AllyCon 2022 Champions — experienced volunteers who have been to an Alliance national conference or two — provide their summaries on each educational session below. In most cases, the presentation shared at AllyCon is downloadable.
What's New in Personalized Treatment and Trial Options
Speakers: Michael Pishvaian, MD, PhD; and Patrick Boland, MD, Medical Oncologist
I wanted to learn more about treatment options and see what progress is being made. A patient or caregiver will find it helpful know that biomarker testing can let a patient and their care team learn more about their tumor and potentially devise more effective treatments. I was surprised and encouraged to see that some mutation types are highly controlled.
— Carleen Taylor
Results Heard Around the World: 100% Response Rate
Speakers: Andrea Cercek, MD; Dr. J Joshua Smith; and clinical trial participant Sascha Roth
I was excited about researching alternative CRC treatment options, and this session detailed a recent study that showed a 100% response rate. What surprised me most about the study was learning that not everyone knows the molecular genetics of their tumor and the importance of that knowledge in relation to your treatment options is so key. To qualify for this treatment protocol at this time your tumor makeup must be MSI high and you must be a stage II or III rectal cancer patient. I left this session feeling very hopeful about what the future will hold.
— Chelle Benner
How to Access Clinical Trials
Speakers: Diana Abehssera, Patient Experience Lead, TrialJectory
I seize every opportunity to educate myself on clinical trials, especially when it comes to minorities participating in research, due to their underrepresentation. My main takeaway in this session was that TrialJectory has partnered with Colorectal Cancer Alliance to provide patients with resources and a clinical trial finder tool.
— Sharon Rivera
Coping with Anxiety and Insomnia During and After Treatment
Speakers: Molly Hanson, CRNP; Emily Hajjar, Pharm.D., MS, BPCS, BCACP, BCGP; and Tamar Adler
I attended this session because even before my diagnosis, I had issues with anxiety. Getting diagnosed with colon cancer only made it worse. Turns out, anxiety is a normal part of the cancer journey. The most important thing is to know you have options, and anxiety and insomnia aren’t something you just have to get used to. According to the speakers, it is best to address anxiety and insomnia issues as soon as possible, and just because something works for someone else, it doesn’t mean it will also work for you. It is really important to try different coping methods or medications until you find the right combination. It is also possible that the methods will need to change to something else after a few months.
— Anna Dahlgren
Caring for the Caregiver and Understanding Caregiver Fatigue
Speaker: Molly Vocino, MSW, LCSW, Oncology Social Worker
Caregivers commonly feel overwhelmed and guilt associated with pushing back or setting boundaries. Treatment points like the initiation and cessation of treatment and everyday life, like childcare and financial matters, can make stress and grief feel worse. The session covered issues like family emotions, sex and intimacy, emotions, advanced directives, and nutrition. Speakers also said that words matter. Finding a better platform for communication can help with overwhelming updates. Platforms like Blue Hope Nation, the Alliance’s private Facebook group, are beneficial. Finally, one should recognize that if a person is not adding value to your situation, it is OK to involve them no longer.
— Tia Reed
Pain Management & Neuropathy During and After Treatment
Speaker: Dr. Eric Mecusker, DO
I attended this session because of my chronic pain issues stemming from multiple surgeries dealing with my stage IV colon cancer diagnosis. I was floored by the wealth of knowledge that Dr. Mecusker had. Pain is no joke and his understanding of our pain was impressive. For example, he taught us that there are two different types of pain: Pain caused by tissue damage, which is also known as nociceptive pain, and neuropathic pain, which is also known as nerve damage. He said nociceptive pain most usually goes away over time or with the right pain management, whereas neuropathic pain is long-lasting and harder to treat.
— Vanessa Ghigliotty
Sexual Health & Intimacy During Treatment and Beyond
Speaker: Dr. Jennifer Reese
My main takeaway from this session was that even though complications happen, you can still have intimacy and a relationship. I learned how to think more positively about my situation rather than thinking that I’m damaged goods. I also learned that there are others just like me who are thriving. The thing that surprised me the most was how many patients are not aware of the possible side effects radiation can do to our pelvic area. If doctors would discuss issues with us upfront, it would prevent so much damage from being done. Going through cancer is already hard enough.
— Sonia Richard
The Evolution of Liquid Biopsy Science in CRC
Speaker: Dr. Pashtoon Kasi, MD, MS
Liquid biopsy (circulating tumor DNA) is the exciting new future in cancer detection, identification, and diagnostics. Colorectal and other cancers “shed” important and valuable information into the bloodstream that can help detect cancer and formulate care decisions. This information is collected through an easily repeatable simple blood draw. Liquid biopsy is still a nascent technology, but it has a huge potential to be a lifesaver.
— Howard Brown
Nutrition in Colorectal Cancer Treatment & Survivorship
Speaker: Valaree Williams, MS, RDN, CSO, LDN, CNSC, FAND
I attended this session because I deal with LARS, and I am having trouble losing weight gained after surgery. My main takeaway was that while certain types of foods are recommended for post-treatment patients/survivors, each person is different. The Alliance has a lot of information about nutrition and cancer, too.
— Jacen Roberts
Novel Approaches to Immunotherapy
Speaker: Dr. Benjamin Weinberg
I attended to learn more about the upcoming treatments for colorectal cancer. Awareness of options can result in better outcomes and better ideas on how to find treatment plans. The session was very informative in learning how immunotherapy can help with MSI. The main thing I learned is that there has to be more research to treat MSS CRC. It was also surprising to me how many different genetic mutations a tumor can have.
— Carleen Taylor
Wellness During Treatment & Colorectal Cancer Rehab
Speakers: Michelle Faris, PT, DPT, CLT-LANA; Jeff Eagan, DPT, CLT
This session showed me how much effort and energy it takes from all parties involved in the process of treating and healing cancer. We all play a vital role in the healing process, especially when it comes to mental health.
— Deondre Williams
Mindfulness Practices to Promote Wellness During Cancer Treatment
Speaker: Mary Rothfusz, Mindfulness/Meditation Instructor
There were so many takeaways from this session. First, start small. Meditation is not just sitting still. It is about being mindful of yourself, where you are, and what you’re feeling. Second, be honest with yourself about how you are feeling, and then accept it and treat it with love and kindness. We should not be ashamed, embarrassed, or guilt-filled about our emotions. Third, become your own anchor through the storms of life. For example, when we have chronic pain, we should be mindful of it, control our breathing, and relax our mind and body, controlling the sharpness of our pain.
— Vanessa Ghigliotty
Navigating Insurance and Finances in a World of Cancer Debt
Speaker: Christin Sonneborn, Patient Navigator; Amy Niles, EVP, Patient Access Network Foundation
DOWNLOAD PRESENTATION 1
DOWNLOAD PRESENTATION 2
The main thing I learned is that numerous resources can provide a lot of help — and not just for cancer patients. You can reach out to the Alliance, view its Resources Guide, or contact other organizations who could help you. Personally, I did not know that the Alliance had patient navigators who could help with insurance issues and questions.
— Christin Witt
Survivorship and Peer Support
Speaker: Jonny Imerman, Co-founder of ImermanAngels.org
I truly believe peer-to-peer support is one of the best methods of therapy, and it helped me get through my treatment. Seeking support from others that have been through what you are going through can have a huge impact on your life. Giving back and being a mentor after you have completed treatment helps others, as well as continues the healing process for yourself. It is such an amazing experience to give back and hear that you have positively impacted their life and cancer journey.
— Allison Rosen
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