Editor’s Note: Judy Feder was a Founding Member of the Society for Participatory Medicine. Sadly, she died of breast cancer on April 23, 2010. We were grateful that she agreed to write this article for our journal. Unfortunately, we learned of her death shortly after receiving her first draft and as we began publishing the Journal’s 2010 volume, so we didn’t include it then. However, after reviewing the manuscript and reminding ourselves what a nice example of participatory medicine she gave us, we decided to publish her narrative article posthumously. We hope you enjoy it.
–CWS

Abstract

Summary: I’ve been an e-patient for more than seven years, beginning within weeks of my diagnosis of metastatic breast cancer. I didn’t know how rich, transformative and even lifesaving being an e-patient would be.

I’ve been (and remain):

1. An eager participant and learner about my disease and my outlook.
2. A student of e-patient communities past, present and future.
3. An e-advocate, spreading the e-patient gospel, and marshalling the collective wisdom of patients as an agent for change.

Keywords: E-Patient, breast cancer, metastatic, liver, lungs, brain, grassroots, under-reported side effects.
Citation: Feder J. Judy Feder: narrative of a breast cancer e-patient. J Participat Med. 2010 Oct 1; 2:e11.
Published: October 1, 2010.
Competing Interests: The author has declared that no competing interests exist.

I’ve been an e-patient for more than seven years, beginning within weeks of my diagnosis of metastatic breast cancer in December, 2001. While I was surprised (and gratified) to find a community specifically for women and men sharing my diagnosis, it never occurred to me that an online community wouldn’t be part of my journey. I just didn’t know how rich, transformative and even lifesaving being an e-patient would be.

I’ve been (and remain):

1. An eager participant and learner about my disease and my outlook.
2. A student of e-patient communities past, present and future.
3. An e-advocate, spreading the e-patient gospel, and marshalling the collective wisdom of patients as an agent for change.

The best way I know to capture my “e-patient-hood” is to chronicle it. What follows is a log of significant events and what I have learned in my journey as participant, student and advocate. It is a diary of participatory medicine.

December 14, 2001. After playing phone tag with my surgeon until 11 PM on a Friday night, she reaches me to say “plans have changed.” Following a needle biopsy diagnosis of breast cancer two days previously, we had scheduled a lumpectomy for the following Monday. To her dismay, a standard, pre-op X-ray showed what looked to be extensive metastatic disease in my lungs.

Knowing I won’t see an oncologist until Monday, I go to WebMD. The site indicates that I am Stage IV, which I can’t quite absorb. (“Really? Couldn’t you have metastatic lung disease but not be so far gone? I don’t feel sick!”) Even worse, there is almost no information about Stage IV breast cancer, other than that it is very serious and the prognosis is poor. In my mind’s eye, the Web page grays out and little tombstones pop up as I scroll through the meager content.

Early January, 2002. With relatively little conscious intention, and certainly no plan, I had emailed friends and family (“wow, I know a lot of people!”) to let them know the scoop. A former colleague told me about a listserv for metastatic breast cancer, one of many cancer e-communities hosted by the Association of Cancer Online Resources (www.acor.org). I join “Club-Mets,” getting my first taste of both the e-patient movement and cancer humor.

Winter-Spring, 2002. Most of my friends know virtually nothing about cancer, except that it’s supposed to be curable if you catch it early enough. I begin to bond with several of my fellow “metsters.” It never ceases to amaze me that I’ve found an entire community of women who know all about “scanxiety” and the bizarre thumping in your lower spine after Neupogen injections. I’m particularly drawn to Sharon, a great writer and tart wit, who has me in stitches with her story of recruiting fellow patients to ride on a town parade float in full evening dress, tiaras and bald heads. I also discover Dorothy, who works for a dear family friend of mine; and Sue who, like me, is balancing work, motherhood and treatment.

September, 2002. The metsters help me through a mini-meltdown, when I discover that, while I’m being treated with a hormonal therapy only meant for patients in menopause, I’m actually NOT in menopause! I get many reassuring posts describing similar snafus, and reassuring me that the past three months of treatment have not been in vain.

Spring, 2003. “Jill from Seattle” makes a trip to New York. Several local metsters meet her for lunch. It’s my first meeting with Peggy, who will become my best cancer friend.

August – October, 2003. In a matter of weeks, Sue, Sharon and Dorothy pass away. I feel intensely the burden of being one of this band of sisters. October’s breast cancer activities seem well meaning, but naïve. I understand why the mets community pooh-poohs “pink ribbon syndrome,” the tendency to see breast cancer through the rosy glow of early detection and cure.

2004. I remain on hormonal therapies, although I progress on Femara and switch to Tamoxifen. I hate the way it makes me feel, but find my e-community an excellent source of information on side effects. Indeed, one of the best things about Club-Mets, I realize, is that it can validate under-reported side effects and greatly reduce the anxiety so many of us feel when we don’t know what our bodies are trying to tell us.

At the same time, I’m troubled by the ferocity of the flame wars on our listserv. Some have to do with expressions of religious belief, others with differences of opinion on everything from politics to buying a gravestone in advance. I realize that, while we are a community of women (and a few men) sharing vital information and intimate thoughts and feelings, many of us otherwise have nothing in common, and probably wouldn’t be friends outside of the cancer context.

That’s fine with me – it reinforces my growing belief that it is the information we exchange that makes the community so powerful – not the “cyberhugs.” Nevertheless, I find myself exploring other e-communities to see what they might offer.

Early 2005. I’m now a member of two different e-communities, and find myself lurking more on my original “home” and posting more on the new site. My 27-month old nephew dies tragically and unexpectedly in early April, only weeks after I’ve had to start chemotherapy again. In my grief and distraction, I commit a minor protocol breach (cross-posting on the communities simultaneously), prompting a full-on flame from one of the moderators. I stop posting altogether on Club-Mets, but continue to lurk. BCMets (www.bcmets.org) is a welcoming new online home, especially as many of my fellow mets sisters have also joined this community.

The chemo I’ve started is an oral drug (capecitabine) commercially known as Xeloda. Along with the expected side effects (the dreaded hand/foot syndrome), my lungs feel irritated, although I wouldn’t quite call it shortness of breath. My onc and nurse practitioners don’t know what this could be, but a number of my fellow e-patients have had a similar feeling and have been told it is an uncommon, but by no means unknown, side effect. Once again, I’m grateful for what I can learn from the experience of others.

Not only do I post questions, but I search the archives for Xeloda information. There’s a treasure trove of information, going back more than five years. I’m amazed at how many of us are starting this drug and have the same questions and concerns – dosage, severity of hand/foot syndrome, GI problems, irritated mucus membranes, etc., etc. I hang in with my original dosage, despite Grade 4 hand/foot, until I get a spectacular scan report in July. My onc lets me reduce the dosage, and I’m reassured by the evidence I find online of how much docs are playing with Xeloda doses. The package insert is hardly the last word!!

October, 2005. I’ve still got a day job, folks, and I’m invited to help a new Web company, Lime, prepare for some press interviews. Their site is built on what people are starting to call Web 2.0. Rich profiles, content tags and tagging clouds, social networks. My mind begins to whir.

December, 2005. I continue to be amazed at the sheer volume of questions about Xeloda, and the variety of ways it is being prescribed. I’m also struck by how much great information is buried – too often just beyond our fingertips – in the unassuming but rich archives of BCMets. Last but certainly not least, I’m fascinated that my fellow patients and I clearly believe we will find the best answers by asking our peers online.

Based on the online conversation and archival information, it becomes apparent that most patients cannot tolerate the 14-day on-schedule and the recommended dose of 1250 mg/m² twice daily. I puzzle about this. As someone with 9 months of experience under my belt, I begin to answer some of the questions from fellow patients. My reign as one of the BCMets Xeloda queens begins.

I’m lucky enough to spend the holiday vacation with my husband and sons in Paris. Walking through the Marais district on Christmas Day, I have an epiphany. What if it were easier to mine the treasures buried in the BCMets archive? What if patients didn’t have to ask the same questions, over and over again, because they could easily find the answers to their concerns about dosage, side effects, insurance coverage and more? What if the thriving community on BCMets could be married to the Web 2.0 tools I discovered through Lime?

January-June, 2006. The Patient Wisdom™ saga begins. I apply as much of my legendary energy as my day job will allow to learning everything I can about Web 2.0 and about e-patient communities. The two do not overlap, to my dismay as a user, but to my encouragement as a would-be change agent. Manifestos, online surveys, meetings with anyone who will give me a few minutes – I even take a stab at writing a business plan.

Throughout this time period, we’re fooling around with the Xeloda dosage, including a sneaky metronomic dose (low amounts of drug but for three weeks at a time) that helps with the physical side effects, but gives me that depressed, “I’m nothing but a chemo drug” feeling.

In May, I get a medi-port inserted under my right collarbone, and begin taking Avastin, the anti-angiogenesis wonder drug, along with Xeloda. My mood lifts as summer turns to fall, and I begin to prepare in earnest for the event I long feared I would never make – my younger son’s Bar Mitzvah.

December, 2006. I’m in mother-of-the Bar Mitzvah boy euphoria, but my scan shows significant liver progression. My onc is alarmed, but is loath to switch chemos so soon before the big day. Serendipitously, someone on BCMets posts a link to a new study showing the effectiveness of a 7-day on/7-day off Xeloda cycle. My onc is delighted at last to have some evidence to back up what she has been hearing anecdotally for a while. We decide to try this and buy some time, at least until after the January 17 festivities.

March, 2007. My dear cancer friend, Peggy, has taken a turn for the worse. Her emails are bleak. I call her on the phone and she tells me dispassionately that she’s just really, really tired. Hospice is coming the next day. I stay in touch with her husband via email for the rest of the week. Peggy dies on Saturday morning, just six weeks before her only son’s high school graduation. I’m devastated.

I corral a bunch of mets sisters to contribute to an 18th birthday present for Peggy’s son, Matt. He tells me he is consumed with guilt because he wasn’t at home when she passed. At her insistence, he’d spent the night at a friend’s house. “Do you think she didn’t want me to see her at the end? Did she talk to you about this?” he asks me. I tell him she did not, but that if she did send him to a friend, she did so knowing exactly what she was doing.

October, 2007. My birthday was on September 29 and I felt just fine, if a tad bald (switched Xeloda for Abraxane the previous June). Yet, barely four weeks later, I seem to have dropped off a cliff. My energy is low, my mood is dark, my mouth is full of sores, and my eyes tear constantly. Don’t even get me started on the sorry state of my nails.

I search the BCMets archive for enlightenment, but no one has been on Avastin as long as I have. My kidneys are clearly under stress, but if I stay hydrated enough and don’t overdo the protein in my diet, I seem to be OK.

December, 2007. I tough it out until I have a scan. I’ve responded well to the Abraxane/Avastin combination, but I’ve never felt sicker. Clearly, my kidneys have had enough Avastin, and we stop that drug. I drag myself through the Christmas holidays, doing my best to entertain my clearly alarmed sister- and brother-in-law visiting from England.

March, 2008. Abraxane alone is no longer working, and we switch to Gemzar. I’m delighted just to have a change, and I’m also starting to recover my normal kidney function. I realize that, no matter how much I want to stay alive, I will never again stay on a chemo combination that attacks my quality of life so relentlessly.

July, 2008. Scans show Gemzar seems to be keeping me stable, but no better. I’m already setting my sights on what’s next, and BCMets is a goldmine of ideas, links to studies and clinical trials. We even have a former lab scientist on our roster, the invaluable Erma the Lab Queen, who keeps us all scrupulously honest.

September, 2008. Gemzar has given me such severe neutropenia that I cannot get treated. My onc orders a new scan, and sure enough, the cancer has progressed once again. No more Gemzar.

I ask her about two things I’ve discovered online. The first is a type of liver embolization that uses Y-90 spheres. She has never been particularly open to interventional radiology procedures, but as my options start to wane, her flexibility grows. We each discuss options with the local IR. There’s bland embolization, which delivers no chemical to the site at all. There’s chemo-embolization, and there’s radioactive embolization – the Y-90 procedure I’ve read about. Our local guy recommends an IR at Mount Sinai hospital who does the latter procedure, and I start the several months’ process of arranging to be zapped.

The second thing I ask her about are alternative tests for Her2 status. Those patients whose cancer over-expresses the Her2 oncogene are eligible to receive Herceptin and Tykerb, highly effective drugs against an aggressive form of breast cancer. The tests are blood tests, as opposed to the tissue pathology tests I’ve had three times previously. Apparently, 12% of metastatic patients who tested negative for Her2 by biopsy test positive by the test known as Her2 ECD (extra-cellular domain). My onc likes 12% and I have the test. Positive!

This does not mean that I start Herceptin the next day. In the first place, ‘I’m on a chemo hiatus while I wait for the Y-90 procedure. In the second place, my onc has never used this test, and she doesn’t know what to make of the results. She asks me to repeat it. I do, and the results are even more strongly positive. Now it becomes a question of whether insurance will pay.

November, 2008. I have the Y-90 procedure on the right lobe of my liver two days before Thanksgiving. I”m a bit woozy and not able to eat too much (not to mention quite radioactive), but I happily attend our family Thanksgiving celebration.

We’ll start a new chemo protocol, but not until I’ve recovered sufficiently. During the month of January, I start to experience significant pain in my liver region – really, the first real symptoms ‘I’ve had from cancer since my diagnosis. I start a pain regimen and hang tough until starting chemo on January 26.

By the beginning of March, ‘I’ve weaned myself off most of the pain meds, and clinical examination appears to show much improvement. ‘I’m elated. By the time I get scanned in June, 2009, the results show me to be largely stable. I’m still carrying a big tumor load, but if I had continued to progress as I did before the embolization and new chemo, I don’t think ‘I’d be alive. Here’s to the wisdom of patients!

July 4, 2009. My blog post relating the story of Y-90, Herceptin and patient power miraculously makes its way to the desktop of a renowned liver specialist at Memorial Sloan Kettering, a doctor ‘I’ve met through our shared interest in e-patient communities, but whom I’ve never seen as a clinician. He emails me and offers to evaluate my most recent scans. This is huge.

He is able to clarify much that even a general radiologist might not discern, given his singular focus on the liver. And he strongly urges me to repeat the Y-90 procedure on the left lobe. I have a plan, I have some answers, and for those of us deep in the forests of terra incognita, it doesn’t get much better than that.

Epilogue

Cancer has ideas that diverge from all else in my life. I feel lucky to have presented a paper on the surprisingly congruent needs of three, diverse e-patient communities (at Medicine 2.0 in Toronto on September 18, 2009), and to have participated in a PHR trial for a Health 2.0 video over the summer and into October.

Meanwhile, I realized just before leaving for Toronto that I had gotten very sick indeed. I barely made it to a brain MRI upon my return on Saturday morning, and from there to some two weeks in the hospital, where I was found to have advanced brain mets. Surgery, radiation, meds and many get-well cards later, I’m on the mend, and eager to take on this latest turn in the saga. My online community has prepared me for brain mets, and I’m full of piss and vinegar. All I can say is, “to be continued!”

Copyright: © 2010 Judith Feder. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.