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Wishes Fulfilled, and a Legacy

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A few months ago I posted about entering hospice and received many precious notes from well-wishers across the world. Your kind words mean so much to me that I’ve placed them in a document to look at whenever I need a lift! Words indeed support the healing process, and I am very grateful for being a recipient of so many caring thoughts!

I’d entered hospice at the end of March at 77 pounds, at which point I was physically and mentally drained and ready for end-of-life, but still hoping to reach my 70th birthday at the end of July. Almost miraculously I began gaining weight and feeling better, and was granted a fabulous birthday filled with loving texts, calls, and a memorable visit with friends!

Since then I’ve begun to fade a bit with decreased appetite and increased GI issues. My hospice team is stellar and are doing everything they can to reassure me that if I start having considerable pain or discomfort, it will be well-managed.

Towards the end of one’s life it’s natural to reflect upon one’s legacy. My husband and I have managed to raise a wonderful parrot and enjoyed 48 years of marriage together! Yet beyond that, I hope that my book “The Insider’s Guide to Metastatic Breast Cancer” has helped patients and caregivers navigate the disease and its treatments, and that the Patient-Centered Dosing Initiative’s (PCDI’s) efforts have paved the way for rendering oncology drugs more tolerable.

Below is an email I’d forwarded to individuals with MBC who participated in the PCDI’s 2020 survey who’d asked to remain informed about our progress. Knowing that the PCDI’s work has precipitated change regarding quality of life and how future drug doses will be selected brings me immense happiness, and is perhaps the most precious legacy of all!

Wishing you the best possible health and much happiness!

With heartfelt gratitude,

Anne

Three years ago, you and 1,220 others helped to transform the decades-old “more is better” paradigm for treating oncology patients by participating in the Patient-Centered Dosing Initiative’s (PCDI’s) MBC Patient Survey. The survey aimed to discover the prevalence and severity of patients’ treatment-related side effects and whether patients with side effects felt better after their dose was reduced. We learned that 86% of participants suffered at least one bad treatment-related side effect, and of these 20% visited the ER/hospital, 43% had to miss at least one treatment, and 83% of patients given a dose reduction felt relief on the lower dose.

The PCDI subsequently delivered these results in an oral presentation at the American Society of Clinical Oncology’s (ASCO’s) 2021 worldwide meeting. Five months thereafter, the FDA declared, “It’s loud and clear from our patients that the drugs are too toxic: patients deserve a more tolerable dose.”

Since then, the FDA has issued guidance for pharmaceutical companies to move away from the “Maximum Tolerated Dose/More Is Better” paradigm in Phase 1 clinical trials in favor of identifying doses that are more tolerable and still effective. This outcome of this initiative, called “Project Optimus,” will be that future patients will have access to oncology drugs that are appreciably less toxic.

The FDA has also begun reviewing dosages of approved cancer therapies that are currently taken by patients in the clinic. This endeavor, called “Project Renewal,” recently updated the dosage label for the oral chemotherapy drug capecitabine (Xeloda) to make it more tolerable, and there will likely be more to come!

In 2021, the PCDI launched a survey for medical oncologists with experience treating individuals with MBC. Of the 119 respondents, 85% claimed not to believe that a higher dose is always more effective than a lower dose, and 97% would be willing to discuss flexible drug dosing options with their patients. The PCDI was privileged to present these survey results in a Poster at the San Antonio Breast Cancer Symposium (SABCS) in 2021 and publish them in the peer-reviewed journal, “Breast Cancer Research and Treatment.”

Because patients occasionally have difficulty informing their doctors about side effects, the PCDI created a flyer to help them raise this topic with their health care team, and we are currently developing a companion flyer for health care professionals.

The PCDI’s accomplishments have come to the attention of multiple organizations in the US and internationally! The PCDI has recently been integrated as a project of the Metastatic Breast Cancer Alliance (MBCA), and on Thurs. Aug. 24 at 4PM ET we will be delivering a presentation to advocates across the world about “Finding the Right Dose” for which you are welcome to register here.

Regretfully, this will be the final update you will receive from me about the PCDI’s work, as I am currently in hospice. That said, the PCDI’s efforts will continue, and we are grateful that with your help and support we have been able to initiate change for the better for oncology patients!

Comments

  • moderators
    moderators Posts: 8,286
    edited August 2023
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    @bestbird You have been heavily on all of our minds, we thank you for coming back to give us an update and are so grateful you got to celebrate your 70th birthday. Sending you heartfelt hugs and lots of love as you continue to transition. Your advocacy and educational work regarding metastatic breast cancer has helped countless individuals. We thank you for all you have given. ❤️

    —Your Mods

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,060
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    Anne, 💗💗💗💗

  • meja
    meja Member Posts: 84
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    Dear Anne,

    I was so happy to receive your mail yesterday as a participant of the PCDI’s 2020 survey.

    Thank you for the update and so appreciative of learning that hospice is treating you well.
    Belated congratulations 💕

  • bright55
    bright55 Member Posts: 146
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    Anne ....Global huggs hello from Sydney Australia thankyou for your continued awesome dedication

  • candy-678
    candy-678 Member Posts: 4,144
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    Anne- I received your email this morning, and I am registered for the webinar.

    Thank you for your work and dedication to help others with MBC. I also have your book.

    May your transition to your next life be smooth. (I hope I did not offend, but I believe there is more beyond this world).

    Bless you.

  • irishlove
    irishlove Member Posts: 531
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    Thank you Anne for all your hard work and compassion. Your legacy will benefit many breast cancer patients now and well into the future.

    Your book is on my night table and provides such valuable information. I hope others find your work to help them navigate their diagnosis.

    Much love, peace and comfort to you and your loved ones.

  • moissy
    moissy Member Posts: 371
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    Anne - Thank you from the bottom of my heart for all of the many, many hours you have spent helping to improve others' lives. I have referenced your book so many times and always come away with some new information that has helped me. Your work on dosing will benefit all of us and has helped me mentally when I've had to drop down a dose - realizing that it's fine and that the historical methods of dose determination are not optimal.

    Your reports and posts on cancer conferences has been so helpful in getting the latest info to the audience of breast cancer patients. You've just done so much that has helped me personally — not to mention so many others.

    You are so well loved and appreciated. Your kindness is apparent in every post. Thank you for caring and making such a difference in the world. Wishing you peace. And happy birthday!!!

  • divinemrsm
    divinemrsm Member Posts: 6,205
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    Anne,

    It is good to hear from you. It’s comforting to hear you describe your hospice team as “stellar” and that they are attentive and accomodating. You’ve been living with bc/mbc for a long time, and you are well deserving of the good support they’re providing.

    I want to wish you happy belated birthday, and congratulations on 48 years of marriage! And your book has helped countless breast cancer patients navigate their mbc diagnosis which is something you can be very proud of. All the while, you’ve been personable and accessible and your warmth always shines through. You are beautiful inside and out.

    In honor of the wonderful “best bird” parrot that you’ve raised, I thought I’d post a few bird photos I found on Pinterest. Thinking of you at this time. Many hugs to you.

    ~ Camille







  • bestbird
    bestbird Member Posts: 232
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    All - thank you for your beautiful notes and uplifting words! I am so grateful to you for reaching out! And divinemrsm, the photos are stunning! One can't help but smile when seeing them! ❤️

  • husband11
    husband11 Member Posts: 1,287
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    Anne, thank you so much for your hard work and the contribution you have made to the lives of so many breast cancer patients, and that your work will continue to benefit them.

  • candy-678
    candy-678 Member Posts: 4,144
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    Our hearts break over the loss of a fierce advocate, friend and MBC Thriver, Anne Loeser. She was author of "The Insider's Guide to Metastatic Breast Cancer" which she wrote after being misdiagnosed for four years. She was also the founder of the Patient Centered Dosing Initiative to help change maximum dosing to the most effective dosing. Anne was a supporter and friend of METAvivor Research and Support and will be forever missed. Fly high sweet Anne.

    This was posted on Facebook from METAvivor.

  • candy-678
    candy-678 Member Posts: 4,144
    edited October 2023
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    Anne Loeser, founder of the PCDI (Patient-Centered Dosing Initiative), author, and friend has died. Anne Loeser passed away last night, October 10, 2023, from complications of metastatic breast cancer. Her beloved husband Steve of 48 years and cherished 29-year old parrot Pumpkin were at her side as she transitioned.Anne provided the information in the attached photo to be shared amongst friends and the MBC community. She will be missed, her legacy lives on.

    All reactions:124124
    This was posted on Facebook too.

  • trishyla1
    trishyla1 Member Posts: 57
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    How sad to lose such a kind and caring advocate. Her guide for stage IV patients was incredibly helpful to my friend as she battled stage IV TNBC. Thank you, Anne. You will be missed.

  • olma61
    olma61 Member Posts: 1,026
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    A wonderful woman who did so much for our community and all MBC patients! It was a pleasure to be acquainted with her work through this forum. The last line of her obituary above says it all. Rest in eternal peace, watching those ocean waves, Anne.

  • moderators
    moderators Posts: 8,286
    edited October 2023
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    Thank you Bestbird ❤️for being such an amazing support to our BCO community, and the entire MBC Community. We will never forget you and your fierce devotion to helping others.

  • chico
    chico Member Posts: 194
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    Thank you Anne for all you did and shared with us in the MBC community. During my journey with this awful disease you have always been there. The world is a sadder place without you and I will miss you very much.

  • lillyishere
    lillyishere Member Posts: 775
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    Rest in peace Anne. I am posting a part from one of your articles:

    In my view, the public has often been misled by pink ribbon messages that exaggerate prevention and cures for breast cancer.

    With all the money flowing to breast cancer research, which is admittedly one of the better-funded cancers, I would have hoped for more dramatic reductions in the number of people diagnosed with and dying from the disease.

    No one dies of early stage breast cancer. Only when it becomes metastatic does it become lethal. Yet, regrettably, only 2 percent of breast cancer research funding is allocated for metastatic breast cancer. If you see things the way I do, you'd want at least 30 percent of monies to be allocated toward it, since about 30 percent of people diagnosed with breast cancer will ultimately die of metastatic breast cancer.

  • moissy
    moissy Member Posts: 371
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    Beautiful, Anne. We will miss you Thank you for everything.

  • meja
    meja Member Posts: 84
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    Dearest Anne,

    You will be missed. Thank you for being such a dedicated advocate for all of us ❤️

    Rest in peace 🌹

  • tina2
    tina2 Member Posts: 758
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    After being MIA on these forums for a while, I have just returned to bumble around the revised site only to find our beloved BestBird is gone. She was an unfailing mighty light.

    May her husband and family take comfort in knowing that her advocacy for us all will affect generations.

    Tina