What is a clinical trial? Clinical trials evaluate the value and merit of a new drug and looks at dosing, acceptable toxicities, as well as prevention and treatment strategies. Before clinical trials are tested on humans, they are tested on animals. When enough human data is recorded, then this information goes to the FDA (Food and Drug Administration) for approval. This is a long, lengthy and expensive process. It is estimated that it may take up to 10-12 years and up to an estimated $80 million dollars to bring a drug to the point that you or I could be taking it. More and more people are looking into clinical trials and there are many phases of a clinical trial before it goes on the market. Clinical trials try to find better ways to prevent, diagnose and treat cancer. There are guidelines to each clinical trial and not all health plans will cover patient care costs in a study. Having these guidelines then will determine if a patient can be included in that clinical trial. A patient must also have informed consent, meaning they understand the possible benefits, expected outcomes, possible side effects and possibilities that at any time a treatment may be stopped. A patient can also withdraw consent when in a clinical trail. The patient must receive all the necessary information to make an informed choice before signing the informed consent. I, myself am in a clinical trial and when I started 5 years ago it was in a later phase of the trial, now what I am receiving has become the gold standard for treatment for breast cancer patients that had the same variables as I did. Much can be learned from clinical trials and it may also give a patient another option in treatment. I would not hesitate to participate in a clinical trial again if needed but I do caution every patient the weigh the benefit and risks and be informed. This may help someone in the future to have a Great day ! S
0 Comments
Change is difficult even if it is a good change. We are moving my office two doors down and I will be sharing it now. It has been alot of years since I actually shared an office and although I enjoy being around people, I also like quiet so I can focus and work. That is why often I am up in the early morning hours when I can best think and filter out all the craziness that goes into a day. I like my new roommate and it will all work out but like many things in life, the unknown and future is scarey. When I have a new patient that is facing chemo/ treatment and has so many concerns and questions, I realize that the unknown is a huge part of what is to be dealt with and being positive, honest and receptive and communicating effectively are key components in working through this process. I am asked," how do I live each day when I don't know what the day will be?" My answer remains the same, MAKE IT A GOOD DAY! I also often here that, "it could be worse" and to this I say yes-possibly but it is hard to say that you are fortunate you don't have two broken legs when you only have one that is broken and we must remember that even if it is only one broken that one leg still hurts. Each one of us carries our own cross with issues, concerns, hurts and pain and it is ours to learn how to deal with it. My hope is that I can help you learn what and how to best handle your journey. It is a matter of finding the new normal for you. There is no constant, as things are always changing and like the new tree in the yard, we must bend and flow with all that comes along or get broken in the process. Anger, repression, denial, are all methods that may be used but in the end, it does not promote us to the best we can be. We all have our moments but then to move on to acceptance and enjoy the blessings of each day, makes the day brighter for all. If you are down and out, get out. Find someway to change your surroundings and breathe. Sit in the sun, take long breathes, walk, hug a puppy, help a neighbor and in turn it will help you. Change, it happens to us all. I am closing in on a age that I used to consider senile and maybe I am but I am laughing as I go there and smile. S
Male Breast CA Rare, but a Worry for Families
2010-07-31T10:30:00-04:00
Crystal Phend What breastcancer.org says about this article… Male Breast CA Rare, but a Worry for Families Less than 1% of all breast cancers are diagnosed in men. Still, having a first-degree male relative who has been diagnosed with breast cancer increases a person's risk of breast cancer. The study reviewed here found that having a male relative diagnosed with breast cancer makes family members more aware of their own increased breast cancer risk, but doesn't make them more likely to do anything about this risk. In the large National Health Interview Survey Cancer Supplement, 2,429 people reported having a first-degree relative diagnosed with breast cancer; only 21 of these first-degree relatives were male. Still, in six cases, a female first-degree relative also had been diagnosed with breast cancer. The researchers reported:
If you have a first-degree male relative who was diagnosed with breast cancer, consider talking to your doctor about your breast cancer risk and if genetic testing is a good idea for you. Figuring out your risk -- which may include testing to see if you have an abnormal breast cancer -- is necessary to create a breast cancer screening plan that's right for you. You can learn more on the Breastcancer.org Male Breast Cancer pages. Research News on Diagnosis
(MedPage Today) -- Having a male relative with breast cancer boosts the family's perception of their own risk but doesn't help the odds that they will do something about it, analysis of national survey data showed. Women family members were more likely to report seeing themselves as being at risk than those who had a female relative with breast cancer (61.5% versus 46.5%, P=0.011), according to Suzanne C. Schiffman, MD, and Anees B. Chagpar, MD, MSc, both of the University of Louisville in Louisville, Ky. However, no one with male breast cancer in the family said they had discussed genetic testing with their physician whereas 13% of those with an affected female relative did (P=0.004), the researchers reported in the August issue of the American Surgeon. Likewise, family history of male breast cancer didn't prompt any relatives to get tested for genetic risk factors, whereas 3% of those with a mother, sister, or daughter who had the disease got tested for BRCA mutations (P=0.009). Yet, Schiffman and Chagpar noted, a family in which male breast cancer has occurred has a 60% to 76% chance of BRCA2 mutation, which accounts for up to 40% of male breast cancers. So, they said, women should be concerned about this hereditary risk in the family. "Physicians should be proactive in discussing risk with these patients," they recommended in the paper. Women may need extra prompting, especially in knowing to report male relatives with breast cancer, Schiffman added in an interview. "People aren't sure what they need to be telling their physician, what in their family history is important," she told MedPage Today. "That falls on the physician to really ferret out a good family history." Guidelines recommend starting surveillance screening at an earlier age and considering genetic testing and counseling for patients with high-risk family history of breast cancer, including having a first-degree male relative with the disease. Prior studies have suggested that no single reason why high-risk women fail to get screening or counseling. Women may make an informed decision not to undergo more aggressive strategies even when physicians do properly refer for it, Schiffman and Chapgar noted. To reach their conclusions, the researchers analyzed data from the population-based 2005 National Health Interview Survey Cancer Supplement, conducted by the CDC for the National Center for Health Statistics. The analysis included 2,429 individuals (57.3% women) who had a parent, sibling, or child with breast cancer. Just 21 individuals (0.9%) reported male breast cancer in the family, one male relative in each case. But six of these respondents (28.6%) also had a sister, mother, or daughter with breast cancer. Another 122 individuals reported two first-degree female relatives with the disease. Individuals with a family history of male breast cancer were somewhat less likely to have heard about genetic testing than those with a female relative with breast cancer, but the difference was not statistically significant (38.4% versus 50.8%, P=0.322). The researchers cautioned that their study may have been limited by requiring a Yes or No answer to the questions about perceived genetic risk and testing. Schiffman added that the small number of male breast cancer cases reported by respondents matched its national prevalence fairly well. The study was funded by the University of Louisville's Department of Surgery. Schiffman reported having no financial conflicts of interest to disclose. Primary source: The American Surgeon Source reference: Schiffman SC, Chagpar AB "Does a family history of male breast cancer influence risk perception and use of genetic testing?" Am Surg 2010; 76. Back in the grove and trying to find my way through emails, phone calls, and more. The past week was great and difficult all in one. My one daughter got a call on Saturday and left on Monday for a job in Florida. Her room is a disaster area and I will be doing some packing and shipping and probably moving as she will be home to get her car and drive back to Florida in a couple of weeks. So here it goes, Saturday was Pittsburgh Airport to pick up one son and two grandsons and then Monday back to Pittsburgh to take my daughter to the airport for her trip to Florida and then to the airport on Tuesday for my son from California to come in and then my other son and his wife and granddaughter came in on Wed and then they left on Saturday morning and Sunday a trip to Pittsburgh airport and one to Erie. That was vacation but great to get as many kids together as possible. There are such things as good stress and I for one feel it can hit you like a ton as well as bad stress. Pa and I got home, ate dinner and decided to just veg last night. Now gearing up for the Pawsitively Pink Party at the Bark Park on September 11th. Oh yes, I am dog sitting my grand dog this week. As I weed my way through, I promise my blog will be more relevant tomorrow but know you that you can appreciate my rambling today. Making it a great day!
S Dear Friend,
I just joined the Cancer Survivor Registry’s Breast Cancer M.A.P. (Mind Affects the Physical) Project, a new movement to identify and address the emotional and social needs that accompany a breast cancer diagnosis. Most women experience some form of distress during their cancer experience. In a recent study of breast cancer patients, those who received emotional and social support had lower distress levels, were less likely to have a recurrence, had better overall health and were more likely to live longer compared those who did not receive the emotional and social support component. But more research is needed to determine the social and emotional needs of breast cancer survivors, where there are gaps in care and how we can fill those gaps. That’s why anyone diagnosed with breast cancer, whether newly diagnosed, in treatment, or years past treatment is encouraged to join the movement! Participating is easy. All it takes is a few simple steps: 1. Visit www.breastcancerregistry.org and create an account! It only takes 10 minutes to answer some simple background questions. (We’ll even give you a peek at how your fellow survivors have answered.) 2. Once a year, answer questions about your experience with breast cancer. 3. Enjoy access to M.A.P. Project updates, breast cancer news, existing support resources for breast cancer survivors and opportunities to take part in other studies throughout the year. I hope you’ll join me by lending your voice to The Breast Cancer M.A.P. Project. Together we can help change the breast cancer experience for the millions of women who live it everyday! Hi all, just a note to let you know that although I won't be at my desk, I won't be far. Like most of us, I will be vacationing close to home with daily trips. Four out of my five kids and families will be in for Grandma Camp as it has come to be known. Fishing, boating, food, and family fun is all on the agenda and those amazing 2 pound marshmellows that are out now- haha! I am happiest when all my chicks are home and will miss Mike as he is in the Air Force in Italy but he will be close in thought. I live for these times and even all the confusion. The house seems pretty empty sometimes after having had the bustle of 5 kids with friends running in and out most of the time. My last one that is home, may be out the door very soon for Florida and thinking about the holidays alone is something I just don't want to consider. Loss of any kind is difficult but at least in the future I will have a chance to go visit and see them again. Cancer doesn't always afford that opportunity so when you are having your next family gathering think about others that are alone and set another place at your table and share the moments that we all cherish. Reach out to others and make their day. S
Some exciting news! There is a program called, “CASTING FOR RECOVERY”. This is a program for breast cancer survivors that combines fly-fishing, counseling and medical information. You apply online and are randomly picked and believe it or not, I have been chosen. It is held in Nemacolin this year which is totally awesome and I will enjoy the experience and I am sure learn so much not only about fishing but there are symposiums for medical and psychosocial professionals working with breast cancer survivors. I am also going to be in the Women’s Edge (paper in Meadville Tribune) for the month of October for Breast Cancer Awareness. Just wanted to pass the good news! This made it a great day!
What a great evening! For those of you unfamiliar with LGFB, it is a program for women in treatment to come and essentially get a makeover with free makeup and ideas and examples of how to wear scarves, take care of your wig and more. It is often like pulling teeth to get women to commit to coming and I understand that is just one more thing and sometimes you are just too tired during treatment or not feeling up to par and so you don't come but it is well worth it. The transformation that you see as they get directions and hints on getting their makeup on and looking good in the end with the outcome that you feel better when you look good. That works for all of us but those of us going through treatment it makes a profound impact and lifts your spirits and your outlook. Any women going through cancer treatment can contact me and I will take your information and put you into the system and then THe American Cancer Society will call and confirm the date and make sure we have everything we need to make the class successful and fun. We run this class every month and it rotates days and nights so the next class will be September 21st from 10 -12 here at the institute so please call me and I will start the registration process. One more way to make it a great day! S
Saturday, I spent the day in Tidioute watching the re-enactment of the battle of REMAGEN. It was amazing and realistic as the towns people were being pushed out of town and the battle progressed through the town and across the bridge with the attempt to blow up the bridge and then the surrender. I was moved from the beginning! This was an event that I think every person should see to truly appreciate our freedoms and liberties not to mention that we have never had a battle like that on our on soil. As I watched the soldiers fight and gun fire go off and people falling, I lived the experience through them and continually felt thankful and humbled by it all and very appreciative. We need to honor all our vets and all our military. I have a son in the Air Force and when I went to visit him at his base overseas, I had the privilege to welcome those soldiers coming back from various areas before they traveled to their final destination and as I looked at those tired and worn, young faces, I was brought to tears then as well. It was an honor to be able to stand and thank them and shake their hands as they came into the reception area. I am thankful for what our military does to keep us safe and allow us to enjoy the freedoms and life we have and I am sad and disheartened to see those that don't honor that. Those individuals that can only criticize and not support, I suggest if you know better, then be and do better but I see more talk than action. HEROES come in all sizes, shapes, and from different experiences- be it war, cancer, or something else. I appreciate life and the freedom to chose today what I will do and where I will go. Thank you to all you heroes out there that make me appreciate the gift you have given all of us....hope, encouragement, fortitude and strength. You have made it a great day!
Listening to the news last night, KDKA had a spot on Iron and that even though Iron is a vital nutrient, too much can be harmful. Wake Forset University is looking at a certain protein that regulates iron and studied the amount of it in breast cancer cells. This regulating protein is called ferroportin. The research team has found in the most aggressive breast cancers that ferroportin is reduced. This is all just in laboratory findings but gives promise to future insight and study points for and in the development of cancer drugs. I will keep following and let you know as more info comes out. It is a great day! s |
AuthorMy name is Sue Kilburn and I am a clinical nurse breast cancer educator at the Yolanda G. Barco Oncology Institute in Meadville, Pennsylvania. Archives
March 2015
Categories |