|Featured on the Ovarian Cancer Tab …
Hope line and other outreach brings knowledge and support
What’s in a CA-125 test?
New tool may help individualize treatment
Avastin slows advanced ovarian
Heart disease drug for ovarian
and more …
Camp for Ovarian Cancer Survivors
If you’d like to see Montana countryside, and have a chance to chat with other ovarian cancer survivors, you’ll want to know about Camp Make-a Dream. The nonprofit has a four-day, free camp experience just for women who’ve faced ovarian cancer.
“Ovarian cancer is a disease with so many unique challenges, and we try and address them through education with medical information, and by giving women the opportunity to share experiences with their illness. But we break away from it for fun, but with people who’ve had the same surgeries, the same treatments …,” says Jennifer Benton, Camp Make-A-Dream’s director of Marketing and Special Events.
During down time women retreat to their cabins, settle into cushy couches by a fire, read, have cocoa, and chat. This is typically when they find time to write their “warm fuzzies”—personal notes they drop into each others’ bags, hanging in the lodge, to take home as remembrances.
Besides the one-on-one and group chats, women hear from gynecological oncologists about the topics they care about—from fear of recurrence to clinical trials, to how to talk to their families. And they get to ask the medical team questions.
Now on to getting away from it all … There are break away theme nights, like Hollywood Night where the ladies dress up as their favorite stars, walk the red carpet, and settle in for a game of Hollywood Trivia.
There’s an art studio, and plenty of outdoor time on the 87-acre campus in historic Gold Creek, Montana—at the foothills of the Pintlar mountains and overlooking a river.
Women feeling up to it hike and go on a field trip, which might be sapphire mining. Or it could be a riverboat excursion through a deep ravine in the mountains, past stonewalls edging the river, past a canyon where Lewis and Clark came through.
“There are so many awesome things around us in this little historic community that make it special. And we try to give women a taste of this—a unique Montana experience,” says Jennifer.
“We are here to bring these women good times, and to facilitate support. There’s not the support system for those whose prognosis is often not good – they seek fellowship from others with their diagnosis. Our campers actually refer to what they have together as a sisterhood. They actually call themselves, sister geese; like geese that fly in a v; they support each other.”
General background on Camp Make-a Dream
- Medically supervised camps
- Free of charge other than transportation though scholarships may be available for first-time guests
- Spring and fall sessions for both ovarian cancer and for women of all cancers
- Women from anywhere in the world are welcome and have come from around the United States and eight foreign countries
- For women of all ages. Most are in their 50’s and 60’s, though the camp is drawing an influx of young women
For more information
Targeting clear cell ovarian cancer
If you have clear cell ovarian cancer you’ve probably heard it’s among the hardest ovarian cancers to treat. Unlike serous ovarian cancer cells, clear cells tend to survive easier in low-oxygen, low-glucose environments. They tend to become resistant to drugs that may work initially. Researchers are turning to our genes for more information to hopefully help better target and treat this disease.
What is the science uncovering?
Platinum-based chemotherapies like Cisplatin are showing some promise in this special population of women. But unfortunately, some cells develop secondary mutations that enable the bad gene to repair damaged DNA, and Cisplatin loses its effectivness.
Research is focusing on new options to outsmart the resistant cell, including drugs that may work in combination with platinum-based therapies.
In some cases, clear cell ovarian is associated with an active angiogenic pathway, which is an abnormal genetic functioning enabling the tumor to feed off of blood vessels. New agents are working to starve blood supply to the tumors. Bevacizumab (Avastin) and sunitinib malate (Sutent) are among angiogenic agents that are currently under the microscope, showing promising results in some cases.
Another drug under review is temsirolimus (Torisel). Temsirolimus is not an angiogenic but, like the other agents, blocks specific abnormal pathways to prevent cancer cell overgrowth. Both sunitinib malate and temsirolimus suppress a protein called VEGF (vascular endothelial growth factor). MD Anderson Cancer Center in Houston, TX is presently conducting trials on women with clear cell carcinoma who overexpress this protein.
The disease may also be associated with an overexpression of EGFR (epidermal growth factor receptor). A gene therapy called adenovirus type 5E1A has been under investigation to block the signaling pathway and suppress EGFR.
Other new drug combinations may work when the malignancy is associated with an overexpression of a protein called HER2. Trastuzumab (Herceptin) is among those that may be considered as an “add on” to the treatment regimen.
Meanwhile, most of the cutting-edge research on clear cell ovarian cancer is conducted in Japan. The Japanese Gynecological Oncology Group is currently looking at irinotecan, which inhibits a protein that helps repair damaged DNA. There was minimal improvement in outcome in phase 2 trials, but a phase 3 trial has been launched in hopes of building on the early study, and ultimately determine more specifics on whose cancer irinotecan may target, and how.
For more on clear cell carcinoma:
Clinical trials on clear cell ovarian cancer:
Matching ovarian tumors with the best drug
If you have had a recurrence of ovarian cancer, there’s an organization that may help you decide on the best treatment moving forward. They do it by looking at the molecular profile of your tumor to learn its unique characteristics. Clearity Foundation coordinates and sometimes pays for this ovarian tumor marker testing. The nonprofit analyzes and interprets the results, sends you a comprehensive report that pulls all the sometimes overwhelming data together. They identify best treatments in your individual situation and, if you’re interested, help you get into clinical trials.
“Ovarian cancers are very different from patient to patient, which means that they are likely to respond differently to the same drugs. By learning more about your individual tumor blueprint, you and your doctor can make better-informed treatment decisions, which we expect will lead to better therapeutic outcomes,” says Deborah Zajchowski, PhD, scientific director of The Clearity Foundation.
Determining the best treatment is a two-step process
First, your results will be compared to those of about 200 women with ovarian cancer in Clearity’s privacy-protected database. Then they will be correlated with evidence reported in clinical studies that associate molecules in a given tumor with drug responsiveness.
“Through this two-step, comparative process we get a more complete picture. Our database allows us to determine how a woman’s tumor is different than others’. Then, we take what we have learned and review the clinical literature to determine what therapies are most appropriate for that individual’s biomarkers,” says Dr. Zajchowski.
Getting your tests back and the next step
You should have results from multiple panels in two to three weeks after the labs receive your tumor sample. Shortly after, you will get a comprehensive report that integrates all of the findings. If your tumor profiling report shows that your cancer may be sensitive to a particular approved or investigational drug or compound, Clearity helps you work with your oncologist to find the most fitting treatment or trial.
What you will need to do
Your only responsibility is to fill out a few forms (links provided below) and send your most recent pathology report. If you don’t have this information, Clearity will obtain it on your behalf and may be able to assist you in paying for the tests.
“Individualized treatment is the future of cancer care. We are dedicated to bringing the future of personalized medicine to women with ovarian cancer today,” said Hillary Theakston, executive director of The Clearity Foundation.
Financial assistance application:
Patient information and consent forms:
Through tumor profiling, proteins, RNA and DNA in the tumor are studied. The information is used to identify “pathways” (Molecular activity in a cell that leads to a certain cell function) important to cancer’s survival.
Once alterations in each tumor’s pathways are identified, the tumor can be matched with one or more drugs that target those pathways.
For more information, contact Clearity at 858-459-5177 or firstname.lastname@example.org
Hope line and other outreach bring knowlege and support
L’Oreal Paris and two organizations out to fight cancer have teamed up to reach out to women with ovarian cancer. They’re answering women’s most guarded questions and leading them to resources for continued suppport.
Tapping into the cosmetic industry giant’s large client base, and with the knowledge of the Ovarian Cancer Research Fund, CancerCare.org runs an ovarian cancer helpline, facilitated by oncology social workers.
“With this particular disease there isn’t quite as much support as with many of the other cancers,” says Rosalie Canosa, director of Social Services at CancerCare.
“There isn’t a shortage of information, but of financial support.
“Women with advanced stages (stages three and four), which is most women, unfortunately typically will have recurrences. If they do, they are on and off chemotherapy for the rest of their lives, and that care is costly. Much of what we offer these women is help to relieve the financial stressors. We see that they get financial assistance they’re eligible for through CancerCare. And we also help them find local resources with free or discounted services,” says Canosa.
Woman also reach out to the hotline for practical guidance, like “how-to’s” on setting up payment plans, talking to their doctors about reducing costs, or guidance applyng to drug manufacturers for assistance.
But the support is not all about finances
“Women are hungry for knowledge about their treatment options. They call in to learn what cancer centers are out there. They want to know about the newest therapies, and about clinical trials. We see that they get the information they need to confidently decide whether they want to enroll and where to apply,” she says.
Social workers staffing the line send callers to the Ovarian Research Fund website and the Gynecological Cancer Foundation, who does one-day workshops. Women come through the hotline for a copy of CancerCare’s new book, Medical Update on Ovarian Cancer. This free resource can be mailed to them or viewed on line.
Callers learn about CancerCare’s on-line national support group, also facilitated by oncology social workers. They can drop in 24/7; it’s private and password protected. The Internet venue goes for about three months, but once it’s run its course many of the ladies continue to e-mail back and forth and send cards.
The comfort level participants have developed with each other has led to another similar venue, which is face to face groups through the New York tri-state area. Plans are to extend the network into other regions so more women can make friends living close by and walking the same path while tapping into the expertise of practitioners running the groups.
Whether over the phone, from their computers, or in person, the venues help see to it that women don’t hit the bumps alone—but in good company. Armed with knowledge.
Hope line: 877-684-6731 OVHOPE1
For more information on online and face-to-face support groups:
800-813-4673 or email email@example.com.
If you’re like most women who have heard, “You’ve got ovarian cancer” there’s probably another group of words ringing through your ears—a term once foreign to you, but now your language : “CA-125.” CA-125 is the tumor marker that can make you sweat if it starts to creep up—and has you feel like dancing in the streets when it’s low.
Though a rising CA-125 can get you nervous, oncologists’ views on whether to do anything about it vary
Many doctors don’t believe in starting treatments based on this tumor marker alone. Their reasoning is that there are other conditions that can cause transient (temporary) increases in CA-125. Pregnancy, for one can cause an increase. Definitely not pregnant? Well, know that some other pre-existing illnesses can affect CA-125, like certain forms of arthritis or diabetes.
If you’ve had a hysterectomy, that can elevate your CA-125 too, often because of irritation of the lining of the abdomen. But as long as you’re getting good care, try to breathe easy in this situation. There’s a very good chance that once the swelling goes down, your CA-125 will too.
What should I do if my CA-125 were to rise?
If you don’t have physical or radiographic evidence that there is a recurrence, but your level is rising, speak with your doctor about whether you should start treatment. Ask your doctor why he/she makes their decision on whether to test or not. Ask how he/she decides in general. And if you want to know more about your personal situation, don’t hesitate to ask how the decision or recommendation was made for you.
For more information:
I’m going to say it, but not too loud … “Ho-hum sex.”
It happens. To lots of people. But if you’ve had cancer, especially a gynecological cancer, sex may especially be not as much fun as it used to be. Say you’re on an anti-depressant or another medication known to interfere with your drive. Say you’ve had a hysterectomy or oophorectomy. You’ve got a colostomy bag. Or you’re just plain tired. If you’ve got or have recently been treated for some cancers, chances are you’ve hit the jackpot – claiming all or many of these “prize scenarios.
Know there are very physical reasons for many of the problems.
If you’ve had radiation in your ovaries, or no longer have your ovaries, you’ve lost estrogen, which can be a real hit on your sex drive. Oophorectomy also depletes the elasticity in the vagina, not so comfortable. You’ve also lost about 50% of your testosterone; that’s how much is produced in the ovaries. I know, you probably thought testosterone was a man thing, but believe it or not, the hormone arouses the nipples and clitoris.
You’re not alone if, on top of all else, you’re struggling with body image. It’s hard with surgical scars, extra pounds, edema …
But you don’t have to kiss the mood goodbye forever. There’s hope and help out there.
Here are a few ideas for boosting you sex life from Conversations, a newsletter for ovarian cancer survivors available at www.ovarian-news.com.
Change your sexual routine (that is, if you have one; otherwise, you can get one.) Here are some ideas:
- Soft lights, candles, sexy clothes, music
- Sexual massage: touching but no penetration
- Fantasize, and make it sexy – Lady Chatterley’s Lover, Bridges of Madison County, and The French Lieutenant’s Woman are fun
Ask your doctor about testosterone replacements. A few are methyltestosterone,
testosterone injectables/pellets, and combination estrogen/testosterone like estratest.
If the problem is dryness, look into lubricants.Some are astroglide, KY Jelly (plain, silky, hot) which is long-lasting, and Slippery Stuff. You can find them on line at www.drugstore.com.
If you take an anti-depressant, you may want to ask your doctor to switch you to Wellbutrin. It has fewer sexual side effects than SSRIs.
There are also complementary and alternative medicines. But check with your doctor on these. Some are L-arginine, ginkgo biloba, cinnamon oil, and via-crème.
If you have pain during sex, you can try vaginal dilators, pelvic-floor physical therapy (www.apta.org to find a therapist), kegel exercises (about 60 kegels per day), sex therapy, or estring (vaginal ring that does not increase estrogen level).
And last but not least, be romantic! Have fun with your life!
A certain type of genetic mutation—one that drives cancer—can be found now through a technique called OncoMap. Using OncoMap to find cancer-causing genes (oncogenes), researchers believe they may be on their way to learning more not just about the cancer—but about an individual’s tumor, to determine the best treatment. A treatment that will target the mutation and, ultimately, the cancer.
OncoMap finds the mutations in tumors using a panel of over 100 known oncogenes. To date, 76 mutations have been found in 26 genes tied to ovarian cancer.
In the past several years, targeted therapies have improved outcomes in tough cases by inhibiting identified mutations.
This includes with breast and lung cancers, and chronic leukemia.
“We know that many human cancers have “point mutations” in certain oncogenes, and these mutations can cause cancer cells to have a dependence on just one overactive gene …. If the mutation can be inhibited, then it seems that this often halts the cancer process.” says Ursula Matulonis, M.D., Dana-Farber Cancer Institute; Harvard Medical School and a lead investigator in the Oncomap/Ovarian study.
“This study shows that it’s feasible to use OncoMap to identify whether a patient’s tumor has a mutation in an oncogene for which a known drug is available. In addition, someone’s cancer could harbor a mutation that is not known to be associated with ovarian cancer. These patients could be matched with a drug that inhibits that protein too.
For more information:
Adding Avastin (bevacizumab) to chemotherapy slowed advanced ovarian cancer in clinical trials. Continuing the drug as a maintenance therapy after initial dosage brought slightly better results.
In one of a number of recent clinical trials, patients gained four to six months with no cancer growth when they were treated with chemotherapy plus Avastin as a maintenance therapy.
Who were the participants?
1,873 women with advanced epithelial ovarian, primary peritoneal cancer, or fallopian tube cancer.
What did the trial entail?
Participants had surgery to remove the cancer then were assigned to one of three groups:
- Chemotherapy plus Avastin
- Chemotherapy plus Avastin, then up to 10 more months of Avastin
“The benefit was seen across all clinical subgroups examined and confirm results reported earlier at the American Society of Clinical Oncology meeting.
Avastin works by blocking a protein called VEGF which develops blood vessels that the cancer feeds off of. This targeted therapy is the first effective drug for fist-line treatment of ovarian cancer (first treatment at first occurrence) in over 17 years.
Results were presented at the 2010 annual meeting of the American Society of Clinical Oncology. June 4-8, 2010. Other trials are finding similar results.
Finding clinical trials:
It’s been known to work against atherosclerosis for some time, but now the drug is showing promise in the fight against ovarian cancer.
Apolipoprotein A-I (apoA-I) is a biomarker that may detect early stage ovarian cancer. But the researchers working on the agent at University of California’s Comprehensive Cancer Center found its potential application extends farther. Not only can apoA-I detect ovarian cancer, it appears to fight the disease (National Academy of Sciences on-line edition Nov. 1, 2010).
If the research uncovers the best possible news, the biomarker could mean that a cancer that to date is rarely caught early, will be able to be detected sooner, when it is most often curable. But researchers uncovered good news beyond the peptide’s potential as a detection tool: ApoA-I also has three substantial cancer-fighting characteristics: it inhibits HDL, the good cholesterol which slows lipid transport, known to stimulate cancer cell growth. ApoA-I has anti-inflammatory properties, and it has antioxidant properties—also good for staving growth.
“If this peptide is successful in clinical trials, we may have a novel, effective therapy for recurrent, chemotherapy-resistant ovarian cancer, without compromising quality of life during treatment,” Robin Farias-Eisner, one of the study’s researchers reported to NewsRX www.NewsRX.com.
In September 2009, the FDA approved the first diagnostic tool to predict the likelihood of early ovarian cancer. The OVA1TM includes the first three biomarkers identified to diagnose the disease early.
For more information: