Sarcoma Support Group | Penn Medicine

Feeling Better about your Appearance

2011-11-22T15:35:00.000-05:00

Looking good is not a matter of vanity. Studies show that people who are pleased with how they look have more energy, more resilience and a better attitude.

This helps them handle the "ups and downs" of cancer treatment more easily.

The Faith and Hope Boutique at the Abramson Cancer Center and Solutions for Women boutique at Pennsylvania Hospital feature many articles chosen specifically for cancer patients. Personal image programs also give patients ideas on how to look their best.

The Look Good, Feel Better Workshop is a free program of the American Cancer Society that teaches beauty techniques to women who are actively undergoing cancer treatment to help them combat the appearance-related side effects of radiation and chemotherapy.

The Look Good, Feel Better Workshop is held quarterly at the Joan Karnell Cancer Center at Pennsylvania Hospital.

Cancer Survivor signs with New York Giants; Appears on 60 Minutes

2011-11-08T09:00:00.000-05:00

Mark Herzlich (left) pictured with Dr. Staddon
and his mother, Barbara.

A little over three years removed from being diagnosed with Ewing’s sarcoma, a rare form of bone cancer, Mark Herzlich signed with the National Football League’s (NFL) New York Giants. Recently, Mark's story appeared on 60 Minutes.

A native of Wayne and graduate of Conestoga High School, Mark was an All-American linebacker at Boston College and named Atlantic Coast Conference (ACC) Defensive Player of the Year in 2008.

Following his award-winning season, Mark was told he had cancer and was referred to Arthur Staddon, MD, director of the Joan Karnell Cancer Center and a renowned specialist in the treatment of bone or soft tissue sarcomas. Mark underwent chemotherapy with an excellent response, followed by chemo-radiation. He then had surgery performed by orthopedic oncologist Richard Lackman, MD, at Pennsylvania Hospital to have a tumor removed from his leg and a titanium rod inserted.

After sitting out the 2009 season, Herzlich made a full recovery. He returned to the football field for his senior season at Boston College in 2010. Then, on July 26, Mark signed a contract to play professional football for the New York Giants.

Dr. Staddon and all of the staff at the Joan Karnell Cancer Center congratulate Mark on this momentous achievement and wish him continued success as a football player (except when he plays the Eagles) and as an advocate for cancer survivors everywhere.

"Chemo Brain" - Memory Loss after Chemotherapy

2011-11-01T13:44:00.000-04:00

People with cancer report memory and attention problems after chemotherapy. This is sometimes called “chemo brain.” Many survivors report they have problems paying attention, finding the right word, or remembering new things.

Research is starting to explore why some people develop problems with memory and concentration while others don't. People who have had chemotherapy or have had radiation to the head area are at higher risk for these problems.

Cancer patients should speak to their physicians if they:

Have memory and thinking problems
Think a medicine could be causing or adding to the problem
Suffer from depression or anxiety, which can cause problems with concentration and memory

Support groups can be helpful when transitioning from active treatment to survivorship, allowing you to talk to others who may have similar experiences.

In addition, professional counseling is available at both the Abramson Cancer Center and the Joan Karnell Cancer Center at Pennsylvania Hospital.

Changing Feelings about Intimacy

2011-10-25T16:02:00.000-04:00

Feelings about close physical and intimate relationships are related to the way people think about how they look to others, their ability to handle physical activity, level of fatigue, and anxiety or stress level. These things can place a strain on normal expressions of sexuality and can create concern about sexual desire or desirability.

The effect of cancer treatment on sexuality is different for everyone. Some people are unaffected, while others have changes in their desired level of activity. Some find the experience brings them closer to their partner. Others may find sexual activity to be less important for a time.

Patients should speak to their doctor or nurse about any concerns they have. He or she can provide advice or information about people who can help. Some basic suggestions include:

Get information, rather than worrying, discuss questions or concerns with a doctor or nurse
Share feelings with a partner
Try different ways of expressing intimacy
These feelings are not unusual; don’t delay getting information or counseling if problems arise

Counseling services at Penn Medicine offers support and information about intimacy and the issues around intimacy cancer patients may face as they undergo cancer treatment.

For information about individual or couples counseling, or to make an appointment at the Joan Karnell Cancer Center, call 215-829-6466.

Walk, Run or Cycle to Support Sarcoma Awareness

2011-06-27T09:46:00.002-04:00

The stands at the River Winds after the 2010 "Walk, Run, or Cycle"

Patients and staff from the Joan Karnell Cancer Center at Pennsylvania Hospital are invited to participate in the fifth annual Team Sarcoma Walk, Run or Cycle as part of the Team Sarcoma Initiative.

The Peter Skelton Sarcoma Research Foundation (PSSRF) brings the excitement of this worldwide campaign to southern New Jersey on Sunday July 17 with Team Sarcoma Walk, Run or Cycle at the Riverwinds Community Center in West Deptford, NJ.

Team Sarcoma Initiative is a global movement focused on increasing sarcoma awareness and raising research funds during International Sarcoma Awareness Week. Since its inception in 2003, the initiative has grown thanks to the support of caring individuals, families and communities who volunteer to host a variety of local events across the world.

The event allows participants the option to cycle, run, or walk in order to raise awareness for sarcoma. In addition to the activities, there will be live entertainment and prize raffles. Refreshments, T-shirts and bracelets will also be available for purchase with all proceeds going to support sarcoma research and programs.

PSSRF was founded by Peter Skelton’s brother and sisters in memory of their brother who passed away from soft-tissue sarcoma. In their brother’s honor, their wish is to help others fight sarcoma and work towards finding a cure for the disease.

Part of the proceeds raised from this event benefit patients with sarcoma at the Joan Karnell Cancer Center at Pennsylvania Hospital by supporting research and patient programs.

To register for this event, visit http://www.sarcomaps.org/event-registration/.

Young Cancer Survivors Share Thoughts on Program

2011-01-12T13:33:00.008-05:00

Participants from the first sessions of the Joan Karnell Cancer Center's "Walkabout Program: Looking In, Looking Out," took time to share their impressions about the cancer survivorship program for young adults. This new program is funded by the Lance Armstrong Foundation and offered at the Joan Karnell Cancer Center.

The Walkabout program mixes two approaches, (1) meditation and yoga to reduce stress and support managing energy resources and (2) creative expression using digital photography, art materials, collage and writing. These approaches to well-being have proved successful in decreasing distress from illness including physical pain, anxiety, depression and fatigue. Each participant is provided a camera during the sessions to collect images to creatively explore the present and imagine a meaningful future.

Following are some comments and the art from the first young adult cancer survivors who participated in the fall program:

Seth
On collage making from his digital photographs:"I like collage. It's kind of a middle ground between raw creation of art and my work as a web designer. With collage, you work with bits of things to make something new. It's easier to get into and very rewarding."

On informal mindfulness practice:"The advantage for me has been the awareness of my physical state internally when I am having a thought. I'm definitely less reactive to the world around me now after experiencing mindfulness. It just gives you the ability to short circuit your reactions earlier on in the process before you get worked up and react physically….more control over interaction with the environment, that's definitely a good thing.

Melissa
On formal mindfulness meditation practice:"Participation in Walkabout has been very helpful. I find myself practicing mindfulness meditation three or four times a week to have some personal time for myself. This is something I wouldn't have known about or thought to do before Walkabout."

Chris
On managing emotions:"I have been struggling with ways to figure out what went on. I came to Walkabout because it would help me with the anger stuff and maybe help me relax and stay calm and not be so anxious. It helped me a lot."

On creative expression:"I liked the art (collage) making. At first, I was intimidated. I made something pretty cool and everybody liked it and I liked it. I guess that's more important that I like it. That's what matters."

Moving Forward

The directors of the Walkabout program are looking for ways to increase participation in the program for 2011 by changing the session format. Some of the planned changes include:

An orientation workshop to be held the second Saturday of each month.
After attending the workshop, participants can join weekly drop-in sessions to build 20 hours of participation during the year. Sessions are held on Wednesdays from 4:30 to 7 pm at the Joan Karnell Cancer Center.

The first Walkabout orientation workshop for 2011 is scheduled for 1 tp 5 pm, Saturday, February 12. For more information, call 215-829-8700 or 215-629-6466.

The Duke Street Brass and The New Age Brass perform a benefit concert for sarcoma research at Penn Medicine’s Joan Karnell Cancer Center.

2010-11-01T16:57:00.000-04:00

The Duke Street Brass and The New Age Brass perform a benefit concert for sarcoma research at Penn Medicine’s Joan Karnell Cancer Center.

WHEN: Sunday, November 7th at 7:30 pm
WHERE: Steinman Hall
42 North Prince Street
Lancaster, PA
$5 to 10 suggested donation

The concert features works by: Joaquin Rodrigo, Dave Brubeck, Samuel Barber, John Williams and many more.
Sponsored by Millersville University

What's Fun, Free, And Near Philly?

2010-10-07T15:48:00.006-04:00

2010 LIVESTRONG/Planet Cancer Retreats for Young Adults

Who: Open to young adult cancer survivors ages 18-27 years of age

What: A weekend designed to bring young cancer survivors together to build connections, have fun and maybe learn something along the way

When: October 15th- October 17th

Where: ACE Conference Center in Lafayette Hill, PA

*Space is limited and the weekend will be here before you know it!!!!!

Lunch With Experts!

2010-09-10T10:15:00.007-04:00

Even if you aren't in school anymore it can still be fun to reminisce, so cut off the crust on your PB and J and tune into Oncolink's Brown Bag Chat: a live internet-based discussion!

This month:

Issue's Facing Young Adults After Cancer Diagnosis

Thursday September 16th, 2010

12:30-1:30 pm

Ask the experts your questions about the issues facing young adults before, during and after treatment.

Visit Oncolink to learn more, log on or submit a question ahead of time!

Start Your Engines!

2010-08-26T10:23:00.000-04:00

Please come join us at the Radnor Hunt Concours d’Elegance: September 10, 11, and 12. This is not your typical “car show”, this is an elegant invitational classic car event. Guests are invited to experience the historical and aesthetic qualities of cars that have been hand selected while enjoying the English garden party setting of the historic grounds of the Radnor Hunt in Chester County.

A black-tie dinner party is held the night before the Concours to benefit a major charity as well as perennial beneficiaries, this year Joan Karnell Cancer Center has been honored as one of the event’s beneficiaries.

We would appreciate your support by attending this exceptional event.

We hope to see you there!

Coming This Fall To Joan Karnell Cancer Center:

2010-08-26T09:30:00.000-04:00

The Walkabout Program: Looking In, Looking Out

This new program for young adults (18-30 yrs old) with cancer has been funded by the Lance Armstrong Foundation and offered at the Joan Karnell Cancer Center.The Walkabout program mixes two approaches, (1) meditation and yoga to reduce stress and support managing energy resources and (2) creative expression using digital photography, art materials, collage and writing. These approaches to well-being have proved successful in decreasing distress from illness including physical pain, anxiety, depression and fatigue. Each participant will be provided a camera during these sessions to collect images to creatively explore the present and imagine a meaningful future.

Please email Caroline Peterson for more information about this program or to enroll.

See you this fall!

There Was Sand And Sun And Lots Of Fun!

2010-07-27T10:00:00.005-04:00

Sand Castles for Sarcoma wasn't just a day at the beach these talented sand sculptors raised $5,000 for sarcoma research! Congratulations and nice sand sculptures!

Anyone Up For A Sand Castle Building Contest???

2010-07-23T12:23:00.003-04:00

Sandcastles for Sarcoma Awareness

Sunday July 25, 2010 from 9:00 a.m. to noon.

This fun event will be at The Cove Beach – south end of Beach Avenue in Cape May, New Jersey. For a $20 donation your team can enter this unique contest. Prizes will be awarded in many categories. Have a fun filled day in the sun creating your dream castle!!!!

Proceeds will benefit the Sarcoma Program at the Joan Karnell Cancer Center at Pennsylvania Hospital

PSSRF Walk 2010-The Biggest One Yet!

2010-07-22T16:35:00.006-04:00

This year, International Sarcoma Awareness Week officially started with 274 people waking up early Sunday morning, despite the blazing sun and record temperatures, to participate in this year's Peter Skelton Sarcoma Research Foundation Walk and I am sure everyone would agree (myself included) it was totally worth melting like a Popsicle!

Hope to see you all and more next year!

Be sure to check out the video on PSSRF's website

Sweet Treats For Weary Feet

2010-07-20T09:28:00.004-04:00

Thank you to everyone who supported Joan Karnell Cancer Center's Team: Together We Can Burn Rubber. To kick off International Sarcoma Awareness Week we held a bake sale and raised $300 in just one afternoon! Your generosity will go toward our team's contribution to the Peter Skelton Sarcoma Research Foundation.

International Sarcoma Awareness Week!

2010-07-19T13:13:00.004-04:00

July 17th-July 25th

Spread the word!

Time Is Running Out!!!

2010-06-28T09:35:00.004-04:00

Don't forget to sign up for the PSSRF Walk, Run or Cycle in Support of Sarcoma Cancer!

Sunday, July 18th, 2010

Cycle: 7:30

Walk: 8:30

Run: 9:00

See you there!

July Is Sarcoma Awareness Month!

2010-06-15T13:46:00.003-04:00

The Team Sarcoma Initiative takes place all over the world and unites individuals, communities, charitable organizations and medical institutions in a global effort, because Sarcoma Knows No Borders.
Kick off the month by attending our next Sarcoma Support Group, July 7th: 5-7pm @JKCC.

Please support the following events who have designated the Sarcoma Program at the Joan Karnell Cancer Center as a beneficiary of their fundraising;
Peter Skelton Sarcoma Research Foundation, Team Sarcoma 2010 Walk Run, Cycle, West Deptford, NJ, July 18, 2010.
Make a Team or join our team: Team JKCC: Together We Can Burn Rubber

And if you can't make it to the walk or you are looking for more ways to show support come out for Sandcastles for Sarcoma Awareness, Cape May NJ, July 25, 2010.

A Survivor Takes a Stand Against Cancer

2010-06-08T09:05:00.005-04:00

I was recently given an article from the LIVESTRONG Quarterly which featured Heidi Adams, a Ewing sarcoma survivor, diagnosed when she was 26. Adams expressed her hopes, fears and anger for the undeserving youth affected by this disease constructively through planetcancer.org.

Last summer, planetcancer.org merged with LIVESTRONG. "It's our same mission, but on steroids," says Adams. Teaming up with LIVESTRONG has helped Planet Cancer with outreach efforts including the "Welcome to Our World tool kit" (a fan deck that includes the top 10 things a health care professional needs to know about cancer, by facilitating a conversation between the young adult and those who take care of them, it reframes the persisitently one-sided relationship between the two).

What's going on this Summer for Planet Cancer? Adams hopes to add more young adult retreats, grow the heart and soul of the Planet's social network, and mobilize the membership toward cancer-related advocacy action.

Sounds exciting! If you agree check it out: planet cancer

Tell Us About Your Hero!

2010-06-01T09:17:00.003-04:00

Bruce Shriver writes:

There are only 5 days left until the deadline for submitting entries to the Sarcoma Heroes project. If you win the Team Sarcoma Everyday Heroes Competition, you get to target your prize to research on a specific type of sarcoma. All it takes is a little bit of inspiring writing. Here is some information from the project announcement: "Everyone who has dealt with sarcoma knows a hero or two. Heroes support, encourage and inspire us in extraordinary ways. Just when we need them most, they are there. They challenge us, comfort us, and give us hope.

The Team Sarcoma Everyday Heroes competition invites you to tell us about your hero. Entries will be published at the Team Sarcoma website, and three winning submissions will be chosen. A donation will be made to sarcoma research in honor of each winner’s hero, and each winner will choose which type of research their prize will fund. Please spread the word about this competition within the sarcoma community. We would love to read stories about heroes all over the world. The deadline for submissions is June 1, and everyone who has been touched by sarcoma is invited to participate.

Visit the Team Sarcoma website and click on “Tell us about your hero!”

A survivor shares:

2010-05-21T09:11:00.005-04:00

Many of you may not know, but I myself am a Sarcoma survivor. 10 years ago, I was diagnosed with Osteosarcoma. I was treated by Dr. Staddon and decided to work in Oncology.

One of the things that I remember from being sick was how important food and nutrition was. I did and still do, compare chemotherapy to being pregnant. At times, I had cravings for the strangest foods. I remember always going for the foods with the strongest flavors. I also went for a lot of salty foods, which actually was beneficial because it made me thirsty and in turn, I would drink more. I also found that cold things were easier to drink, especially when my mouth was sore. I drank Slurpees, ate water ice and loved milkshakes.

Try to avoid the foods you love or those "comfort" foods during the times when you feel the sickest. Even to this day, I am very hesitant about orange juice, which I used to loved. I drank it and it made me feel so sick so I avoid it, even now!

-Jill

Jill Wawrzynek RN OCN
Pennsylvania Oncology -Hematology Associates
* Survivor's Day June 3rd 5-7

What do you mean mom didn't like the foot bath?

2010-05-10T12:49:00.004-04:00

Nothing says I love you more than a home cooked meal with cancer fighting properties! Check out Joan Karnell Cancer Center's suggested recipes. No Mother's day flops here, just remember to clean up the kitchen when you are through!

PS: No Sarcoma Support Group this month due to Survivor's Day 4/3! Register Today!

Dining “Al Fresco” This Summer - Summer fun tips by Diana Fischmann, nutrition intern at Joan Karnell Cancer Center

2010-04-29T16:26:00.006-04:00

Eating a meal outside is such a fun summer luxury. With the right planning, it can be both easy and safe!

Think ahead, be prepared – make sure you pack all the essentials, including something to sit on (a blanket or folding chairs), paper towels, garbage bags.

Don’t forget to wash your hands - Keep some antibacterial hand gel with your picnic supplies, so if you aren’t close to running water you can still have clean hands.

Keep perishable foods cold – Keeping foods at their proper temperatures is important for both good food safety practice, and for your own enjoyment. Use a cooler with ice or freezer packs to keep food cool until you eat it. Remember, food should never be left out for more than 2 hours at a time, or 4 hours total.

Sun Safety - Remember, although a great way to get in your daily Vitamin D, the sun can be strong. Pack an umbrella, sun screen, and sunglasses to avoid getting burned.

Go green - Instead of Styrofoam plates and utensils, use reusable dishes. Heavy plastic plates and cups can be washed and re-used, or buy an inexpensive set of non-breakable dishes.

Drink! – Lots of water that is. Iced green tea and 100% fruit juice are other great picnic-appropriate options for staying hydrated.

*adapted from WFM's Guide to Summer Food on the Go.

S stands for Sarcoma and....

2010-04-21T11:36:00.016-04:00

National Survivors Day!

Come Celebrate Life.

When: Thursday, June 3, 2010

Time: Registration starts at 5:00pm. Program will begin at: 6:00-7:30 pm.

Where: Elm Garden at Pennsylvania Hospital -800 Spruce St. Phila, PA 19106

Special Guest Speaker: Mark Herlich. Mark is a Boston College linebacker, First Team All American ACC Defensive Player of the year and a cancer survivor.

Special Honoree: Helen Grosky, MSS, LSW. We will be honoring Helen in appreciation for her 25 years of service to Pennsylvania Hospital

To register for Survivors Day, call 1-800-789-PENN by May 27th, 2010.

The celebration will take place rain or shine. Hope to see you there!

A star is born!

2010-04-15T14:16:00.004-04:00

Follow the link to read Diet Targets Chronic Diseases featuring our own Debra DeMille, MS RD CSO, Nutrition Counselor at Joan Karnell Cancer Center.

PS: Don't forget Sarcoma Support Meeting is this Wednesday 4/21 its not too late register!!

Don't Forget!

2010-04-02T12:24:00.003-04:00

Hey Everybody,

Just a reminder that Sarcoma Support is coming up soon!

April 21st from 5-7pm

Hope to see you there!

Spring has sprung! No excuses now, so get out your sneakers!!!

2010-03-25T10:21:00.005-04:00

July 17th-25th is International Sarcoma Awareness Week

ISAW is an internationally coordinated set of events to raise awareness of sarcoma and raise funds to support sarcoma research, clinical trials, and patient and family services.
Last year Joan Karnell Cancer Center brought attention to Sarcoma at our National Cancer Survivor’s Day event by selling Team Sarcoma shirts that were hand designed by our staff and providing survivors with an opportunity to learn more about Sarcoma as well as sign up for the Peter Skelton Research Foundation run/walk/bike race. We are looking forward to coordinating our efforts with the Peter Skelton Research Foundation at their walk/bike race. Our team enjoyed the camaraderie last year and we are hoping for even more participants at this fun event.

Team Sarcoma 2010

This years event will be held Sunday, July 18, 2010 at RiverWinds. Look for more information and registration in early April!

Mark your Calendars!

2010-03-18T13:44:00.003-04:00

Sarcoma Support Group at Joan Karnell Cancer Center
When: April 21st ; 5-7pm (dinner provided)
Topic: Connecting with Others

This will be a more casual meeting and a time for everyone to meet and share their experiences with sarcoma. I hope to see you there!

Check your email or mailboxes for more information.

Sarcoma 101: What is sarcoma and what steps are we taking to treat it

2010-03-12T14:03:00.001-05:00

Last month was the return of our Sarcoma Support Group and what better way to start than with a guest lecturer, Dr. Staddon! Dr. Staddon provided the group with a detailed review of the various types of sarcoma, how they receive their name, and how they are treated and why treatments are different for each type of sarcoma. He also discussed the various clinical trials available for treating Sarcoma. He encouraged the group to investigate our various supportive services, before taking a few questions. It was very informative but also patient friendly. I have heard from a few people that they have thought of some questions since the group. Well, send them in we would love to hear them!

For More information about Sarcoma visit:

http://www.pennmedicine.org/pahosp/cancer/programs/sarcoma/

*Clear your calendar, Sarcoma Support Group meets the 3rd Wednesday of every month!