Thursday, February 14, 2013
Home Office | Episode 2
See how to Pamper yourself and be stress-free! Arbonne helps!
Send me an email, ContactBeth@myarbonne.com and I will assist you get what is needed.
Hugs!
Beth
Wednesday, December 19, 2012
13 Facts that Men with Hereditary Cancer Risk Should Know
My father developed breast cancer in 1984 and passed away in 1989. It was discovered in 1996 after genetic testing, including his frozen tissue samples, that the BRCA2 genetic mutation existed in our family. It was passed down through our paternal side. Please read the following to protect yourselves!
13 Facts that Men with Hereditary Cancer Risk Should Know
We would like to call attention to an often forgotten group: men who have a BRCA mutation or a family history of hereditary cancer. Although men don’t get ovarian cancer and their risk for breast cancer is very low, we are learning more and more about how hereditary cancer risk affects them.
FORCE responded to the United States Preventive Services Task Force’s (USPSTF) preliminary guidelines that recommended against prostate cancer screening for all men. Based on emerging research, we encouraged the panel to revise the text to state that the guidelines did not apply to men with BRCA mutations. The USPSTF incorporated our suggestion into its final guidelines. Accomplishments like these remind us how important FORCE’s advocacy work is. Men with BRCA mutations are important cancer stakeholders. Our goal is to assure that they have a voice advocating for their concerns when government cancer policies are developed.
In keeping with our 13 Things theme and in honor of high-risk men, here are 13 facts men need to know about hereditary breast and ovarian cancer.
- Men with BRCA mutations have increased risk for breast and prostate cancer, and like women with mutations, their risk for pancreatic cancer and melanoma is also elevated. Men with BRCA2 mutations have greater risk than men with BRCA1 mutations.
- Although men with BRCA mutations have a greater cancer risk than men in the general population, their risk for cancer is lower than most women with a mutation.
- Because preliminary research suggests that hereditary prostate cancer tends to be a more aggressive form of the disease, the USPSTF advises that screening guidelines developed for men in the general population should not be applied to men with mutations.
- BRCA mutations have been found in people of every ethnicity, but not with the same frequency. About 1 in every 300 to 500 people carry a BRCA mutation. About 1 in 40 people of Ashkenazi Jewish descent have a mutation.
- Breast screening recommendations for men with a mutation include regular breast self exams and twice yearly clinical exams by a medical professional beginning at age 35. A baseline mammogram is recommended at age 40 and annual mammograms thereafter are advised, depending on the baseline results.
- Men with mutations or hereditary cancer in the family should discuss with their doctor the benefits, limitations, and risks of prostate screening using PSA and digital-rectal exam beginning at age 40.
- The international IMPACT study is looking at the benefit of PSA screening in men with and without BRCA mutations. Full results from this research will be available in 2020.
- BRCA mutations can be passed down equally from either parent to sons or daughters.
- When both parents have a BRCA2 mutation, their children may inherit a rare and deadly disease known as Fanconi Anemia. This is more common in people of Jewish descent. Couples concerned about this possibility should consult with a genetics expert.
- Couples who are concerned about passing a mutation to their children may want to speak with a fertility expert about in vitro fertilization and preimplantation genetic diagnosis that screens embryos for BRCA mutations.
- Early research on PARP inhibitors for treatment of prostate cancer has been promising. Currently, some open PARP inhibitor studies are enrolling men with advanced prostate cancer.
- Coverage for BRCA testing in men can vary depending on their insurance plan. A genetic counselor can help men determine if their insurance will cover testing.
- Men who are concerned that the cancer in their family may be hereditary should consult with a genetics expert before pursuing genetic testing. FORCE can provide information on locating genetics specialists. Genetics consultations are typically covered by insurance.
If you are a man with a BRCA mutation or hereditary cancer in your family, please complete our survey for high-risk men, read about our advocacy efforts on behalf of the men in our community, visit our expert-reviewed information section for men, and join our mailing list to stay updated on new information, research, and programs specific to men with BRCA mutations. Please consider participating in this telephone focus group research study for high risk men.
FORCE helped unite and organize the female hereditary cancer previvor and survivor populations to advocate for more resources; we need to do the same for the men in our community. If you have high-risk men in your life, please let them know about these resources. Please help us raise awareness, spread the word, and save lives by sharing this blog, and printing and sharing our “13 Things Men Need to Know” flier.
Tuesday, December 18, 2012
Tell Congress No Cutbacks on Cancer Funding!
Tell Congress to Stop Cuts to Breast and Ovarian Cancer Programs!
This week, lawmakers on Capitol Hill and the White House are negotiating a possible deal on federal spending cuts and tax increases scheduled to go into effect on January 2, 2013. If they fail to reach an agreement, across-the-board spending cuts will devastate federal funding for cancer research and early detection. These automatic cuts, called sequestration, will lead to decreases for discretionary programs—including almost $16.6 billion in healthcare related costs such as Medicare, research funding, education and public health programs. We must act to prevent funding cuts for these essential programs. Help us tell Congress that across-the-board cuts will decimate cancer programs and have minimal impact on the federal deficit.
Join FORCE, Ovarian Cancer National Alliance, Komen for the Cure and others in taking action. Share your story and tell your elected officials that cuts to breast and ovarian cancer funding will have an adverse impact on the nation’s ability to make progress in conquering these deadly diseases...
https://secure.info-komen.org/
http://capwiz.com/ovarian/
This week, lawmakers on Capitol Hill and the White House are negotiating a possible deal on federal spending cuts and tax increases scheduled to go into effect on January 2, 2013. If they fail to reach an agreement, across-the-board spending cuts will devastate federal funding for cancer research and early detection. These automatic cuts, called sequestration, will lead to decreases for discretionary programs—including almost $16.6 billion in healthcare related costs such as Medicare, research funding, education and public health programs. We must act to prevent funding cuts for these essential programs. Help us tell Congress that across-the-board cuts will decimate cancer programs and have minimal impact on the federal deficit.
Join FORCE, Ovarian Cancer National Alliance, Komen for the Cure and others in taking action. Share your story and tell your elected officials that cuts to breast and ovarian cancer funding will have an adverse impact on the nation’s ability to make progress in conquering these deadly diseases...
https://secure.info-komen.org/
http://capwiz.com/ovarian/
Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road | Thoughts from FORCE
Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road | Thoughts from FORCE:
'via Blog this'
'via Blog this'
Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road
This blog is a call to action! Please read on, and then post, blog, tweet, retweet, and share about this issue so that we can assure that hereditary cancer research continues!
The call for more research is a constant theme for all diseases including cancer, and sometimes it’s easy to get frustrated by the slow pace of progress. The multistep process from discovery to FDA approval is often long and doesn’t always end in success. But research is necessary to assure that new treatments work as well or better than current standard-of-care. For this to happen, studies must recruit enough people to prove that the agents work. This is particularly critical for research that focuses on a small specific population like people with a BRCA mutation.
PARP inhibitor research is a prime example. I first heard about PARP inhibitors at the 2005 ASCO annual meeting. In her plenary address on advances in hereditary cancer, Dr. Barbara Weber from the University of Pennsylvania mentioned targeted agents (PARP inhibitors) that were designed to exploit weaknesses of cancer cells in people with BRCA mutations. This was exciting news! I was hopeful that this could be the beginning of personalized therapy for people in our community. From that moment on, I vowed to do whatever it took to learn about, share with our community, and promote the studies to determine whether these drugs worked.
Early small clinical trials of PARP inhibitors were promising, but delays and road-blocks affected development of larger research studies. Some of the roadblocks had to do with study design; others involved dosing or side effects as researchers determined the most effective combinations of PARP inhibitors with other anticancer agents. Despite these issues, enthusiasm continues for the potential of these drugs in people with BRCA mutations. Yet, eight years later, there are still no FDA-approved PARP inhibitors and people are still dying of hereditary cancers!
FORCE has continued to advocate for further research on PARP inhibitors, petitioning scientists, the FDA, and pharmaceutical companies to address the road-blocks and challenges and to facilitate the research and find answers for hereditary cancer. After eight long years, our pleas and efforts have been rewarded. Several PARP inhibitor studies are now recruiting, including a large, Phase II study on PARP inhibitors for women with BRCA-associated advanced breast cancer. Our participation in this research is critical. Unless enough people participate, these studies will not continue. If enrollment falls short, the next time scientists have an idea for treating or preventing hereditary cancer, they may decide that the BRCA community is too difficult to research, and fewer studies will be designed for us. That would be tragic considering how many members of our community develop and succumb to cancer.
This is where the rubber meets the road!
We have worked long and tirelessly to advocate for this research. Now that we have it, we cannot afford to turn a deaf ear. At this moment, the fate of hereditary cancer treatment research rests with each of us. Although most of the current studies are open only to women with advanced cancer, even if that doesn’t describe you, perhaps you know someone who fits that description. If PARP inhibitors work for advanced hereditary cancer, the next step will be tests to see if they also work for earlier cancers.
Here is what you can do to help:
- Get involved. Consider enrolling in a study if you are eligible, and share information about PARP inhibitor research with everyone that you know. Post it prominently on your social media pages, share it with your online or in-person support group, discuss it with your local media, and write or blog about why hereditary cancer research is important. Please remember to share your efforts with us. Email us, post on FB or the FORCE message boards about ways you have spread the word about this important research.
- Stay tuned to FORCE to learn of new available studies. We will be updating this page in the upcoming weeks with new featured studies so check back often.
- Support FORCE with a donation to help us continue our important work to advocate and recruit for research specific to hereditary cancer
We must participate in and promote hereditary cancer clinical trials and other studies if we and future generations are to realize more effective treatment and prevention for hereditary cancers.
Wednesday, December 12, 2012
Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road | Thoughts from FORCE
Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road | Thoughts from FORCE:
'via Blog this'
'via Blog this'
Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road
This blog is a call to action! Please read on, and then post, blog, tweet, retweet, and share about this issue so that we can assure that hereditary cancer research continues!
The call for more research is a constant theme for all diseases including cancer, and sometimes it’s easy to get frustrated by the slow pace of progress. The multistep process from discovery to FDA approval is often long and doesn’t always end in success. But research is necessary to assure that new treatments work as well or better than current standard-of-care. For this to happen, studies must recruit enough people to prove that the agents work. This is particularly critical for research that focuses on a small specific population like people with a BRCA mutation.
PARP inhibitor research is a prime example. I first heard about PARP inhibitors at the 2005 ASCO annual meeting. In her plenary address on advances in hereditary cancer, Dr. Barbara Weber from the University of Pennsylvania mentioned targeted agents (PARP inhibitors) that were designed to exploit weaknesses of cancer cells in people with BRCA mutations. This was exciting news! I was hopeful that this could be the beginning of personalized therapy for people in our community. From that moment on, I vowed to do whatever it took to learn about, share with our community, and promote the studies to determine whether these drugs worked.
Early small clinical trials of PARP inhibitors were promising, but delays and road-blocks affected development of larger research studies. Some of the roadblocks had to do with study design; others involved dosing or side effects as researchers determined the most effective combinations of PARP inhibitors with other anticancer agents. Despite these issues, enthusiasm continues for the potential of these drugs in people with BRCA mutations. Yet, eight years later, there are still no FDA-approved PARP inhibitors and people are still dying of hereditary cancers!
FORCE has continued to advocate for further research on PARP inhibitors, petitioning scientists, the FDA, and pharmaceutical companies to address the road-blocks and challenges and to facilitate the research and find answers for hereditary cancer. After eight long years, our pleas and efforts have been rewarded. Several PARP inhibitor studies are now recruiting, including a large, Phase II study on PARP inhibitors for women with BRCA-associated advanced breast cancer. Our participation in this research is critical. Unless enough people participate, these studies will not continue. If enrollment falls short, the next time scientists have an idea for treating or preventing hereditary cancer, they may decide that the BRCA community is too difficult to research, and fewer studies will be designed for us. That would be tragic considering how many members of our community develop and succumb to cancer.
This is where the rubber meets the road!
We have worked long and tirelessly to advocate for this research. Now that we have it, we cannot afford to turn a deaf ear. At this moment, the fate of hereditary cancer treatment research rests with each of us. Although most of the current studies are open only to women with advanced cancer, even if that doesn’t describe you, perhaps you know someone who fits that description. If PARP inhibitors work for advanced hereditary cancer, the next step will be tests to see if they also work for earlier cancers.
Here is what you can do to help:
- Get involved. Consider enrolling in a study if you are eligible, and share information about PARP inhibitor research with everyone that you know. Post it prominently on your social media pages, share it with your online or in-person support group, discuss it with your local media, and write or blog about why hereditary cancer research is important. Please remember to share your efforts with us. Email us, post on FB or the FORCE message boards about ways you have spread the word about this important research.
- Stay tuned to FORCE to learn of new available studies. We will be updating this page in the upcoming weeks with new featured studies so check back often.
- Support FORCE with a donation to help us continue our important work to advocate and recruit for research specific to hereditary cancer
We must participate in and promote hereditary cancer clinical trials and other studies if we and future generations are to realize more effective treatment and prevention for hereditary cancers.
Sunday, September 23, 2012
HBOC Week 2012: A Call to Arms | Thoughts from FORCE
HBOC Week 2012: A Call to Arms | Thoughts from FORCE:
'via Blog this'
Here is the entire blog post! I am indebted to FORCE and its members for being there with love, information and support throughout my journey as a Previvor and my mastectomies and other surgeries. I am here today because of my genetic and hereditary predisposition not in spite of it!
'via Blog this'
Here is the entire blog post! I am indebted to FORCE and its members for being there with love, information and support throughout my journey as a Previvor and my mastectomies and other surgeries. I am here today because of my genetic and hereditary predisposition not in spite of it!
HBOC Week 2012: A Call to Arms
As we begin HBOC Week and approach Previvor Day 2012, I am again reminded of how far we have come and how far we still have to go in the fight against hereditary cancer. The growth of our organization, message boards, mailing lists, and Facebook and Twitterpages tells the story: more people than ever are aware of hereditary cancer risk and are turning to FORCE for information, support, and resources. This is all good news, but at a recent meeting at the Centers for Disease Control (CDC), the Director of the Office of Public Health Genomics, Dr. Muin Khoury, emphasized that most people who are at inherited high risk for cancer are unaware of their status. Recognizing that identification of people with BRCA and Lynch Syndrome mutations and offering medical intervention on their behalf can save lives, the CDC is now working on an initiative to integrate genomic education and awareness into the states’ Departments of Health.
These programs are sorely needed. On a daily basis through our programs we hear from people who are unaware of their high cancer risk or their options to manage it. The tales we hear illustrate how much work is yet to be done. We hear of high-risk women who are denied breast cancer screening and told that they are too young to have mammograms or that they do not need MRIs, survivors who are not aware of their high risk for future cancers, and people who meet expert guidelines for genetics evaluation but are not referred for genetic counseling. Media reports on screening guidelines often omit the fact that recommendations for people of average risk are not adequate for those who fall in the high-risk range. Some vocal individuals and groups malign genetic evaluation and risk management as unimportant or overtreatment. And stories like the one recently published on BloombergBusinessweek.com show how patients pay the price when health care providers who lack training in genetics misinterpret test results.
But despite these setbacks we have had a lot of wins. Earlier this year a generous gift from Mindy and Jon Gray created the Basser Research Center for BRCA1 and BRCA2 at the University of Pennsylvania. It is the first comprehensive center dedicated solely to the pursuit of research and provision of care relevant to BRCA1 and BRCA2. The United States Preventive Services Task Force incorporated information about BRCA into their recommendations for ovarian and prostate cancer screening. The CDC’s Actions to Save Lives Now, a workshop on incorporating genomics into public health, focused on bringing the public lifesaving education and awareness, and that’s a great step forward. In a few weeks we will host our 7th annual Joining FORCEs Against Hereditary Cancer Conferencewith record-breaking attendance and participation.
HBOC Week/Previvor Day logo
As today marks the start of the third National HBOC Awareness Week and next Wednesday is Previvor Day, our goal is to attract more attention than ever. Let’s focus on the positive, and use this opportunity to save lives through education. We know that risk assessment and intervention can improve survival for high-risk individuals. But people cannot take action if they are unaware of their risk. It is up to us to raise the profile of HBOC until every person has access to the tools, information, and health care experts to assess their risk, and every high-risk person has the eduation, support, and resources they need to make informed decisions about their risk.
Monday, March 19, 2012
Been There, Miss That
I recently received an email with photos of places I have been and are now long gone. I miss going to places like that when I was younger. Those were the good old days for certain. How many of you out there from the local Philadelphia area remember these!
American Bandstand
Original Philadelphia Civic Center
Diving Horse at Steel Pier
Dorney Park
Horn and Hardardt Automat
Hawaiian Cottage (interior)
Hawaiian Cottage (exterior)
Ideal Clothing Store
Latin Casino, Cherry Hill, NJ
Lucy the Elephant, Atlantic City, NJ
Mike Douglas and Frank Rizzo
Olga's Diner, NJ
Swan Boat at Willow Grove Park
Schmidt's Brewery
Steel Pier
Tacony Drive-In
Zipperheads on South Street
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