Join the Journey

Spring Newsletter - March 2016

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Spring Blooms!

Winter sped by, and now the first signs of spring are starting to bloom. Join the Journey starts planting the seeds for more fun-filled events, and with your help, fellowship and support for breast cancer survivors in our community.

President's Thoughts

It's 2016 already! It’s hard to believe another year has come and gone!

It seems like just yesterday when I sat down to write the 2015 Spring Newsletter article, with light snow falling and groundhog Punxsutawney Phil predicting six more weeks of winter. Today as I write, we are having the worst blizzard of the winter and Punxsutawney Phil says there will be an early spring. It just goes to show how unpredictable winter in Minnesota can be!

As I start the second year of my two-year term as president, I am so proud of all we accomplished in 2015 to further strengthen Join the Journey programs, carry out its mission, and continue to build a high-functioning, team-oriented board of directors. A huge thank you to all of our directors, as well as all our volunteers and friends of Join the Journey. You are truly amazing!    

We had another productive and fun annual board of director planning retreat in January. Last year we learned we have a strong, diverse mix of personalities in the group, which is foundational for a cohesive leadership team. This year we built on that foundation with an advanced exercise that provided a review of the attributes of each of our personalities, while also incorporating our two new board members, Carol and Andrew, into the mix. It was an excellent team-building exercise.


The second half of the retreat was spent on strategic planning. After much discussion, the group decided that 2016 will be spent refining and strengthening our current programs as well as focusing on building stronger relationships in the community. Our goal is to enable Join the Journey to reach more people, and most of all, to carry out our mission to promote breast cancer awareness in our local community and to support to all individuals on their breast cancer journey.
With spring fast approaching and a strong plan in place, we are well prepared for another season of scheduled fundraising events. Believe it or not, 2016 Walk planning is already gearing up! These events are absolutely mission-critical for Join the Journey. I strongly encourage you to visit our website, www.jointhejourney.us to learn about all of our wonderful programs and the ways you can volunteer and get involved.

Here’s what’s coming up:

Friday, April 8, 2016 – Tough Enough to Wear Pink bull-riding night at Graham Arena on the Olmsted County Fairgrounds. For more details, visit www.rochesterbullriding.com.

Early June - Our dragon boat, Waves of Hope, is getting ready to hit the water on Wednesday evenings. Please come out for fun on the water every Wednesday at 5:45pm. Thanks for all you do to keep us afloat.

Saturday, June 25, 2016 - Pink Out at Deer Creek Speedway. Enjoy an exciting day at the race track and support breast cancer survivors!

Sunday, September 18, 2016 – Annual Breast Cancer Awareness Walk at Mayo High School. Online and paper registration will be available soon!

October - Bras for a Cause. Don’t forget to start collecting those old bras!

Watch the Join the Journey website at www.jointhejourney.us for more exciting events as they are added!

I am eager to step on the throttle and get 2016 going!  It will take all of us working together to reach more people in different ways. Thank you so much for your continued support. Nobody should have to walk the journey alone!

Lori Denison
President, Join the Journey

1530 Greenview Drive SW
Suite 212
Rochester, MN 55902


Lori Denison
Cyndie Kahn
Kathy Williamson

Yuliya Antropova-Elder
Andrew Fuchs
Linda Grigoleit
Mary Hurt
Ashley Kuhn
Linda Miller
Carol Phillips
Margie Loprinzi
Anne Mehnke
Jan Schmidt
Rochelle Befort
Diane Trisko

Executive Director:
 Christine Fredriksen
Office Manager:
Gail Storing

"Promoting breast cancer awareness and supporting individuals on their breast cancer journey."


Upcoming Community Events

Tough Enough to Wear Pink
Friday, April 8 
at Graham Arena, Olmsted County Fairgrounds starts at 7:30pm

Pink Out 
Saturday, June 25 
at Deer Creek Speedway 

Healing Waters at the Rochester Garden Club Tour
Thursday, July 21 from 4pm to dusk

12th Annual Breast Cancer Awareness Walk
Sunday, September 18 
at Mayo High School
THANK YOU SO MUCH to our Pink the Rink Volunteers:

Lori Denison
Haley Holt
Cyndie Kahn
Jessi Kaster
Laura Kaster
Carrie Koehler
Ashley Kuhn
Alissa Lawler
Margie Loprinzi
Linda Miller
Denise Villeneuve
Emily Whitcomb
Sue Whitcomb
Angela Whitcomb
Kathy Williamson

Calling all Volunteers!
Are you interested in planning fun events, giving back by volunteering your professional skills, or socializing and spreading the word about JTJ? We are always looking to add to our volunteer base in order to increase the diversity of skills, expertise and availability of our volunteers.

We have opportunities for most ages and skill types to volunteer from home, at our office or out in the community. Our online volunteer sign-up process allows you to easily sign-up for Join the Journey volunteer opportunities on your own time and with flexibility to your schedule.

If you’d like to become a Join the Journey volunteer, please visit our Volunteer Page or contact our Volunteer Coordinator, Tiffinee Swanson at jointhejourneyvolunteer@gmail.com.

Make Waves this Spring with our Making Waves Floating Fellowship!

Learn to paddle a dragon boat and connect with breast cancer survivors and supporters. All are welcome; safety equipment is provided. 
Join us beginning in June, every Wed evening at 5:45 pm behind the old Silver Lake Fire Station. Contact Carol Phillips at makingwavesteam@gmail.com for more information.

Pink Ribbon Mentors 

By Linda M. Swan

The start of a new year offers a good time to reflect on the changes that have occurred in the Pink Ribbon Mentor (PRM) program this past year. Change isn’t easy; it can push us out of our comfort zone and it can take a bit of communication, as was evident by numerous emails from our leader, Linda Miller.  But embracing change is a good thing!

Our PRM mission is to meet breast cancer patients and give them hope, encouragement and an offer of mentorship through our shared experience. Meeting these patients early in the cancer treatment process, when it is most scary, is key. We inform them of our program and arrange to contact them to see if they are interested in a mentor. We rely on the Breast Clinic Nurse Educators to connect us to interested patients. Previously, the nurse educators did this with a "pager" but, quite frankly, the pager process wasn’t working out. Many missed pages and delays in getting to the Breast Clinic caused us to miss patients. After some discussion, we decided the solution was a Pink Ribbon Mentor cell phone. Although it would be cool if it was actually pink, it is not. But, it has been in use since November and it is working well. Although it meant a phone number change for our brochures and contact cards, the number is gradually getting corrected to 507-293-1635.

A second change was that the Women’s Cancer Resource Room on Gonda 10 was discontinued.  It was great to have this room for visiting with mentees, other mentors and numerous passersby, but Mayo Oncology is growing and that space was needed for other uses. We now have a table and a handful of chairs in the Gonda 10 lobby, just east of the Navigator desk, close to the entrance to the chemo rooms. Although the move to this new location took some work and some clever space management to accommodate all our PRM "stuff," downsizing is never a bad thing and having a presence in the lobby may actually elevate our profile.

Perhaps the biggest change to the Pink Ribbon Mentor program was the reconfiguration of the chemo area on Gonda 10.  The communal rooms of six chairs per room and the open configuration for delivering chemo to patients was replaced over several months of 2015 with individual patient rooms.   The new chemo rooms are lovely and afford the patients more privacy when visiting with family and friends but they do present more challenges for us, as mentors.  Balancing patients’ need for privacy with our goal to be of service through our presence, encouragement and support is an endeavor for which we are ever vigilant.

There have been a lot of changes in the PRM program in 2015, and 2016 will involve more challenges and more ideas on how to best serve our mentees. Tune in to future newsletters to find out what we are up to.  Change is good!

Special thanks to all our Pink Ribbon Mentors! These hard-working and generous volunteers are breast cancer survivors who donate the greatest gifts of all: their time, experience and hope. Our Pink Ribbon Mentors have volunteered more than 30,000 hours since 2007 in support of breast cancer survivors.

Immunotherapy: New Strategies to Treat Breast Cancer
- Minetta C. Liu, MD

The goal of cancer immunotherapy is to activate a patient’s own immune system to recognize and kill tumors. An improved understanding of the complex interactions between host immune cells and the tumor microenvironment have led to novel approaches toward this goal, including recent FDA approvals. The success of immunotherapy in the treatment of melanoma, lung cancer, and kidney cancer has generated great interest in use of this strategy for the treatment of breast and other solid tumor malignancies. Recent data demonstrate that HER2-positive breast cancers and hormone receptor negative, HER2 negative breast cancer are able to stimulate host (patient) antitumor immune responses,1,2 and emerging results from clinical trials with vaccines and immune checkpoint inhibitors in breast cancer are promising.3

Vaccines are prepared by manipulating the causative agent or product of a disease to serve as an antigen that will stimulate the production of antibodies and provide immunity against the disease of interest without actually inducing the disease. Studies in the setting of metastatic breast cancer have yielded low rates of tumor response or shrinkage with vaccine therapy, which is not unexpected given the likelihood that the immune response generated by vaccines will be more effective at eradicating disseminated micrometastases in the setting of early stage breast cancer as opposed to overt disease in the setting of metastatic disease. At present, the agent furthest in development is nelipepimut-S (NeuVax), a peptide derived from the HER2 protein.4 The PRESENT (Prevention of Recurrence in Early Stage Node Positive Breast Cancers with Low to Intermediate HER2 Expression with NeuVax Treatment) trial is a phase III FDA registration trial that completed enrollment of 758 subjects in April 2015. The primary objective is to significantly increase the percentage of patients alive and cancer-free at specified time points. Disease-free survival in patients with operable early-stage, node-positive breast cancer who receive standard multimodality therapy plus vaccine mixed with sargramostim (the treatment group) will be compared to disease-free survival in patients who receive standard multimodality therapy plus sargramostim alone (the control group). Initial results are expected in 2018, after approximately 36 months of follow-up.

Nelipepimut-S is being developed for patients with any degree of HER2 protein expression in the primary tumor, so those with traditionally HER2 negative, indeterminate, or positive disease may benefit. However, individuals with no HER2 expression on the tumor (i.e., HER2 0) will not be eligible. Other vaccines are therefore being explored, including poxviral-based vaccine therapy targeting the tumor associated antigens CEA and MUC1 (PANVAC) and a novel folate receptor alpha vaccine developed at the Mayo Clinic that will be evaluated in a phase II trial for hormone receptor negative, HER2 negative, early stage breast cancer later this year.
Immune checkpoint inhibitors
The intact immune system distinguishes between normal (“self”) cells in the body and those considered unwanted and “foreign.” This process is facilitated by multiple “checkpoints” that serve as brakes to avoid overactivation of the immune system on healthy cells. Malignant cells may manipulate the checkpoints in an effort to escape detection and destruction by the immune system. Checkpoint inhibitors are agents that target these proteins in order to restore normal immune function. CTLA-4 and PD-1 are two checkpoints that have been studied as anti-cancer therapy.
PD-1 blockade has already entered standard clinical practice with the recent FDA approvals of pembrolizumab (Keytruda) for unresectable or metastatic malignant melanoma and metastatic non-small cell lung cancer; and nivolumab (Opdivo) for unresectable or metastatic malignant melanoma, metastatic non-small cell lung cancer, and advanced renal cell carcinoma. Efforts to assess efficacy in breast cancer include the recent KEYNOTE-012 trial.
5 Eligible patients had heavily pretreated, hormone receptor negative, HER2 negative, metastatic disease, and the findings were notable for prolonged responses of >40 weeks. Given the early favorable evidence supporting PD-1 blockade in hormone receptor negative, HER2 negative, metastatic breast cancer, an international phase II breast cancer trial is currently underway.
Future directions
Immunotherapeutic approaches to treat breast cancer continue to expand. The number of vaccines and checkpoint inhibitors in development and in clinical trials is increasing exponentially. Other immune based strategies are also under investigation, including adoptive T cell therapy with genetically engineered T cells, oncolytic viruses that preferentially infect and kill cancer cells, and combinations of standard chemotherapy or HER2 directed therapy (e.g., trastuzumab or Herceptin) with any of the above. The success of immunotherapy in breast cancer likely will depend on identifying the appropriate strategy for the particular disease type and stage.

Click here to see the references to this article. 

Making Waves, a floating fellowship
By Sue Whitcomb

Wednesday evenings continue to be a great gathering time for Making Waves, even though we are not on the water. Our team member, Judy Rutz, continues to schedule activities for us that are fun and entertaining.  For example, each month we meet at a different restaurant to celebrate birthdays occurring during that month. Who doesn’t enjoy a girlfriend night out and a chance to check out one of Rochester’s many eating establishments?

One memorable Wednesday evening was spent pot-lucking at River Bluff Condos in the Elton Hills neighborhood. What a beautiful setting that is! We enjoyed good company and good food relaxing by the fireplace in a room that looked over the Zumbro River.  After our meal, a special guest, Corrine McGinty, showed us how to make snowflakes out of folded paper.  Each snowflake incorporated an animal shape, with some of them being quite intricate.

A repeat activity is meeting at A Child’s Kingdom in Northbrook Plaza to enjoy an evening of adult coloring, wine and snacks. The owner provides the coloring pages, colored pencils and gel pens and we provide the drinks, snacks, creativity and chit chat. The toy store provides such a fun atmosphere for coloring and socializing as well as maybe doing a little shopping for a birthday girl or boy. If you want to buy a toy for your own amusement . . . we won’t tell!

Of course, we continue to have the pizza and movie nights which are always enjoyable. And periodically we meet at RCTC to walk around the indoor track for exercise. It is amazing how much more fun exercise is when it is done with friends. It is fair to say that on Wednesday nights, Making Waves is having fun someplace in Rochester. Come join us!  To get on the mailing list to receive notifications of our activities, write to makingwavesteam@gmail.com.

Pictures of the Quarter: Top left photo: Julie Hicks at a Making Waves social event. Top right photo: crowd at Pink the Rink 2016. Bottom photo: Sled race competitors from JTJ at Pink the Rink 2016. Send us your JTJ pics to info@jointhejourney.us and see your picture here!

References for "Immunotherapy: New Strategies to Treat Breast Cancer" by Dr. Liu
1. Adams S, Gray RJ, Demaria S, et al. Prognostic value of tumor-infiltrating lymphocytes in triple-negative breast cancers from two phase III randomized adjuvant breast cancer trials: ECOG 2197 and ECOG 1199. J Clin Oncol. 2014;32(27):2959-2966.
2. Loi S, Michiels S, Salgado R, et al. Tumor infiltrating lymphocytes are prognostic in triple negative breast cancer and predictive for trastuzumab benefit in early breast cancer: results from the FinHER trial. Ann Oncol. 2014;25(8):1544-1550.
3. Cimino-Mathews A, Foote JB, Emens LA. Immune targeting in breast cancer. Oncology. 2015;29(5):375-85.
4. Mittendorf EA, Clifton GT, Holmes JP, et al. Final report of the phase I/II clinical trial of the E75 (nelipepimut-S) vaccine with booster onoculations to prevent disease recurrence in high-risk breast cancer patients. Ann Oncol. 2014;25(9):1735-1742.
5. Nanda R, Chow LQ, Dees EC, et al. A phase Ib study of pembrolizumab (MK-3475) in patients with advanced triple negative breast cancer. Clin Cancer Res. 2015;75(suppl; abstr S1-09).

1530 Greenview Drive SW, Suite 212
Rochester, MN 55902

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