The Future of Clinical Trials is Now

triage-cancer-blog-future-of-clinical-trialsTriage Cancer believes that everyone should have access to quality cancer care. Sometimes, that care comes in the form of a clinical trial. We have a number of resources on clinical trials, but wanted to share with you a newer resource from one of our partners, that might be helpful for you.

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One of the earliest clinical trials can be dated as far back as the famous 1747 scurvy study conducted by James Lind. Almost 200 years later, in 1946, the first randomized controlled trial occurred on streptomycin, an antibiotic we continue to use today. Over time, technology has advanced but many aspects of running a clinical trial have remained the same, until now.

Science 37 has introduced a new model and approach to running clinical trials by combining technology with telemedicine. Participants in a Science 37 clinical trial can join, receive study medications, and participate from the comfort of their home, no matter where the study is being conducted. The goal is to allow participants to join clinical research from home, and reduce the pain of travel or the inability to participate due a patient’s geographic location. For current cancer research opportunities that are being conducted in this way, please visit https://www.science37.com/participants.

Here are some potential scenarios to illustrate the differences between a Science 37 clinical trial and a traditional clinical trial:

Science 37 Clinical Trial                                             Traditional Clinical Trial

1. Initial Search & Signing Up

Jane is newly diagnosed and searches the internet to learn more about her condition. She lands on a virtual trial site.

 

Jane is newly diagnosed and searches the internet to learn more about her condition. She lands on an academic site’s research study page. The trial site is a 72 mile round trip from Jane’s home.

2. Being Contacted

Jane signs up online to receive more information. A study coordinator reaches out to her the following day.

 

Jane calls the site & is scheduled for a screening clinic visit.

3. Getting Screened

Jane is screened by phone to determine eligibility.  She answers questions about her condition.

 

Jane drives to the clinic site, checks in and waits to see the study staff who screen her to determine eligibility.  She answers questions about her condition.

4. Giving Consent

Upon confirming eligibility, Jane is given access to a secure website portal where she can review electronic informed consent documents. She takes time to review them while at home and discusses them with her family. She later contacts the research coordinator to complete the virtual informed consent process via phone & video teleconference. The study coordinator and investigator ensure that she understands the study & is willing to volunteer. Jane was able to schedule her virtual consent process around her busy work schedule.

 

Upon confirming eligibility, Jane is given the informed consent documents to review.  She decides to take them home so that she has more time to read them and discuss them with her family. She later makes a follow-up visit to return to the clinic where she undergoes the informed consent process. A study coordinator and investigator ensure that she understands the study & is willing to volunteer. Jane had to take time off from work to return to the clinic to complete the informed consent process.

 

5. Participation and Follow-Up Visits

Jane completes the study baseline procedures at home. These include getting vitals signs and blood work by a mobile nurse. Study medications are shipped to her home and her study questionnaires are completed through the NORA app on the study iPhone.

Jane receives a new shipment of study medications every month to her home and completes monthly study questionnaires on NORA.

 

Jane returns to the research clinic to complete the study baseline procedures. These include getting vitals signs and blood work by the clinic staff. She completes a paper questionnaire and is given her one month supply of study medication to take home. She is scheduled to return to the clinic every month to get a refill of study medications and to complete the study questionnaires. She has to check with her work to make sure she will be able to take time off for the next study visits.

6. Reporting Side Effects

Jane wants to report noticing a new rash so she calls her study coordinator using NORA on her study iPhone. She is advised to take a photo of the rash through NORA. The study investigator is notified and within a few hours, Jane is given instructions on how to manage the rash.

 

 

 

Jane wants to report noticing a new rash so she calls her study coordinator in the clinic. She describes the rash over the phone to the study coordinator who states that they will need to contact the investigator and call Jane back. After speaking to the investigator, the study coordinator calls Jane and instructs her to return to the research clinic the next day for evaluation. Jane is concerned and must ask her boss to take more time off from work to go to the clinic.

6. Study End

Jane is contacted by the study coordinator to give her instructions about completing the study. She completes some questionnaires on NORA, and ships back the remaining study medications and study iPhone. Jane joins a community of others who share her condition so that she can receive updates on the study and learn about future trials.

 

Jane takes a day off from work so that she can return to the research clinic for her last visit. She is accustomed to the routine of driving to the clinic, checking in at reception, and waiting to be evaluated by the research staff. During the visit, she complete some questionnaires and returns the remaining study medications to the staff.

Volunteer Opportunity: LIVESTRONG

livestrong-logoHave you or a loved one been impacted by cancer? Are you interested in volunteering for a mission-based organization specifically focused on the needs of those affected by cancer? Are you interested in making a difference in your local cancer community? 
 
LIVESTRONG means doing the best and the most for those affected by cancer, now! Our vision is that people living with cancer have everything they need throughout their journey. We provide individuals and communities with best-in-class programs and services that meaningfully improve their cancer experience. LIVESTRONG is about the person, not the disease.
 
With this in mind, the LIVESTRONG Leaders volunteer their time acting as community representatives to help LIVESTRONG strengthen our mission, amplify our message and expand our movement of supporters in local communities and online in three distinct ways: providing education and raising awareness around our programs and services, participating in LIVESTRONG supported and sanctioned legislative advocacy activities and taking part in Team LIVESTRONG and grassroots fundraising efforts. 
 
As ambassadors and boots on the ground in their local communities, LIVESTRONG Leaders speak to our mission, connect individuals to our services and advocate for change. Listen as some of our Leaders share their experience of participating in this important role. 
 
The LIVESTRONG Leader Program is a key engagement strategy for LIVESTRONG at the community level to deploy individuals across the globe in support of our mission and now is your chance to get involved! Applications for the 2017 program are now open here. The application will close on Friday, November 18. 

A New Resource for Those Considering a Clinical Trial: About Clinical Trials (ACT)

triage-cancer-blog-act

About Clinical Trials (ACT) is a collaboration between the American Cancer Society and Genentech.  Its aim is to increase patient interest in and awareness of cancer clinical trials through educational patient resources.  The idea is to empower people to understand cancer clinical trials and discuss this option with their doctors and loved ones.

Visit http://triagecancer.org/clinical-trials to learn more about clinical trials and ACT, including:

  • Six informational videos
    • Why Should I Consider a Clinical Trial?
    • How Will I Know if a Trial Is Right For Me?
    • How Should I Prepare for Discussions With My Doctor?
    • What Standards Are in Place to Safeguard Trial Participants?
    • What Is Informed Consent?
    • Where Can I Turn for Information and Support?
  • A patient discussion guide
  • Responses to common misconceptions about cancer clinical trials
  • List of helpful resources

If you prefer to talk with someone by phone about your clinical trials options, you can call the American Cancer Society at 1-800-227-2345 to request an ACT patient kit, which contains and educational brochure with a DVD and a USB drive.

Considering a clinical trial can be an overwhelming process.  Take advantage of any and all the resources out there.

For more information about clinical trials, read the other blogs in this series: http://triagecancer.org/blog/category/clinical-trials.

Addressing Mesothelioma from a Medical Perspective

Today’s guest blog comes from our new partners at the Mesothelioma Applied Research Foundation.The Mesothelioma Applied Research Foundation

The word, Mesothelioma (pronounced mez-uh-thee-lee-oh-muh), is often much better known than the illness it represents.

The legal issues surrounding this cancer make mesothelioma, the most expensive keyword on Google (while most keywords cost pennies, the keyword mesothelioma can cost over $300 per click). Mesothelioma, in most cases, can be traced back to exposure to asbestos. Therefore, there are legal avenues for patients to seek compensation.

Mesothelioma is a cancer that most often affects the lining of the lung or abdomen; it has no cure and treatment options for patients are few. Prognosis is generally considered poor, at less than 10% survival at five years post diagnosis. The vast majority of mesotheliomas are associated with exposure to asbestos, with the latency between exposure and disease development ranging between 20-50 years.

Diagnosis of mesothelioma has always been difficult, mostly because initially its symptoms are quite general (shortness of breath, general malaise, pleural effusion, gastro-intestinal problems). In addition, because of the long latency between exposure to asbestos and disease development, patients and their doctors aren’t led to a diagnosis quickly, thereby wasting valuable time that could have been used to begin treatment.

When the Mesothelioma Applied Research Foundation (Meso Foundation) began its operations in 1999, mesothelioma was a cancer largely ignored by the scientific community. At that time, virtually no research funding was available for it, and consequently, patients found themselves with little hope and sadly, very little time to live. What’s more, patients, as well as physicians, lacked updated and comprehensive treatment information about mesothelioma.

This is where the Meso Foundation comes into play. The Meso Foundation is a nonprofit organization dedicated to eradicating mesothelioma and ending the suffering caused by this aggressive and incurable cancer. It does so by funding peer-reviewed research, by providing education and support to patients and their family members, and by advocating Congress for an increased federal investment into mesothelioma research. To date, the organization has allocated more than $9.4 million of its own funds and has directed more than $13 million of Department of Defense (DoD) funding toward important mesothelioma research.

For years, mesothelioma has been known as a cancer that strikes predominantly older males because of their past occupational exposures. Most recently, however, the Meso Foundation has found that more than ever before men and women in their 20s, 30s, and 40s are contacting the Foundation for help.

To better define this patient population and to spur advances in mesothelioma clinical research and treatment a registry bill has been introduced in congress. HR 3284 enjoys bipartisan support and, if passed, we anticipate it will lead to unprecedented advances in mesothelioma science.

Despite the poor prognosis, patients today who are able to obtain a quick and accurate diagnosis and expert guidance to treatment options (like state-of-the-art clinical trials) can live long and fulfilling lives, with good quality of life. The Meso Foundation can help patients navigate the best path through most effective mesothelioma treatment options.

For more information about the Meso Foundation or to obtain help, patients and their families are encouraged to visit www.curemeso.org. Please note: the Meso Foundation does not provide legal referrals.

Cancer Survivorship Care Plans

Triage Cancer and the California Dialogue on Cancer (CDOC), have partnered together in the development of new tools to help increase the use of cancer survivorship care plans. These new tools include:

  • Cancer Survivorship Care Plans: A Toolkit for Health Care Professionals
  • Fact Sheets for Survivors & Caregivers (English, Spanish, Chinese, & Tagalog)

CDOC is a state cancer coalition administered by the California Department of Public CDOC Survivorship Care PlansHealth’s Comprehensive Cancer Control Program. CDOC includes members from state and local governments; private and nonprofit organizations; health, medical, and business communities; academic institutions; researchers; cancer survivors; caregivers; and advocates. One of CDOC’s responsibilities is to develop California’s Comprehensive Cancer Control Plan to reduce the cancer burden in our state.

One of the specified survivorship goals in California’s Cancer Control Plan is to improve survivorship care by increasing the use of survivorship care plans. Triage Cancer led a Survivorship Care Plan Advisory Group, which included doctors, public health educators, researchers, social workers, advocates, caregivers, survivors from throughout the state of California to develop a toolkit and fact sheets to increase the use of survivorship care plans in California.

What is a Cancer Survivorship Care Plan?

A cancer survivorship care plan is a written document this is a valuable tool for patients and their health care teams to monitor and manage a patient’s ongoing physical and emotional health. It summarizes the treatment that a patient has received, describes follow up care a patient should receive, and helps patients navigate other post-treatment needs.

The institute of Medicine suggested that the following information should be included in an effective cancer survivorship care plan:

  • Treatment Summary: details of your cancer diagnosis, contact information for your previous health care providers, and any treatments received
  • Follow-Up Care Plan: specific recommendations for ongoing care, managing side effects, signs of recurrence, screenings, nutrition, exercise, chemoprevention, etc
  • Psychosocial Issues: relationships, parenting, sexuality and intimacy, body image, genetic counseling, etc.
  • Practical Issues: insurance, employment, education, finances, etc.
  • Resources & Referrals: cancer-related organizations, follow-up care providers, support groups, etc.

What is Cancer Survivorship?

The National Cancer Institute defines cancer survivorship from the point of diagnosis, throughout life. There are approximately 14.5 million cancer survivors in the United States. Cancer survivorship issues are really any issues that come up for patients and caregivers as a result of a cancer diagnosis. Those issues could be physical, emotional, and practical issues.

Cancer Survivorship Guidelines

Numerous entities in the cancer community have developed guidelines on survivorship care, such as ASCO, the American Cancer Society, NCCN. and the Children’s Oncology Group. In 2012, the Commission on Cancer released accreditation standards, which require cancer centers to provide survivorship care plans to all of their eligible patients by January 1, 2019.

Cancer Survivorship Care Plans: A Toolkit for Health Care Professionals

In order to help cancer centers provide survivorship care plans, Triage Cancer and CDOC developed a toolkit that includes these topics:

  • Introduction to Cancer Survivorship & Survivorship Care Plans
  • Elements of an Effective Survivorship Care Plan
  • Survivorship & Survivorship Care Plan Guidelines
  • Survivorship Care Plan Templates
  • Implementing Survivorship Care Plans
  • Survivorship Care Plan Implementation Challenges & Practices
  • A Call to Action
  • Survivorship Care Plan Resources

Cancer Survivorship Care Plan Fact Sheets

In addition to the Toolkit, Triage Cancer and CDOC also created fact sheets about cancer survivorship care plans, to help patients and caregivers understand what they are and empower them to talk with their health care teams about this resource.

Click here to download a free copy of the Toolkit and fact sheets.

Click here to watch a video about cancer survivorship care plans.

Calling All Advocates: Insurance for Fertility Preservation

By Alice Crisi

For years, California advocates have struggled to secure fertility preservation insurance coverage for cancer patients. A 2013 bill even made its way to the Governor’s desk only to be vetoed because of the one penny per member per month it would cost to implement this important insurance reform.

California only requires insurers OFFER infertility coverage as a potential benefit, but it does not include In Vitro Fertilization (IVF), nor does this mandate require employers provide infertility coverage to their employees. If you read the aforementioned sentence and thought “That sounds pointless,” then you would have the same thought as most fertility advocates.

The mandate itself set up a loophole in the system for insurers to tell enrollees diagnosed with cancer, “Infertility services are not a covered benefit and fertility preservation is an infertility service.” The bottom line is fertility preservation historically was lumped in with traditional infertility services rather than being considered a part of cancer care.

And the story is still shared over and over and over again. “I checked on your insurance and infertility/fertility preservation isn’t a covered benefit.” Some physicians preemptively tell their patients, “Insurance doesn’t cover it,” further perpetuating the idea of lack of coverage.

But that isn’t 100% true.

We now know some companies cover fertility preservation for all their employees in California. We also know from informal surveys and patient feedback that some insurers cover fertility preservation as part of the standard of care for cancer.

But, due to mistaken beliefs about coverage, many patients were not asking their Triage Cancer Blog - Independent Medical Review Fertilityphysicians for help with submission of prior-authorizations for coverage of fertility preservation treatment, or not appealing when the prior-authorization is denied. Records show only one patient has ever utilized California’s Independent Medical Review (IMR) process for fertility preservation. That patient, asked the California Department of Managed HealthCare (DMHC), the agency that oversees 25 million plans in California, to overturn a decision to deny her embryo freezing procedure before breast cancer treatment.

And she won.

She won.

You got that, right?

She Won.

The DMHC agreed with her, her physicians, the American Society of Reproductive Medicine, the American Medical Association, and the American Society of Clinical Society, whom all state fertility preservation is standard treatment when diagnosed with cancer during reproductive years. She, as a newly diagnosed cancer patient, was granted the right to have her insurance cover her embryo freezing procedure prior to cancer treatment.

This is a clear path forward, underutilized by patients, advocates and physician offices. Armed with this information, patients can move forward and challenge the old notions.

In fact, 60% of individuals who use the IMR process have their insurance company’s denial overturned. Once a pattern ensues, the DMHC will regulate a formal change.

Our joint goal is to work with the DMHC to write a letter informing insurance companies they need to cover fertility preservation for patients diagnosed with cancer. But, we need more complaints filed in the system before that happens. We need every patient to ask their insurer for coverage and then file a request for an IMR, if their insurance company denies the treatment.

Here’s how it works:

  1. Your reproductive specialist’s billing manager will request a prior-authorization from your insurance company to cover your fertility preservation procedure. (Your insurance company may say yes!)
  2. If your insurance company denies the prior-authorization, you then file an expedited appeal through your insurance carrier (usually an online form through your own insurance company). Request an expedited review on account of your cancer diagnosis.
  3. If your insurance company upholds their original denial, you may then request an expedited IMR online through the DMHC (even if your plan advises you there are multiple levels of appeals). http://www.dmhc.ca.gov/FileaComplaint/IndependentMedicalReviewComplaintForm.aspx#.VspUlfkrKc0
  4. DMHC is required by federal law to address your request for fertility preservation insurance coverage within 30 days, but with expedited cases to be addressed within one week.

To better be able to help patients, oncologists and reproductive professionals (along with their billing personnel) may request an educational webinar via email acrisci@cryobank.com.

A great website to help you navigate the system is http://mypatientrights.org.

Check with www.OncofertilityUniversity.org for more information.

As the de-identified IMR cases will be publicly available on the DMHC website, eventually we will be able to see the cases and assess the outcome. But, if you’re comfortable, we would really benefit from you contacting us at info@fertileaction.org to let us know how the process worked for you. It would be helpful to know if you were able to get coverage right away, through the insurer’s appeals process or the IMR process. The more people use the system, the clearer it will be to regulators there is an issue they can and should address.

We’re so close to permanently changing this story in California, let’s solve this problem this year!

Creating a bridge of caring

CaringBridge Logo

CaringBridge was born online in 1997 after my friends JoAnn and Darrin had a premature baby named Brighid. That first website allowed Brighid’s family to communicate with loved ones by posting regular journal entries about their health journey. Family members and friends responded with messages of hope and encouragement. The site served as a bridge of caring between Brighid’s parents and their concerned loved ones. Indeed, it was not only a bridge but a lifeline.

Sadly, after a nine-day struggle, Brigid died. But despite her short life, she made a difference in the lives of millions of people around the world. The name CaringBridge grew organically out of the experience of “caring for Brighid.”

It was obvious to me that this online connection could help other families experiencing a life or health event to share what’s happening without the burden of having to call dozens of individuals to repeat the details. It allows families to focus their energies on what matters most.

CaringBridge was a personal-health social network, seven years before the arrival of Facebook. Since its beginnings, hundreds of thousands of individual CaringBridge sites have been activated, generating billions of site visits. Every day, CaringBridge brings together more than half a million people. It’s available to anyone, anywhere, at no cost.

On a daily basis, I hear how CaringBridge has impacted people’s lives. My own appreciation for the power of CaringBridge grew exponentially when I started sites for my 94-year-old grandma, Bessie, and for my mother, Bonnie, who was diagnosed with Stage IV breast cancer in 1998. In 2001, I reactivated my mother’s site when she was stricken with liver cancer, which took her life that year. Those intensely emotional firsthand experiences spurred me on even more.

Not a day goes by that I don’t feel blessed to know that the work I do brings comfort, love and strength to others in their hour of need. The overwhelming majority of users say CaringBridge made their health journey easier. I have learned how essential the power of community is to the healing process.

Sona Mehring is founder and CEO of the global nonprofit organization CaringBridge.org, based in Eagan, MN, and author of “Hope Conquers All.”

Pancreatic Cancer Deaths Surpass Breast Cancer; It’s Time to Wage Hope

By Julie Fleshman, JD, MBA

In early January, we learned that pancreatic cancer will take more lives than breast cancer this year.

The pancreatic cancer community expected this shift, but the news doesn’t come easy. Especially when the five-year survival rate is still in the single digits at only 8 percent.

Thanks to years of research and advocacy in the breast cancer community, patients have better treatments, earlier detection and screening tools and deaths from the disease are declining.

I’m proud of our country for rallying behind breast cancer. But I must admit, I have pink envy. I want people to see purple.

Purple is the global symbol for pancreatic cancer. A color that has become a battle cry for patients and families fighting one of the deadliest cancers.

In fact, by 2020 pancreatic cancer is expected to surpass colon cancer to become the second-leading cause of cancer-related deaths in the United States.

It’s a frightening statistic.

Unfortunately, it doesn’t surprise me.

Julie and Jim Fleshman in 1997, University of California, Santa Barbara graduation

Julie and Jim Fleshman in 1997, University of California, Santa Barbara graduation

My dad, Jim Fleshman, was diagnosed with pancreatic cancer in 1999. He was told he was going to die. Armed only with grief, my family got his affairs in order, and four short months later, I lost one of the most important people in my life. Dad was only 52 years old.

Since his death, strides have been made.

There is a growing pancreatic cancer scientific community, increasing pancreatic cancer clinical trials that could lead to new treatment options and information and resources for patients and families fighting this disease.

And I’ve witnessed the incredible generosity of people from around the country taking action, raising their voices, and giving their time and money. Even our government is leading the way with a renewed sense of urgency to tackle cancer with its moonshot approach.

But more must be done. We must double survival for pancreatic cancer by 2020.

Breast cancer advocates have paved the road for us and shown us what is possible. Because of them, I know our goals are not impossible.

It’s time for people to see purple, to get involved, to give generously and help rewrite the future of pancreatic cancer.

And I can only hope that someday people have purple envy.

In loving memory of my dad and the countless dads, moms, sisters, brothers, children and other loved ones lost to this disease or who are fighting it today, I Wage Hope.

Julie Fleshman, JD, MBA, is the president and CEO of the Pancreatic Cancer Action Network, a national nonprofit organization advancing research, supporting patients and creating hope for anyone facing pancreatic cancer. This blog originally appeared here.

Genetics – Ask the Expert

We are delighted to post this set of “Ask the Expert” questions from Sheila Solomon, MS, CGC is a Certified Genetic Counselor focusing in clinical cancer genetics for the past 15 years. In addition to her work as Sharsheret’s Program Coordinator, she is employed by GeneDx, Inc., a subsidiary of BioReference Laboratories.

Question 1: I’m HER2 positive, BRCA negative; does this affect my family members?

Answer 1: HER2 is a protein found in some breast tumor cells and is not inherited in families. The presence of the HER2 protein can help your healthcare providers provide the most effective breast cancer treatments.

Question 2: When I was diagnosed with breast cancer in 2006, I had the multi-site 3 panel testing which came back negative. My oncologist has asked if I want to do the new testing that tests for 9 different genes linked to breast cancer risk in families. Is it worth doing? Could this new testing have an impact for my children or other breast cancer risks for me?

Answer 2: I’m glad to hear that your oncologist is educated about the new technology using multi-gene panels which allow us to test for multiple genes in a single test. It may be worth meeting with a genetic counselor to review any updates to your family history since 2006, which can clarify which additional testing would be helpful for you.

Question 3: I have Ashkenazi Jewish ancestry on both my mother’s side and my father’s side of the family. My father’s mother died of breast cancer in her mid-60s and there is no ovarian cancer in any woman in the family. My mother’s family was murdered by the Nazis so I do not have health information about them. So I have been wondering, should I get tested for a genetic predisposition for breast and ovarian cancer?

Answer 3: People with Ashkenazi Jewish ancestry have a 1 in 40 chance of carrying a BRCA1 or BRCA2 mutation, which would increase breast cancer and ovarian cancer risks, among other cancers. Thank you for sharing the family history of breast cancer. It is interesting you note that it is on your father’s side of the family. Many people have thought that cancer on the father’s side of the family does not matter, when, in fact, it really does! Men can inherit and pass on BRCA1 and BRCA2 mutation just as equally as women can. So this is still important information. Generally speaking, the younger the diagnosis of breast cancer in the family, the more likely the cancer is hereditary/inherited. With the diagnosis in your grandmother’s mid-60s, it is difficult to say whether her cancer was caused by a BRCA1 or BRCA2 mutation, or if it occurred by chance. It would be worth discussing your personal and family history with a genetic counselor.

Question 4: I am BRCA 2 positive and had a double mastectomy and reconstruction, and the ovaries removed. I have 3 sons, oldest 31 and youngest 26, and I would like them to be tested. Where can they go?

Answer 4: I applaud you and your desire to arm your sons with the gift of medical knowledge! You certainly have taken many steps to reduce your own cancer risks with the genetic information you received and I imagine you would like your sons to know it, too. One of the best ways to begin the conversation is to share your results with them. Talk with them about a meeting called genetic counseling. Genetic counselors are trained healthcare providers who will discuss options with your sons and help to coordinate their testing, should they choose to proceed with the testing. Genetic counselors are located all over the country and world. You can find a local genetic counselor by visiting www.nsgc.org. If you or your sons have specific questions before they meet with the genetic counselor, Sharsheret is glad to be a resource to you and your family. Sharsheret offers Family Genetics Conference Calls, which offers a guided conversation between you and your family members, facilitated by Sharsheret’s genetic counselor to discuss your family’s BRCA genetics risk. You can schedule a call by contacting Sharsheret at 866.474.2774.

Question 5: I’m a 41 year old mom and wife to an amazing husband. I was diagnosed with breast cancer in April. As part of my diagnosis and treatment, I met with a genetic counselor and had genetic testing. I came back with positive for CHEK2. The original treatment plan had been to do 6 weeks of radiation. However, doing some research on my own, I’m pretty nervous about doing radiation, due to this gene. I’m curious if you have an opinion? Luckily, we saw the radiology oncologist this week and she agreed, and she intends to do more research before we proceed, too.

Answer 5: Thank you for sharing your story with me. I am so glad you have spoken with your genetic counselor and are arming yourself with as much knowledge as you can before making decisions. I cannot speak to your specific case and whether or not radiation is the right treatment, as each case is different and is based on number of factors. I recommend you explore this further with your doctor and treatment team. It sounds like your oncologist would be open to this conversation since she intends to do more research, too!

To speak with a member of our support team and get connected with Sharsheret’s genetics program, click here.

This post originally appeared on February 1, 2016, here.

The Gift of Music – Beyond the Concert

Written by Do It For The Love Foundation Outreach Director Julie Dalrymple with submissions from Stephanie Tuma, Lisa Toledo and Wesleigh Roeca. This blog originally appeared here.

Triage Cancer Blog - For The Love FoundationThat moment when the entire audience is in sync, singing along to a familiar tune, bouncing with the rhythm and basking in the collective energy . . . it’s a moment of escape, joy at its purest and for some, it’s magic.

It brings those confined to a wheelchair to their feet, eases the pain inflicted by countless chemo treatments, and energizes even the most weary of souls. But the healing power of music goes even further, providing profound inspiration to those who have watched their loved ones struggle. For a moment, together they outrun the diagnosis and celebrate life, fully engulfed in the experience. And once the concert has ended, often that is when the most profound effects are realized.

The Do It For The Love Foundation provides the opportunity for loved ones of those dealing with severe health challenges to offer support in a unique way by submitting a nomination for a live music experience. It’s a gift that speaks more than words.

“I realized that this experience helped more than just me,” wrote Stephanie, a 23-year old living with a rare and life-threatening genetic condition. “Often times we forget that being sick is hard but watching someone helplessly be sick is hard too. This provided an opportunity for my mother to say “help me” without speaking words. She reached out to the foundation to help her do something that made her feel good. It was one of the nicest things she could have done. By nominating me she was able to show me her love.”

The power of music transcends words and, as Stephanie experienced during her wish grant, it can provide a bridge during a difficult time. “Unspoken love is something that isn’t always apparent, but this whole experience spoke love in volumes.”

Triage Cancer Blog - Michael Franti“During that evening, I watched all these amazing positive things unfold before my eyes with two of my favorite people and afterwards all I could think about is how much I love my mom. We danced and high-fived and hugged our way through the evening leaving all the unspoken words float around us because in spite of all the obstacles life gives us, whether big or small, there’s one thing that keeps us all connected . . . music.”

Another magical moment happened just a few seats over at that same show. Sam has cerebral palsy, and uses a wheelchair for mobility. Despite his physical limitations, he’s always found great joy in listening to music and dancing. Sam’s aunt Lisa nominated him for a concert with Michael Franti and the experience was just as moving for her as it was for her nephew.

“Watching Sam smile, clap and sing was heartwarming, but the most astonishing surprise to all of us was that Sam stood on his feet the entire time Michael was playing!” said Lisa. “At one point Sam turned to me and said “I want to jump!” I, of course, burst into tears and then proceeded to aid him in bouncing around with the rest of the audience!”

Sam not only found inspiration through the music himself, but he also inspired his family Triage Cancer Blog - Sam For the Loveto believe in miracles: “If there is such a thing as a miracles made through music, I would say that night for Sam would count as one.”

It’s heartbreaking to find out that one of our wish grant recipients has lost his or her battle. Last summer, Do It For the Love granted a wish for Wendy, a vivacious and lovely woman living with stage IV colon cancer. She beamed from the stage during her wish grant, singing on stage with Michael Franti, as her proud son and daughter looked on.

“The emotions it now evokes are so powerful, they’re hard to convey, and my brother and I are beyond grateful to the Do It For The Love team for creating such a remarkable memory for us,” said Wendy’s daughter, Wesleigh. “As I held her hands, she smiled and sang and danced. She was so happy…as were we. Her cancer didn’t bear weight on her, or on us. Although our mom passed away in September, this memory exists forever, and we really did feel the healing power of music.”

The memory of these moments is the most sacred effect of these wish grant experiences. That reminder of a smile and a laugh endures long after the music stops.

An unspoken bond, a miracle, a memory – there’s an unquestionable power in the live music experience. Do It For the Love provides wish grants for those going through the greatest challenges of life. And while the smile on a recipient’s face is priceless, the stories from their loved ones add a depth that is often unexpected. That’s what’s so great about a genuine live music experience – it is always full of surprises.