e-Patient Judy Feder:
Patient Community Knowledge Saves a Life

Judy Feder is an e-patient who has contributed several comments here in the past. But it was just today that I learned what an extraordinary new e-patient chapter has unfolded in her life in the past few months. If you’re a student of the e-patient principles, see how much e-patient you can spot in this story. — e-Patient Dave

I’ve been an e-patient for seven years, three months and two weeks – two weeks less than I’ve been (knowingly) living with breast cancer that had already metastasized to my lungs (and later liver) at diagnosis. Like countless cancer patients before me, I blessed the friend who turned me on to Gilles’ amazing ACOR, and the group with a name that would make only a Stage IV girl laugh: “Club-Mets.” (In the intervening years, I’ve become more of a lurker on Club-Mets; more of an activist on BCmets, a tale for another time.)

If for no other reason, I love my e-community because I can sound off about the shortcomings of cancer vocabulary. I’m not Judy, fifty-something mother of Eliel and Eero, communications consultant, serious amateur musician, etc. I’m a “heavily pre-treated pt.” The cocktails I’ve been on (at least since the 2004 spread to my liver) are not life-saving medicines, but “salvage therapies.” Please.

Today, however, I can tell you that I love my e-community because I would not be alive without it. No joke. Here is a quote from my PET-CT of December 30, 2008: “left lobe of liver extremely enlarged and almost completely replaced by tumor…very marked progression of metastatic disease.” As of September, 2008, this heavily pre-treated pt had gotten to the point when regimens were failing with growing frequency, and options (salvage or otherwise) were increasingly limited.

Two postings on BCmets caught my eye. The first told of an internal radiation therapy that delivered Y-90 seeds directly to the liver. My onc had previously passed on radiofrequency ablation, but she’s gotten more and more experimental as my “on-label” options have dwindled. We pulled what literature was available, and she gave me her blessing. Of course, it then took me about 10 precious weeks to actually get my right lobe under the knife, but I probably had an easier time than many figuring out where to go and how to hassle the insurance company enough to cough up the money.

The second posting mentioned a blood test for determining the presence of the Her2/neu oncogene, which in turn determines a BC patient’s eligibility for the monoclonal antibody Herceptin. Seven years in, and I’d never heard of this blood test. The standard of care (i.e., what insurance will pay for) is the tissue biopsy, and mine had always been negative. Yet, my own observation of scores of fellow e-patients who were Her2 positive made me suspect that my cancer over-expressed Her2. My cancer is erratic, stubborn, variable in its response. I really wanted that Her2 blood test, insurance be damned. Despite the fact that the “official” evidence is limited to: “several reports also show that elevated levels of serum HER-2/neu can occur in women with metastatic breast cancer that had primary breast tumors that were negative for HER-2/neu expression by immunohistochemistry” (http://www.oncogene.com/ivd_details.php?pc=06489876&type=IVD), again my onc agreed.

When the results came back positive, you’d have thought I’d won the lottery. That was in mid-October. My onc asked me to repeat the test for good measure. I was nervous, but agreed. At any rate, I was on a chemo hiatus as I waited for the Y-90 treatment to take place. The second test showed an even stronger positive. That knowledge alone sustained me through a pretty tough recovery from the radiation, and the simultaneous explosion of cancer in every part of my lungs and liver except the lobe where I’d gotten the Y-90. By January, still recovering, I had to go on pain management for the first time in my cancer saga. The tumors in my left lobe and along the gastro-hepatic ligament were not only palpable, they were visible to the naked eye. My liver enzymes were dangerously elevated. I was one sick heavily pre-treated pt.

On Thursday, I’ll begin my third cycle of Herceptin and Navelbine. My enzyme and tumor marker levels have declined dramatically, as has my swollen and painful liver. I’m almost off of the pain meds and about delirious with joy. When my onc did a physical exam two weeks ago, she burst into tears. Not only am I alive and healing because of the wisdom of my fellow patients on BCmets, but I’ve opened up a new avenue for other women with BC mets in my doctor’s practice (and, with e-patient power, well beyond, I hope). When I think about how my journey might have differed had I been on Herceptin since the outset, it’s almost impossible to imagine. I’m just incredibly grateful that I figured out a way to add it to my (NOT)salvage therapy as of January 25, 2009.

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Comments

29 Responses to “e-Patient Judy Feder:
Patient Community Knowledge Saves a Life”

  1. ePatientDave says:

    e-Patient Judy Feder: Patient Community Knowledge Saves a Life (new post) http://is.gd/oOvd

    • Richard Fankhauser says:

      ARe you the Judy Feder that went to the Hebrew Academy on Miami Beach in the 79’s? If so Mr Fankhauser would like to know how you are doing.

  2. SusannahFox says:

    RT @ePatientDave e-Patient Judy Feder: Patient Community Knowledge Saves a Life (new post) http://is.gd/oOvd

  3. SusannahFox says:

    Wow: “When my onc did a physical exam two weeks ago, she burst into tears” (of happiness). http://is.gd/oOvd

  4. Susannah Fox says:

    Judy,

    Thank you so much for sharing your story here. This good news is an antidote to the important, but depressing, stories about conflicts of interest and scandal.

    Susannah

  5. Carey says:

    Judy – what a wonderful and moving story to share. And certainly a terrific representation of the community produced through e-patient interaction. Your story when you talk about the shortcomings of the cancer vocabulary makes me think of Dr. Rita Charon and her work with Narrative Medicine, particularly how critical is the telling of pain and suffering to enable patients to give voice to what they endure and to “frame the illness so as to escape dominion by it.” Again, thank you for sharing this….

  6. Ewa Irani says:

    Truly incredible, thank you for sharing it with us metsers. The way I understand the test was done base on your knowledge sand persistance. I have very similar history. DX 05 strong ER+ PR+ Her2 neu. Now in Oct 08 mets to liver, inconclusive biopsy, my onc placed me on Taxol/Avastin am on it now, he has never check my HERstatus. I think I shall ask him to do the Her- excuse me what is the name of the test ONKO test? I guess I will be on that chemo till Oct and then?
    In mean time I have flew to Germany and came back with supply of Iscador which am inecting 3xweek.
    Stay well ewa from NJ

  7. Welcome, Ewa, and thanks for sharing your perspective too.

    I invite all newcomers to notice something in Ewa’s note that I see all the time in the ACOR kidney cancer group where I hang out: lots of jargon, lots of knowledge about our conditions. This is a key thing for us all to realize as we continue moving into the world of participatory medicine: it’s AMAZING how much information people can absorb when their lives depend on it.

    And even when it doesn’t.

    I’m drawing attention to this because we still encounter people, both pts and professionals alike, who (consciously or not) don’t really think pts can handle important information. You might be surprised.

  8. Terry Morton says:

    Wonderful story! So many of us wonder how long, how far to go, or just give up. To be off the pain meds so you are a determined woman standing strong above this black smoke. You give the group wonderful strength and it gives us hope for being as strong as you. Thank you and God Bless

  9. What can we teach people from this story – people who are new to “e”?

    I spy, with my little eye, these patterns of “e” – empowered, engaged, equipped and enabled:

    • Judy did not stop at what her providers were able to provide. She likes her providers, they care about her, and she collaborates with them; but nothing would stop this empowered patient from being engaged in her care, from continuously seeking more and more information.
    • Her oncologist collaborated with her and welcomed the contribution. This exemplifies the new model of participatory medicine.
    • New information arose that changed the game – from within a patient community. We talk here about the “lethal lag time,” the time between when new information comes to be, and the time when it’s in doctors’ hands. People die during that latency period – and patient communities can help, because they’re focused on one disease and can hear about information before it’s made it through the publication pipeline.

    Judy’s story makes it clearer than ever that the world no longer consists of a top-down structure in which information arises from a concentrated central structure and gets disseminated to us. Today, information is everywhere, and we can often find it at least as easily as anyone else.

    Can you spot anything else?

  10. btw, this is a good time to review Steal These Slides, the graphics created in 1995 by our visionary founder Tom Ferguson. That was just months after the birth of Mosaic, the browser that made the Web take off. Can you imagine that he foresaw this day?

  11. Judy Feder says:

    Dave, your “e-spottings” are right on. As is your comment about the level of knowledge that e-patients demonstrate. That is another key “e” point. I certainly sympathize with my onc, whose name is Dr. Sara Sadan, by the way, when she tells me about patients bringing in pounds of print outs that are not relevant to their situation. I also respect that fact that, when I do bring in new information, I better back it up with whatever literature IS out there. As miraculous as Herceptin has been for me, it’s not candy, and she was not about to prescribe it without being confident. Another interesting dynamic: I get second opinions at Memorial Sloan Kettering (MSK). I have great respect for them, but as a research institution, they are absolutely by the book. However, one of the docs who has researched the Her2 blood test is Cliff Hudis, a BC expert there. The fact that he is interested in this, and that my situation had gotten so “dramatic” led my second opinion onc to be very supportive of the Herceptin path (although she herself would probably not have been able to prescribe it to me!)

  12. When you say MSK is “by the book” what do you mean?

  13. Judy Feder says:

    As a research institution, they follow protocols very strictly. For example, I was on an oral chemo called Xeloda for about 2.5 years. That’s because Dr. Sadan, my primary onc, refused to give up on it even when I had mild progression. We changed up the dosage, added Avastin, and squeezed every drop of utility from that drug. Had my primary onc been at MSK, I would have been required to switch therapies as soon as I showed any progression.

  14. Huh: I don’t know about “follow protocols very strictly.” My team was *always* ready to stop something if the pt seemed to be endangered. I’d think it’d be a grave ethics violation not to do so.

    I say that with some concern in my voice, because on my ACOR community it’s not rare for people to say that they feel they were talked into a treatment (specifically at MSKC) because they needed people for a trial, even though it might not have been the best treatment available. And I haven’t heard that concern expressed about any other institution.

    I wonder what’s going on. In my patient-centered humanistic do-no-harm world, the patient’s well-being comes WAY before “successful” completion of a clinical trial at all costs.

  15. SusannahFox says:

    RT @ePatientDave Great comment by e-patient Judy Feder about open source EMRs! http://is.gd/p4xk (Her awesome e-story http://is.gd/oOvd)

  16. Judy Feder says:

    I think you are mixing apples and oranges a bit. I was never on a clinical trial. My comments refer to attitudes toward approved therapies. And the question has never been if MSK doctors were not paying attention to something that might have endangered me. Quite the contrary — they have such strict guidelines about changing TX’s when there is any progression because they don’t want to take any chances. Chances, however, are sometimes exactly what needs to be taken. That’s what my onc has the freedom to do, as well as those oncs who have used the procedures i learned about on BCMets.

  17. Thanks for the clarification, Judy.

    My bottom line, generally, is that I want everyone to be as fully informed as possible, and empowered. Lord knows you’re there. :–)

  18. […] e-patient Judy Feder recently discussed how patient community knowledge saved her life. Specifically, she talks about her participation in her e-community and how she wouldn’t be alive without it. She states, “If for no other reason, I love my e-community because I can sound off about the shortcomings of cancer vocabulary.” Generating a host of interesting comments on her post, e-patient Dave commented, “This is a key thing for us all to realize as we continue moving into the world of participatory medicine: it’s AMAZING how much information people can absorb when their lives depend on it.” What exactly does “e” mean you might be asking? Patterns of “e” mean empowered, engaged, equipped and enabled. But empowered to what end? Engaged for whom? Equipped with what resources? Enabled to do what? […]

  19. […] activas y pobladas en las que la sabiduría del conjunto puede superar al del ente individual. En el caso que tuve la oportunidad de leer hace unos días, una “e-paciente”, enferma de cáncer […]

  20. […] Following my amazing experience with Her2 testing and Herceptin, as chronicled in my guest post Patient Community Knowledge Saves a Life, I’ve been motivated and encouraged to take patient power into our own hands and create a […]

  21. ePatientDave says:

    #med2 Phenomenal epatient Judy Feder http://is.gd/3pYeg speaking in CR2

  22. Judy:
    This is one of the most amazing, inspiring stories I’ve ever heard. Again, it shows that patients need to be encouraged and that physicians MUST BELIEVE in patients, WORK with patients and MAKE DECISSIONS with patients.

    Had the pleasure to meet you on Toronto, did not know your story by that time (wish I could have said thank you for this life teaching!)

    Eduardo Alvarado MD
    Lima, Peru

  23. […] activas y pobladas en las que la sabiduría del conjunto puede superar al del ente individual. En el caso que tuve la oportunidad de leer hace unos días, una “e-paciente”, enferma de cáncer de mama […]

  24. SusannahFox says:

    Remembering Judy Feder http://bit.ly/rYDTH (just learned of her passing) #tears

  25. Matthew Holt says:

    Very sad news RT @SusannahFox: Remembering Judy Feder http://bit.ly/rYDTH (just learned of her passing) #tears was in #health2con vid in 09

  26. […] sad to report the passing on April 23 of Judy Feder, who shared her powerful e-patient story here just a year ago. Please re-read how, through her e-patient community (BCMets), she learned of […]

  27. […] clinical management recommendations from her online breast cancer “sisters” in this blog post. In it she […]

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