Comment On Research Results!

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The Behavioural Sciences Unit, a research group in Sydney, Australia is looking for cancer survivor consumer representatives aged 15-39 to provide feedback on some brand new study results from the AYA Global Accord international research study. Some of you may have provided input on this study in 2018 when it was first applying for funding. This global study is being led by Dr. Ursula Sansom-Daly, a psychologist and researcher whose work focuses on AYA cancer, and she is working with a team of international experts from Australia, New Zealand, USA, Canada, and the UK.

The study involved AYA healthcare professionals completing an online survey. This survey aimed to find out what an international group of healthcare professionals thought ideal end-of-life communication with adolescents and young adults with cancer should look like, and what type of training they wanted to improve their skills in this area.

The first thing we’d be seeking your help with would be commenting on the results from this survey based on your experience, via an online survey format.

Later on, there will also be an opportunity to join a teleconference with other young cancer survivors and the research team to discuss your perspectives on the research findings some more. Consumers will also have the opportunity to contribute to a publication (an academic journal article) about consumers’ views.

If you’re interested, fill out the form below and Lacuna Loft will forward your information along to the research group!

Have You Heard Of Mend Together?

Lacuna Loft loves sharing resources we find valuable with you and today is no different. Few people probably know that Lacuna Loft started out as a sole proprietorship where we sold ‘cancer care packages’ for loved ones to buy a patient or survivor in their life. It had all of those great products that we as patients and survivors know are super helpful when you’re going through cancer treatment and entering survivorship. Out of that grew Lacuna Loft as you know it today, a nonprofit where we host psychosocial and support programs for young adults facing cancer, but it’s always been important to me to figure out how to get what’s needed most into the hands of young adults with cancer.

With that in mind, have you heard of Mend Together? They are a platform where you can organize what you need with your family and friends into a gift + cash registry. Think the knot or amazon wish lists but even better because Mend Together is specifically designed for cancer patients and survivors.

It’s so hard sometimes to respond when well-meaning family and friends ask, “How can I help?” Especially when sometimes you just really need a specific kind of toothpaste to help with dry mouth, a pair of cozy socks for the infusion room, or maybe just Tuesday night dinner. Mend Together is a free platform that helps organize exactly what you need. You pick the items you need and add them to the registry. They even have tools on the platform that help others learn what to say and do for someone facing cancer! Mend Together includes a gift + cash registry, community journal, and volunteer calendar.

If you’re interested in setting up a registry, use the code LACUNA100. That will get you a free Cancer Support Kit that includes free gifts, resources, and a $100 in-site credit to use on Mend Together’s products and services. Mend Together will also donate $20 to Lacuna Loft to help support our mission and programs.

How does it work?

Patients/Survivors of a friend/family member can create a free registry and add over 300 products, services, and cash funds to it as well as send updates to loved ones. Friends and family can then choose a gift to send, contribute funds for financial assistance, send encouraging words, or donate time.

Learn more about how to help people rally around you when you need them most using Mend Together.

Join A Focus Group + Be Heard!

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Are you between the ages of 26-35 and have been diagnosed with ALL or AML? We’d love to chat with you!

Join a focus group, hosted by Lacuna Loft, Elephants and Tea, and Servier Pharmaceuticals. Servier is looking to speak with 15 young adults facing cancer, ages 26-35, about your survivorship. The good, the bad, and everything in between. Better understanding your survivorship challenges will help Servier better innovate in their creation and delivery of cancer tools and resources.

The group will be focused around ALL and AML survivors but young adults facing other diagnoses may also attend. The focus group will take place on Feb. 10th or Feb 11th. 5-6:30 pm PT / 7-8:30 pm CT / 8-9:30 pm ET.

Each focus group will bring together 5-10 young adults facing cancer for a moderated discussion over 2 hours. The discussion will happen over Zoom so you can be comfy and cozy at home for the whole thing. You will be compensated for your time and energy because your voice and perspective are so important in the delivery of cancer survivorship resources.

Sign up below to join the discussion today and offer your voice!

Have questions?  Email mallory@lacunaloft.org.

Opening The Conversation: Join A Research Study!

Young adult survivors of breast and gynecologic cancer face a number of challenges, including interrupted life plans.  As many as two-thirds of these young survivors experience negative effects of cancer and cancer treatment on their reproductive health, including sexual function and ability to have children.  These are among the most distressing aspects of life after cancer for young survivors and their partners, and when left unaddressed, lead to poorer mental health and quality of life.  Effective communication and coping are important for couples struggling with reproductive distress after cancer.  Through their research, scientists at Oregon State University learned that many couples encounter significant challenges when faced with the reproductive and sexual health consequences of cancer.  Yet, surprisingly, evidence-based programs are not available to help young couples manage this aspect of life after cancer.

These researchers are looking to adapt an existing program so that it specifically fills this gap. To do this, they will incorporate advice from young survivors, survivors’ partners, clinicians, and researchers.  The new program will focus on fertility/family building and sexual health concerns after cancer, be tailored to meet the needs of young adult breast and gynecologic cancer survivors and their partners, include information about strategies shown to be effective to cope with reproductive health concerns after cancer, and be delivered by videoconference to reach couples living in rural and urban areas.  They will enroll 100 couples in this study to compare this newly adapted program to the original program, which focuses on managing the impact of cancer more generally. Fifty couples will be randomly assigned to receive the new program and 50 couples will receive the original program.

They evaluate whether the new program leads to greater improvements in reproductive and sexual distress than the original program. They also expect to see improvements in other aspects of relationships, sexual functioning, and well-being.  Additionally, they are interested in gaining knowledge about how the program works.  They will study possible mechanisms, including improved coping and communication between couples, using data from both survey questions and interviews.  Researchers expect this study to yield a feasible and effective program to reduce reproductive distress, which will lay the groundwork for making this program available to a wider audience in real-world settings.  In the long term, this is expected to improve equity of access to information and supportive care for young survivors and their partners.

Help create a program for young couples dealing with reproductive and sexual health concerns after cancer! Get $20 for sharing your opinions during an interview. Find out more at health.oregonstate.edu/oc

Teens&20s Is Launching And They Want To Hear From You

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Our friends on the Together team at St. Jude Children’s Research Hospital are pleased to announce the launch of Teens&20s, a mini-site for teens and young adults who are childhood cancer patients and survivors.  Together needs feedback to help make Teens&20s the best it can be.  If you are a cancer patient/survivor age 13-25, please spend some time checking out Teens&20s and then take an anonymous survey by October 13.  While supplies last, participants who complete the survey will get a $10 gift card.  (Participants may choose from a variety of major retailers.)  Together is a comprehensive online resource for pediatric cancer patients and their families no matter where the patient receives treatment.

Check out the survey here!

Are You A YA Cancer Survivor Of Leukemia Or Lymphoma?

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Another day, another research study looking for YOU to answer their questions and help make care better for other young adults facing cancer!

The purpose of this study is to explore how a cancer diagnosis as a young adult influences quality of life, specifically looking at factors related to work and education, such as work-related goals, in addition to factors such as mood, fatigue, cognitive health, work ability, and financial health.

Participants are eligible if they are currently between the ages of 20-44 years old and were:
• diagnosed with a hematological cancer (a leukemia or lymphoma) between the ages of 20-39;
• diagnosed within the past 5 years;
• working or in school during the time of your cancer diagnosis;
• and are no longer receiving chemotherapy or radiation.

Participation in the study involves:
1) an online survey about quality of life, work-related goals, mood, fatigue, cognitive health, work ability, and financial health (approximately 30 minutes); and
2) a phone interview (approximately 45 minutes).

Following completion of the interview, participants will receive a $50.00 Amazon gift card.

Please contact Lauren Ghazal, MS, FNP-BC at lvg220@nyu.edu if you are interested in participating.

Impact of Cancer Study

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My name is Jess and I am a PhD researcher working at Edge Hill University in Liverpool in the UK.  My PhD study is investigating the psychological impact of cancer in teenagers and young adults who were diagnosed in their teenage and young adult years.  Particularly, I am looking at the psychological impact in survivors who are in recent remission (received confirmation of no evidence of disease within the last 2 years).  It is my hope that this will lead to the development of an intervention in order to better support teenagers and young people transitioning back to their previously held lives.

Right now, I am looking for individuals to take part in a questionnaire study looking at the psychological impact of your cancer experience.  It can be completed anonymously online and should take no more than 15-20 minutes.

If you are:

  • currently aged 18-30
  • were diagnosed with cancer between 16 and 25
  • have received confirmation of no evidence of disease within the last two years
  • were not diagnosed with a brain/CNS tumour
  • did not receive any form of cranial radiation
  • were not diagnosed with a mental health condition prior to your cancer diagnosis

then you are eligible to take part!  Please follow this link to take part.

If you are unsure of anything or have any questions, please don’t hesitate to email me at popeje@edgehill.ac.uk

Cancer Care Study For Young Adults

Lacuna Loft loves sharing research opportunities with you so today we’re passing along this fabulous study again being done between Dana-Farber Cancer Institute/Harvard Cancer Center and Kaiser Permanente to learn from patients and family members about the care that young adults (ages 18-39) with cancer receive.

Learn.  Their goal is to evaluate and improve cancer care for future young cancer patients. They especially want to understand what is most important to patients when cancer treatment has not been effective. Research shows that many young adults think about this situation, even when their treatment is going well.

Improve care. Research involving this phase of a patient’s journey with cancer is currently lacking, so they believe that together, we have an opportunity to explore and improve the care that patients receive.

If you would like more information about the study and to find out if you’re eligible to participate, please contact the study project manager, Lauren Fisher at 617-632-6201 or Lauren_Fisher@dfci.harvard.edu.

1. Study participation includes a one-time telephone interview that lasts between 30-60 minutes.

2. The interviewer will ask you open-ended questions about:
– Plans for care
– Important qualities of care
– Priorities for care

3. You’ll receive a $25.00 Amazon.com gift card as a token of their immense appreciation for your participation.

Your information will remain confidential and no one will be aware of your participation except Dana Farber study staff.

Learn To Make Change With Your Young Adult Cancer Story

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Want to learn to tell your story to make change?

In a 2-hour, online workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into advocacy. Advocacy comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you. The workshop will be interactive and equip you with the skills you need to turn your story into advocacy.

The program is open to young adult cancer patients, survivors, and caregivers and is scheduled for Tuesday, May 26th. 2:30-4:30 pm PT / 4:30-6:30 pm CT / 5:30-7:30 pm ET.

When you sign up for the workshop, you’ll get a confirmation from the system that you’ve registered. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! 🙂 ]

What if I’ve taken the workshop already?  At this time, the workshop has not changed in between sessions.  A ‘Round 2’ of the workshop is in process though and we’ll debut it in the fall!

Tailoring Pain Questionnaires To Cancer Patient Preferences

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If you’ve been around Lacuna Loft for any length of time, you know how we love pointing you towards new tools and new research.  Today we’re letting you in on an easy and very impactful research opportunity with Fred Hutch researchers!

Many people living with cancer experience symptoms – including pain – which can last for years after cancer treatment. The best, and often only, way to assess post-treatment symptoms in survivors is by using patient-reported outcomes (PROs). PROs are questionnaire-based measures that ask patients directly about their symptoms and feelings. In this study we aim to develop PROs that are tailored to, and hence potentially meaningful for, individual patients. We are looking for adult cancer survivors with pain in the US to complete two surveys over one week.

For more information and to see if you are eligible, please go here.