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. 

Dee
Every Day is a Blessing!

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/

Dee

Every Day is a Blessing!

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

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

NCCN guidelines cover:

Anxiety and Depression

Cognitive Function

 Exercise

Fatigue

 Immunizations and Infections

Pain

Sexual Function (female/male)

Sleep Disorders  

This guideline is written for the healthcare professional so a link for patients is unavailable.

ASCO

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

ACS

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.

Dee

Every Day is a Blessing!

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!