hair will be short like a man’s short-back-and-sides. Another month or so to get to my normal length. So we’re talking about a year of bald. And assuming the best, then for the last 6 months of that time, I should be well enough to work–assuming the damned cancer doesn’t come back in that time.

Obviously vast numbers of people do chemo, lose their hair, and don’t feel like a freak. Good for them. Really. But it’s a big deal for me.

A friend recently suggested that I should be “bald and proud of it”. Proud? What could I be proud of? What remarkable thing would I have achieved? It’s not like getting another degree, or winning a new client, or doing some very clever bit of computer programming.

I really don’t want this hair loss thing. I really really don’t want it for a whole year. And I’m prepared to risk a bit of life for that year. So I’m going to take up the Medical Oncologist’s offer of Carboplatin only, and skip the Taxol. With Taxol, there’s a 100% chance of losing all my hair. With Carbo alone, I probably won’t lose my hair.

I wish I had better stats on this. I’ve read that, with Carboplatin alone, more than 30% of patients suffer hair loss; but I’ve also read that it is “rare” or “extremely rare”.

CA-125 is a protein marker in the blood, and is measured in an ordinary blood test. It’s no use as a diagnostic tool, but it does have prognostic value. The following two studies both dealt with patients with Stage III or IV ovarian cancer.

Patients with high marker levels (greater than 100 U/ml) 1 month after the third course [of chemotherapy] had a median survival of 7 months. This should be compared with a 50% 5-year survival in patients who had 10 U/ml or less and a median survival of 22 months among patients with intermediate CA 125 levels.

O. Mogensen, ‘Prognostic value of CA 125 in advanced ovarian cancer’, Gynecol Oncol. 1992.

[After 3 courses of chemotherapy], with CA 125 levels below the cut-off [of 35 kU/I] 52% of the patients survived [for 2 years], while with CA 125 levels above the cut-off only 13% survived (p < 0.0001).

A van Dalen et al, ‘Prognostic significance of CA 125 and TPS levels after chemotherapy in ovarian cancer patients’, Anticancer Res., 1999

Further, the CA-125 level can be used to show when the cancer has “progressed” (a euphemism for “come back after you irrationally hoped that chemo had made it all go away”). “Progression” is indicated by the CA-125 level doubling from its lowest point. (Gordon J.S. Rustin et al, ‘Use of CA-125 to Define Progression of Ovarian Cancer in Patients With Persistently Elevated Levels’, Journal of Clinical Oncology, 2001.)

And it’s kind of important to know when “progression” occurs, marked by the doubling of CA-125, because Rustin & friends say that, at that point, you have a 50% chance of surviving a further 13 months.

But… the same Rustin et slightly different al concluded a study recently that considered whether patients lived longer if they started re-treatment when the CA-125 levels rose, or delayed until symptoms (pain, bloating) returned. They conclude that you may as well wait, and if you’re going to wait for symptoms to appear, why keep measuring CA125?

There is no survival benefit from early treatment based on a raised serum marker level alone, and therefore no value in the routine measurement of CA125 in the follow-up of ovarian cancer patients.

G. J. Rustin et al, ‘A randomized trial in ovarian cancer (OC) of early treatment of relapse based on CA125 level alone versus delayed treatment based on conventional clinical indicators (MRC OV05/EORTC 55955 trials)’, 2009 American Society of Clinical Oncology Annual Meeting, J Clin Oncol, 2009.

My CA-125 score today, before the first course of chemo, was 113. We wait and see.

Irrelevant trivia: 113 also happens to be (a) my house number and (b) the code for one of my favourite colours of nail polish.

I don’t want to lose references to treating recurrent ovarian cancer. “Recurrent” cancer is cancer that went away after treatment, or at least you hoped it had gone away, but has now come back. I’m not at that stage yet, but I’m likely to be one day. So I’m collecting information for then. Here’s another one:

Catherine Doyle et al, ‘Does Palliative Chemotherapy Palliate? Evaluation of Expectations, Outcomes, and Costs in Women Receiving Chemotherapy for Advanced Ovarian Cancer’, Journal of Clinical Oncology, Vol 19, Issue 5 (March), 2001: 1266-1274. Abstract. HTML full text. PDF full text.

Perhaps the most startling finding of that paper is that 42% of patients with recurrent ovarian cancer, about to receive second- or third-line chemotherapy, believed that the chemo would give them a moderately high or high likelihood of curing their disease, even though:

In this study, the physicians had met the patients and explained the goals of palliative treatment, emphasizing that this would not be curative, and also presented patients with a written consent and information sheet that stressed the palliative nature of this study.

Yet nearly half of these patients thought there was a high chance that the treatment would cure them.

PS. It turns out that there’s a commentary article with a similar title. This one (and full text is available) looks at cancers generally (the previous one was specifically related to advanced ovarian cancer): Maurie Markman, ‘Does Palliative Chemotherapy Palliate?’” title = “Read full text article”, Commentary, Journal of Supportive Oncology, Vol 1, No. 1, 2003.

Great news! The ABC reports that red wine and chocolate “are cancer killers”. Thank the heavenly being of your choice that they didn’t discover that brussels sprouts and cabbage are cancer killers!

I’ll go looking for a report of the original research later and find out just how legit this is. Maybe one researcher drowned some cancer cells in half a bottle of bad pinot in a test tube. Or maybe they’re reporting on a full Stage III double-blind randomized trial. But who cares? I shall take its implied advice immediately!

I’m off to get a drink….

Related post: Chocolate, red wine, research and cancer.

A day or three ago, ABC News reported that red wine and chocolate “are cancer killers”. But nothing in the ABC’s report gave any idea of how strong was this evidence, or what practical use the information has.

The ABC reported that the news had come from “Angiogenesis Foundation head William Li told a TED (technology, entertainment design) conference in Long Beach, California.”

The Ted 2010 conference listed Dr William Li as a ‘cancer researcher’ from the ‘Angiogenesis Foundation, a nonprofit that is re-conceptualizing global disease fighting’. His speech was on 10 February 2010. The TED conference published a slide from Dr Li’s presentation that lists ‘Dietary sources of naturally-occuring angiogenic substances’:

The list certainly includes both red wine and chocolate. Let’s see if we can trace the sources of information back to original research.

1. Red wine

The only reference I can find to “red wine” at the site of the Angiogenesis Foundation is in an article from May 2009, ‘Antiangiogenic Substances in Blackberries, Licorice May Aid Cancer Prevention’. From the title, I can guess that this is not about “cancer killers” but about cancer prevention. The article states:

…researchers at the Ohio State Comprehensive Cancer Center found that anthocyanins, a class of flavonoids present in many types of berries, as well as red wine, inhibited tumor growth and angiogenesis, and stimulated cancer cell death in the experimental rats treated with a potent esophageal carcinogen.

The Ohio State Comprehensive Cancer Center’s article is Wang L-S, Hecht SS, Carmella SG, et al. ‘Anthocyanins in black raspberries prevent esophageal tumors in rats’. Cancer Prev Res 2009;2(1):84-93. The abstract tells us that the researchers gave rats a substance expected to induce cancer of the esophagus, then fed the rats on various diets including extracts from freeze-dried black raspberries (BRB). They concluded that “the anthocyanins in BRB have chemopreventive potential” and also that “components other than berry anthocyanins may be chemopreventive”.

So far as I can see, the article doesn’t mention red wine. But perhaps the Angiogenesis Foundation was extrapolating. That is, the research discovered something about anthocyanins in freeze-dried black raspberries. And, separate from the research, the Angiogenesis Foundation observes that anthocyanins are present in berries and in red wine. Since I wouldn’t know an anthocyanin if I fell over one in the street, I can’t tell.

The Angiogenesis Foundation’s article goes on:

In the second study related to dietary antiangiogenesis, researchers at Vanderbilt University Medical Center showed that inhibiting an enzyme called 11β-hydroxysteroid dehydrogenase type 2 (11βHSD2) by treatment with a natural compound found in licorice prevents colorectal cancer progression in mice.

The study is Zhang M-Z, Xu J, Yao B, et al. ‘Inhibition of 11b–hydroxysteroid dehydrogenase type II selectively blocks the tumor COX-2 pathway and suppresses colon carcinogenesis in mice and humans.’ J Clin Invest 2009;119:876-885. It’s about colorectal cancer in mice and people.

I understand ‘licorice’. The rest of the abstract is several steps beyond my capacity to understand. But I’m sure I’d recognize the phrase “drink red wine and your cancer will go away” if I saw it.

2. Chocolate

Google can’t find any use of the word ‘chocolate’ at the angio.org site.

So this is a dead end. I can’t find what research led Dr Li to the chocolate conclusion.

My conclusion

I’ve traced back the reference to red wine, and failed to find a reference to chocolate at Dr Li’s site at angio.org. From this, we now know that:

• Rats who were given a known carcinogen and then ate freeze-dried black raspberries didn’t get as many oesophageal tumours as those who didn’t eat freeze-dried raspberries.
• Something in licorice inhibits an enzyme and doing so prevents colorectal cancer progression in mice.

I’m not sure how this leads to the breathless headline “Red wine and chocolate ‘are cancer killers’”.

Two weeks after chemotherapy started, most of my acrylic nails fell off. Within days, my paper-thin natural nails had torn down to be ugly little stumps.

I had assumed that the chemotherapy itself caused the acrylic nails to lift. But I’m beginning to wonder. Living now with au naturel nails for some weeks, I’ve realized that my nails have developed some unusual features:

• I have vertical ridges, quite pronounced, running from base to tip of all my nails.
• The skin beneath my nails is pale reddish-brown from the tip down about 1/3 of length of the nail.
• I have irregular white horizontal flecks near the tips of most nails.
• Some of the nails are flaking like fillo pastry.

I assume that nails are lagging indicators. Maybe these features reflect the time before surgery, when I was pregnant with the whales, when I barely ate anything for several weeks. Maybe they reflect the effects of the cancers themselves. Maybe they reflect the effect of the chemotherapy. And maybe they are completely unrelated to any of my health problems.

On the other hand, maybe the lifting of the acrylic nails was caused by, for example, the vertical ridges, rather than, say, the chemotherapy.

Who knows? There’s any amount of information on the web provided by nail salons; but I’m not likely to take that as medical information at face value. There are any number of cancer-related sites that say vague things like “you may notice changes to your nails”. 10 points to Michigan State University that’s done better than most at discussing chemo-related nail changes. But I’m getting frustrated because I can’t find much real, hard, information.

Here are a few things I’ve found from what I would consider to be reputable medical sources:

• Lawrence E. Gibson of the Mayo Clinic says that vertical ridges are not a concern and are more common as we age. Perhaps all these changes I’m seeing are just because I’m getting old!
• Gibson also says that acrylic nails are “generally are safe and won’t harm your natural nails”.
• It seems that horizontal white streaks are called Transverse Leukonychia. It’s likely to be caused by the chemo rather than by the cancer. Here’s a picture.
• A few studies report transverse lines (“Beau’s lines”) across nails in people given chemotherapy:
  • one person with Hodgkin’s disease
  • one with lymphoma
  • one with myeloma and
  • seven patients receiving taxane chemo.

  If this picture is anything to go by, the transverse lines are clear and distinct. Mine aren’t. (For what it’s worth, in at least some of these cases, the problems went away after chemotherapy stops.)

• There have been a few studies describing small numbers (1 here, 4 or 5 there) of people who are allergic to the acrylates in acrylic nails.

  One study, however, left me entirely perplexed. It was conducted by A. Lazarov of Tel Aviv University, published in 2007 in the Journal of the European Academy of Dermatology and Venereology, and it’s titled ‘Sensitization to acrylates is a common adverse reaction to artificial fingernails’.

  A “common” reaction, says Lazarov. To me, a common reaction would affect a large proportion of the people with acrylic nails. But Lazarov’s study didn’t look at people with acrylic nails and work out what proportion of them had problems. The study was a retrospective study of patients with suspected allergic contact dermatitis from artificial nails.

  Well of course problems would be common amongst patients! That’s why they’re patients!

  I don’t understand how the paper could conclude that sensitization to acrylates is “common”. It would be like concluding that sensitization to dust is common amongst people with hayfever.

While trying to find out what effects, if any, chemotherapy may be having on my nails, I ran across this. Geez, it made me mad:

J Hinkelbein, H Koehler, H V Genzwuerker and F Fiedler did some research on the accuracy and precision of those pulse oximetry gadgets on people with acrylic nails.

Surprise, surprise: the study found that

Acrylic finger nails may impair the measurement of oxygen saturation depending on the pulse oximeter used and may cause significant inaccuracy.

It wasn’t that finding that made me mad; it was the conclusion:

Hence, removal of artificial acrylic finger nails may be helpful to assure an accurate and precise measurement with pulse oximetry.

“Helpful”? Helpful to whom? The nail owner?

No! No! If the machines don’t work properly, fix the machines. Or use another way to measure pulse oximetry. Fix the problem—don’t try to get patients to conform to a medical system that designs inaccurate machines. The world market for oximeters is over $US200m a year. We (the taxpayers) are the clients. The medical industry is the supplier. Don’t treat us with inaccurate machines. Treat us like paying clients, because we are.

However, I remain confused. Ten years before Hinkelbein et al’s study, S M Peters concluded that unpolished acrylic nails do not affect pulse oximetry measurements of oxygen saturation.

You can barely walk through the door of a hospital without someone sticking one of these little machines on a finger. Are these machines accurate? Peters concluded they are; Hinkelbein et al concluded they are not. Who’s right?

PS The article by Hinkelbein et al was named ‘Artificial acrylic finger nails may alter pulse oximetry measurement’. I suppose that’s to distinguish them from natural acrylic nails.<**sigh**>

PPS For what it’s worth, TM Brand, ME Brand ME and GD Jay, from Brown Brown University School of Medicine, found that nail polish does not interfere with pulse oximetry readings.