Everything Cancer

Heather worked relentlessly to improve accessibility to and coverage of Lymphedema Treatment vastly!

In this compelling episode of Everything Cancer, we sit down with Heather Ferguson, founder and executive director of the Lymphedema Advocacy Group, recently known as Lymphedema Treatment Act.org. Find out how Heather’s 13-year odyssey at the level of national legislature enabled her to change the name of her organization from “Treatment Act” to “Advocacy Group”! 

Heather shares her inspiring advocacy journey, spurred by her son's diagnosis and incredulity at the lack of coverage for Lymphedema Treatment over simple wording. 

This episode sheds light on the complexities of living with lymphedema, the importance of effective treatment, and the significant legislative triumph with the passing of the Lymphedema Treatment Act. Heather offers practical tips for patients facing insurance denials, emphasizing the importance of appealing and leveraging support from state departments and HR departments.

https://lymphedematreatmentact.org/

Newsletter for Lymphedema Advocacy Group https://lymphedematreatmentact.org/category/newsletter-archives/

Contact Heather at [email protected]

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Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at [email protected]

The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.

Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.

Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/

Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...

Episode Description:

In the second part of our interview with Dr. Alique Topalian, PhD in Health Promotion Education, we continue to explore her remarkable journey as both a pediatric and young adult cancer survivor. Dr. Topalian delves deeper into her advocacy work, fighting for legislative changes to support all cancer survivors. Dr. Topalian is a relentless advocate, from working to have insurance coverage for biomarker testing to pushing for transparency in copay assistance programs. 

Tune in for an insightful discussion on the complexities of cancer treatment and the unique challenges faced by the adolescent and young adult (AYA) cancer community.

Key Topics:

The financial challenges of cancer treatment, including the impact of high drug costs and the limitations of copay assistance.

House Bill 177 and its significance for cancer patients.

The importance of self-advocacy and understanding one's own medical needs.

The unique needs and challenges of the adolescent and young adult cancer survivor community.

Strategies for effective self-advocacy and navigating the healthcare system.

Highlights:

[00:00] Introduction: Overview of Dr. Topalian's journey and advocacy work.

[00:48] House Bill 177: Discussion on the copay accumulator bill and its implications for cancer patients.

[02:38] Copay Assistance Programs: The challenges and limitations of these programs, including personal anecdotes from Dr. Topalian.

[04:35] Advocacy Efforts: Dr. Topalian's work to ensure copay assistance counts towards deductibles and out-of-pocket maximums.

[12:11] AYA Cancer Advocacy: The specific needs of adolescent and young adult cancer survivors and Dr. Topalian's efforts in this area.

[16:14] Personal Challenges: Dr. Topalian's experiences with healthcare navigation, disability, and maintaining a career during treatment.

[20:33] Self-Advocacy Tips: Importance of knowing your body, recording symptoms, preparing questions, and having support during medical appointments.

[24:17] Provider Relationships: The importance of finding the right healthcare provider who listens and advocates for you.

 

Dr. Topalian’s LinkedIn LinkedIn.com/in/alique-topali

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Support the show

Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at [email protected]

The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.

Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.

Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/

Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...

Episode Description:

In this first part of our interview with Dr. Alique Topalian, we explore her incredible journey as both a pediatric and young adult cancer survivor. Dr. Topalian shares her experiences with self-advocacy, the challenges of finding a bone marrow match, and her involvement in bio-marker insurance coverage legislation. 

She discusses her shift from psychiatry to Health Promotion Education in oncology. 

Tune in for an inspiring and informative conversation.

Key Topics:

- Dr. Alique Topalian's early diagnosis and treatment for acute myeloid leukemia.

- The significance of biomarker testing in her treatment plan.

- Challenges faced in finding a bone marrow match and the importance of donor registries.

- The role of supportive services like The Gathering Place in her recovery.

- Legislative advocacy for biomarker testing and copay assistance program transparency.

 

Highlights:

- [00:00] Introduction: Overview of Dr. Topalian's journey and the focus of her advocacy work.

- [01:32] Early Diagnosis: Dr. Topalian's diagnosis with acute myeloid leukemia at age four and her treatment journey.

- [03:32] Relapse and Biomarker Testing: The role of biomarker testing in her treatment after a 22-year remission.

- [05:02] Career Transition: Moving from psychiatry to cancer survivorship and supportive services.

- [08:32] Supportive Services: The impact of The Gathering Place and supportive services on her recovery.

- [11:15] Advocacy Journey: Dr. Topalian's involvement in cancer advocacy and her legislative efforts.

- [18:57] Biomarker Testing Advocacy: The importance of biomarker testing and the barriers to access she is working to overcome.

Dr. Topalian’s LinkedIn LinkedIn.com/in/alique-topalian-phd-mph

Next Episode Teaser:

Join us for the second part of our interview with Dr. Alique Topalian, where we delve deeper into her legislative advocacy efforts, the how she has met the challenges of navigating healthcare costs and AYA cancer survivorship.

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Support the show

Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at [email protected]

The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.

Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.

Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/

Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...

Today, Jill is joined by Doreen Bridgman and Marilyn Abrahamson, the brilliant and compassionate minds behind Brain Thrive—Brain Health Coaching. These experienced speech-language pathologists dive into the realities of "Chemo Brain," a common yet often misunderstood side effect of chemotherapy. If you find mind fatigue, fogginess, and forgetfulness frustrating and disruptive of life, you're not alone. 

Join us as Doreen and Marilyn share their expert strategies to help cancer survivors navigate and overcome these cognitive challenges.

Key Discussion Points:

1. Role of Speech-Language Pathologists (SLPs):

   - SLPs address language and processing, attention skills, memory, and communication, These are crucial for managing cognitive impairments.

   - SLPs are vital in helping individuals with cognitive impairment caused by chemotherapy.

2. Chemotherapy-Induced Cognitive Impairment:

   - Affects attention, memory, word finding, organization, decision-making, and problem-solving.

   - Research shows MRI-detectable changes in brain gray and white matter, validating this condition.

3. Long Live Your Brain Program:

   - A six-week online course focused on lifestyle choices, reducing information overload, cognitive energy management, and environmental organization.

   - Emphasizes shared experiences through group coaching, fostering support, and building coping strategies.

- Support from group activities helps individuals feel less isolated and more supported.

 

4. Strategies for Coping:

   - Stop, Breathe, and Restart: A technique to reset focus and manage information overload.

   - Say it and Make it So: Vocalizing actions to make routine tasks mindful and memorable

   - Journal symptoms and use patient portals to communicate with healthcare providers.

   - Encouragement to re-engage socially, choosing quieter, less crowded environments for better cognitive processing.

 - Support from group activities helps individuals feel less isolated and more supported.

Contact Information:

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Support the show

Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at [email protected]

The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.

Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.

Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/

Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...

Ford Fischer, also known as the Grammar Slammer, joins us to discuss his transformative journey as a cancer survivor. Marking five years since his diagnosis and three years of remission, Ford offers a fresh perspective on life, maturity, and the importance of asking questions, community, and practicing diligent self-care during and after treatment.

In this candid discussion, Ford shares his journey through Hodgkin lymphoma, highlighting the challenges and personal growth he encountered from diagnosis to remission.

Ford's advice to other young adults facing cancer emphasizes the need for hobbies and positive distraction, physical activity, being open to your family and friends for support, health check-ups, and symptom awareness.

The therapeutic benefits of hobbies, working out, accepting grief of the life that was and shifting to engaging in life through treatment and survivorship.

Insights for Survivors and Caregivers:

Ford's story provides valuable insights into recognizing symptoms, and the importance of mental and physical health, and community support.

For Healthcare Providers:

This episode offers healthcare professionals a patient’s perspective on the cancer journey, highlighting the importance of empathy, clear communication, and supportive care practices that can significantly impact patient outcomes.

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Support the show

Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at [email protected]

The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.

Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.

Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/

Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...

Join us on this episode, where Dr. Rachel McCall, a Doctor of Physical Therapy and pelvic floor physical therapist, discusses how this specialized therapy can alleviate conditions that greatly affect quality of life. 

Rachael discusses tackling vaginal stenosis, erectile dysfunction, chronic pelvic pain, and both bowel and urinary incontinence, leading to improved quality of life,  well-being, intimacy, and self-image.


Rachael introduces pelvic floor muscle function, detailing how these muscles support essential bodily functions and the common issues that arise when they are compromised.



Insight is offered into how treatments like chemotherapy, surgery, and radiation can affect pelvic health and the role of early intervention.


She shares with us the internal and external assessments for personalization of patient care.  


She emphasizes the importance of a holistic treatment approach .

Pelvic floor physical therapy is a critical yet underutilized tool that can dramatically improve the quality of life for cancer survivors.

Slower

Support the show

Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at [email protected]

The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.

Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.

Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/

Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...

Jill covers the critical role of sleep in the healing and restoration of mind and body on the cancer journey.

What you'll learn:

Discover how sleep aids in combating fatigue, alleviating stress and reducing chemotherapy-induced cognitive impairment.

Jill shares practical tips to improve your sleep quality including establishing A consistent bedtime routine and creating a comfortable safe sleeping environment.

Jill briefly shares some of her personal bedtime habits as concrete examples and how they help her unwind and relax.

Tune into the Everything Cancer podcast for insightful episodes on self-care and self-advocacy strategies. Share this episode with someone who you think might benefit from sleep trips, and subscribe for continued useful content. 

Good night and good sleep.

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Support the show

Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at [email protected]

The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.

Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.

Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/

Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...

Mike Herman did not just beat the longevity odds against cancer through clinical trials and self-advocacy—he's now on a mission to empower others to do the same.

Mike shares his story: from his and his spouse’s unwillingness to accept what they were sure was an inaccurate diagnosis to fierce self-advocacy leading to the accurate but incurable cancer diagnosis of Multiple Myeloma. True grit helped him surpass an initial life expectancy of four years with his blood cancer, along with searching for leaders in the treatment of his cancer and engaging in clinical trials. 

Ten years later, Mike is going strong.

Mike Herman’s story is not just one of cancer survivorship but of transformation and empowerment. Mike envisions a future where every cancer patient is well-informed, feels comfortable asking their cancer providers questions, obtains second opinions (and even third or fourth), and seriously explores clinical trials in their cancer battle. 

His personal trajectory underlines the advancements in cancer treatments over the years, with a shift from traditional chemotherapy to more targeted therapies like bispecific antibodies, which he gained through access to cancer clinical trials.

Mike emphasizes the critical role of clinical trials in improving cancer treatment and offers insights into his positive responses to new targeted therapies that significantly improved his life quality and extended his expectancy.

He discusses his cancer patient advocacy group, Speaking on Cancer Patient Advocacy, which aims to equip patients with easily accessible resources to understand their cancer better and effectively navigate their treatment options.

Tune into this inspiring episode to hear how Mike not only beat the odds but also turned his battle against cancer into a mission to empower others.

Access the evidence-based, credible, and informative resources Mike and his group have put together for over 20 types of cancer at: Speaking on Cancer Patient Advocacy https://www.socpanow.com/about

Mike Herman on LinkedIn https://www.linkedin.com/in/mike-herman-403225204/ 

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Support the show

Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at [email protected]

The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.

Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.

Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/

Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...

Feeling like you're alone is an awful feeling.  Jill shares useful ideas on how asking for and accepting help can be so much easier. 

Your Crew' represents the group of people able to offer support. By matching the talents of individual crew members with specific tasks, everyone benefits. Your crew members feel fulfilled using their skills effectively, and you experience relief by having burdens eased.

One of the biggest hurdles in a cancer journey can be the reluctance to ask for or accept help. Set aside this hesitancy and prioritize your well-being. Start today by allowing yourself to accept the support that is available to you.

Whether it’s sorting through complex information handed out by healthcare providers, maintaining a part of your garden, organizing a room, or researching treatment options—there are countless ways your crew can assist. Leverage their skills to make your daily life and decision-making process smoother and more manageable.

Having a trusted crew member by your side during medical appointments can be invaluable. They can help ensure you ask the right questions, understand the information provided, and offer moral support during those tough conversations.

By understanding the potential of your support network and actively engaging with them, you can significantly decrease your stress and enhance your well-being.
 #CancerJourney #Wellbeing #Cancer #CancerCare #SelfAdvocacy #SupportSystem

Slower

Support the show

Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at [email protected]

The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.

Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.

Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/

Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...

"I got my life back."

Sit back and be inspired by breast cancer survivors who are destined for adventure.

Join Breast Cancer Survivor Sara Hill, Breast Surgeon Dr. Kelly McClean, outdoor enthusiast and founder of Move Beyond Surviving, and Tom Tressler, Executive Director, as they share the transformative experiences of breast cancer survivors who embark on adventures with the not-for-profit outdoor experience organization, Move Beyond Surviving.

Move Beyond Survival offers accessible day and half-day trips that allow survivors to reconnect with themselves and gain back their sense of self, enjoyment of life, and confidence.

Move Beyond Surviving creates a safe and supportive environment for survivors to try new activities and challenge themselves. The shared experience and camaraderie among participants have been instrumental in their healing journey. Move Beyond Surviving offers a variety of activities, including rock climbing, hiking, and horseback riding, to help survivors regain their strength and confidence.

Based in Cincinnati, Ohio, they welcome breast cancer survivors from anywhere.
Move Beyond Surviving Website: https://movebeyondsurviving.org/

Tom Tressler LinkedIn https://www.linkedin.com/in/tomtressler3
Tom Tresser https://[email protected]

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Support the show

Thank you for listening. We would love to hear your thoughts about this episode. We want to hear from you: what topics you would like to have discussed or a guest you would like to see featured in future episodes. This show is here for you. Email us at [email protected]

The information on this podcast is not intended to be used for medical advice. For any health care concerns you have please consult with your healthcare team. The staff at Everything Cancer podcast will not be answering health individual health care concern questions.

Consider giving your support for ongoing content and interviews for this podcast through our Patreon Page for Everything Cancer or the Everything Cancer website.

Our sponsor: H2Ocean - makers of quality sea-salt products for over 20 years!
www.H2Ocean.com
www.Chemo-Mouth.com
Sea Salt Healing Rinse
https://h2ocean.com/oral-care/

Here is the link for the acclaimed cancer self-advocacy guide by Jill Squire, host of Everything Cancer Podcast
"Cancer Journey Guide and Journals: Empowerment in Diagno...