Hodgkin Hub: Empowering the Hodgkin Lymphoma Community from Diagnosis Through Treatment

In the patient community, personal stories from people who have faced a similar cancer diagnosis have the power to offer invaluable insights, support and connection to others who may be starting on this life-changing journey.

Over the last several years, Seagen heard from many people living with Hodgkin lymphoma who shared that they wanted to know more about what to expect after their diagnosis, including how to navigate making difficult treatment decisions and getting through their treatment. To meet that need, in 2018, Seagen created Hodgkin Hub – a dedicated online resource for people impacted by Hodgkin lymphoma seeking information and support before, during and following treatment.

Visitors to Hodgkin Hub can find information and resources about Hodgkin lymphoma, and also watch real patient videos, providing a chance to hear directly from others who have been diagnosed and learn how they navigated their own journeys.

Two highlighted video series includes:

“Day in the Life” Stories

The “Day in the Life” videos highlight individual perspectives from Hodgkin lymphoma survivors on their day-to-day experiences through diagnosis, treatment, and life after. Visitors can hear from:

Kyle: A member of the U.S. military, Kyle was diagnosed with Hodgkin lymphoma after returning from his deployment in Afghanistan. Watch here.
Piper: Diagnosed during her sophomore year of college, Piper learned the importance of self-advocacy and asking her doctor questions about her treatment to get the answers she needed. Watch here.
Liz: As a young adult, Liz was diagnosed just as she was starting college and leaned on her support system of her parents and brother to help her through her treatment experience. Watch here.

“What the HL?!” Survivor Stories

The What the HL?! videos feature Hodgkin lymphoma survivors who talk about the questions they asked (or wish they had asked) after diagnosis. Each provides their perspectives on navigating diagnosis, overcoming treatment challenges and finding support during life with Hodgkin lymphoma. Visitors can hear from:

Sarah: Diagnosed while still in high school, Sarah found it challenging to continue her education while going through treatment but kept a positive outlook. Watch here.
Bryan: Bryan was first diagnosed when he was in graduate school and working full time. His support system was there for him as he faced mental struggles and needed help as he prepared for treatment. Watch here.
Philomina: After being diagnosed with Hodgkin lymphoma, Philomina became an advocate for herself, researching her diagnosis and treatment options. She maintained a strong relationship with her oncologist by asking questions and requesting more information when she needed it. Watch here.

Visit HodgkinHub.com for more information and resources for the Hodgkin lymphoma community.

This post was presented by Seagen.

Meet Christina, Our Featured Community Member of the Week!

Meet Christina.

Home: New Jersey

Horoscope: Taurus

Favorite book: A Tree Grows in Brooklyn by Betty Smith

Hero: Julie Andrews

Superpower: Listening!

Hardest challenge: Working while in treatment.

Guilty pleasure: Cereal- any time of day!

Favorite Lacuna Loft Program: Creative Art Workshops 🙂

Proudest moment: Whenever I open a new musical.

The best piece of advice I’ve received: “Everything you want is on the other side of fear.”

How I stay mentally healthy: Baking! It’s tasty therapy!

Personal Mantra: You don’t have to be brave enough for all of it, just be brave enough for this.

My favorite part of being part of Lacuna Loft: The community that spans locations, ages, and diagnoses.

New Opportunities to Meet Others Facing Metastatic Cancer

woman sitting on bed

Our program calendar is chock-full of great things to fill the rest of this crazy year and we’ve got three metastatic only programs left in 2020! In chronological order below, you can get all the details on when and how to sign up!  Spoiler alert:  We have a focus group, a one-night creative writing workshop, and an entire track of Gabfest specifically geared towards young adults facing metastatic cancer.

— Lacuna Loft is a proud partner of the Coleman Supportive Oncology Collaborative for Adolescents and Young Adults (CSOC AYA), a collaborative of clinicians and patient advocates who treat and support AYAs with cancer. This collaborative recognizes that information and support resources for those living with metastatic or advanced diseases are lacking. This year, together, we set a goal to create a resource for young adults like you. We need you to tell us what should be in it. Be heard now and in the future by sharing your experience, thoughts & ideas as a contributor to this effort.  Please join us for an online discussion with members of the collaborative and other young adults like you on Thursday, November 19, at 5 pm PT / 7 pm CT / 8 pm ET via Zoom. You can go here to register in advance for this meeting and family members, caregivers, and friends are welcome to join, as well as, young adults facing any type of metastatic cancer aged 15-39.

— Then, back by popular demand, Lacuna Loft is facilitating a one-night creative writing workshop for those young adults facing metastatic breast cancer on November 23rd! (This is the only opportunity of the three that is specific to a certain diagnosis).  We’ll be writing with prompts in a group setting, with only metastatic breast cancer participants, supported by Seattle Genetics.  No expert writing experience needed here. Just grab your pen(cil), some paper, and our moderator will help guide you through thoughtful prompts that are set in a judgment-free, no-pressure environment.

— Also make sure to register for YA Cancer Gabfest, where you can attend a metastatic specific track (a whole day of the agenda is just for you!) and hear from others who are in your shoes.  Starting with an interactive chat with Dr. Mark Lewis, a panel of ya metastatic survivors, and a chill hangout to get to know one another afterward. It’s all happening the week of December 7th, with the metastatic day on December 10th!

Each program will offer the ability to meet others facing metastatic cancer, so sign up today for one or all of these opportunities!  Everything is online so you can be home, cozy and comfy, and connect with others who understand what it’s like to face metastatic cancer as a young adult.

Questions about any of these free programs? Contact aerial@lacunaloft.org!

Guided Yoga Nidra Meditation With Momma G

garden gnome meditating

Angie Giallourakis (aka Momma G) will be leading four guided yoga nidra meditation classes! Each class will start at 6:30pm Eastern Time Zone every other Sunday starting on November 8th. If you’d like to just join one class or join all four the choice is yours!

This is a collaboration with our friends at Elephants and Tea!

Sign up here to join Momma G! We look forward to seeing you! You will receive a confirmation email upon registering.

Session One: The Compassionate Heart and Your Thirty Trillion Cells – November 8th

Session Two: The Waterfall – November 22nd

Session Three: Visualize Your Inner Strength – December 6th

Session Four: Love Yourself – December 20th

Note: Each session will be approximately one hour.

Book Club: The Cast Chapters 19-21

people leaning against one another

Welcome to the comments and discussion of the Young Adult Cancer Book Club! We are reading The Cast by Amy Blumenfeld! Catch up on Chapters 1-2, Chapters 3-4Chapters 5-6, Chapters 7-8,  Chapters 9-10, and Chapters 11-12, and Chapters 13-15, and Chapters 16-18! Read participant reactions and follow along with us each week as we read through the book. Caution, spoilers below!

Week 9: Chapters 19, 20, and 21

By Jennifer S.:

Chapter 19

This chapter enamored me with Holly and Adam and their relationship all the more. Though I have no personal experience with Jewish traditions, it was touching to see their pregnancy journey reach its emotional peak at the bris. They have such a loving relationship, highlighted all the more by the compromises Holly mentioned. And Adam getting up an extra night to take care of Ezra, as well as his respect for the bakery workers, helps portray him as a great man. He has more integrity as a spouse and father than probably any other man in the book. The relationship between Holly and Adam is wholesome and refreshing compared to the drama between other couples. I’m really rooting for their little family.

Chapter 20

It was gut-wrenching to see Holly’s peaceful life suddenly ripped apart by the accident. She’s so concerned over Becca that there was no thought in her mind it could be her husband in trouble. On the other hand, it was heartwarming to see Jordana and Holly come together for Adam’s sake, despite the tension in their past. Jordana using a line from her mindfulness class goes to show how she’s grown as a person. I was proud of Jordana for being so supportive and calm when she got to the scene of the accident. She didn’t let her natural Type-A tendencies take over, and was able to focus on Adam’s needs without being overbearing. I really felt for her when she drew the parallel between Adam’s crisis and being present for her hospital-bound best friend decades ago.

Chapter 21

Dang, this chapter was an emotional ride. At first, I was hopeful for Becca and Nolan’s relationship after he seemed to shake off some of his self-centered jerk tendencies. Things turned sour during the prosthetic shopping, though, and alarm bells went off in my head. They seemed to go off in Becca’s too. Both Becca and I have doubts that this guy is worth the trouble. Becca’s early-morning ruminations that showed her lingering affection for her husband were a welcome respite from the chaos that the reader knows is about to unfold surrounding Adam. I still think Becca’s given Nolan too many chances. Seeing Holly, Jordana, and Becca chatter at the hospital gave me hope that their lives had already climaxed in terms of stress, and things would start to improve again. It felt like they were all cautiously hopeful too. After everything, I can’t imagine the burden Becca must have felt the instant she saw the surgeons and knew the tragedy about to unfold.

In our next blog post, look for the comments and discussion on chapters 22-23!

We will talk about a few chapters each Monday until the book is done. If Monday happens to be a holiday, then the post will publish on Tuesday. Once we finish the book, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss. We’ll also have a video chat book club discussion at the end! Join in, in the comments every week! Also, there will probably be spoilers so read along with us! Excited about the young adult cancer book club? Have any suggestions for future reads? Let us know!

Book Club: The Cast Chapters 16-18

woman sitting on dock

Welcome to the comments and discussion of the Young Adult Cancer Book Club! We are reading The Cast by Amy Blumenfeld! Catch up on Chapters 1-2, Chapters 3-4Chapters 5-6, Chapters 7-8,  Chapters 9-10, and Chapters 11-12, and Chapters 13-15! Read participant reactions and follow along with us each week as we read through the book. Caution, spoilers below!

Week 8: Chapters 16, 17, and 18

By Rachel G.:

I have to be honest. I only read the blurb on the back of the book before requesting my copy and therefore didn’t know much about the book, so I was absolutely prepared to not like this book once I started reading it. Throw the words “Hodgkins Lymphoma” in a sentence, and it’s just about enough to make me want to tune out since that was my particular brand of cancer. HOWEVER, I was more than pleasantly surprised and moved by reading this book. I read it in one sitting and in about three hours.

Now, to get to my assigned section of chapters sixteen through eighteen. Our lives are comprised of so many different relationships, whether they’re the ones we’re born into or the ones we make for ourselves, and I believe that the weekend at Jordana’s had to have been fortuitous timing in repairing the friendship between her and Holly and the relationship between Becca and Nolan. That time spent in the ER between Holly, Adam, and Jordana allowed them to heal some connections that would ultimately lead to friendships Holly would need in the very immediate future and would have no way of predicting. Holly was also able to welcome Nolan into the group, which was pretty cool.

In our next blog post, look for the comments and discussion on chapters 19, 20, and 21!


We will talk about a few chapters each Monday until the book is done. If Monday happens to be a holiday, then the post will publish on Tuesday. Once we finish the book, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss. We’ll also have a video chat book club discussion at the end! Join in, in the comments every week! Also, there will probably be spoilers so read along with us! Excited about the young adult cancer book club? Have any suggestions for future reads? Let us know!

Meet Lacuna Loft’s Featured Community Member of the Week, Gage!

Gage Donovan

Meet Gage.

Home: Chicago, Il

Horoscope: Leo

Favorite book: The Crow Girl by Erik Axl Sund

Hero: Bill Nye the Science Guy

Superpower: Mindreader

Hardest challenge: Gravity (but also having to watch so many loved ones go through cancer).

Guilty pleasure: Pasta

Favorite Lacuna Loft Program: Book Club

Proudest moment: Learning to fly

The best piece of advice I’ve received: When we know better, we do better.

How I stay mentally healthy: Personal time

Personal Mantra: One day at a time.

My favorite part of being part of Lacuna Loft: Meeting different program participants- Lacuna Loft has a great community.

P.S. You can meet Gage during November’s Creative Art Workshop: Gingerbread Barns! Sign up today and check out our other workshops!

Supporting Lacuna Loft In A Crafting Night

Join Lacuna Loft for a night of fun and crafting, making monogrammed ceramic coasters led by our Chief Program Officer, Aerial Donovan.  When you can’t join a paint and sip in person, we’ll bring the fun directly to you!  Grab a friend and join other Lacuna Loft supporters online for a chance to directly support our programs for young adult cancer patients, survivors, and caregivers while also creating fabulous monogrammed ceramic coasters.

After making your contribution toward the event we’ll send you everything you need for the event in the mail!

Join us on Monday, November 30th at 5 pm PT / 7 pm CT / 8 pm ET for a 2-hour Supporter Crafting Night.

Go here to grab your ticket today!

 

Making Gingerbread Barns With Us!

gingerbread cookies

Join Lacuna Loft for our next Creative Art Workshop: decorating Gingerbread Barns and #LetsMakeStuff together!

Come hang out in this more casual Creative Art Workshop while we decorate Gingerbread Barns!  We’ll send you a kit with everything you need.  No pressure to be Jacque Torres, we are aiming for more of a Nailed It vibe.  Sure to be full of lively conversation and fun attempts at perfection, sign up today.

Who: 17 young adult cancer patients, survivors, and caregivers.

When: Friday, November 20th @ 5:30-7:30 pm PT / 7:30-9:30 pm CT / 8:30-10:30 pm ET via video chat.* (*US time zones…please confirm what time this means for where you live).

How does it work? We’ll send you all of the materials you need to participate!  Lacuna Loft will send you an email about a week before the workshop with information on how to join the video chat.  ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.***

Please note: Due to the global pandemic and ever-increasing customs and delivery times, we have stopped shipping outside of the United States. If you are interested in joining, please fill out the form and we will send you a list of supplies needed to participate, so you can still join us! Thank you for your understanding! If you have any questions, you can contact aerial@lacunaloft.org.

Click here to sign up to be notified when this program is announced by choosing it under ‘Programs you’re interested in.’ (Feel free to choose to be notified when other programs are announced too!)

UFO Edition, YAC Hangout!

craft supplies on table

Come join a UFO-edition Young Adult Cancer (YAC) Hangout next week!  Join together online with other young adult cancer patients, survivors, and caregivers for an informal meet up via video chat.

What’s UFO you say?  Un-Finished Object!  Have a project you’ve been working on that’s been hanging out unfinished?  Tackle it while hanging out with a group of young adults facing cancer!  Want to just come and hang out?  That’s fine too!

Monday, November 9th from 5:30-7 pm PT / 7:30-9 pm CT / 8:30-10 pm ET!

Interested in joining? Sign up here!  (Just fill out the form and make sure to choose YAC Hangout under the ‘Programs you’re interested in’ section!) If you’ve already filled out this form and selected YAC Hangouts, we’ll automatically send you a zoom link!