Check Out Thoughtful Human And A Giveaway!

thoughtful human support cards

Ali from Thoughtful Human is taking over today to tell you about a great series of cards made specifically for supporting cancer patients!  Take it away Ali!

Hey, Lacuna Lofties!

Meet Thoughtful Human – a zero waste card company designed for dynamic relationships and challenging life circumstances. We have created a specific cancer/chemo support series and depression support series to offer friends and family a way to consistently offer support to their loved ones throughout this cancer journey. They are intended to offer raw, open-ended questions and sentiments that help foster real conversation around these difficult circumstances.

All sentiments and series stem from our own experiences with these issues, but we’re eager to hear your feedback and adapt them to best reflect the needs of the community we’re serving.  That said, we’d love your input!  Go to our website and look through the cancer/chemo support series and/or depression support series and fill out the form below!  If you provide feedback, you’ll be entered to win a Cancer Support Card Series (6-pack)!  Winner will be announced next week!

Would you be interested in sharing your story with the Thoughtful Human community? Contact: ali@thoughtfulhuman.co  P.S. As a part of the Lacuna Loft community, save 10% on any Thoughtful Human support cards with code: LACUNA10.

Want To Become More Physically Active?

exercise after young adult cancer

Lacuna Loft LOVES spreading the word about research!  A group of researchers in the Department of Kinesiology at California Polytechnic University San Luis Obispo is looking for young adult cancer survivors between the ages of 18-39 years old who live in California, Nevada, Oregon, or Washington who would like to increase their physical activity levels.  You must be more than 6 months post-cancer treatment and engage in less than 60 minutes of exercise per week!

All study participants will be a part of a 12-week intervention in which you will receive a Fitbit One with personalized step-goals, as well weekly emails of behavioral change content.  You will complete questionnaires and wear an activity monitor before and after the 12-week study.  Some participants will have the opportunity to earn money if their daily step-goal is met, which will be donated to a cancer charity of their choice.

In appreciation of your participation, you will get to keep your Fitbit One after the intervention is over and receive a $20 gift card.

If you are interested in participating or would like more information, please contact the research study staff!
Email:  survivorstepstudy@gmail.com
Phone Number: 805-756-5544

Research Study For Young Adult Cancer Caregivers!

young adult cancer caregivers study

For many people, young adulthood is a time of exploring and forming their identity.  Young adults are often completing their education, establishing a career, and developing intimate relationships.  Most young adults do not expect to take care of a loved one with cancer.  This is not a typical responsibility for someone their age.  Yet, about 1.46 million young adults take care of a cancer patient.  When a family member or close friend is diagnosed with cancer, young adults may have to put aside their current activities and future goals to take care of their loved one with cancer.  Taking care of a cancer patient can be difficult.  It can be especially difficult for young adults who have a lot of other responsibilities, like taking care of young children or starting a dream job.  Taking care of a cancer patient can sometimes lead to fear of abandonment, uncertainty, and loss.  It can also threaten one’s financial stability.  On the other hand, young adults can be protected from the negative parts of caregiving when they feel supported by those around them.

A social network is a group of people, like friends, acquaintances, and coworkers who are connected by interpersonal relationships.  Many people use social media, like Facebook and Twitter, to interact with their social networks.  Over 97% of young adults use social media in their everyday lives.  They use social media to get answers to questions about health, share information, and build relationships.  Using social media might help young adults who take care of a cancer patient.  This study asks the question, “How does using social media help or hinder a young adult when they start taking care of a cancer patient?”  By doing this study, we want to explain how young adults who are taking care of cancer patients can use social media to get the help they need.

If you are between the ages 18-39 years, and you help take care of a friend or family member who has been diagnosed with cancer in the last year, we need your help!  Please contact Echo Warner or Austin Waters for more information:
Echo Warner, MPH
Huntsman Cancer Institute
Echo.warner@hci.utah.edu
801.244.7040

Austin Waters
Huntsman Cancer Institute
Austin.waters@hci.utah.edu
801-213-5758

Stage IV Breast Or Prostate Cancer?

treatment access platform

Lacuna Loft is partnered with a company that is changing the landscape of how cancer patients access treatment options. The company was founded by a radiation oncologist and a pathologist, they have young adult cancer survivors on their team, and they help patients with Stage IV breast or prostate cancer identify their unique clinical trial options at top cancer centers in the United States. For a limited time, the company is offering this service at no cost to patients with Stage IV breast or prostate cancer in the Lacuna Loft community.

If you’re interested in learning more, please fill out this form and a member of their team will reach out to you to set up a time for a call where they will share more about the company and how they can help.

Financial Assistance For Young Adult Cancer Survivors

financial assistance to young adults after cancer

If you haven’t heard about them already, we’re here to tell you about a wonderful organization we are proud to call a friend, The Samfund.  They offer “financial assistance to young adults as they regain momentum in their lives after cancer.”  We’re talking today specifically about the great work done over at The Samfund because their Winter 2018 Grant application is now open!  The deadline is Thursday, February 8th at 5 pm EST to submit your application, so go do that now!

Learn here and submit your application here!

Cultivating Purpose In Young Adult Cancer Survivors

cultivating purpose in young adult cancer survivors

Graduate students from Claremont Graduate University in Southern California are studying cultivating purpose in young adult cancer survivors. They are interested in having in-person interviews next week in Los Angeles to talk to young adult cancer survivors between the ages of 14 and 27 and (if possible) somewhere between 0 and 3 years out of treatment. The total time commitment is 2-3 hours which includes the 1 hour, in-person interview and they are compensating people for their time.

Fill out the sign-up form below to be contacted to schedule your in-person interview!

Petition To Preserve Adolescent And Young Adult Fertility

preserve adolescent and young adult cancer fertility

The National Cancer Institute estimates that each year nearly one-quarter of all new cancer diagnosis will impact men and women of reproductive age. Cancer patients have a very short window to decide to preserve fertility whether prior to treatment or in between surgery and chemotherapy. However, half of adolescents and young adults aren’t told treatment will impact their fertility.

For those who do know, cost stops them. Fertility preservation is not covered by the majority of insurance companies and protecting parenthood is not a standard part of cancer care like reconstruction after a mastectomy. For a young woman this means spending $15,000 out-of-pocket even before cancer treatment begins.

Nine states – Arizona, Delaware, Hawaii, Missouri, New York, Pennsylvania, South Carolina, Vermont, and Maryland – have active legislation pending to require insurance companies to cover fertility preservation or expand access to infertility benefits.

Sign Critical Mass’s petition to let policymakers across the country know that you support protecting parenthood after a cancer diagnosis.

STARTRK2 Ignyta Clinical Trial is still recruiting!

ignyta clinical trial

Lacuna Loft believes strongly in helping young adult cancer patients have better access to clinical trials and studies since these young adults are grossly underrepresented.  Adolescent and young adult cancer patients haven’t experienced an increase in survival rates since the ’70s and researchers believe that clinical trial participation could help change this!  Clinical trials help find cures and we love sharing them with you.

Ignyta is running a trial and bringing molecular testing to the forefront of cancer cures.  From Ignyta:

We’re writing to share information about the STARTRK-2 clinical trial (sponsored by Ignyta) that is currently recruiting patients across the country who have solid tumors harboring NTRK, ROS1, or ALK fusions.  Fusions are a certain type of DNA defect that have been reported to be oncogenic, meaning they could be a cause of your cancer.  By performing molecular testing on a piece of your tumor tissue, it may determine if your cancer has one of these fusions.

Ignyta can provide no-cost molecular testing to see if you may qualify for the trial.  In most cases, this test can be performed on a tumor sample that was previously obtained via biopsy and stored, avoiding the need for a new biopsy.

Eligible patients enrolled into the trial will receive a new investigational drug called Entrectinib.  Entrectinib has shown preliminary antitumor activity in many different types of cancers.  Click here to learn more about a recent update from our Phase 1 study.

Please speak with your doctor to determine if molecular testing is right for you.  You may also contact Ignyta at 1.844.STARTRK or via email at STARTRKtrials@ignyta.com to learn more about the trial and to find a participating study center near you.

Interested in other studies?  Check out more information we’ve shared recently here.

Speaker Series Talk: Cancer In The Workplace Research – Robyn

cancer in the workplace

A few months ago we launched our newest program here at Lacuna Loft, the Speaker Series!  Our 5th Speaker Series Talk is now live!  You can now watch Robyn talk about her Cancer in the Workplace Research.

Robyn was a delight to talk to.  She says, “I became interested in research, especially when I heard that 33% of working age cancer survivors were exiting the workforce within 5 years of their diagnosis.”  Learn more in her video!

After my diagnosis with breast cancer, I was startled to hear that although 90% of working aged cancer survivors return to work, 33% of working aged cancer exit the workforce within 5 years of their diagnosis. I spent time reflecting on my experience and my personal decision to leave my current employer and embark upon a new career and wanted to find out more. I found in my personal experience that there was an expectation that after my last day of radiation I would be back to 100% which was not the case. I also found that, after putting up the biggest fight of my life, the garbage in my workplace was illuminated and I wasn’t willing to be a part of it any longer.

As a part of my transition, I found myself going from HR Professional to HR Instructor and now have the opportunity to research why working aged cancer survivors are leaving the workforce and also capture those who are still in the workforce but in different positions. I am uncovering why people are leaving or changing jobs (often to their detriment) and what employers can do to keep employees impacted by cancer in the workforce. My ultimate goal is to help employers understand the challenges cancer patients face and that recovery is not instantaneous and make the experiences of others who are transitioning back to work a little brighter.

Psst…want to submit a topic for a future Speaker Series?  You can do so here!