SunflowerSisters Ovarian Cancer Blog

Ovarian Cancer Signs and Symptoms

2013-05-17T12:51:00.000-04:00

In September 2011, Jo blogged about the signs and symptoms of Ovarian Cancer. As Jo's sister/webmaster, I thought this would be a good time for a refresher.

Please share this information with all of your female family members and friends.

What are the some of the possible signs of ovarian cancer?

abdominal pressure, fullness, bloating

pelvic discomfort or pain

persistent indigestion, gas or nausea

changes in bowel habits such as constipation

changes in bladder habits such as frequent need to urinate

loss of appetite or quickly feeling full

increased abdominal girth - clothes fitting tightly around the waist

a persistent lack of energy

low back pain

some of the above...none of the above.

As you can read, most premenopausal women experience all or some of these symptoms on a monthly basis. They are commonly attributed to PMS and not typically alarming to any of us. The difference between one's monthly experience and cancer is usually persistence and worsening . OR NOT...which is why the disease has been labelled "the silent killer".

There is no screening test for ovarian cancer. A Pap smear cannot diagnose this disease. There is no reliable blood test. Ovarian cancer, gone undetected, spreads throughout the abdomen where it is very difficult to treat. Right now, the key to early detection is to know the signs, know yourself and know what is normal for you.

The following website has some interesting facts about Ovarian Cancer:

Ovarian Cancer INFOGRAPHIC Know The Facts

Jo's original post can be read here:
SunflowerSisters Ovarian Cancer Blog: September is Ovarian Cancer Awareness Month:

Joanne M. Meyer (1953 - 2013)

2013-05-07T09:53:00.000-04:00

It is with deep sadness that I, Jo's webmaster and sister, must report that after 5 and a half years of LIVING with Ovarian Cancer, Jo has earned her wings. She passed peacefully last Thursday morning surrounded with the love of her family.

Throughout Jo's journey, she always maintained a positive attitude and a driving determination to help herself and others with this disease. No "bump in the road" could break her fighting spirit as she always asked, "What's next? What else can we try?".

Jo leaves behind a legacy - her website SunflowerSisters.ca - her gift to all teal sisters everywhere. It is my hope that her work on this site brings some help and/or comfort to other women living with Ovarian Cancer, and for their families and friends.

"If there ever comes a day when we can't be together, keep me in your heart, I'll stay there forever." ~ Winnie the Pooh

MEYER, Joanne Marie - (Dec. 6, 1953 - May 2, 2013) Jo passed away peacefully with her sisters by her side, on May 2, 2013, at Parkwood Hospital, London, Ontario.

She was the loving wife of Stuart Raven-Hill; daughter of Ralph Meyer of Goderich and of the late Ruth Meyer (nee Freiburger); step-daughter of Margaret Meyer; sister to Anthony Meyer, Florida (Gloria); Maryann Gavin, Kitchener (Marshall); Rose Blake, London (Peter); Carol Wahl, Georgia (Philip); Greg Meyer, Newmarket; Lisa Debeljak, Cambridge (John); Chris Meyer, Brampton (Karen); and John Meyer, Idaho (Jennifer); daughter-in-law to Patrick and Alice Raven-Hill of Queensferry, Scotland; sister-in-law to Sheila Meyer, Newmarket and Valerie Raven-Hill, Nassington, England; loving Auntie Jo to Andrew (Holly), Lesley, Michael, Tara (Craig), James, Matthew, Andrew, Brendan, Kirsten, Natalie, Zachary, Sarah (Jason), Julianna, Alexandra, Sophia and Chloe; Great-Auntie Jo to Kayla, Violette, Maeva, Aubrey, Mateo and Lailah.

Jo's career spanned many years and activities: Comptroller at Mitel Corporation, Partner in MacDougall Meyer Inc., and various entrepreneurial ventures. She was an accomplished musician, a gourmet cook, loved nature, gardening and her doggies. People were drawn to her charismatic personality and "joie de vivre".

Always the eternal optimist, when diagnosed with Ovarian Cancer in 2007, Jo sought out ways to help herself. Through the creation of her website: SunflowerSisters.ca, she leaves behind a legacy that provides hope and inspiration to "teal sisters" and their families worldwide.

Special thanks to Dr. Dominique Lanvin, Dr. Stephen Welch and Bonnie Martin at the London Regional Cancer Centre, and to the entire Palliative Care team at Parkwood Hospital.

A celebration of life was held on Sunday, May 5 from 1:30 to 4:00pm at the Elsie Perrin Williams Estate, 101 Windermere Road West, London, ON. In lieu of flowers, donations would be appreciated to Wellspring London and Region.

Online obit link: Joanne Marie Meyer

"Keep your face to the sunshine and you cannot see the shadow. It's what sunflowers do." - Helen Keller

Run for Ovarian Cancer - 2013

2013-04-09T08:48:00.000-04:00

Once again, this year on Mother's Day, May 12, 2013, family and friends of Sunflower Sisters will be participating in the London Health Sciences Centre's Run for Ovarian Cancer.

Since 2006, all funds raised through this event go directly toward the Translational Ovarian Cancer Research Program, led by Dr. Trevor Shepherd and Dr. Gabriel DiMattia. These scientists and their team members perform laboratory research with ovarian cancer patient cells obtained here in London in collaboration with local cancer surgeons. Funds from the London Run for Ovarian Cancer help pay for this program, which is dedicated to making discoveries that will impact the health of ovarian cancer patients.

In the past 10 years, this grass-roots event has raised over 1 million dollars for Ovarian Cancer research to uncover the mystery of this silent killer.

Why not dust off your sneakers and join Team Sunflower Sisters in this fun, 5K run or 1K walk? If you are unable to participate, won't you please consider sponsoring our team or one of our runners/walkers?

Your generosity and support is greatly appreciated. We hope to see you there!

Chemoprevention

2013-02-07T07:43:00.002-05:00

The following was published yesterday on Gregory Pawelski's website CancerFocus.org :

What is chemoprevention and when is it used to prevent cancer?

Yuesheng Zhang, M.D., Ph.D.
Professor of Oncology
Roswell Park Cancer Institute

Cancer chemoprevention is defined as interventions with pharmaceuticals, vitamins, minerals, biologics, or other substances to retard, block or reverse the carcinogenic process. I would add that cancer chemoprevention is also important for inhibition of cancer recurrence. Hence, cancer chemoprevention is about preemptive strike against cancer. Before I go further, however, let me say a few words about carcinogenesis. Carcinogenesis is the developmental and also the silent process from normal cells to cancer cells, caused by chemicals, radiation or biological agents, and driven by genetic changes including activation of oncogenes (e.g. Ras) and inactivation of tumor suppressor genes (e.g. p53) as well as epigenetic changes. So, chemoprevention may be viewed as chemotherapy of carcinogenesis or chemotherapy of cancer recurrence.

Chemopreventive agents may be used in people at high risk of developing cancer and cancer recurrence. To date, the US Food and Drug Administration (FDA) has approved the following agents for cancer prevention: tamoxifen and rolaxifene against breast cancer, celecoxib against adenomatous colorectal polyps, fluorouracil against actinic keratosis, BCG (Bacillus Calmette-Guerin) against bladder cancer recurrence, HPV (human papilloma virus) vaccine against cervical cancer, and PDT (photodynamic therapy) with photofrin against Barrett Esophagus.

Is chemoprevention common? The answer is yes or no. If one looks at the drugs listed above, it is not that many. But if one includes dietary modification (e.g. eating more vegetables and less oily foods), which certainly modifies cancer risk, then chemoprevention is very common. Everyone should be doing it. In fact, dietary modification may have the greatest impact on reducing cancer risk among all chemopreventive approaches.

When we talk about cancer chemoprevention or cancer prevention, it is important to recognize the concept of cancer prevention by delay. Whatever we may be doing, we may not totally stop cancer, but if prevention can delay cancer occurrence/diagnosis by 10 years or so, cancer incidence will be dramatically reduced, because many people will die with cancer but not of cancer.

The list of cancer chemopreventive targets is long; basically, any genes, proteins or biological agents that play important roles in carcinogenesis and cancer progression may be potential chemopreventive targets, as long as they are druggable. Indeed, numerous genes and proteins have been studied as chemopreventive targets. Targets of chemopreventive agents approved by the FDA include: Estrogen receptor, targeted by tamoxifen and raloxifene for breast cancer prevention; cyclooxegenase-2, targeted by celecoxib for prevention of colon cancer; human papilloma virus, targeted by HPV vaccine for prevention of cervical cancer; thymidylate synthase, targeted by fluorouracil for skin cancer prevention. Finasteride, which targets 5-alpha reductase, has shown clinical efficacy in prostate cancer prevention, but has not been approved by the FDA.

I should also mention that some of the FDA-approved cancer chemopreventive agents do not have clear targets, e.g. BCG for prevention of bladder cancer recurrence, and PDT with phtofrin for prevention of esophageal cancer.

It is not possible to name a single best cancer prevention diet as far as specific foods are concerned. But it has been widely recognized that a diet with an emphasis on plant foods (fresh vegetables and fruits) which also maintains a healthy body weight prevents cancer and other diseases. This is supported by numerous scientific studies; just to mention a few below. We know that vegetables and fruits contain chemicals that fight cancer (e.g. sulforaphane in broccoli, resveratrol in grape), whereas carcinogens (e.g. heterocyclic amines and polycyclic aromatic hydrocarbons) are formed in meat cooked in high heat (e.g. grill). Alcohol is also potentially carcinogenic, so drinking in moderation or no drinking is recommended. We also know that overweight and obese are causatively linked to many forms of cancer.

There is very strong and ever accumulating evidence about cruciferous vegetables reducing risk of most if not all cancers. The International Agency for Research on Cancer, World Health Organization, devoted one volume of the IARC handbooks of cancer prevention to this subject: Volume 8, entitled “Fruit and Vegetable” (IARC Press, Lyon, 2003, ISBN 92 832 3008 6), which provided a comprehensive account of the cancer protective activities of fruits and vegetables. Cruciferous vegetables are full of phytochemicals that have been repeatedly shown to fight cancer in preclinical studies and epidemiological studies. We have certainly seen the cancer preventive activities of cruciferous vegetables in our own studies of bladder cancer.We showed that mustard seed powder and its active ingredient allylisothiocyanate, when fed to rats, both inhibited bladder cancer growth and muscle invasion (see papers mentioned in Answer 2), that sulforaphane, which is abundant in broccoli, inhibited tobacco carcinogen-induced DNA damage in the bladder in mice (Ding et al., Carcinogenesis 31, 1999-2003, 2010), that broccoli sprout extracts inhibited bladder cancer development in rats (Munday et al., Cancer Research, 68, 1593-1600, 2008), and that cruciferous vegetables intake, especially broccoli, was inversely associated with bladder cancer risk and positively associated with bladder cancer survival in human (Tang et al., Cancer Epidemiology, Biomarkers & Prevention, 17, 948-944, 2008; 19, 1806-1811, 2010).

A very large number of phytochemicals from cruciferous vegetables have been shown to modulate various steps and processes involved in cancer development and progression. This includes but not limited to scavenging of reactive oxygen species, inhibition of cellular enzymes that activate carcinogens, induction of carcinogen-detoxifying enzymes, induction of antioxidant enzymes, modulation of cell cycle progression, activation of programed cell death and inhibition of angiogenesis. Two review articles I published a few years back on two cruciferous vegetable phytochemicals provide additional useful information: Zhang and Tang, Discovery and development of sulforaphane as a cancer chemopreventive phytochemical, Act Pharmacol Sin 28, 1343-1354, 2007; Zhang, Allylisothiocyanate as a cancer chemopreventive phytochemical, MolNutr Food Res 54, 127-135, 2010. Cruciferous vegetables also contain vitamins, minerals and other nutrients. There are also studies showing inverse association between dietary fiber intake and cancer risk in the colon, breast and prostate.

While many Chinese herbs and their active ingredients have been shown to possess cancer preventive activities, lack of standardization and quality control have slowed the progress. My own research experience tells me that the level of an active ingredient in a given plant can vary dramatically depending where and when the plant is grown, how the plant is harvested, processed and stored, how long the plant has been stored, and things of that nature. Just to give you an example about what I am talking about, at one point we were interested in horseradish powder for cancer prevention, and bought the powder from a company on two occasions. It was the same catalog number and the same name, and the company swore that the two powders were exactly the same, but upon lab analysis we found that the level of the active ingredient (allylisothiocyanate) in the two powders differed by more than 50 fold.

By David S. Alberts, M.D.
Director, Arizona Cancer Center
University of Arizona

There may be a role for chemoprevention in lowering the risk of ovarian cancer and ovarian cancer recurrence. Dr. Alberts points out that there is an especially strong rationale for chemoprevention in ovarian cancer.

The overall five-year survival rate for ovarian cancer is about 31% (according to National Cancer Institute figures), and more than 70% of women in remission on primary chemotherapy will experience disease recurrence and ultimately die.

Diet and physical activity remain potential modifiable risk factors for this disease. Alberts points out that data from the large Women's Health Initiative study suggested that a low-fat eating plan is associated with a reduced risk for ovarian cancer.

In addition, data show that a high milk intake may be a possible harmful prognostic factor for ovarian cancer, while data from the Iowa Women's Health Study indicated that a high intake of vegetables improved ovarian cancer survival.

Additionally, data from the Women's Healthy Eating and Living (WHEL) Study showed that women who followed both diet and exercise recommendations had lower recurrence rates and better survival rates.

There are specific mechanisms by which physical activity may serve to lower the risk of ovarian cancer. Physical activity can:

* improve immune functioning

* reduce ovarian oestrogen production

* reduce body fat (thereby reducing fat-produced oestrogens and the potential for storage of fat-soluble carcinogens)

* increase sex-hormone binding globulins

* reduce circulating insulin and glucose

* reduce the activity of COX-2 and levels of prostaglandins in ovarian epithelium.

Dr. Alberts will serve as the study chair for the GOG-225 Diet and Exercise Trial: "Can diet and physical activity modulate ovarian cancer progression-free survival?"

The enrollment target is 1,070 women, and the primary objective is to determine if disease-free women who have completed therapy for Stage II-IV ovarian, fallopian tube, or primary peritoneal cancer randomized to a healthy lifestyle intervention have increased progression-free survival compared with those randomized to usual care.

Secondary objectives are to determine whether women in the intervention group have improved general quality of life and improved physical functioning. The protocol revisions are under review for GOG-225, funding is in place for start-up, and activation is planned for January 2012.

Source: Oncology Times

__________________
Gregory D. Pawelski

Bulletproof Your Teeth

2013-02-03T18:54:00.000-05:00

There was an extremely interesting article published today on Dr. Mercola's website entitled "The Benefits of Minimally Invasive Dentistry". Dr. Mercola's interview with Dr. Tim Rainey - a pioneer of biologic dentistry - offers alternatives to the "drill and fill" stereotypical methods. Early intervention, using Dr. Rainey's techniques, is said to prevent up to 80% of future decay.

Many ovarian cancer patients, especially those who have undergone multiple rounds of chemotherapy, experience problems with their teeth. Whether it is accelerated decay, gum erosion or tooth loss, most issues stem from the drugs' seepage (up to 30%) into your mouth via the saliva glands. Dr. Rainey suggests the nightly use of baking soda - both as a toothpaste and a rinse - to neutralise the acidity in your mouth.

Cancer patients can also be victims of early onset osteoporosis - calcium deficiency being a common side effect of chemo. Dr. Rainey recommends toothpastes which contain calcium phosphate to help rebuild the surface enamel. He states that the most fundamental way to correct the Ph in your mouth is to change your diet. Promoting beneficial flora can be achieved by eating fermented vegetables, cultured yogurts from raw organic milk and using oral probiotic tablets. And who ever heard of "oil pulling"? No, not tooth extraction!

Here is the complete video and article full of interesting and modern approaches to "bulletproofing your teeth":

http://articles.mercola.com/sites/articles/archive/2013/02/03/minimally-invasive-dentistry.aspx?e_cid=20130203_SNL_Art_1&utm_source=snl&utm_medium=email&utm_campaign=20130203

Cancer Focus: Surgery for Ovarian Cancer

2013-01-21T11:17:00.000-05:00

Gynecologic Oncologists Have Better Outcomes Than Surgeons Treating Ovarian Cancer

(reprinted with permission from Gregory Pawelski)

Elderly women with ovarian cancer tend to survive longer when treated by gynecologic oncologists than by general surgeons, according to results of a meta-analysis published in the Journal of the National Cancer Institute for February 1.

Dr. Craig C. Earle, from Dana-Farber Cancer Center in Boston, and his colleagues analyzed data from the Surveillance, Epidemiology and End Results (SEER) program for 3067 women aged 65 or older who underwent surgery for pathologically confirmed invasive epithelial ovarian cancer between 1992 and 1999.

These data were linked to Medicare data and American Medical Association files to obtain information about medical care they received and specialty type of the surgeon who performed cancer-related procedures. Records showed that 33% were operated on by a gynecologic oncologist, 45% by a general gynecologist, and 22% by a general surgeon.

Patients with stage I or stage II disease treated by gynecologic oncologists were more likely to undergo lymph node dissection (60% versus 36% by general gynecologists and 16% by general surgeons).

Those treated by gynecologic oncologists and general gynecologists were more likely to undergo a debulking procedure at the time of their first surgery than those operated on by general surgeons (58%, 51% and 40%, respectively) and to receive postoperative chemotherapy (79%, 76%, 62%).

Even though patients operated on by gynecologic oncologists tended to have more advanced disease at diagnosis, their survival rates were similar to those operated on by general gynecologists and better than those operated on by general surgeons (median survival 32.5 months, 35.6 months, and 24.3 months, respectively).

"Our data support professional societies' recommendations that it is preferable for ovarian cancer patients to be operated on by gynecologic oncologists when possible," Dr. Earle's group concludes.

SOURCE: J Natl Cancer Inst 2006;98:163-180.

__________________
Gregory D. Pawelski

Cancer Focus: Pap Test for OVCA by G. Pawelski

2013-01-17T13:38:00.000-05:00

'Pap' test possible for Ovarian Cancer?
(reprinted with permission from Gregory Pawelski)

Using cervical fluid obtained during routine Pap tests, scientists at the Johns Hopkins Kimmel Cancer Center have developed a test to detect ovarian and endometrial cancers. In a pilot study, the "PapGene" test, which relies on genomic sequencing of cancer-specific mutations, accurately detected all 24 (100 percent) endometrial cancers and nine of 22 (41 percent) ovarian cancers. Results of the experiments are published in the journal, Science Translational Medicine.

The investigators note that larger scale studies are needed before clinical implementation can begin, but they believe the test has the potential to pioneer genomic-based cancer screening tests.

The Papanicolaou (Pap) test, during which cells collected from the cervix are examined for microscopic signs of cancer, is widely and successfully used to screen for cervical cancers. However, no routine screening method is available for ovarian or endometrial cancers.

Since the Pap test occasionally contains cells shed from the ovaries or endometrium, cancer cells arising from these organs could be present in the fluid as well, says Luis Diaz, M.D., associate professor of oncology at Johns Hopkins and director of the Swim Across America Laboratory. The Laboratory is sponsored by a volunteer organization that raises funds for cancer research. "Our genomic sequencing approach may offer the potential to detect these cancer cells in a scalable and cost effective way," adds Diaz.

Cervical fluid of patients with gynecologic cancer carries normal cellular DNA mixed together with DNA from cancer cells, according to the investigators. Their task was to use genomic sequencing to distinguish cancerous from normal DNA.

The scientists had to determine the most common genetic changes in ovarian and endometrial cancers in order to prioritize which genomic regions to include in their test. They searched publically-available genome-wide studies of ovarian cancer, including those done by other Johns Hopkins investigators, to find ovarian-cancer specific mutations. Such genome-wide studies were not available for the most common type of endometrial cancer, so they conducted genome-wide sequencing studies on 22 of these endometrial cancers.

From the ovarian and endometrial cancer genome data, the Johns Hopkins-led team identified 12 of the most frequently mutated genes in both cancers and developed the PapGene test with this insight in mind.

The investigators then applied PapGene on Pap test samples from ovarian and endometrial cancer patients at The Johns Hopkins Hospital, Memorial Sloan-Kettering Cancer Center, the University of Sao Paulo in Brazil and ILSBio, a tissue bank. The new test detected both early and late stage disease in the endometrial and ovarian cancers tested. No healthy women in the control group were misclassified as having cancer.

The investigators' next steps include applying PapGene on more samples and working to increase the test's sensitivity in detecting ovarian cancer. "Performing the test at different times during the menstrual cycle, inserting the cervical brush deeper into the cervical canal, and assessing more regions of the genome may boost the sensitivity," says Chetan Bettegowda, M.D., Ph.D., assistant professor of neurosurgery at Johns Hopkins.

Together, ovarian and endometrial cancers are diagnosed in nearly 70,000 women in the United States each year, and about one-third of them will die from it.

"Genomic-based tests could help detect ovarian and endometrial cancers early enough to cure more of them," says graduate student Yuxuan Wang, who notes that the cost of the test could be similar to current cervical fluid HPV testing, which is less than $100.

PapGene is a high-sensitivity approach for the detection of cancer-specific DNA mutations, according to the investigators; however, false mutations can be erroneously created during the many steps - including amplification, sequencing, and analysis - required to prepare the DNA collected from a Pap test specimen for sequencing. The investigators needed to build a safeguard into PapGene's sequencing method, designed to weed out artifacts that could lead to misleading test results.

"If unaccounted for, artifacts could lead to a false positive test result and incorrectly indicate that a healthy person has cancer," says graduate student Isaac Kinde.

Kinde added a unique genetic barcode - a random set of 14 DNA base pairs - to each DNA fragment at an initial stage of the sample preparation process. Although each DNA fragment is copied many times before eventually being sequenced, all of the newly-copied DNA can be traced back to one original DNA molecule through their genetic barcodes. If the copies originating from the same DNA molecule do not all contain the same mutation, then an artifact is suspected and the mutation is disregarded. However, bonafide mutations, which exist in the sample before the initial barcoding step, will be present in all of the copies originating from the original DNA molecule.

References:

Funding for the research was provided by Swim Across America, the Commonwealth Fund, the Hilton-Ludwig Cancer Prevention Initiative, the Virgina and D.K. Ludwig Fund for Cancer Research, the Experimental Therapeutics Center of Memorial Sloan-Kettering Cancer Center, the Chia Family Foundation, The Honorable Tina Brozman Foundation, The United Negro College Fund-Merck Graduate Science Dissertation Fellowship, the Burroughs Wellcome Career Award for Medical Scientists, the National Colorectal Cancer Research Alliance and the National Institutes of Health's National Cancer Center (N01-CN-43309, CA129825, CA43460).

In addition to Kinde, Bettegowda, Wang and Diaz, investigators participating in the research include Jian Wu, Nishant Agrawal, Ie-Ming Shih, Robert Kurman, Robert Giuntoli, Richard Roden, James R. Eshleman from Johns Hopkins; Nickolas Papadopoulos, Kenneth Kinzler and Bert Vogelstein from the Ludwig Center at Johns Hopkins; Fanny Dao and Douglas A. Levine from Memorial Sloan-Kettering Cancer Center; Jesus Paula Carvalho and Suely Kazue Nagahashi Marie from the University of Sao Paulo. Papadopoulos, Kinzler, Vogelstein and Diaz are co-founders of Inostics and Personal Genome Diagnostics. They own stocks in the companies and are members of their Scientific Advisory Boards. Inostics and Personal Genome Diagnostics have licensed several patent applications from Johns Hopkins. These relationships are subject to certain restrictions under The Johns Hopkins University policy, and the terms of these arrangements are managed by the University in accordance with its conflict-of-interest policies.

Citation: Johns Hopkins Medicine. "Detecting Ovarian, Endometrial Cancers Using "PapGene" Test." Medical News Today. MediLexicon, Intl., 11 Jan. 2013

__________________
Gregory D. Pawelski

Cancer Focus Reprints

2013-01-17T13:13:00.001-05:00

Sunflower Sisters is pleased to announce that we have obtained permission from Gregory Pawelski, author and moderator of the Cancer Focus website, a forum for PhD's, to reprint his commentaries on ovarian cancer.

In his own words - "I was a spouse/caregiver to an ovarian cancer patient. I became intensely interested in cancer medicine by virtue of working through, enduring and surviving my wife's illness. My college education (I trained as a political economist) and experience helped me to gather knowledge by virtue of voluminous reading and hundreds of hours of past and ongoing personal communication with noted authorities and experts in the field. Although now retired, privately, I've been a cancer patient advocate...my point...is to educate patients and others..."

Here is a link to his wife's story http://www.cancerlynx.com/pawelski.html

Sunflower Sisters will post Greg's commentaries as and when they appear on his website. For past postings or registration go to: www.cancerfocus.org

Survivorship/Caregiver Program

2013-01-17T12:31:00.001-05:00

We have been contacted by a representative of the Canadian Cancer Society to help them publicize a course that they are offering nationally to survivors and caregivers called Living Well Beyond Cancer.

The program has been licenced to them by Stanford University and was originally developed to help patients with chronic illnesses. The new program has been tailored to meet the needs of post-treatment cancer survivors and caregivers, dealing with all aspects of everyday life.

It is an intimate learning/sharing environment limited to ten people per class and can be scheduled to accommodate the participants' availability.

For information and registration in your area, please call the Canadian Cancer Society:
1-888-939-3333

Never Assume

2013-01-09T15:12:00.001-05:00

Yesterday was checkup day and as usual, it was a long one. I sometimes take advantage of the wait by chatting with other "patient" patients.

This story started with me seeing a lady and her husband come out of an examining room ahead of an older woman whom they had accompanied. The younger woman plunked her purse and coat down on the chair beside me and to no one in particular said that she was completely confused. I asked her if I could help and she said she didn't know. I thought she was talking about her bearings - how to get to the right window for appointment bookings, where the blood lab is etc. She laughed a kind of not happy laugh and said she just didn't understand. Trying to pick up on her laughing, I said that I sincerely hoped that she never had to understand this place...to which she responded "it looks like we may have to". Oh my...

Then she repeated "I don't understand...I just don't understand". I looked at her. She started to mumble that she had no idea what they were doing at a cancer clinic. She said that her mother had been operated on recently resulting in the removal of a 14 pound tumour. They said they "got it all". So, what are we doing here?? The gyn/onc surgeon that they had just consulted told them that she thought that the mother's tumour was the result of ovarian cancer. "Not possible" they all said. "Mother had a hysterectomy ten years ago. How can she possibly have ovarian cancer with no ovaries?" The doctor told them that before this latest surgery, she still had ovaries.

The family was understandably reeling in shock and disbelief.

After hearing this I too was stunned and then finally said "I'm so sorry".

What could anyone say? Where did the fault lie when all those years ago incorrect assumptions were made? The patient is now 75 years old. How does she adjust to all of these new realities? What happens when she goes back to her original surgeon and asks the questions that should have been posed ten years earlier? Was it standard procedure at that time to leave the ovaries in a 65 year old woman? Should there have been heightened surveillance in view of her medical history?

This family's story represents a very sad lesson in reinforcing the importance of participating fully in all aspects of your healthcare and more importantly, in never assuming.

Happy Birthday 2012

2012-12-12T13:23:00.002-05:00

Happy Birthday Two us! Yes, we're very proud to say that the SunflowerSisters website is two years old this month.

We've just finished a major re-vamp of the information contained within the tab Coping with Chemo as well as updated Hope & Healing. There's still lots to do so please bear with us - we're aware that certain information is dated. That's good news isn't it? No, it's not good news, it's great knowing that things have changed and improved so much in one short year. We're also adding new tabs so that critical information isn't overlooked...stay tuned!

Many thanks to our readers who have made suggestions and comments. Special thanks go to my dear friend aka "Happy Turtle" who has read, proof-read and made valuable contributions to our site.

So, how are we doing? We've had an audience of 6,300 readers from 34 countries of which 4,300 were unique visitors viewing 17,000 pages...on average, each visitor read 3-4 pages. While that doesn't quite compare with Facebook's stats - we're very pleased with the progress we're making in reaching you.

Many, many thanks to my real Sunflower Sister and mega-cybermaster Lisa, for all her hard work in producing, editing and reining in the author (moi!). And above all to you, my fellow journeyers, your families and friends - this is for you!

Febrile Neutropenia

2012-11-30T14:20:00.001-05:00

Some of you may recall that my hypersensitivity to front line drugs causes me to receive desensitisation infusions - i.e. very long, very slow chemo in hospital with one-to-one nursing. I am at high risk of adverse reactions and so they take extraordinary precautions.

I jokingly call these infusions my "spa chemos" - as they are a relaxing (just kidding) two-day event, meals served in bed, highly attentive nurses, mind-numbing drugs and no problems recovering afterwards - until recently - when my husband picked me up after my hospital stay and was suffering with what was obviously a very bad cold.

If a chemo patient can't remember anything else - they must remember the cardinal rule to take their temperature regularly. WHY? Elevated temperature is an indication of infection.

The rule is 38.3C or 101.5F - get to the hospital!

After three days of monitoring a low-grade fever, my temp hit 38.9C (102F) - I'd gotten the cold. It was a Sunday morning, so off we went to the hospital emergency room.

In the ER, dear hubby was sent in one direction and me in another. He was diagnosed with bronchial pneumonia and given a prescription for antibiotics. I was told that I had a common cold/sinus infection, go home, continue monitoring my fever, take Tylenol, rest...antibiotics? No. We don't do that. Hmmmmmmmmmm. I made it clear to the doctor that it was day three after chemo...sure, all blood work was still within the normal range but I had a fever...no antibiotics?...nadir just days around the corner...husband with bronchial pneumonia...a recipe for disaster!

Nadir is the point at which your blood cells - red and white - reach their lowest levels as the chemo wrecks it's most savage attack. Translation - you have a severely compromised immune system with zero ability to fight infection.

At home, day 6 - nadir - my fever topped 40.2C - an alarming level even for a healthy person, let alone someone trying to recover from chemo. I was once again off to the hospital. But no, common sense or delirium must have prevailed, because I had the foresight to call the Cancer Clinic and alert them to the situation before once again leaving my life's decisions in the hands of a fresh-faced ER doc who doesn't "do" antibiotics. I was told by my oncology nurse to come to the Cancer Clinic immediately - do not pass GO - do NOT go to the ER.

My oncologist was waiting and shocked at my condition. I was immediately admitted to hospital. Diagnosis - febrile neutropenia - a fever of over 38.3C and neutrophil count of 500 or less. My white blood count was actually .1 at admission and my neutrophil count 300... barely registering. (normal ranges can be from 4-11 for WBC and 1,500-9,000 ANC)

Death by the common cold was exactly what I was facing. Antibiotic IV's were hung, mega doses of acetaminophen, bone marrow stimulants, pain meds, anti-blood clot shots to the tummy (ouch!) all bombarded me. I couldn't breath - was coughing out blood - had laryngitis - was literally looking over the edge and wondering if this was it?

Four days and four nights later I was discharged. Two courses of antibiotics later, all was well. But what an incredibly difficult series of lessons to be learnt. Yes, take your temperature frequently when you're undergoing chemotherapy. Yes, go the the ER with a fever if your cancer clinic isn't open. No, don't take "no antibiotics" for an answer. No, don't trust that when the ER personnel say that they'll notify your oncologist that they actually do.

Yes, understand that while undergoing chemotherapy treatment, you can actually die from the common cold.

September 2012

2012-09-12T13:45:00.000-04:00

September is the most important month in my personal calendar. It is a time for celebration marking both our 15th Wedding Anniversary and my 5th "Cancer-versary".

Celebration is indeed in order when you reflect on the "in sickness and in health" part of our wedding vows realising that 1/3 of our marriage has been spent with a sinister intruder - ovarian cancer - in our lives. We haven't waited for today to celebrate however, we've celebrated every breath as a victory, ever day a milestone. Every moment that we didn't have to talk or think about cancer has been a blessing. Every treatment, every checkup, every new development has been a mutual challenge in seeking acceptance and understanding - always and ever, the daily requirement for a new normal.

Ovarian cancer is not a "silent killer" - a phrase most often used in association with this disease - but one with sceamingly loud symptoms which are rarely taken seriously. Study after study says that increased screening does not lead to increased survival but take a step back and really listen to your body. Most of the Sunflower Sisters who I know personally, were very symptomatic before diagnosis and had gone through test after unrelated test until the disease was so advanced as to be irreversible. All of the Sunflower Sisters, who I know personally, have had children, live an active, healthy life and none are BRCA1/2 positive. All of these ladies confound "conventional wisdom".

As did I. Some of you know my story of detection - the clean ultrasound 5 weeks earlier - and then the "infamous" tennis shot which combined with doing the splits - caused what I thought was a hernia. Twelve days later, I underwent a 7 1/2 hour surgery to remove a 22cm malignant tumour. Thank heavens for tennis.

Today marks five years from that date - I have so much to be grateful for. There are so many people to be grateful to - an extremely loving, supportive family and network of friends, competent, caring doctors, nurses and as time goes on, the discovery of many, many unsung heroes.

Five years ago, I was told that I had 42% chance of 5 year survival. At the time, my husband said "You'll make it 43%"! He was right - I didn't though, we did!
Happy Anniversary, Darling!

Angels Are For Real

2012-08-27T14:43:00.001-04:00

As a result of the extensive readership of our website, I have made friends and connections all over the world. In some cases, I've been able to put two followers together to help each other. However, in what I am about to relate, I needed help...what transpired was full of what could only be described as a series of incredible co-incidences and acts of human kindness.

The story begins this past Friday...upon arriving home from my latest chemo treatment, I received an email informing me that a Sunflower Sister, who has been in communication with me for months, had just been given devastating news of disease progression. 17 months ago she was diagnosed with advanced ovarian cancer, then recently breast cancer, and on Friday, her CT scan revealed multiple brain metastases. This sister (we'll call her Bella) is on a work contract in Ireland - single, no family or social network - and is now dying...alone in a strange country.

The news was sent to me by a teal sister from Georgia, USA. Shocked and heartbroken by Bella's circumstances, I immediately put out an SOS for help, advice, suggestions.  Here is what happened:

A dear friend from Michigan, USA responded that she has a cousin in Ireland - she then phoned her.  It turned out that her cousin knows of a 74 year old nun who spent her career in the hospice care field - this cousin contacted the nun who very happily said she will visit Bella. That same cousin then called her aunt, who is a retired palliative care nurse in the city where Bella is hospitalised - she too will visit.

My friend texted Bella directly, introduced herself and offered introductions to specialists in the oncology department at the University of Michigan who are open to distance consultations.

My brother-in-law is a doctor in Canada - born in Ireland - I called him about this tragedy - I was halfway through recounting the details when he interrupted me saying that he actually, personally, knows Bella's doctor! They are going to put their heads together to see what kind of support is available and initiate it immediately. Serendipitously, his best friend is a breast oncologist in Bella's town - he too, has agreed to call.

I then received an email from my sister-in-law who lives in England. She informed me that one of her very best friends (who lives in the south of France) has spent her life as a counsellor to the terminally ill - this friend has offered to Skype Bella.

The next day - Saturday - our family celebrated my father's 90th birthday by hosting a surprise party for him. Having had chemo the day before, I didn't know if I could attend (physically) and, given a totally compromised immune system, whether I should attend. The decision was easy though, I wouldn't have missed it for the world! I got a few sympathetic looks when I arrived.  (I think) I looked awful - had really puffy eyes. What they couldn't possibly know was that the puffy eyes weren't from chemo but resulted from so many tears on Friday night - tears of joy - over the outpouring of love and compassion by complete strangers to "Bella" for "Bella" - and knowing now, that no matter what, because of their efforts, she will not die alone.

Pink Ones

2012-07-11T11:18:00.000-04:00

It's time to re-visit the subject of the Pink Ones - the ones with breast cancer, the ones who are possibly at risk of developing breast cancer - what that means to us - Teal Sisters, and equally, if not more importantly, to our families.

My mother died of breast cancer - what kind of breast cancer, we don't know. I have ovarian cancer. This combination automatically qualified me for genetic testing - a search for the two common breast cancer genetic defects BRCA1 and/or BRCA2.   These two defects are just the more notable ones - there are many others.  The results of my tests concluded that I do not carry these two well-known defects.   The geneticist was so incredulous of the results that he ran the tests twice - causing me to stew for six months. My husband came along to the final consultation as there wasn't a doubt in my mind that if the genetic testing had come back positively, I would have opted for an immediate prophylactic double mastectomy. I was counselled that just because I didn't carry the classic faults, didn't mean I didn't carry ANY breast cancer genetic defects. Because of my mother's death from breast cancer, what was emphasized was that my results did not preclude any of my siblings - male or female - or their children from being carriers of the BRCA1/2 or any other breast-related genetic defect.

I know, it's heavy stuff - but ignoring it isn't a good idea either. I had my annual breast examination last Thursday and sat in the waiting room beside a fifteen year old boy filling out his forms - yes, boy breast cancer.

When I lived in Montreal, I was a patient at the Montreal Breast Clinic - specialists in breast cancer prevention, early detection and treatment. Because of my mother's history, I was considered "high-risk" even though I did not have ovarian cancer at the time. Each visit included three things - a mammogram, a breast ultrasound and an infra-red/thermographic imaging test. "What's that?" you say. Here's the info on it - the first I've seen it in print in years even though the test has been around for decades:
http://articles.mercola.com/sites/articles/archive/2012/07/08/gaea-powell-on-thermography.aspx?e_cid=20120708_SNL_Art_1
It saves lives - it is harmless - it's non-invasive - it penetrates dense breast tissue and provides very early detection. My breast oncologist is one of this country's strongest advocates in adding thermography to every checkup and has reams of evidence of it's capability of pre-cancerous diagnostics.

Why am I bringing this up on an OVCA site? As I said, just because I don't carry the classic breast cancer genetic defects, doesn't mean I'm not at risk of developing breast cancer. I'm hearing about so many women with ovarian cancer who are now also dealing with breast cancer.   And no, it's not a "two for one special" where the same chemo can take care of both things. It is loaded with it's own traumas - surgeries, tubes, chemos, radiation and possibly reconstructions - to name a few.

A breast MRI is the closest thing to infallibility in detection but is not available on demand. It is expensive, uncomfortable and obviously carries a powerful whack of radiation. We OVCA girls are over-dosed on radiation as it is when you consider the number of CT/PET scans we go through on an annual basis - coupled with the odd ER X-Ray and layer on a breast MRI? The combination can potentially cause spontaneous lymphoma.

To my Teal sisters and all women - why not approach your PCP or oncologist and discuss the addition of thermography to your annual routine?  For families with a history of breast and/or ovarian cancer, genetic testing is a start, heightened surveillance is a definite must.

And to you guys - just to provide further impetus for getting yourselves checked - the risk of prostate cancer is 2x higher with a family history of breast cancer.

Be-Attitudes

2012-07-05T19:53:00.001-04:00

The Beatitudes are defined as the 8 blessings made by Christ during his "Sermon on the Mount". They are the rules of appropriate behaviour which supposedly gain you entrance into heaven.  They all begin "Blessed are..." and then are followed with an instruction.

The Beatitudes are a good guideline, but how about coupling them with the The Be-Attitudes - forgetting all that business about peacemakers, the meek and the mild? The Be-Attitudes should read much like the Declaration of Independence and be an automatic entitlement to all cancer patients, their family and friends, giving them the right to rant and rave in the face of so many failures - failure to detect, failure to treat, failure to cure.

There were two new posts on Inspire.com this week from family members who are trying to cope with a relative dying from ovarian cancer. It isn't pretty - it isn't a Disney scene - it's how we pass. Be-Attitude. Don't try to cope.  It's OK to rail against sporadic disease and it's more than OK to cry.  Be-Attitude. Bravery is often a cheap facade masquerading fear - it isn't courage that is needed - it's the relief of honesty.  Be-Attitudes are a necessary step for all of us in finding acceptance.

True to my own convictions, I had one of "those" sessions with my oncologist last week.  It was a very hot day - he was wearing a short-sleeved dress shirt. Before leaving, he put his arm around my shoulder, smiled and said "these sleeves may be short, but I've still got plenty of tricks up them!"

Be-Attitude - for you shall be rewarded...in this case, with a reassuring message and a comforting hug.

Ethical Will

2012-06-22T09:55:00.000-04:00

Ethical Wills are not new - apparently, they have existed verbally for millenia and are even mentioned in the Bible. I was unaware of the concept however, and find the idea novel and thought-provoking.

An Ethical Will is not a binding, legal document but rather one that is written by you, to your family and friends, as a legacy of what you want them to know and remember about you. Its contents can be summarized by the following questions (familiar to some as the prologue to meditation):

Who were you?
What did you truly want?
What was your purpose?

An Ethical Will is based on your values, not possessions. According to the legal society, it is a more treasured inheritance than any material gift. It may take the form of a letter, a book, a voice recording, a video, favourite music, pictures, crafts - a combination of all of these - in essence, your memoires as you have experienced them. Many of us have attended "Celebrations of Life" - post funeral gatherings - where family members have amassed some of the foregoing and leave its interpretation to the viewer. An Ethical Will is you, writing about your life, your view of how you want to be remembered - your "bequeathed comments" made to specific individuals.

Why do it? An Ethical Will is an extension of who you are - a form of continuity, perpetuity. It explains. It gives you the ability to say things you may have left unsaid. It's introspective and passes on your hopes and wishes for others. In a sense, it's a way of controlling your outcome.

http://www.survivorship.org/ lists some topics you may want to consider:

What would I not want left unsaid if I died tomorrow
My definition of true success
The lessons I've learned in life
Why I love you and why I will miss you
What I appreciate the most
What I've learned from mistakes
What I've learned from other members of my family/friends
What spirituality means to me
My happiest/saddest/funniest moments
My wishes for you/my husband/my children etc.

I'm not sure that this is the appropriate forum for bringing up old grudges or complaints - but who knows? Maybe it is - you certainly will have the last word! That is, until Aunt So-and-So dies, her Ethical Will is read and she denies everything!

Preparation of an Ethical Will is a soul-searching process - it's a special inventory of your aspirations, hopes, principles - your life's work. Open a file - add to it when you think of something that says "you". Keep this information in the same safe place as your other legal documents. Here's a free template: http://www.ethicalwill.com/

Weighing In

2012-06-18T14:13:00.000-04:00

We've all felt the shock (and fear) of seeing an extremely emaciated person at the cancer treatment centre. With ovarian cancer, there are many reasons for severe weight loss including complications from surgery, intestinal blockage, ascites, disease encroachment, chemotherapy side effects, pain and depression. Our tabs on Advanced Disease and Advanced Disease Dietary Help give an in depth description of the more notable causes.

Putting on weight during illness is as daunting as dieting and is equally frustrating for the patient and their families. A "healthy" appetite is viewed as just that - healthy. Oncologists have reported that some of the most stressful times in a patient's journey is when their spouse or loved ones interpret their lack of appetite as giving up - an unwillingness to live.

Whether you're being weaned off TPN or recovering from a bowel obstruction, knowing that you must put weight back on is challenging, a bit scary and requires diligent work. Not regaining weight weakens your immune system, puts you at added risk for osteoporosis, causes nutrient deficiencies and will ultimately lead to disease progression.

Theoretically, one needs to add 500 calories a day in order to gain one pound per week. 32 years ago, when my mother was originally diagnosed with breast cancer, she was told by her doctor to eat everything and anything she wanted. He told her to choose cream over milk, butter over margarine. Today, we think we're a little wiser (maybe not!)... remember being taught the difference between good and bad calories? Also be reminded that cancer thrives in an acidic environment so try to choose the majority of your foods accordingly. Here's a chart outlining foods which are alkaline and those which are acidic:
http://www.rense.com/1.mpicons/acidalka.htm

Normally, a patient's healthcare provider should guide them as to what form of food is appropriate - i.e. if you're post-bowel blockage or surgery, you would be encouraged to start with juicing and purees rather than raw foods.

Here are some basic suggestions for regaining weight:

Plan and count your calories. Make every mouthful count. Livestrong has a neat calorie counter app for either wanting to gain or lose weight. It will calculate your ideal weight, let you search their library to see the caloric benefit of millions of individual foods and help you track your progress. http://www.livestrong.com/thedailyplate/ Check out the site before preparing your shopping list.
Start slowly and eat/snack six times a day. Overwhelming yourself with large meals can be harmful and discouraging. Additionally, carefully planning scent and taste can make a significant difference in stimulating your appetite. I remember my own emancipation from the "feed bag" - having been nourished with a completely balanced liquid (TPN) for ten days following surgery - then with the flick of a switch returning to solid foods - was very confusing and more than a bit frightening.
Add healthy fats such as nut butters, avocado, omega 3 oils.
Make liquid calories count - choose 100% fruit drinks. Wine is a fruit drink and an appetite stimulant! Don't be afraid to revert to a food supplement drink in lieu of a snack. Freeze it in a popsicle container for variety.
Be consistent - keep a journal - write down what you've consumed and add it up each day.
Include exercise...it builds muscle, increases your appetite, helps with chemo fatigue and improves your mood.
Go easy on yourself...leave a little room for a treat!

Educating caregivers is essential in supporting patients with weight loss "whiplashes". The speed of the decline can be alarming and the recovery can take time. In cases of very advanced disease, recovery is not always possible - this too, requires special understanding.

Survivor

2012-05-28T18:45:00.000-04:00

Barbara Ehrenreich wrote a brilliant essay called Welcome to Cancerland for Harper's Bazaar in 2001 http://www.barbaraehrenreich.com/cancerland.htm in which she says:
"Does anyone else have trouble with the term 'survivor'?' I ask, and, surprisingly, two or three speak up. It could be "unlucky," one tells me; it "tempts fate," says another, shuddering slightly. After all, the cancer can recur at any time, either in the breast or in some more strategic site. No one brings up my own objection to the term, though: that the mindless triumphalism of "survivorhood" denigrates the dead and the dying. Did we who live "fight" harder than those who've died?"

By definition, everyone is a survivor...one that survives...to remain alive, to continue to function. Society however, celebrates most cancer survivors - bestowing upon them a rarefied status as if we'd come through a great battle - blazing with glory. Some survivors would agree, others would take the stance that cancer is a man made disease, supported by the continuing abuses of man made products and then chemoed to near-death by man made pharmaceuticals. These are the "mad as hell" variety of survivor - the type that are more comfortable using the word victim.

Wikipedia makes this highly interesting comment on the definition of a cancer survivor:
"The ideal survivor, like a superwoman who simultaneously manages her home, family, and career, struggles valiantly to prevent cancer from affecting loved ones by appearing, behaving, and working as much as possible. Once the immediate crisis is past, the person may feel strongly pressured to donate time, money, and energy to cancer-related organisations. Above all, the ideal survivor does not die of cancer. People who publicly conform to this ideal are given social status and respect."

Good grief! "Social status and respect" - for conforming and not dying (publicly) from cancer! I'll certainly try not to!

I think if we were arguing the semantics of the word "survivor", we could come up with any number of alternatives but what is really at odds here is society's head-in-the-sand approach to the realities of cancer survivorship - ignoring the ongoing physical dramas, psychological scars, relationship struggles and financial worries.

On June 3rd, National Cancer Survivors Day http://www.ncsdf.org/ - a day for all survivors wherever they are on their journey - I will celebrate being alive - continuing to live. I welcome this opportunity to educate and increase awareness (with or without the promise of social status) - and hopefully earn society's respect by working hard for answers for those who have gone before us as well as for ourselves.

There is an excellent website called Survivorship A-Z http://www.survivorshipatoz.org/ which includes topics which are extremely practical without the sugar-coating.
As well, http://www.livestrong.org/ was formed for survivorship and the challenges which a survivor faces in the real world. They have a national network of Centers of Excellence in Survivorship which provides support of all types.

Run Report

2012-05-16T16:26:00.001-04:00

Sunday, May 13th marked the 10th Annual Run for Ovarian Cancer, London, Ontario. Sunflower Sisters put together a team of 25 runners, walkers and "strollers" and at last count, raised over $11,400. We're still a bit fuzzy about the grand total due to the Run Treasurer's need to manually handle and post personal cheques and cash. The overall event goal was $160,000 and they announced a (sub)total of $180,000!!

Sunflower Sisters Team 2012

The day started out ominously. I was awakened at 5:20am by two things - firstly, the sound of slashing rain on the skylight and secondly, by my darling husband moaning with a sore tummy and flu-like symptoms. Oh boy...

As for the weather, my Dad claims a direct connection - a hot line to the Almighty - and told us not to worry.  Not to worry?  Hours later, we arrived at the Run grounds and it was still pouring - with all of us standing around in rain gear and umbrellas or simply getting soaked. Hubby perked up (not sure if that was true) with the help of Gravol and tea - he refused to be left at home.

We assembled in the soggy parking lot - handed out t-shirts and caps - worked our way down to the rallying area and miraculously, on cue, the rain stopped and the sun made a valiant attempt at peaking out. Thanks Dad!

Our brother-in-law - now claiming bragging rights for years to come, after recently running and (more importantly) finishing the Boston Marathon - led the men to the starting line - those who would actually run the 5km. Nice to have a ringer! His wife, our own webmaster and Team Leader, Lisa, also a running enthusiast, led the women. Not only did they run, but they doubled back and joined up with the rest of us so we could all cross the finish line together!  And cross the line we did - in style - everyone jogging and pretending that we'd done that all the way! We had a great walk, lots of good chatter and laughs and thoroughly enjoyed the beautiful venue. The running/walking path follows the Thames River - lined with wildflowers, old arboreal forest and teaming with birds and ducks...and yes, everything in London, Ontario is named after everything in London, England!

I was profoundly moved by the arrival of my departed teal sister's husband, two sons and daughter-in-law who joined us for the walk. They were overcome with emotion from the flood of memories and our hugs.  We can only hope that it was a giant step in their healing. Another Sunflower Brother, a friend who'd lost his wife to this disease two years ago, joined us as well - it too was cathartic for him.

We entertained about 30 people after the event - the house was abuzz with chatter and conviviality for hours. We wished all of you could have been with us for the celebration.

I'll end this Run Report by saying how extremely humbled I am by the overwhelming enthusiasm, love and support that was given for a cause that united us as none other could - in the combined hope that the efforts made and funds raised, will make a difference.

Thank you!

Mother's Day 2012

2012-05-10T17:21:00.000-04:00

Sunday, May 13th is Mother's Day in North America but for some reason we've gotten our dates mixed up with our families in the UK. They celebrate "Mothering Sunday" on the fourth Sunday of Lent - so this year, it was on March 18th.

No one really knows how Mothering Sunday/Mother's Day began other than the fact that it has been celebrated since the 16th century. The day was possibly conceived as a celebration of Cybele, the Roman Mother Goddess. Other theories include the fact that it is simply the mid-point of Lent.

It was an extremely important day for boys and girls, men and women "in service" i.e. maids, butlers, serfs etc., as it was declared the only day they had off - yes, in the year! The holiday was given to go and visit their families and was considered quite a privilege.

Traditionally, these reunions included the baking of a Simnel Cake - a fruit cake with marzipan - but as it was Lent, it was saved for Easter. Just for fun, here is a recipe for Simnel Cake: http://projectbritain.com/easter/simnelrecipe.html

Some customs migrated easily across the sea - as one friend recounted, "It was in the '50's and I would buy a bunch of violets for my mum - they cost 6p - I remember - it was the same price as a chocolate bar."

A lot of families, both near and far, will be without the centre of their family this Mother's Day. Many of us, myself included, have lost our mothers prematurely to the dreaded disease which we now find ourselves facing. Many of us however, have been given the legacy of a compassionate and caring role model. We have seen first hand, how to live, love and die well. My mother looked after her family first and foremost. She doted upon all of us until she couldn't - was hospitalised and died peacefully the next day.

To all of my Sunflower Sisters - may you be given the gift of wisdom to know that the steps that you take along this path are being carefully recorded in the hearts of those who love you - to be brought out in times of need and as a constant reminder of what is important.

Happy Mother's Day to All!

P.S. For those who have forgotten, it's not too late to encourage our team in the 2012 Run for Ovarian Cancer on Sunday:

http://runforovariancancer.kintera.org/faf/search/searchTeamPart.asp?ievent=1003000&lis=1&kntae1003000=4693CBB0DC2D487B8D34408FA371D52D&team=4984407

Many, many thanks to all of you who have so kindly and generously supported us! I'll report fully next week with pictures!

May is Melanoma Awareness Month

2012-05-07T08:31:00.001-04:00

May is melanoma awareness month and with that comes the reminder of sun safety, tanning bed safety and the ABC's of melanoma detection. For those of us who have forgotten, when you discover a mole or something that you think looks like a mole, here's the watch list:

A = asymmetry - one half is unlike the other
B = border being irregular
C = colour - varied from one area to another
D = diameter - greater than the size of a pencil eraser, itches or bleeds
E = evolves - changes over a period of time

Melanoma is one of the deadliest cancers but has a 95% cure rate with early detection. It is often unrelated to sun exposure as it can be sporadic or genetic.

A story about one of the more interesting Awareness Campaigns was told to me by my hairdresser.  Volunteers with the Skin Cancer Foundation visited hundreds of salons reminding their operators to look carefully at their clients' scalps. It is one of the most notorious hiding spots for moles/melanoma and difficult for any individual to detect or follow.

Melanoma can strike at any age and occur anywhere on the body but is more prevalent in adults. It doesn't discriminate between male and female. There are actually 3 types of skin cancers of which melanoma is only one. The three types are treated similarly and are stage dependant. This is an excellent website for further information:
http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/Patient/page1

Great controversy continues over the use of tanning salons - the type of light bulbs they use - and the amount of time one spends in them. Vermont and California are currently the only two States in the US which prohibit minors from using tanning salons.  A very prominent media campaign is being staged by an 18 year old Canadian girl - who is believed to have melanoma caused from habitual tanning salon use - hoping that we adopt similar laws. "There exists significant scientific evidence that indoor tanning is linked to increased risk of developing melanoma..." says the American Academy of Dermatology. UV light occurring both naturally and artificially is a known carcinogen.

I have had two friends die from melanoma - both male - both quickly - as a result of their moles having been unseen - one had his occur on his lower back and the other on the back of his arm. Here is a step-by-step guide for self-examination:
http://www.skincancer.org/skin-cancer-information/early-detection/step-by-step-self-examination

Finally, here's the lowdown on sunscreens per Dr. Joseph Mercola - with him saying that many of the popular brands contain even more harmful ingredients than the sun:
http://lewrockwell.com/mercola/mercola127.html
If you can't be bothered to read it, the bottom line is that he recommends the best sunscreen to be covering up - wear a hat and long sleeves.

May Day

2012-05-01T16:48:00.001-04:00

Today is May 1st - the halfway point between Spring Solstice and Summer Solstice. Today is also known as Beltane in Celtic mythology. It is the celebration of the rebirth of Mother Earth - a time of welcoming the warming of the soil, of new growth and a period of abundance symbolised by green everywhere. It's a period of planning, planting and supporting.

Spring is hope - everything in nature is putting out an incredible effort to be - to reproduce - to ensure continuity. It's not a period of reflection but one of action - of making an effort - of discovery. Having just recently moved, I find myself staring at the flowerbeds wondering what's in there - what will those tiny shoots become?

I too am metamorphising from the dark days (of chemo toxicity) to a crisper awareness of light and energy surrounding me. At today's yoga, we were reminded of where we are in our individual practice and how we can move forward...imbalance is needed to achieve balance.

Some of my fellow practitioners and Sunflower Sisters are in deep physical peril from their disease but they have found the middle ground - the place of serenity and calm - and continue to nurture us through their example.

The expression May Day is a cry for help in Morse parlance. I hear May Day as the trumpeter playing Reveille - a signal that it's time to wake up, get the rake out and sweep up winter's debris.

First do no harm...

2012-04-25T20:01:00.001-04:00

"First do no harm" is the foundation of the Hippocratic oath. It is no doubt what springs to mind when my medical professionals see me coming armed with the latest research and endless questions on drugs and treatments outside of conventional ovarian cancer regimes.

To back-track, I completed 7 rounds of topotecan at the end of the first week of April. The first six rounds were the best chemo experiences I've had to date...no side effects to mention and a life! The 7th round was the straw that broke the camel's back . The dosage was increased throughout the period and the last infusion seemingly saved up all that was possible. The result was toxic. I've been asked by two doctors and several nurses to explain what happened and the best I could come up with was "like being in a black hole with no ability mentally or physically to surface". A friend described a similar circumstance as the feeling of having her soul leave her body and being left with the shell. So, this was not a near-death experience with all the welcoming lights and tunnels - just a death experience. Perhaps hell.

This description, coupled with the word toxic, caused my oncologist to take me off chemo for the time being in order to give my body a chance to rebuild and recover.

The mind is so fickle however, it has no ability to remember actual discomfort or pain - only the knowledge that it happened. So, not being daunted by a mere black hole, I am now pursuing other treatments that could be helpful during this break. Two drugs come to mind - metformin and tamoxifen.

Metformin is a drug which is typically used in the treatment and regulation of type II diabetes. Several papers have been published recently about it's potential use in ovarian cancer progression, survival and chemosensitivity. An article in the Journal of Diabetes - published in February 2011 by Donghui Li, states that "...there is increasing evidence from epidemiological investigations, laboratory studies and translational research that metformin may have a broad activity against cancer." Armed with this and several more recent papers, I prevailed upon my medical oncologist, my general practitioner and my brother-in-law (who is a neuphrologist) to see if it isn't worth trying. The theory is that glucose - which is what the body produces as fuel to live - is also the primary fuel of cancer. If that fuel can be limited and modified the cancer cells will starve or eat each other. Metformin has been recommended for use alone or in combination with cisplatin http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084625/ by the Mayo Clinic. The possible side effects include weight loss and diarrhoea. The three-way verdict is that there is no compelling reason NOT to use metformin.

Secondly, even though my tumour assays have shown that I am not BRCA1 or 2 positive nor HER positive, there is a body of evidence that shows that the hormone suppressing drug tamoxifen can be effective as a maintenance drug in between chemo cycles. The female body continues to produce estrogen even after a total hysterectomy, in the liver, adrenal glands, breasts and fat cells. The possible side effects of tamoxifen include hot flashes, muscle pain and constipation - to name a few. Again, the doctors have agreed to the "no reason why not" theory.

My GP told me an interesting story about how the medical world was ultimately able to respond to HIV/AIDS - turning it into a very treatable, maintainable disease - she said that "they threw everything at it - not just one drug at a time". I too see no reason "why not" - I'm going for it.

"This is a marathon, not a race"

2012-04-15T16:01:00.001-04:00

These words were spoken to me in reply to a barrage of questions I posed during my very first visit with my new medical oncologist in May 2009. I had been referred to him by my surgeon after a 17 month remission, as it was clear that I was in the throws of my first recurrence and would need a chemo specialist. The words were pointedly meant for me to rearrange my attitude and to leave him to figure out the medicine.
Those words are echoing in my head these days. A marathon - 42.195 kilometres or 26.22 miles or in my case, four years, 7 months and 3 days.
In the OvCa marathon, staying in the game is no different than training for Boston. Once you're through surgery, it's about nutrition, mindset, chemo endurance and plenty of physical and psychological coaching. We both become imbalanced, exhausted and hit the wall. We both feel the agony of defeat - if not from CA125 psychosis - then from the "elites*" whose name underlines the fact that you didn't stand a chance to win to begin with. And it wasn't about winning anyway.
I'm extremely proud to say that my brother-in-law - our webmaster's husband, John - will be wearing bib number 13147 in Monday's 2012 Boston Marathon. John has been on a journey culminating in this event for years. Other than the day he married my beloved sister, it is probably one of the highlights of his life. The barriers to entry were high - not having been a life-long runner - but having enough drive, motivation and focus - to put it on his "over 50" bucket list. I wish John's father had lived to see this day - maybe he'll be there at the finish line. His mother won't ask how it went - she who couldn't think of a second name for her second son.
Well, we care lots. We, who upon discovering that he didn't have a second name, christened him John Elton - after his favourite singer/performer - we care that he runs his heart out - that he feels the rush of the hundreds of thousands of spectators cheering him on - that amongst that throng of voices he'll hear ours sending him wings under his feet - that he feels the thrill of achievement and sweet victory when he finally crosses the finish line.
It's interesting to reflect on the the doctor's cliche manifesting itself in real time in our family. Life is a beautiful metaphor.
GO JOHN ELTON GO!!!

*elites = world class, high performance, highest speed/lowest time runners