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DIahanna • Admin
Multiple Myeloma Discussion • April 22, 2025
Sharing Your Financial Support Experiences?
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I'd like to heat from you. If you've received financial support from a non-profit or pharmaceutical company, please let me know. And how-much! This matrix is helpful to us in-house and helps us to determine our level of support to you and keeps this program going.
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KenC
Multiple Myeloma Discussion • April 22, 2025
Sharing Experiences With PRO Surveys
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Hi Everyone, Have any of you been asked to complete a PRO survey during your treatment? As you know, PRO stands for Patient-Reported-Outcomes. These surveys are intended to help the research and healthcare communities understand the impact of medical treatments on patients in terms of side effects and disease symptoms. Personally, I have completed such surveys and have found them to be somewhat frustrating, primarily because they tend to be too black or white and lose the richness of nuance and personal experience that are better expressed in my own words. If someone has experience of PROs, whether positive or negative, I would welcome the sharing of your experience. Did the survey capture the reality of your myeloma experience? Were you satisfied that your answers were providing helpful information about your experience to the research or healthcare team? Did you invest time and effort in your responses or did you simply respond to satisfy the team's request? Finally, do you feel that the survey captured the range, intensity, and duration of the side effects you experienced? Thank you in advance for sharing. And good luck on your myeloma journey
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amberPelican
Multiple Myeloma Discussion • April 22, 2025
Using GLP-1s for Weight Loss and MM?
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Is anyone who is NOT diabetic taking any GLP-1 receptor agonists (GLP-1s) anti-obesity medications like Dulaglutide (Trulicity), Exenatide (Byetta, Bydureon), Liraglutide (Victoza, Saxenda), Lixisenatide (Adlyxin), Semaglutide (Ozempic, Wegovy, Rybelsus), and Tirzepatide (Mounjaro, Zepbound) to reduce obesity and thus, reduce risk of multiple myeloma progession? Or, do you know of any Trials looking at GLP-1's and MGUS, SMM or MM?
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ChioOsuna
Diffuse Large B Cell Lymphoma Discussion • April 21, 2025
Join Our Hike & Wellness Fundraising Event
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A few spots are still open for the HealthTree Challenge: Hike & Wellness — a weekend that brings together movement, wellness, and support for blood cancer patients. Here’s what it’s about: Raise $1,500 for research, education, and patient support. Train with an optional 12-week plan to get ready for the hike. Join a team of people who care and want to make a difference. 📍 Where: Berkshires, MA 📅 When: October 23–25, 2025 Will you take on the challenge? Let’s do this! https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia
HealthTree Challenge - Hike and Wellness

HealthTree Challenge - Hike and Wellness

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https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia
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ChioOsuna
Follicular Lymphoma Discussion • April 21, 2025
Join a Charity Hike & Wellness Weekend
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A few spots are still open for the HealthTree Challenge: Hike & Wellness — a weekend that brings together movement, wellness, and support for blood cancer patients. Here’s what it’s about: Raise $1,500 for research, education, and patient support. Train with an optional 12-week plan to get ready for the hike. Join a team of people who care and want to make a difference. 📍 Where: Berkshires, MA 📅 When: October 23–25, 2025 Will you take on the challenge? Let’s do this! https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia
HealthTree Challenge - Hike and Wellness

HealthTree Challenge - Hike and Wellness

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https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia
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ChioOsuna
Chronic Lymphocytic Leukemia Discussion • April 21, 2025
Join Us for a Hike & Wellness Fundraiser
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A few spots are still open for the HealthTree Challenge: Hike & Wellness — a weekend that brings together movement, wellness, and support for blood cancer patients. Here’s what it’s about: Raise $1,500 for research, education, and patient support. Train with an optional 12-week plan to get ready for the hike. Join a team of people who care and want to make a difference. 📍 Where: Berkshires, MA 📅 When: October 23–25, 2025 Will you take on the challenge? Let’s do this! https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia
HealthTree Challenge - Hike and Wellness

HealthTree Challenge - Hike and Wellness

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https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia
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ChioOsuna
Myelofibrosis Discussion • April 21, 2025
Join the HealthTree Hike & Wellness Challenge
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A few spots are still open for the HealthTree Challenge: Hike & Wellness — a weekend that brings together movement, wellness, and support for blood cancer patients. Here’s what it’s about: Raise $1,500 for research, education, and patient support. Train with an optional 12-week plan to get ready for the hike. Join a team of people who care and want to make a difference. 📍 Where: Berkshires, MA 📅 When: October 23–25, 2025 Will you take on the challenge? Let’s do this! https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia
HealthTree Challenge - Hike and Wellness

HealthTree Challenge - Hike and Wellness

{{MetaTags.description}}

https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia
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ChioOsuna
Multiple Myeloma Discussion • April 21, 2025
Join the HealthTree Hike & Wellness Challenge
AI-generated title
A few spots are still open for the HealthTree Challenge: Hike & Wellness — a weekend that brings together movement, wellness, and support for blood cancer patients. Here’s what it’s about: Raise $1,500 for research, education, and patient support. Train with an optional 12-week plan to get ready for the hike. Join a team of people who care and want to make a difference. 📍 Where: Berkshires, MA 📅 When: October 23–25, 2025 Will you take on the challenge? Let’s do this! https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia
HealthTree Challenge - Hike and Wellness

HealthTree Challenge - Hike and Wellness

{{MetaTags.description}}

https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia
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KenC
Multiple Myeloma Discussion • April 21, 2025
PRO Surveys: What's Your Experience?
AI-generated title
Hi Everyone, Have any of you been asked to complete a PRO survey during your treatment? PRO stands for Patient-Reported-Outcomes. These surveys are intended to help the research and healthcare communities understand the impact of medical treatments on patients in terms of side effects and disease symptoms. Personally, I have completed such surveys and have found them to be somewhat frustrating, primarily because they tend to be too black or white and lose the richness of nuance and personal experience that are better expressed in our own words. If any of you has experience of PROs, whether positive or negative, I would welcome your sharing of your experience. Did the survey capture the reality of your myeloma experience? Were you satisfied that your answers were providing helpful information about your experience to the research or healthcare team? Did you invest time and effort in your responses or did you simply respond to satisfy the team's request? Finally, do you feel that the survey captured the range, intensity, and duration of the side effects you experienced? Thank in advance for sharing. And good luck on your myeloma journey.