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BY ELIZABETH WHITTINGTON | MAY 18, 2012
We are all gearing up for the largest oncology meeting of the year, the annual meeting of the American Society of Clinical Oncology. What's great about this meeting is we hear both the up-and-coming, early phase studies, but also the late-phase studies. These studies could truly change clinical practice for patients.
If you have a minute, take a look at the ASCO schedule and let us know if there is anything that you want to know more about!
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BY ELIZABETH WHITTINGTON | MAY 2, 2012
Bayer, the maker of an experimental drug for colorectal cancer and GIST, has opened an expanded access program for colorectal cancer patients who have progressed on other therapies.
Patients are encouraged to talk to their doctor about whether they are eligible for the program.
Details can be found at: Regorafenib in Subjects With Metastatic Colorectal Cancer (CRC) Who Have Progressed After Standard Therapy: CONSIGN
Regorafenib is a targeted agent that has shown slight progression-free survival benefit in patients who have progressed on several lines of therapy. Results from the CORRECT trial, which was first presented at the ASCO Gastrointestinal Symposium earlier this year, showed that the drug improved survival by a median of 1.4 months, from 5 months with placebo to 6.4 months--a 29 percent increase in overall survival. The drug controlled the disease in nearly half of patients, delaying or reducing tumor growth in 44.8 percent of patients as opposed to 15.3 percent in the placebo arm.
The phase 3B expanded access program was designed to provide patients with metastatic colorectal cancer the drug if they have no other therapy options. The program will be until the drug is approved, which is not guaranteed. Researchers will be collecting safety data during the study. Common side effects reported included hand-foot rash, fatigue and diarrhea.
Patients will take the oral drug once a day in four-week cycles (daily for three weeks, then one week off before starting therapy again.)
More information on expanded access and other programs to access investigational therapies can be found in "Ethics of Access." You can also find more information on the FDA.gov website.
Bayer has opened 55 sites around the world, including at least 10 sites in the U.S. For more information on access to regorafenib, email Bayer at clinical-trials-contact@bayerhealthcare.com.
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BY ELIZABETH WHITTINGTON | MAY 1, 2012
With Facebook now adding an "organ donation" to its timeline feature, Chemobabe, a breast cancer survivor and blogger, brought up an interesting point on her Facebook page:
FB plans to add "organ donor" status to the timeline. Cancer survivors aren't allowed to donate organs. Will we look like selfish a-holes? Does the good of drumming up donors outweigh our potential stigmatization? (You can read and post comments here.)
The comments are across the board, including those who didn't realize that survivors have limited ability to donate organs and blood, which is a great topic all to itself. The Accidental Amazon touched on organ donation in a recent blog "Blood and Organ Donation After Cancer."
Personally, I can't be a bone marrow donor, and it upsets me. I know the need is out there, and there is nothing I can personally do except spread the word on how important it is.
But to go back to Chemobabe's point, I think this may be a learning opportunity for both survivors and non-survivors about organ donation. And while cancer patients and survivors may not be able to include "organ donor" on their timeline, they can designate "overcame an illness," but that brings another whole set of questions, doesn't it?
Would you designate the date you "overcame cancer" on Facebook?
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BY ELIZABETH WHITTINGTON | MAY 1, 2012
As of this posting, nearly 40,000 people have viewed Darlene Gant's plea to the FDA on Youtube. Gant has metastatic breast cancer that has spread to her liver. She is asking for the release of the investigational drug pertuzumab to her on a compassionate use basis.
She writes:
"I am stage 4 breast cancer and am in final stages. I have a beautiful son, Cameron age 11 that is watching me die little by little each day, as well as my husband. It is tearing us up and so many other families are going through this too. The most unfortunate part is that there is a very promising drug for me, Pertuzumab that the FDA is just sitting on since December and does not plan on releasing it until June 2012. I am not expected to make it to June, my liver is engulfed with tumors and I am wasting away. In this video, which we did not plan, I am reading cards that I have filled out for my son from age 12-25 for birthdays, graduation, wedding et.... I am trying to leave him pieces of me to comfort him and let him know how much I love him - he is my world. I can handle dying but not leaving my son. You see I want to finish my mission here and raise my baby to manhood. For years I have watched other women die waiting on the FDA to release a drug that has concluded all their trials and data and they would not give the drug for compassionate use then either. I do NOT qualify for any trials as my disease has progressed to much. We must stand together and not let anyone else die WAITING. Please help by passing on this video link and writing to your local congressman or senator. Support the NBCC, National Breast Cancer Coalition as they are fighting for us and with us to make compassionate use a standard. It may be too late for me but there are so many others waiting and yet to come. Blessings."
Pertuzumab, which is expected to be approved by the FDA this summer, has been shown to delay disease progression in women with HER2-positive breast cancer, but it's not known if it will work for Gant's cancer. However, after weeks of public pleas, most likely generated by her video, Genentech, the drug's manufacturer, has allowed Gant to receive it before final FDA approval. (The FDA also approved the compassionate use of the drug.)
There are a lot of questions raised by Gant's case: Why does the FDA wait on approval decisions when it is apparent some drugs are better than what's available (pertuzumab was given priority review, which means it was reviewed much faster than the traditional route)? Is the use of social media appropriate in asking for compassionate use (when typically it is the patient's physician who works with the pharmaceutical company to get access)? And can anyone fault a patient for trying each and every way to cure their disease?
What would you do?
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BY ELIZABETH WHITTINGTON | APRIL 18, 2012
When we asked our readers for photographs of who inspired them through cancer, we received beautiful stories and images about spouses, nurses, doctors and friends (Photo slideshow: Who Inspires You?). We also received submissions from patients and survivors who said that it was their children who inspired them. It's also hard to forget that many times, they also act as caregivers.
Here are a few of the stories and images we received. If you were inspired by your children -- no matter their age, I hope you will share your story, too!
My daughter traveled back to North Carolina several times during my treatment from Seattle to help and give me positive encouragement. I treasure all the special times we shared during my treatment.
Donna, of Winston-Salem, N.C.
My son, Kyle, stayed by my side throughout my journey with breast cancer. Although he was scared, he was my rock and lifted me in laughter and love. Both of my children, Kyle and Brad, deserve great credit for my being here today. It is their love that inspires me to continue to be the best I can be as a mother and a person.
Arla, of Palm Bay, Fla.
Abraham Lincoln said, "And in the end, it's not the years in your life that count. It's the life in your years." That quote always got my attention, even before I was diagnosed with cancer in 1998. When the boys were little, I always tried to remember not to let the hustle and bustle of each day let me forget to embrace those each moment - although my goal was usually just try to get through the day in one piece. The blink of an eye and my babies are grown! My boys don't really have memories of me without cancer. They were in kindergarten and first grade in 1998. We have been battling my breast cancer off and on for almost 15 years. I know they are the reason I am still here fighting the fight to be their mom. They are my inspiration and always will be who I strive to impress and who I love.
Emily, of Normal, Ill.
I underwent a right mastectomy at age 28 while two months pregnant. When I had my first surgery in 1976, I prayed to be able to see my daughter graduate from high school. As that time approached, I got scared--I didn't pray for enough time! She has now graduated and last year got her MBA from Hopkins Business School. I am also a grandmother of a brilliant five-year-old named Aria. I went through hell, but my inspiration was that wonderful baby I was carrying.
Peggy, of Westminster, Md.
I was diagnosed with stage 3 rectal cancer when I was 29, just a few short months after my wedding. Within the past four years I have had chemo, radiation and surgeries to fight the metastasis. On the days when I wanted to do nothing but pull the covers over my head there was one person who got me up: my daughter, Taylor, my defender. She tracked every single dose of meds in a notebook, kept a close eye on what I ate (or DIDN'T eat) and most importantly, she lived her life. On those days where I needed something to get out of bed, Taylor's soccer games and track meets gave me reason to do so. She always told me that it would be OK for me to miss them, but with such an uncertain future, I needed to be there to see my little girl in action. She is my inspiration, and I couldn't be prouder.
Phuong, of San Rafael, Calif.
On the toughest days of cancer treatment, the tiny life growing inside of me was all the inspiration I needed to remain strong. Diagnosed with breast cancer just days after learning I was pregnant, my baby girl's strong heartbeat let me know we were in this fight together. On the day that should have been my final round of chemo treatment, I instead gave birth to a beautiful, healthy daughter named Serenity Milagros Shelbon. Serenity arrived to let me know we had won our battle. To learn more about our journey, visit www.team-roxy.com.
Roxanne, of Fort Worth, Texas
As a single mother of three, I don't think many people realize that children are caregivers too. I am so blessed to have three wonderful, supportive children by my side. At the end of each day, my children have my best interest at heart. I am so proud of my three Chick-a-Dees! In this photo, you see my son Jordan, me, my daughter Breanna and Ta'Nia. As a family, we traveled to Johnson and Wales University in Providence, R.I., to support Breanna graduating from the High School Bakery and Pastry Summer Program. Breanna wants to be a pastry chef, and I hope to live to see her accomplish her dream. I want to fight the good fight, lead by example and continue to make a positive difference in my children lives. I pray God will grant me the opportunity to support my them into adulthood.
Rhonda, of Odenton, Md.
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BY ELIZABETH WHITTINGTON | APRIL 16, 2012
Today, more than 22,000 runners are participating in the Boston Marathon. One of those runners is Ed Feather.
Ed is running on the Dana-Farber Marathon Challenge team in memory of his wife, Sarah, who died of ovarian cancer last year.
Sarah, who wrote a blog called The Carcinista, was known for her writings about living with the disease, including her decision to stop treatment (Taking the Reins).
When I saw Ed's video "Why I Run," I knew I wanted to share it with you. I can imagine thousands of others who have similar, touching stories. I wish I could share all of them.
Today, I am thinking of Ed and Sarah, and all the others who honor a loved one affected by cancer.
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BY ELIZABETH WHITTINGTON | APRIL 13, 2012
Yesterday, CURE magazine hosted a Facebook chat on dental health with Dennis M. Abbott, DDS, founder and CEO of Dental Oncology Professionals of North Texas.
We had a good crowd who asked some great questions. You can view the chat in its entirety on our Facebook wall (you can view it here).
We also had some great questions posed before the chat on the Events page. Here are a few of those questions and Dr. Abbott's answers.
Sara asks: I had perfect teeth before cancer. After my diagnosis, chemo and radiation, everything went downhill. I had a tooth shatter and another one is ready to give out, and I have "surface cavities." When I mention to my dentist if these could be chemo and radiation related, my dentist shrugs it off. What do you think?
Dr. Abbott: @Sara...Unfortunately, you're not the only one who has had experiences like this. We have known and understood for some time that some chemotherapeutic agents and head and neck radiation affect salivary flow and thus increase susceptibility to dental decay. I, however, do believe that there is still much we don't know. It is very possible that some chemo agents could contribute to weakening teeth, and it is extremely likely that weak teeth are a long-term effect of radiation where the teeth were in the field. I know that this answer doesn't directly help your teeth, but I truly appreciate you sharing your story because it helps us understand associated risks. This influences research and information we can share with patients in the future.
Kenda asks: I was on Fosamax 5 years ago, was diagnosed with stage 4 breast cancer that spread to the bones and switched to Zometa. Since September, I've been on Xgeva. What are my risks for the jaw problems?
Dr. Abbott: @Kenda...You should know that because of the bisphosphonate therapy you have received/are receiving, you are at a higher risk for bone necrosis than someone who has not taken these meds. The scientific community believes that risk is directly related to dose. "Dose" means the strength of the bisphosphonate, route of administration, and the frequency/duration of treatment. This risk is usually only realized if dental surgery is necessary - like having a tooth pulled. Should you ever require an extraction, please MAKE SURE your dentist or dental oncologist FULLY understands your medical history (especially bisphosphonate therapy).
Kevin asks: Is it common to have sensitive gums after radiation and chemo?
Dr. Abbott: @Kevin...the short answer is yes. Everyone is different and in the world of medicine that adage is especially true. If you are experiencing sensitivity, tell your dentist or dental oncologist. There is much he or she can do to help!!!
Cathy asks: How do you know if your dentist knows how to treat cancer patients? What information do you make sure he/she knows? What questions do you ask?
Dr. Abbott: @Cathy...the first thing to do is ask! Most dentists are not going to lie to you. If they are not comfortable treating you (for whatever reason), they will refer you to someone they trust that can meet your needs. I think some basic questions are: What components of my blood work are most important for you to review prior to dental work? (The answer to this is Absolute Neutrophil Count - ANC - and the Platelets. He or she should be able to discuss what the values should be and what to do - or not do - when these values are not where they should be.) You could also ask what he or she does to manage xerostomia or treat mucositis. These are the most common complications due to cancer therapies. He or she should have a definitive answer for this question.
Jodie asks: What should a parent know about dental issues for their child with cancer? I did my own research and had to find someone who was familiar in with dealing with immunosuppressed children. What are some long-term effects of chemo on our children's teeth? What should we watch for and be aware of?
Dr. Abbott: @Jodie...This is a great question. Parents should know that cancer therapies can wreak havoc in kiddos' mouths just like adults. It is not uncommon for pediatric patients to experience mucositis (mouth sores) and dental decay (especially if their treatment causes severe dry mouth). In addition to dealing with these conditions that are similar to adults, children's have dental developmental issues. Some cancer treatments may affect adult tooth development and/or pediatric teeth (baby/milk teeth) loss. Some kids make it through chemo without much long-term trouble at all. Others experience many, many teeth and oral health problems. Unfortunately, there is no one answer that can apply across the board. I would say that awareness is the best way to handle the issue. Understand that cancer treatments can affect dental health. Have regular dental exams and cleanings. Take fluoride treatments at those visits - and more often if necessary. Fix any dental issues (cavities) as soon as you are aware of them. If you notice a pattern of dental problems, please talk to your dentist or dental oncologist about your concerns.
Kevin asks: I am an oral cancer patient who had radiation. My insurance is balking on paying for new fluoride gel prescriptions and new trays, but they will pay for bi-annual treatments in the office. What is your feeling about the sufficiency of that treatment? My dentist says she can find no evidence of radiation damage and my teeth appear to be in great shape.
Dr. Abbott: @Kevin...I totally feel your frustration with insurance companies! I think the thing to look at in your case is the recommendation of your dentist. If she feels like your teeth are in great shape, then fluoride trays may not be necessary. In my opinion, fluoride trays are superior to bi-annual in-office treatments...but again, I must defer to the recommendation of your dentist. She is the one who has the benefit of actually seeing you, in-person. Treatment should always be personalized. Just because fluoride trays are best for one person doesn't mean that they are the only option for you.
Christine asks: What is your dental office's policy on oral cancer screenings? Do you automatically screen your patients?
Dr. Abbott: @Christine...Oral cancer screenings should be a part of EVERY dental office's standard of care. Yes...we automatically screen patients. We also offer an exam with a multi-wavelength diagnostic light for an additional nominal fee ($32), but this is in addition to our standard oral cancer examination.
Linda asks: How do I approach my medical insurance about dental care? I had the root rot on two teeth that were anchors for bridges and had to have them extracted and new bridges built to the tune of $9000. My dental insurance only covers $1000 per year, and my health insurance policy says it has to be due to an accident. How do I approach this with my medical insurance?
Dr. Abbott: @Linda...this is a tough one, because I know you're not going to like my answer. Unfortunately, insurance is a contractual agreement between the company and the insured. Within that contract are many stipulations regarding what will and will not be covered. It has been my experience that insurance companies will not stray from that contract. Most medical policies will only cover dentistry when it is related to an accident. Some will cover extractions in unusual cases. One of these "unusual cases" that is SOMETIMES covered is the need for extractions prior to head and neck radiation. Again, this is on a case-by-case basis and is dependent upon how your policy reads.
Rhonda asks: Should I avoid sugar? Can I use whitening trays? I use fluoride trays, salagen, floss and brush at least four times a day. So far, so good, and I want to keep it that way. Does everyone have teeth problems eventually or is what I'm doing enough for me to continue having no problems?
Dr. Abbott: @Rhonda...let's face it, most people are not going to avoid sugar completely. Carbohydrates that damage teeth come in many forms...white, sticky bread; sports drinks; sweetened green tea; ice cream; etc. While these foods have actual nutritional value, they also cause decay in teeth when left on the tooth surface. Minimizing "cariogenic foods" (foods that cause dental decay) will help. Brushing, or at least rinsing with water, after eating such foods is a great practice. It sounds like you are doing a good job with the brushing and flossing and making sure your dry mouth is kept in check. Continue to keep up the good work! Regarding whitening trays...you should really talk to a dentist or dental oncologist who has the benefit of seeing you in person. He or she would also be the one to answer your question regarding if what you are doing to sufficient. Understand, however, that many, many people do have dental issues related to cancer treatments.
Cathy asks: What are the limitations to dentistry if you are taking a bisphosphonate or the newer Xgeva for your bone health?
Dr. Abbott: @Cathy...patients with a history of bisphosphonate usage should be cautious when undergoing any dental procedure that causes insult to the bone. This most often means extractions (teeth pulling). Bisphosphonates work because they decrease the activity of cells in the bone that remodel the bone matrix. This eliminates the bone's ability to heal after an extraction and causes bisphosphonate-related osteonecrosis (dead bone) which is a very difficult situation to manage. The result is often pain and an increased risk of infection for the patient suffering from osteonecrosis. The risk of a patient developing osteonecrosis seems to be directly related to the dose of the bisphosphonate. Patients taking bisphos via IV (like Zometa, Aredia, Xgeva) are at highest risk.
Dale asks: What should I recommend for patients when they experience a metallic taste after radiation that makes their food taste terrible?
Dr. Abbott: @Dale...this is a great question, and one that we deal with on a pretty regular basis. First, make sure that the patient is not using metal utensils. When my mother-in-law was going through chemotherapy, she would eat with plastic "silverware". For some, that's enough to help. For those who still experience that metal taste, we have had some success with an antioxidant rinse put out by PerioSciences. Email me for more information...drabbott@dopnt.com.
Linda asks: I would like to ask Dr. Abbott what recommendations he has for general preparation for chemotherapy? In my case, mitomycin and 5FU, especially regarding sore gums/mouth ulcers.
Dr. Abbott: @Linda...the first thing I would say is make sure your mouth is clean before starting chemo. I know this sounds basic, but we have seen a correlation between oral hygiene status and the severity of mid-chemo or post-chemo complications. Have a baseline visit with your dentist or dental oncologist before starting chemo. Have a thorough dental cleaning. Make sure your dentist or dental oncologist knows what kind of treatment you're about to undergo. Understand that dry mouth is a big problem. Keep your mouth moistened and talk to your dentist or dental oncologist about salivary substitutes or stimulants, if necessary. Some of my patients have sworn by popsicles. (Please make sure they're sugarless!) They have used them during infusions - and there is some research to warrant ice therapy may have some benefit. (The same could be true for eating ice chips.) If problems do arise, treat them early. Again, let your oncology team know. There are some great prescriptions out there that can help!
Lauren asks: I have had 8 rounds of Hyper C-Vad and several rounds of CHOP for mantle cell lymphoma, and then a stem cell/bone marrow transplant. My dental work was put on hold for about 2 years, and when I did resume I had 6 cavities after many years of not having any. Since then I have had only 2. Will this continue to be an issue and is there anything I should be doing as a preventive measure?
Dr. Abbott: @Lauren...it's hard for me to say whether or not this will continue to be an issue. It sounds like, however, you are NOT on a downward spiraling roller coaster - and that is a GREAT thing! Continue to pay close attention to your oral health. Make sure your dentist or dental oncologist knows and understands your previous treatment. Six cavities in two years of not going to the dentist (especially given all that went on during those two years) is not too bad. Stay on top of your oral health. Get professional dental cleanings on a regular basis (which may be as often as every three months!). Use fluoride and/or treatments for dry mouth as recommended by your dentist or dental oncologist.
Kathy asks: I postponed my routine dental appointment until a few weeks after my last chemotherapy (taxotere and carboplatin). I believe they will be doing xrays this time. Is it really necessary to have xrays taken every year? I am leery of any procedures that might increase chances of cancer recurrence.
Dr. Abbott: @Kathy...this is a very timely question given the news that broke yesterday. First, let me say that the study that was in the news yesterday is suggestive and offers no hard evidence. Even Dr. Otis Brawley, the American Cancer Society's chief medical officer said that we can't draw definitive conclusions from that study. Now...I think you can ask your dentist or dental oncologist if they are using digital x-rays (which use 90% LESS radiation than conventional films). It is VERY important to see what's going on below the surface...and dental x-rays are the only way to do that. We must make certain that there is not decay on the root surfaces of the teeth or between teeth. These areas are highly susceptible in patients who have had dry mouth (and chemo). Also decay in these areas moves very quickly, making early intervention paramount in the success of treating the tooth.
Kathy asks: My white blood cell count is still a little low. Is it possible to get an infection from routine cleaning?
Dr. Abbott: @Kathy...the short answer is YES. Your dentist or dental oncologist should know your white cell counts and plan accordingly. During a dental cleaning, the bacteria that is being removed from your teeth has a chance to enter the bloodstream (since some amount of bleeding usually occurs with a dental cleaning). Your dentist or dental oncologist should know if antibiotics are necessary before the cleaning or if the dental cleaning should be delayed until the white count has recovered.
Christine asks: If someone has a chronic low white blood cell count, is getting maintenance therapy every 6 months, and has dental issues where there may be surgical intervention and the dentist is reluctant to perform the surgeries because of this, what can the person do if it becomes an ongoing issue that is causing them infection due to dental issue??
Dr. Abbott: @Christine...an ongoing infection is never a good thing, be it dental or otherwise. The dental issue should be addressed. The dentist should consult with an infectious disease doc and collaborate to find a window of opportunity for treatment to be completed. Communication between all healthcare providers on your team is of paramount importance...especially in a case like this. Your docs need to develop a plan and timeline to rectify the dental issue - especially if the dental issue is the source of the infection. If the dentist continues to be reluctant, find someone who better understands the systemic health risk of a chronic dental infection in an immunocompromised patient.
Let us know if you participated and if the chat was helpful.
And if you have ideas for future Facebook chats, let us know!
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BY ELIZABETH WHITTINGTON | APRIL 11, 2012
I recently went to the doctor for a past due exam – all clear, but the doctor reminded me that I would need a baseline mammogram at age 35.
"Umm ... 35? I thought it was 40 or 50? Why do I need a mammogram so early?"
"That's just what we do here," she replied.
To my doctor's credit, I didn't question further about why a baseline mammogram is the norm in her practice, or what benefit it would give me. But I did want to do more research before I made a decision.
Let's be perfectly clear. This is a baseline mammogram we're talking about. A baseline mammogram is taken first to compare to future mammograms when a woman decides to begin routine screening at 40 or 50. There's no evidence that this comparison between a baseline mammogram and the first routine screening holds any benefit. In addition, the baseline mammogram isn't looking for anything at this point.
I have no family history of breast cancer. I don't have a suspicious lump or any other symptoms. I don't have dense breasts.
I checked with my insurance company and they cover mammograms, regardless of age or reason. However, I can't find a professional group that recommends a baseline mammogram. The American College of Obstetricians and Gynecologists don't recommend them unless there is a family history. The American Cancer Society recommended baseline mammograms several decades ago, but removed it back in the early 1990s.
So, why do some gynecologists still recommend them?
I talked with Dr. Len at the ACS and he gave me some important background. He said the ACS recommended baseline mammograms from 1980 to 1991 because of the belief that they could help detect cancers in the future – comparing the mammography images from baseline and those taken later. (Here's a chronological depiction of the various guidelines from the ACS over the years.)
Unfortunately, he says, baselines mammograms didn't help find cancers. Many times those baseline images weren't even available to compare with later images, and ultimately they just didn't prove to be very valuable.
Women depend on their doctors to understand these guidelines and they should be comfortable being able to discuss the pros and cons with their patients, Dr. Len says. And an answer of "That's just what we do here," isn't helpful.
This isn't to say I don't think young women should be screened for breast cancer. I know several young women who had symptoms, a family history or just a nagging concern that something was wrong but had to jump through hoops to get a mammogram or other screening test to finally diagnose breast cancer.
When I asked on my Facebook page what other women thought of baseline mammograms, it generated a great discussion.
Lisa, who was diagnosed with breast cancer at a young age only 18 months after a clean baseline mammogram, had some great advice: Any doctor should be able to give an answer to the question, "Why are you ordering this test, and why now?" If not, I'd press for better explanation for the timing. When told "that's just what we do," I'd definitely press that. "Why do you do what you do if research on screening's effectiveness contradicts your practice?"
For now, I'm going to hold off. I have a few more years before I decide whether to start routine screenings at 40 or 50--and I have a feeling that will be a much harder decision.
What do you think? Did you get a baseline mammogram?
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BY ELIZABETH WHITTINGTON | APRIL 3, 2012
In continuation of the genome blog from yesterday, a paper presented Monday afternoon that showed the benefits and realistic expectations of whole genome sequencing initiated a lively discussion from four experts in the field.
The paper, "The Predictive Capacity of Personal Genome Sequencing," looked at more than 53,000 sets of identical twins and sequenced their whole genome to look for genetic variations and compared the information with health conditions and diseases they did and did not develop over time.
Bert Vogelstein, MD, co-author of the paper and co-director of the Ludwig Center for Cancer Biology at Research at Johns Hopkins in Baltimore, likened the genomic explosion to a revolution, and "you can't always predict the final outcomes of revolutions," he says. The ethical implications of what to do with the information for individual patients, the cost-benefit of whole genome sequencing and what will come in the future were some of discussions that were bounced around.
Vogelstein noted that we have about 4.5 million genetic variants that distinguish us from one to another, but the functional significances are unknown and the interactions between variants are astronomical. Taking all that into account to determine how your genome can affect your health can be mind-boggling, indeed.
One of the challenges was to define "useful." If a genomic variant increases the risk of a health condition, such as cancer, by 5 percent more than the risk found in the general population, it may not mean much, but over 10 percent may be important, especially if there are lifestyle modifications or chemoprevention strategies that would lower that risk.
Another factor is if a person finds they do not have a higher risk, of say, colon cancer, what does that mean to the individual? Because a person does not have a high risk of colon cancer (a negative result) doesn't necessarily mean they're out of the woods. The person may still develop cancer because cancer results from a mixture of genetic and non-genetic factors, including environment and random, unpredictable changes in genetic makeup.
"Even though we all suspect that there are some things that are truly genetic, when it comes to cancer, it's genes, the environment and also bad luck," said Thomas Sellers, PhD, of the H. Lee Moffitt Cancer Center & Research Institute in Tampa. Whole genome sequencing analysis of risk doesn't take into account all those environmental factors that may cause cancer, including tobacco use, obesity, viruses and pollution.
But one benefit of whole genome sequencing will be to identify people who have a higher risk of cancer than the general population, especially someone who has a family history of the disease. If someone has a risk of colorectal cancer, frequent and earlier screening may play a much more important role than for someone who has normal risk. However, if a person finds they do not carry a higher risk of melanoma, they could still develop skin cancer if they have excessive sun and tanning bed exposure.
"It's not about your genes there," said Sellers.
That's why genetic counseling and interpretation of these results by a professional is so important, the panel stressed. If patients are given the data with no context, they may interpret the findings differently, including underestimating the implication of a negative result, overestimating a slight risk or considering the psychosocial and emotional effects of a high risk and interventional strategies to lower that risk.
Individuals who have a family history of cancer or have cancer themselves are the most likely to benefit from whole genome sequencing (at least from a cancer perspective).
In terms of a change in technology, cost is coming down. Sellers said that although it is expensive and time consuming to sequence a whole genome, it will get to the point where it is cost effective and expected, especially when trying to determine cancer risk or in making treatment decisions. "We're not there yet, but genetic tests to look at one panel can be $1,000 or $2,000 or $4,000; but we're approaching a time when we can have the entire genome sequenced for $1,000, and every time you need one of those genetic tests, you can just look at the data on the computer."
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BY ELIZABETH WHITTINGTON | APRIL 2, 2012
In the President's address yesterday evening at AACR (American Association for Cancer Research) annual meeting, Judy Garber, MD, of Dana-Farber Cancer Institute, spoke on "Cancer Genetics in the Post-Genome Era." Garber is the director of the Center for Cancer Genetics and Prevention at DFCI.
One of the points she drove home was the fact that it is getting easier and cheaper (relatively speaking) to have your whole genome sequenced. While this may cost upwards of $10,000 to $20,000, individuals are doing it. And with the ease of consumer genetic tests for individual genes, it may gain traction, and it will only get cheaper.
The technique is used to generate an entire DNA code for one person, comprising about 3 billion letters of DNA sequence, which includes about 3 million genetic variants. Geneticists examine this genetic information with what's known on health and disease. This analysis can help identify health conditions the patient may have an increased risk for, or have already. Using that information can help physicians create an individualized plan for treatment or prevention.
Garber noted that Brigham and Women's Hospital has foreseen the day where patients bring in their sequenced genome to their doctor and ask for an interpretation. Because while the sequencing may be easy, the analysis is what will be difficult. Brigham and Women's Hospital has opened the Adult Genetics Clinic and Personal Genomic Consultation Service along with Partners HealthCare Center for Personalized Genetics Medicine. The service is a pilot project that will offer whole genome sequencing to patients who would have the greatest short-term benefit from the testing, looking for traits that would impact treatment or prevention strategies.
[You can read more about genome sequencing in "It's In the Genes."]
Patients would be referred by their physician for the pilot program, but Garber foresees the day when someone arrives at their doctor's appointment bringing in a flash drive of their genome sequencing and asks "Now what?"
So, would you get your genome sequenced today? And does a history of cancer make one more amenable to the idea?
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