Tuesday, July 22, 2014

Elixir Fund Registry- A Patient / Caregivers Wish List

Just about four years ago at a Mercer County Cancer Coalition (now called the Hunterdon/Mercer Chronic Disease Coalitio) meeting I meeting  Meg McQuarrie from the Elixir Fund.

The Elixir Fund "provides comfort and support to cancer patients and their caregivers. "Their goal is to reduce the stress of treatment and provide support to patients and their caregivers so they can take a break from cancer. They get their inspiration from the cancer journey of Meg's brother, Kevin.

Yesterday, Meg and I met to discuss the latest project of the Fund- the Elixir Fund Registry. This project, similar to a bridal registry, is a way for family and friends to provide support ( emotional and physical) to their loved ones who are in treatment as well as their caregivers. Patients and caregivers can make a wish list for things they would love to have or things they would like to do to make their treatment time easier. The items on the list are varied from a  massage, to meals delivered to a patients home, help with putting on makeup, transportation to appointments, yoga classes or it can be a custom wish. Many local businesses have agreed to help with providing the services. The registry will be online and initially will  involve cancer patients/ caregivers who reside in NJ.

The Elixir Fund Registry is ready to be tested and the Fund is looking for people who have experience as a cancer patient, caregiver or health care provider ( such as a nurse or social worker) to test out the site and provide feedback to the Fund so they can insure that the program meets the needs of cancer patients and caregivers. I am so happy to see a patients centered approach to designing the program. Program testing is supported by Eli Lilly.

Meg allowed me to do a test run of the Registry and it is easy to set up and use.

Please contact Meg by calling 800-494-9228 or e-mailing her at  meg@elixirfund.org

Every Day is a Blessing!

Monday, July 7, 2014

For Women like Shari

Many people ask me why I spend so much time advocating for ovarian cancer awareness and funds for research. I'm disease free now. Why don't I just get on with my life.  I learned of another reason why last night.

I first met Shari who was also diagnosed with ovarian cancer and her husband Don at a Kaleidoscope of Hope Fundraiser about 5 years ago. My gyn-onc introduced us. We clicked right away and I learned about The Teal Tea Foundation of which she was president. She was in her forties at the time and I was in my early 50's. Other ovarian cancer events and activities kept us in touch.

When I moved to Hightstown, two towns over from where she lived,  we e-mailed each other and attended a few One Force Meetings and Teal Tea Foundation meetings together. In 2013, I sat at her table at the Teal Tea, which is run annually by the Teal Tea Foundation . Another time she ran a special fundraiser for the Teal Tea at the Alex & Ani store in Princeton and I had a chance to meet her two daughters.

In 2013, the lunches started. First it was at the Americana Diner and then we switched to a tiny restaurant in Cranbury called Molto Bene. Molto Bene let us sit there for hours chatting. Sure we talked "business" - my blog and her role at the Teal Tea Foundation. We lamented that fact that there wasn't a screening test for ovarian cancer and that so many research dollars were going to breast cancer research and not enough to ovarian cancer research. And we talked clinical trials that were available in the NY/NJ/PA area. But we talked about so many different things too.

Shari was a pasty chef and over lunch she told me about the classes she taught and also explained to me the correct way to do some common kitchen procedures like separating the yolk from the white part of the egg. What a laugh we had when I told her I needed to be in her class because I didn't follow her advice and dropped egg shell in my batter filled mixer.

We talked about our families- her two wonderful daughters and my children and grandchildren. I spoke about how difficult it is having children and grandchildren living so far away. And we talked about the colleges her oldest daughter might be interested in visiting.

You see Shari was so much more than just another woman with ovarian cancer she was my friend.

I am very sad that Shari and I will no longer be doing lunches. She passed away on July 6th.

Shari is my reason for continuing to raise awareness and funds for research. I will do it to honor Shari. Please keep Shari and her husband Don and two daughters in your prayers.

Every Day is a Blessing

Monday, June 30, 2014

Sharing my story and thoughts targeted therapies - Inside New Jersey

I was interviewed this spring regarding my experience as a participant in a tumor genomic analysis trial that I took part in last year. The interview was part of an article printed in the "Inside New Jersey" magazine. The title of the article was The Cancer Conundrum: Cases continue to increase, but Treatments and Prognosis are improving. I hope you will take the time to read about the wonderful cancer research taking place in my state. 

Every Day is a Blessing!

Wednesday, June 25, 2014

Ovarian Cancer Research at the Cancer Survivorship Research Conference- Part 4

The focus of this conference was survivorship but I did find two posters that dealt with ovarian cancer survivorship in particular.

Impact of Chemotherapy-Induced Neuropathy on Quality of Life Among Ovarian Cancer Survivors: Results from the Population-Based Profiles Registry

This study was done in the Netherlands.  I had the opportunity to speak directly to Lonneke van de Poll-Franse, PhD one of the researchers . She told me that the number of women diagnosed with ovarian cancer in the Netherlands was 800 just slightly more than the number diagnosed each year in New Jersey. I thanked her for doing research on a subject so important to ovarian cancer survivors. The conclusion of the study as reported on the poster was that “Neuropathy symptoms were experienced by 51% of women with ovarian cancer who receive chemotherapy even up to 12 years after the end of treatment and seriously affect their health related quality of life.”

The second study, done in the United States is an ongoing GOG study. The GOG group is now part of NRG Oncology.

Baseline Characteristics of Ovarian Cancer Survivors Enrolled in a Lifestyle Intervention Trial: Lives Study

The LIVES study  is recruiting women with stage II –IV ovarian cancer from 230 GOG clinics. The study has recruited 20% of its goal . Women were randomized to the lifestyle intervention group or the control group.  In the lifestyle group the womenwill receive information about healthy lifestyle and nutrition and is delivered via the internet using a special interactive platform. More information can be found at http://ovarianlives.org/

Every Day is a Blessing!

Tuesday, June 24, 2014

It’s All About the Guidelines - Cancer Survivorship Research Conference Part 3

One of the most informative plenary sessions was titled Guidelines/ Implementing Survivorship Care.  With the number of cancer survivors estimated to be 14 million  by the ACS the need to have guidelines for implementing survivorship care plans is important. There are four main guidelines each with a different audience.

LiveSTRONG recommends a process for care called Essential Elements which can be used by everyone. http://www.livestrong.org/pdfs/3-0/Essential-Elements-Definitions_Recommendations

NCCN guidelines cover:
Anxiety and Depression
Cognitive Function
 Immunizations and Infections
Sexual Function (female/male)
Sleep Disorders  
This guideline is written for the healthcare professional so a link for patients is unavailable.

ASCO published the first of its Survivorship Guidelines in April of this year. They focus on Anxiety and Depression, Neuropathy, Fatigue and Fertility Preservation and are meant for healthcare providers. They can be found at http://www.asco.org/guidelines/survivorship

The audience for the ACS guidelines is the primary care physician. The first guideline is for prostate cancer can be found at http://www.cancer.org/cancer/news/news/longterm-care-guidelines-for-prostate-cancer-survivors . Additional guidelines will be developed for breast, colon, lung, cervical , ovarian , endometrial , uterine, head and neck and  melanoma.

After learning about these guidelines we heard a discussion of these plans by Julia Rowland, NCI and Doctors Ganz, Wender and Farber. They raised points about the challenges of implementing survivorship plans, the need to train PCPs regarding survivorship issues and the need for evidence based research to show whether or not patients with survivorship plans do in fact have better outcomes.

Every Day is a Blessing!

Monday, June 23, 2014

Sessions Older Cancer Survivors and Caregivers – Cancer Survivorship Research Conference Part 2

There were a number of concurrent sessions taking place at the Cancer Survivorship Research Conference so it was difficult for me to decide which ones to attend in person. I will share with you information from the Improving Health and Health care  of Older Americans and Caring for the Caregivers which I found most interesting. .

Improving Health and Healthcare of Older Americans

In this session I learned from Heidi Klein, MD that older Americans ( >65 years of age) was the largest group ( 53%) of cancer survivors. But they are also the group to which we know very little about.  Why? Older adults are underrepresented in clinical trials because many times the age group is ineligible due to the way many trial protocols are written. Currently,  researchers are unsure if the standard of care will apply for those >65 years of age. There is a relatively young specialty called Geriatric Oncology and a group specifically doing research in this area called the Cancer and Aging Research Group.

Dr Supriya Mohile spoke about using the Geriatric Assessment to aid in cancer treatment decision making and to predict which patients will experience acute toxicity of chemotherapy . The geriatric assessment includes functionality, physical performance, cognition, nutrition, social support , etc.  Dr Mohile stated that patients with cancer have had a higher prevalence of geriatric issues. There has been very little research on survivorship issues with the older adult. They do know that with chemotherapy older adults have more neuropathy which leads to more falls.

Dr. Ed McAuley spoke about physical activity interventions and that the median age of those diagnosed with cancer is 65 years. He also stated that only 10% of those 65 years of age and over are meeting physical activity guidelines. Many believe walking is enough but strength training is important too.  Physical activity also has an impact on cardiovascular function. In a study of breast cancer patients, researchers found that the more physical activity patients undertook the less fatigue the patients experienced and indirectly the less depression the patients felt.

Albert Sui , MD explained that longevity is increasing due to better public health, less smoking and cleaner water. With the longevity though come and increase in chronic conditions which cancer patients have to deal with. It was stated repeatedly that doctors need to consider comorbitity issues when treating older cancer patients. 

Caring for the Caregiver

This session began with a presentation by Sharon Manne, PhD discussing Coupled Focused Psychological Interventions for Cancer Patients. Cancer is a family and couple stressor. Her work compared support group interventions for couples( breast cancer dx)  versus an enhanced couple focus intervention. In this study, there was less work absenteeism (one outcome of the study) by the partner in the enhanced couple focused group. They also found the higher the stage at diagnosis the higher the spouse/ partner stress. In a study of prostate cancer patient/ couples, researchers found that the more the patient held back from discussing issues with their partner the lower levels of well-being the partner felt.  

Allison Applebaum, PhD from the Center for the Study of Cancer Caregivers at Memorial Sloan Kettering explained that cancer caregivers are also cancer survivors (NCI definition). Caregivers are at agreater risk for distress and have anxiety regarding recurrences even up to 5 years later so it is important that caregivers learn to manage their stress.

Patricia Griffiths, PhD a gerontologist  spoke about Caregiving Dyads. There is currently a dementia home tele-health model program used by the VA. Programs like this can be modified to reflect survivorship concerns and expanded to Google chats ( which I learned are HIPAA compliant).

Next up post - Survivorship Guidelines.

Dee Every Day is a Blessing!