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!
Written by
Bestbird
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You are already an angel on earth. When your day in Paradise arrives, I imagine you with pink wings spreading your light throughout the heavens. God bless you. 💗💗🙏🏻🙏🏻
When you meet our Lord in heaven I am sure that He will greet you with a smile and a hug. You have done so much for us and with your book provided us with hope. We have learned a lot from it. Wishing you well when you transition from here to the other side. My prayers are with you🙏
I am still in such awe that you were so successful in your endeavor to change the approach to dosing. I think it is quite incredible that a patient (no doubt a very wise and organized one!) could have such a profound influence on the powerful FDA and their whole approach to cancer drugs. Kudos to you, and thank you so much for your time and effort put into achieving this (I do believe I am benefitting from this right now on the Afinitor!). Your work will have long lasting postive outcomes for so many women! I think it is phenomenal! You rightly should be proud and feel satisfied with that legacy.
I'm also very saddened to learn that "that" time is upon you now. I will miss reading your kind and wise words on these pages. May you have a very peaceful transition on this next part of your journey. Much love xxx
13plus, Thank you so much for your thoughtful words and good wishes! I have been very fortunate to have had the privilege of working with wonderful patient advocates and medical oncologists on the PCDI! As a team, we accomplished the seemingly impossible task of upending the "more is better" oncology dosage paradigm that has been the norm for seven decades. I am so very grateful to everyone involved!
Anne, you have given us so much and been such an inspiration. You will be remembered in the hearts of many who have never met you but have benefited from your work and your sympathetic advice over the years. An incredible legacy indeed. God bless you always.
Dear Anne, thank you for everything you have done over the years to help MBC patients navigate their journeys and get the FDA and doctors to realize that more is not always better. I just started reading your Insider's Guide and have found it fascinating and helpful. I'm happy you were able to celebrate your 70th birthday with those you love. I'm glad you are finding comfort through your hospice care workers and hope you will have a peaceful transition to heaven. Please know that you will be in my thoughts and prayers. Sending you hugs.
Dearest Anne, Many thank yous for all your advocacy, writing and friendship! Now I understand your Bestbird screen name! We too had a wonderful parrot. He had a stroke and fell off his perch and died a few years ago. I miss our "bestbird" alot. As a chaplain I've been with many people near and at thhe time of their death and what I have experienced has been very mreassuring! Hospice care is incredable. May you hhave an easy transition! Sending love, prayers, and thanks, Pam
Dear Pam, Thank you for your kind wishes! That said, I was sorry to hear about your feathered little one. They fit in such a special place in one's heart. Sending you my very best wishes and a big hug.
Dearest Anne, Many thank yous for all your advocacy, writing and friendship! Now I understand your Bestbird screen name! We too had a wonderful parrot. He had a stroke and fell off his perch and died a few years ago. I miss our "bestbird" alot. As a chaplain I've been with many people near and at thhe time of their death and what I have experienced has been very mreassuring! Hospice care is incredable. May you hhave an easy transition! Sending love, prayers, and thanks, Pam
congrats on celebrating a 70th revolution around the sun!🌞 it made the heart happy yesterday to see your name with the PCDI email yesterday, Saturday. i have been fortunate to have an incredible health and well-being team guiding me for 12 years; 8 years mBC. they’ve supported lowest doses of meds the whole time, for this mind-body. and years ago, after doing research on the half life of meds, i requested a different dosing that has been supported; 7 years NEAD. thank you for the care and passion you’ve designated towards cancer care, especially mBC. celebrating you, your marriage, and parrot. you are loved. 💝 may you live with ease during this time.
Thank you for everything you have done. My beautiful wife has directly benefitted from all your efforts around tolerable dosing. Your legacy is a light that helps us all in the darkness of this awful disease.
Browniem, thank you for sharing that your wife has done well regarding tolerable dosing, and I wish you both years and years of the best health possible and much happiness!
To one of Earth's Angels who has relentlessly worked to bring more light into this world, with great success. I applaud your achievements and thank you for the difference you have made to patients lives by raising awareness to what we want /need.
Sending you my deepest love and gratitude.
May the rest of your journey on earth be peaceful.
Thank you for educating ALL on lower dosing! Worked for me on previous drugs and felt reassured lower dosages worked. Now on chemo infusions of Enhertu after everything else failed, and have been successful with few side effects (18 infusions since January).
Praying for you in hospice, but I see miracles happen all the time. Praying you’ll be around longer…you are such an amazing advocate for metastatic patients! God bless you! Love, Renee in Atlanta 😘
Thank you, Anne, for your curiousity, your drive to research and follow up on that research, your ability to connect and educate others, your advocacy, your outreach, your strength to advocate for change, your love for others. We have all benefited in so many ways, just because you cared enough to share it all with us.
Thank you so much for the work, research and publications! It gave me great comfort in my early days if MBC diagnosis. Sending you much love and light.❤️
Breege_M, thank you for your lovely note! It's wonderful to hear that individuals living in multiple countries will benefit from the inroads that are being made! Very best wishes to you!
Dear Anne, Because of you and the study, I was confident going onto a lower dose of Ibrance. I'm so much better with fewer side effects and still progression-free after 6 1/2 years.
Your contribution, not just to this forum, but to the MBC world is appreciated more than you know. I will miss seeing your posts and reading your wise words.
Everyone: I have been wondering how we on Healthunlocked MBC community can further spread the word that Patient Centered Dosing is what most of us want.
I'm going to tell my Oncologist tomorrow that this is what I want. And what I don't want is to feel nauseous and fatigued one week out of three, nor do I want any unnecessary hospital visits which impact on my valuable time with family and friends.
If many of us ask for PCD, our voice will be greater/more likely to be heard.
Let's take any opportunity we can to help drive forward the wonderful initiative Anne and her husband started.
Louise, you raise an excellent point! Because it can be challenging for some patients to raise dosage-related discussions with their doctors, the PCDI created a patient flyer to help patients initiate the conversation. You can download the flyer here: static1.squarespace.com/sta...
And on this web page you can find a list of drugs for which studies show a lower dose to be as effective as the highest approved dose (have a look at "Dosage-Related Studies") therightdose.org/resources
Also, if you'd like to get in touch with the PCDI which consists of patient advocates and medical oncologists, please feel free to email info@therightdose.org
I promise I will do everything I can to ensure PCDI awareness is raised within the Cancer unit where I am treated. The info you have provided will be most helpful in this respect.
I will also look into how I can spread the information more widely.
Peace amd thanks to you for a life well lived. You touched so many lives and I am thankful for touching mine. Your book has been a comfort to me so many times, your responses to others and general positivity. My prayers are with you.
Dear Anne, thank you for you loving work helping so many people understand the dynamics of cancer, and breast cancer, with a more in depth patient oriented view. Thank you for the beautiful person that you are, your kindness, you dedication, your love of people means so much to all of us. I wish you peace, I wish you love and most of all, I wish you all your dreams come true of a beautiful life well lived. Grateful to you with all my heart.
Dear Gabi, It has been a privilege to try to help others on this difficult road, and your kind words are appreciated more than I can adequately express. Wishing you years and years of optimal health and happiness!
dear Anne, happy 70th Birthday! Thank you for the profound message and all the work you’ve been doing empowering MBC patients to advocate for themself!
Your organizing and participation in the multiple projects is nothing less that amazing!
Sending love to and gratitude for you, BestBird. You've been a role model for approaching this awful disease with reason and a can-do attitude. You've changed the world, for the better.
I too would like to thank you Anne for all the time consuming work and research that you have done. All of us have benefited by the information and allowed us to take that info to our doctors. You indeed have been a gift to all of us. Warm hugs and bountiful blessings.
Happy 70th birthday to you Anne. Thank you for the great work that you have done and for the teaching that you have provided to those of us who don't research much. I wish you enough of everything as you go through this stage of your life but most of all blessings and EGR (Extra Grace Required).
Dear Anne, thank you so so much for your hard work, for your energy, your selfless sharing, for your Guide which has been a lighthouse in a stormy sea for all Mbc sufferers who became familiar with it. We are all on the same path sister ❤️🌸
Linda said it "best" - God bless you on this next part of your journey. You have given us all a guide on this next step as well.
I am blown away by your strength and courage and...tenacity. I am so glad we were all able to see another post from you and express our gratitude for your amazing legacy. I am humble, grateful, and so blessed to have "known" you via this site.
Iwasborntodothis, I am grateful to have had the opportunity to be of help to others, and each of us does what we can to make a wonderful chain of helping hands!
I am so amazed by your generosity to the MBC community. Here you are facing the toughest of times and, yet, you still take the hours to help us, to respond to our needs, and to keep us informed. You have been an incredibly supportive part of our community. Anytime I have a question about treatment, your book is the first research document I reach for. I think you have personally changed the way in which patients interact with their oncologists when it comes to their breast cancer treatment. I wish every type of cancer had such a sterling advocate.
Bless you, and a very happy 70th birthday to you! May the sun shine upon you and give you peace.
Kate from Alabama, a seven year survivor of de novo MBC
Dear Kateds, It is wonderful to hear that the Guide has helped patients to advocate for themselves and ask important questions of their physicians! And thank you so much for you good wishes and gift of sunshine. May your years be filled with the best possible health and much happiness!
So happy 😊 to hear you made it to the big 70! Since my 1st diagnosis in Dec 2015 was stage 4 mbc, I wasn't even sure I was going to make it another year. And here I am many more.
I believe highly in your work. Instead of having me have side effects on Ibrance, my doc kept lowering my dosage until there was no more to lower to. If she does start with a high or top dose, I am able to get the her to lower the dose if I request it. She hoping that gives me a better quality of life.
May your quality of time be the best for you and your family.
Sister😇/Warrior😇/Great Advocate😇, and yessssss Over-comer😇. I thank you for all that you have done to help us navigate this journey. I know when your time of peaceful transition from your physical body our FATHER/GOD will open the gates of Heaven, and say come in good, and faithful😇 servant, your mansion awaits. May the GOD we serve give comfort,and peace to your Husband, and your family. XoXoXoXoXoXoXoXo to infinity
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