• Ejourneys' Avatar

    Ejourneys posted an update

    We are home! Our return trip was the love child of "It takes a village" (as our flight attendant Lisa said, "Today, American Airlines is your village"), Blanche DuBois ("I've always depended on the kindness of strangers"), and a Harvard Lampoon road trip slapstick comedy. Special thanks to (wheelchair) "pusher" Edison and the TSA's Alejandro Orellanos and staff, plus the staff at the American Airlines baggage check in Burbank, who are each and every one of them worth their weight in gold for the miracle of getting us on the plane under extenuating circumstances. Immense gratitude to Steve, Rey, and Cris in Thousand Oaks, CA, for turning in and safeguarding some crucial materials. (Calling FedEx is on my To Do list for Tuesday.) Kudos to wheelchair valets Emilio and Eyob and passenger assistance staffer Nancy, and all those at American Airlines who took awesome care of us, and deep gratitude to our taxi driver Russell for all his extra accommodations between home and Tampa Airport and back. I've said that if we arrive home in one piece this trip will have been a wild success -- and a wild success it was!

    3 Comments
    • beachbum5817's Avatar
      beachbum5817

      Glad to hear that you are home safe and sound. It is wonderful to hear that so many people were so helpful to you. People truly are good!!!!

      4 months ago
    • Gabba's Avatar
      Gabba

      Happy to hear you're home safe and sound...good people are everywhere and it looks as though you found a slew of them!

      4 months ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Safe & home are good things. Glad you found some wonderful people to help out. Hope that good karma comes back to all of them threefold.

      4 months ago
  • Ejourneys' Avatar

    Ejourneys posted an update

    Will peek in when I can -- my partner and I are on the road (memorial service for her mother, who died in August). Travel (and posting from this tablet) is a bit of a challenge, but the TSA patient assistants and the airport "pushers" have been terrific, especially Harold, who deftly pushed TWO wheelchairs simultaneously. I probably could have gotten a pusher at our first airport in Tampa, but I'm new to this, so I had just grabbed a wheelchair for my partner and played dual roles of pusher and pack mule. If you are flying with someone who needs assistance or if you need it yourself, I heartily recommend requesting help ahead of time from the airline and from TSA. They've got people who go above and beyond.

    4 Comments
    • BoiseB's Avatar
      BoiseB

      Bon Voyage E. Journeys enjoy your trip.

      4 months ago
    • Lorie's Avatar
      Lorie

      Asking for help is hard when we're used to doing for ourselves. Good for you to ask. I hurt my rib a little while ago and my son came home with two huge containers of detergent and said he was putting some in a smaller bottle for me. I almost told him not to and I said why not. Especially when he's not that considerate most of the time Lorie

      4 months ago
    • Bug's Avatar
      Bug

      Safe travels, Ejourneys.

      4 months ago
  • Ejourneys' Avatar

    Ejourneys posted an update

    Just checking in to let everyone know that we are fine here on Florida's Gulf coast. We've been having a little wind and a little rain, nowhere near the conditions on the Atlantic coast from Hurricane Matthew. In fact, my partner and I met today with My Awesome Oncology Social Worker, who's been helping us tremendously through some red tape. In addition to that, of my partner's two medical appointments today, one was postponed (by the provider) in anticipation of the storm, but the other one went ahead as planned. My heart goes out to everyone facing more severe conditions. Stay safe out there! (((Hugs)))

    3 Comments
    • beachbum5817's Avatar
      beachbum5817

      Glad to hear that you are safe. Take care.

      5 months ago
    • Gabba's Avatar
      Gabba

      Good news!

      5 months ago
    • Bug's Avatar
      Bug

      I'm very glad to hear that you guys are okay. Thank you for letting us know.

      5 months ago
  • Ejourneys' Avatar

    Ejourneys posted an update

    New entry, "Back in the Blog Saddle" -- I've been unable to post on Cancer Survivors Network (technical difficulties), so have used Prosebox:
    https://www.prosebox.net/entry/462541/back-in-the-blog-saddle/

  • Ejourneys' Avatar

    Ejourneys posted an update

    "Advancing a Quality-of-Life Agenda in Cancer Advocacy: Beyond the War Metaphor"
    http://oncology.jamanetwork.com/article.aspx?articleid=2293948

    From the article:
    "Advocates should never abandon the fight to prevent and cure cancer. But changing demographic characteristics of the cancer population require updated strategies and messaging. Cancer advocates should engage in clinical, legislative, and research efforts that help reduce the medical, economic, and emotional consequences of cancer. It is time to break down the silos across diseases and disciplines to advance the fundamental care tenet of curing when we can and comforting always. Saving lives with high quality of life demands it, and a quality-of-life agenda is the best place to take this first next step."

    Includes link to the Patient Quality of Life Coalition (www.patientqualityoflife.org), a partnership of more than 20 groups "that provides the organizational and strategic framework for multiple disciplines to join forces in advancing this national quality-of-life movement."

  • Ejourneys' Avatar

    Ejourneys posted an update

    Twitter chat on cancer and psycho-oncology
    http://www.nimh.nih.gov/news/science-news/2015/twitter-chat-on-cancer-and-psycho-oncology.shtml

    When: Date: July 22, 2015, 1:00 - 2:00 ET
    Hashtag: #CopingCancer

    From the announcement:

    Please join the National Institute of Mental Health (NIMH) and the National Cancer Institute (NCI) for a Twitter chat to learn more about coping with cancer. Maryland Pao, M.D., Clinical Director and Deputy Scientific Director at NIMH, will be on hand to discuss cancer and psycho-oncology, as well as Julia Rowland , Ph.D., Director of NCI’s Office of Cancer Survivorship and others.

    Please use the hashtag #CopingCancer to follow and participate in the Twitter chat. To ask questions, you must have a Twitter account. If you prefer to simply observe the chat taking place, you may do so at twubs.com and view the conversation in real-time. An archive of the chat will be posted on NIMH’s website following the event.

    If you have any questions, please email NIMHpress [at] nih [dot] gov.

  • Ejourneys' Avatar

    Ejourneys posted an update

    "[email redacted] 2.0: new version of the Sony app that lets you fight Breast Cancer and Alzheimer’s while you sleep"

    http://blogs.sonymobile.com/2015/07/06/foldinghome-2-0-new-version-of-the-sony-app-that-lets-you-fight-breast-cancer-and-alzheimers-while-you-sleep/

    From the article:
    "Protein folding research requires an incredible amount of processing power to simulate the complex movements of proteins as they change shape. Every time someone uses the [email redacted] app, they contribute some of their phone’s processing power to this world-changing programme of research and in the process, help scientists to understand the causes of major diseases such as Breast Cancer and Alzheimer’s."

    Works with: Android smartphones and tablets with Android version 4.4 (Kitkat) or higher with ARM processor.

  • Ejourneys' Avatar

    Ejourneys posted an update

    I've also posted this on @GregP_WN's thread about "awareness":

    Excellent article here about MET-UP, patterned after the AIDS organization ACT-UP.
    http://www.medscape.com/viewarticle/848080

    From the article:

    "Here's one of the reasons for the rage, said Caldwell: In 2013, Komen had $125 million in revenue but gave away only $38 million in grants (and even then, some grants were not for scientific research). 'As an organization that pitches itself as "for the cure," they are not doing enough to actually seek the cure,' she summarized.

    "Komen has also reportedly kept women with metastatic disease off the podiums of its rallies because the specter of death is an emotional downer, as highlighted by Medscape Medical News....

    "Only 7% of all federal breast cancer research funding is earmarked for metastatic disease, despite its accounting for at least 30% of all breast cancers (either at diagnosis or by progression).

    "Also, last year, NRG Oncology, which enrolls about one third of all patients with cancer in clinical trials sponsored by the National Cancer Institute, said that it would no longer regularly conduct trials in metastatic disease (including that of the breast). The prominent trials group is now devoted to early-stage disease, as reported by Medscape Medical News....

    "MET UP member Caldwell says the group's breast cancer founders hope that other patients with metastatic cancer will join. 'I think we have more in common with people with stage IV lung cancer than with stage I breast cancer,' she said."

  • Ejourneys' Avatar

    Ejourneys posted an update

    Good article by Deanna Pai, "I Have Cancer...And It Sucks"
    http://www.cosmopolitan.com/health-fitness/a37555/i-have-cancerand-it-sucks/

    (If the word after "it" is exxed out in the title and/or the URL, replace it with s.u.c.k.s but with the periods removed.)

    As the tagline reads, "When you're diagnosed with a rare cancer at 25, everyone wants you to spout happy thoughts and sing 'Kumbayah.' Cosmo beauty editor Deanna Pai is XXX off and owning it."

  • Ejourneys' Avatar

    Ejourneys posted an update

    The July issue of Artemis (Johns Hopkins Breast Center) is live:
    http://www.hopkinsbreastcenter.org/artemis/

    Subscription is free.

    1 Comment
  • Ejourneys' Avatar

    Ejourneys posted an update

    Linda A. Johnson writes on pharma for the Associated Press, which tweeted:
    Have your #genericdrugs prices skyrocketed, causing you to cut back on meds, suffer complications? If so, contact AP's @LindaJ_onPharma

    I asked Linda for contact info to give to interested people not on Twitter. Her email and phone number are in this reply:
    https://twitter.com/LindaJ_onPharma/status/619557942673690624

  • Ejourneys' Avatar

    Ejourneys posted an update

    From the We Are Everywhere department: I took my partner to get a haircut yesterday. When I mentioned that I am still getting used to my chemo curls, I learned that the stylist cutting my partner's hair is a cervical cancer survivor. Another stylist there (I think she's the proprietor) is a kidney cancer survivor. We talked about more than hair. :-)

    Today my partner and I attended a talk and lunch given by a neurologist specializing in MS (which my partner has). The event was sponsored by Genzyme, which had a rep there along with an MS patient ambassador. I told the rep that I'd be interested in any such presentations having to do with SERDs (selective estrogen receptor degraders; see below). I had misremembered the pharma company (research into SERDs is being done by Genentech, not Genzyme), but these types of events are a good way to pick up info and also get a nice lunch. :-) I learned about this one through our MS support group.

    About SERDs -- for ER+ BC, this is a new (and still investigational) class of drugs. I'm on an aromatase inhibitor, which stops my estrogen production. In contrast, a SERD does two things. First, it binds to and limits the function of estrogen receptors; in that way it acts like tamoxifen. But a SERD also changes the shape of the receptor so that the cell treats it as junk and eliminates the receptor itself. More info at http://www.gene.com/stories/trashing-a-common-cancer-driver.

  • Ejourneys' Avatar

    Ejourneys posted an update

    Talk about a crucial information gap! "Planning and Reporting of Quality of Life Outcomes in Cancer Trials" by Schandelmaier et al., Annals of Oncology, 6/30/15.

    http://annonc.oxfordjournals.org/content/early/2015/06/30/annonc.mdv283.short

    From the abstract:

    "About half of cancer trials specified QoL outcomes in their protocols. However, only 20% reported any quality of life data in associated publications. Highly relevant information for decision-making is often unavailable to patients, oncologists, and health-policy makers."

  • Ejourneys' Avatar

    Ejourneys posted an update

    "The Connected Cancer Patient: Future Vision and Recommendations"
    https://hcldr.wordpress.com/2015/07/03/the-connected-cancer-patient/

    This article is chock full of helpful links, plus invitation to a chat for discussing the issue further.

    About #hcldr:
    #HCLDR is a strong and vibrant online community of people who all share a passion for improving healthcare. Our community includes patients, physicians, nurses, CEOs, IT folks, caregivers, policy makers and students from countries such as Canada, USA, Philippines, Ireland, Australia, New Zealand, Singapore, UK and South Africa.

    From the article:

    To capture specific recommendations for the upcoming PCP Workshop, the next #hcldr chat will address the following questions. Please join us on Tuesday July 7th at 8:30pm ET:

    T1 What are critical unmet health care needs among patients and families that could be addressed with connected health approaches?
    T2 How could connected health approaches promote patient activation & engagement, particularly in cancer?
    T3 How can engaged patient communities be encouraged to contribute to health system reform? How might their role be formalized?
    T4 What communication tools would help patients be more engaged in their care?

    2 Comments
    • Ejourneys' Avatar
      Ejourneys

      Transcript at:
      http://embed.symplur.com/twitter/transcript?hashtag=HCLDR&fdate=07-07-2015&shour=17&smin=30&tdate=07-07-2015&thour=18&tmin=45

      Copy/paste full URL if it's not all highlighted.

      This was by far the *fastest* chat I've ever been on! Impossible to catch it all "live," so I'm still going through the transcript. Lots of great info/feedback.

      over 1 year ago
    • Ejourneys' Avatar
      Ejourneys

      There's also a survey for providing feedback. From the website:
      "On July 9, 2015 the Presidential Cancer Panel will be hosting a workshop entitled: The Connected Cancer Patient: Vision for the Future and Recommendations for Action. Several patients and patient advocates will be in active attendance at the meeting but we need more voices, especially from those in the communities and demographics that tend to be under-represented in the conversations."

      To provide feedback:
      https://www.surveymonkey.com/r/TTPBFLD

      over 1 year ago
  • Ejourneys' Avatar

    Ejourneys posted an update

    The American Society of Clinical Oncology (ASCO) is developing a tool to help physicians and patients choose among cancer treatment options, which are graded according to benefits, toxicities, and costs for both early- and late-stage cancers. They are soliciting feedback, including from patients, through August 21, 2015. (I've just completed their survey.)

    Their Value Framework guide explains what they are doing:
    http://www.asco.org/sites/www.asco.org/files/patient_and_survivor_value_framework_companion_guide.pdf

    A more technical version is here:
    http://jco.ascopubs.org/content/early/2015/06/16/JCO.2015.61.6706

    Their Value Framework webpage includes a link to their feedback survey and other materials:
    http://www.asco.org/practice-research/value-cancer-care

  • Ejourneys' Avatar

    Ejourneys posted an update

    Powerful testimony before the Washington State House Finance Committee's public hearing on Substitute House Bill 2194: Creating a funding stream and program for cancer research, prevention, and care.

    The section of the video covering this bill begins at 43:22 and ends at 1:12:30.
    Public testimony begins at 47:56.
    Testimony from mostly patients begins at 56:00

    http://www.tvw.org/index.php?option=com_tvwplayer&eventID=2015060078

    (Copy/paste full URL if it's not all highlighted.)

    This public hearing pertains only to the State of Washington but it is a great example of the struggle to fund cancer research.

    (Diane Mapes, a cancer patient and reporter for Fred Hutch, whose calls for interviewees I have posted here a couple of times, is one of the patients providing testimony.)

  • Ejourneys' Avatar

    Ejourneys posted an update

    "Left in the Brain: Potentially Toxic Residue from MRI Drugs" by Jeff Gerth, Pro Publica:
    https://www.propublica.org/article/left-in-the-brain-potentially-toxic-residue-from-mri-drugs

    From the article:

    Nine gadolinium-based contrast agents are sold in the United States. The two in question, Omniscan, made by GE Healthcare, and Magnevist, manufactured by Bayer HealthCare, once dominated the contrast agent market. Both GE and Bayer, in statements, said they were monitoring the issue and noted the new studies had not found any clinical impact, such as brain injury....

    The new studies cited by Kanal and Tweedle have set off alarms because they show that even patients with healthy kidneys are retaining gadolinium from Omniscan and Magnevist. Estimates are that about one-third of the 20 million MRIs in the United States each year use one of the nine contrast agents.

    7 Comments
    • Ejourneys' Avatar
      Ejourneys

      @nonnie917, the contrast used in your MRI might not be the Bayer product that's under suspicion. Bayer also markets Gadovist, which was the contrast medium used in my partner's MRIs. It also contains gandolinium and comes with a warning about NSF in patients with kidney dysfunction. My impression from the Pro Publica article is that Omniscan and Magnevist are currently the contrast media of concern (granted, there's no telling what may come to light in the future). I would look at the risks and benefits of using vs. not using any contrast medium at all.

      I found the Magnetic Resonance Technology Information Portal, which is chock full of info that makes my eyes glaze over but that also provides what seems like a comprehensive database of MRI options. I pulled up this page for Gadovist:
      http://mr-tip.com/serv1.php?type=db1&dbs=Gadovist

      (Copy/paste the full URL if it's not all highlighted.) The page also includes a list of other contrast media.

      over 1 year ago
    • Nonnie917's Avatar
      Nonnie917

      That site you gave me has a virus attached to it when you try to go to another page. Just letting everyone know.

      over 1 year ago
    • Ejourneys' Avatar
      Ejourneys

      Yikes! Thanks for the warning. I was able to navigate without any problems (I have Norton 360 Premier anti-virus).

      over 1 year ago
  • Ejourneys' Avatar

    Ejourneys posted an update

    "Advice to young oncologists: Sage words from colleagues who are well-established in their fields":
    http://www.cancernetwork.com/oncology-journal/advice-young-oncologists
    Good advice in the comments, too.

    1 Comment
  • Ejourneys' Avatar

    Ejourneys posted an update

    "Bill Takes Aim at High Copays for Self-Injectable and Oral Cancer Drugs" by Tony Hagen, OncLive:
    http://www.onclive.com/web-exclusives/Bill-Takes-Aim-at-High-Copays-for-Self-Injectable-and-Oral-Cancer-Drugs

    From the article:

    With bipartisan support, legislation aimed at reducing the high copays for self-injectable and oral cancer drugs was introduced in the House and Senate.

    The Cancer Drug Coverage Parity Act bill would require private health insurers to provide coverage for such drugs “on terms no less favorable” than those that are intravenously delivered or injected by a health provider, according to a Senate discussion draft of the legislation, which is supported by Representatives Leonard Lance (R, New Jersey) and Brian Higgins (D, New York)....

    The legislation would prohibit private insurers from imposing requirements for prior authorization, step therapy, dollar or duration limits, copayments, deductibles or coinsurance that do not apply to provider-administered anticancer medications.

    Insurers or group health plans would not be allowed to change benefits with the intention of increasing out-of-pocket costs, reclassify benefits in a way that would increase costs, or apply more restrictive limitations on self-administered cancer drugs unless those terms also apply to provider-administered drugs, according to the discussion draft.

  • Ejourneys' Avatar

    Ejourneys posted an update

    (This is a different article topic than the one I posted about last week.)

    Freelance writer and breast cancer survivor Diane Mapes (@double_whammied on Twitter) is looking to speak with cancer patients who will talk about "cancer hacks," creative ways patients can combat treatment effects (like chemo mouth, neuropathy, etc.).

    Her tweet (which includes her email address):
    https://twitter.com/double_whammied/status/608394477066186753

    Her website:
    http://doublewhammied.com/