Awareness is Good; Treatment is Essential

President Obama proclaimed that September is Ovarian Cancer Awareness Month.  He acknowledged that ovarian cancer is still one of our deadliest diseases saying:

Ovarian cancer continues to have one of the highest mortality rates of any cancer, and it is a leading cause of cancer deaths among women in the United States. This month, we remember the mothers, sisters, and daughters we have lost to ovarian cancer, and we extend our support to those living with this disease. We also reaffirm our commitment to raising awareness about ovarian cancer, and to advancing our screening and treatment capabilities for the thousands of American women who will be diagnosed this year.

For those of us living (and hopefully not dying) with ovarian cancer, the lack of recognition for this disease is all too palpable and manifests itself in subtle ways.  For example, the current drug shortages seem to affect ovarian cancer disproportionately.  Not only is Doxil, a key treatment for recurrence of ovarian cancer, currently not available for most women who need it, the mainstay chemotherapies for ovarian cancer--cisplatin, carboplatin and taxol (placitaxel) are also in shortage.  See also the FDA report on shortages here. Some of these drugs are also used to treat breast cancer, also a woman's disease.

I cannot emphasize how important these three mainstay drugs are for ovarian cancer.  They pushed me into a year long remission after I was treated with them for five months in early 2010.  I am only getting carboplatin now to treat a recurrence and it seems to be working so far given that my CA125 numbers have dropped significantly.  I would not be exaggerating to say that I would likely be dead  if those drugs were not available to me in 2010.  It is amazing to me that shortages of such critical drugs are not being addressed at the same time the President is calling for "advancing . . . treatment capabilities" for ovarian cancer.  Yes, we need research for new drugs but we also need access to the drugs that work now to put ovarian cancer into remission.

There have been several good press reports about the drug shortages but unfortunately everyone of them focused on men with cancer rather than the impact of these shortages on women's cancers.  Gardiner Harris' New York Times article  was the best of the bunch by discussing both an ovarian cancer patient who could not get Doxil and a breast cancer patient concerned about the Taxol shortage.  However, the person who was shown in the picture accompanying the article was a man with colorectal cancer.  To the Point interviewed Gardiner Harris, a representative of the generic drug trade association and Senator Klobucher but included as the "cancer patient" experiencing problems with shortages a man with cancer in remission!  And the PBS News Hour coverage of the drug shortage also featured a 55 year old man with acute myeloid leukemia who luckily was in remission despite the shortage of the drug used to treat his type of cancer.

Is it a coincidence that the drug shortage story is told in the press by chronicling its effects on men?  My own view is that the story is more compelling when it affects men than when it is shown to be disproportionally affecting women's cancers--particularly cancer affecting mostly older women who are beyond child bearing age.  The men in these stories are all professionals whose careers are interrupted.  The women are shown as crying about the situation.  It is bad enough that we women have to suffer these shortages but to also be shortchanged by mainstream media in what appears to be not so subtle sexism is beyond comprehension.

The public needs to be made more aware that the drug shortages exist and affect women's cancers in a significant way.  One suggestion I have is to contact the White House to make them aware during this month of ovarian cancer awareness that treatments for ovarian cancer are in critical shortage.  You can write to the White House here with the message that while awareness of ovarian cancer is good, it is essential that these drug shortages end so that women with ovarian cancer can get the critical chemotherapy drugs used for mainline treatment.

ADDENDUM (9/14/11):  I have just learned after some research that cervical cancer is also disproportionately affected by these shortages.  The common drugs used to treat cervical cancer are cisplatin, carboplatin, taxol (placitaxel) and fluorouracil, 5-FU  which are all in shortage.  Fluorouracil is also used to treat colorectal cancer and pancreatic cancer, which are obviously gender neutral cancers.  And do not forget that Taxol is one of the mainstay treatments for breast cancer which is diagnosed in about 230,000 women per year in the U.S. with 2.5 million survivors.

ADDENDUM 2 (9/15/11)  Endometrial cancer is also disproportionately affected by the shortages because its mainline chemo treatments are carboplatin, Taxol, doxorubicin and cisplatin, all of which are in short supply.  Unfortunately, another cancer whose treatment is seriously affected is testicular cancer, for which 3 of 4 mainline chemo treatments (Bleomycin, Etoposide, and Cisplatin) have shortages.  Prostate cancer, on the other hand, (the most common men's cancer) is typically not treated by chemo and when it is, fortunately for those patients, the chemos used (e.g. docetaxel) do not seem to be in shortage.  Here are links to contact Congress about pending legislation re the drug shortages.
http://www.opencongress.org/bill/112-h2245/text
http://www.opencongress.org/bill/112-s296/show

Shortages, Ethics and the Scramble to Stay Alive

There is a nationwide shortage of Doxil, a chemotherapy drug used to treat recurrent ovarian cancer among other cancers. My oncologist told me two days ago when he said that I would need to start Doxil in combination with carboplatin to treat my now recurrent cancer.  New supplies are not expected until mid or late August.  The drug is distributed by Johnson & Johnson and manufactured by Ben Venue Laboratories in Bedford, Ohio, a unit of Boehringer Ingelheim GmbH of Germany. A representative of the manufacturer explained that the company is facing "manufacturing capacity constraints" that have held up some products, and it is working diligently to prioritize and expedite manufacturing for current orders." (WSJ 7/21/11)  The devil in me wonders if it is the priorities are set by the lower financial return Doxil brings or the fact that it is a woman's disease that Doxil mostly treats.

However, I also am grappling with an ethics issue.  I have joined an ovarian cancer forum on the internet where it came to my attention in one discussion that women from around the country are scrambling to get to places remote from their regular treatment centers to get the precious Doxil before it runs out.  One woman said a small supply was available in Texas; another thought some could be had in Boston.  I must say that such behavior makes me very uncomfortable.  Why should a scarce product be given to someone who shows up on a doorstep wanting it?  One of the women insisted that she was doing well and needed to finish 6 cycles even though my own oncologist said that six cycles may not be necessary for everyone (particularly someone who is "doing well").

I suppose the "battle" against cancer is like every other battle-- get in there and slug it out to get what you need and want.  I have a lot of fight in me but I find it unlikely that at this point I would fly 2000 miles to get a treatment that may not give you much more of an edge anyway.  But maybe I am still too new to this chronic cancer treatment situation.  The odds are that the rest of my life, whether it is a few years or many more, I will be going regularly for treatment.  I wonder if the more you go through treatment, the more you are desperate to make sure you get it.  If you don't, maybe the next recurrence will be your last because the cancer will have spread too far.

Is there a principled way to decide who gets the limited supplies of this cancer drug other than the slugfest for the last drops? All of us burdened with ovarian cancer need treatment to stay alive.   Is it anymore principled for me to have access to top rate health care because I have excellent health insurance whereas someone else will not get the needed drug or treatment because insurance will not pay and it is otherwise unaffordable?  Perhaps it is my diminished IQ due to learning of the recurrence of cancer, but I do not have any answers.  I just know that it makes me uncomfortable.

Back So Soon??

Every three months I visit my oncologist for a blood test and checkup.  Yesterday was one of those visits.  The checkup went fine and my oncologist happily noted it was my one year anniversary. Not  precisely because I was still undergoing chemo until the end of April but close enough.

Later in the afternoon, however, after a full day of BS at the office, I got a call from the doctor's office on my cell.  It went to voice mail before I could pick it up and when I checked, my heart sunk when I realized that the doctor himself, rather than the nurse, had left me a message.  "Hi  cancer patient X who is supposedly in remission.  I wanted to tell you not to be alarmed but your CA125 levels, although still low,  are up and have been going up.  I do not believe you are having a recurrence but to be sure I want you to come in for a cat scan."
photo © 2011 Thirteen Of Clubs | more info (via: Wylio)

My first thought was to call my husband because telling someone not to be alarmed is like saying don't look up now at the sky.  Who can resist?  My husband was on the phone with my oncologist at that moment and had him call me back.  The oncologist repeated the message, again told me not to be alarmed because recurrence does not fit the pattern of my increase which has gone from 8 to 13 to 23.  Typically you should be alarmed if it goes from 8 to 50 to 200.  So I asked, if not recurrence, what causes this type of increase?  He said that it could be measurement error or other diseases that affect the abdomen such as pneumonia (go figure) or ulcers.  Since I have been feeling pretty good recently and have had no such illnesses, I have to put my eggs in the measurement error basket.  Of course, instead I think of all the things that I could be facing-- more chemo, loss of hair, loss of taste, fatigue, more neuropathy etc.  And one of my first thoughts was to call my friend Ann, which I cannot do.  There are no cellphones in heaven.

When I got home I checked the internet but it did not help.  Surprise, surprise.  I am not unique in these experiences or fears.  Sometimes this pattern DOES mean recurrence.  However, one good piece of info I found that the doctor did not mention this time (although I believe he has told me in the past) is that below 35 is considered normal.  Unfortunately the pattern of increase is important and even with "normal" CA 125 levels some women have small tumors.

© 2008 Ed Yourdon Creative Commons License

I have been researching effects of radiation from cellphones because I find a disconnect between the recent NY Times article saying "beware" of cellphones and the National Cancer Institute's tract on cell phones and cancer.  The former article talks about a new study reported in JAMA showing an effect of cellphones on brain metabolism, which is not clearly connected to cancer. However the NY Times article made it sound like cancer is a possibility even though it does not cite any supporting studies.  The National Cancer Institute article relies on a multinational case-control study (see  1 below) called  the Interphone Study, which finds no conclusive relationship between cell phones and cancer.  I really do plan to read more and study this issue more to look for biases and issues because people who I respect are concerned and I do not want to dismiss that concern without a deeper dive.

Why do I digress to cellphone radiation?  Simply because the CT scan I now have to have is a source of significant radiation.  One scientist claims that when you convert the measurement systems so you are comparing "apples to apples",  CT scan radiation is higher than what Fukushima Daiichi was putting out at the plant after the first fire when a "significant increase" was reported.  People here on the West Coast were worried about the plume of radiation and yet the typical cat scan is so much more radiation than we could every get here from the nuclear accident in Japan.    In 2009, around the time I was having my first CT scan, a study reported that CT scans are  unfortunately the cause of cancer as well as the finder of cancer.  Ooops.  If I believed in God, I would shake my fist at Her in Jon Stewart fashion.

1.   case-control study (KAYS-kun-TROLE STUH-dee)

A study that compares two groups of people: those with the disease or condition under study (cases) and a very similar group of people who do not have the disease or condition (controls). Researchers study the medical and lifestyle histories of the people in each group to learn what factors may be associated with the disease or condition. For example, one group may have been exposed to a particular substance that the other was not. Also called retrospective study.

It's Not Fair . . .

You may have noticed a bit more cynicism and negativity from me in recent posts.  Trying to get my mind around my recent diagnosis of ovarian cancer and the upcoming "rough" course of chemotherapy has made me a bit cranky.  I did not much feel like celebrating the new year given that I have five to six months of discomfort ahead of me in 2010.

At this time I am less concerned about or focussed on surviving than I am on how bad the side effects of the chemo will be.  My prognosis is good if I make it through the chemo--a protocol that includes Taxol via IV and cis-platinum delivered intraperitoneal (IP) which means that they inject it into my abdominal cavity through a port that my onc-gyn installed during my surgery last week.  The protocol consists of six 21 day cycles of chemo delivery.   I get the chemo over the course of 3 full days  (i.e 8 hours each day of infusion) on Days 1, 2 and 8 and I need to be hydrated for 4 hours/ day on Days 3, 4 and 5 in   each 21 day cycle.  That's a lot of time being hooked up to an IV or IP.  I am not sure how I will spend the rest of the time because I do not know how debilitating the side effects will be.  I am assured of having fatigue, hair loss and anorexia.  I probably will have some abdominal bloating and digestive problems as well as nausea for which I will be given medication to ease the severity.

I am trying to prepare for the hair loss which is probably the only side effect for which I can plan.  I am cutting my hair very short rather than shaving it because I need to ease into its loss.  Even though I wear my hair relatively short, I am very fond of it. I have also been lucky to have thick eyebrows and eyelashes all my life so I am dreading their loss.  I expect my hair will grow back in gray rather than the blonde streaks I have sported for so many years.  It will be another "scarlet letter" for me, announcing to the world that I have cancer.  My son has, however, come up with an idea for a slogan for me to go on a hat or t-shirt (preferably in teal, the apparent marketing color for ovarian cancer).  "It's not fair.  Not my hair!"  I love this slogan!

I am working up the strength for this ordeal but reserve the right to be crabby and negative.  I hope you all understand and accept that I am the one making this journey and will do whatever I need to do to get through it.  Please bear with me.