It’s not uncommon for people to gift others with money on a birthday, or a graduation, at a wedding, etc.., but what about when people really need it? What about when people are in times of personal crisis?  Statistics show that 60% of all bankruptcies are a result of medical costs with most people unable to pay for emergency medical care even with the help of insurance. GiveForward, a fundraising website, was created to help individuals cope with a medical emergency with the financial and emotional support of family and friends.

GiveForward is a fundraising website which allows it’s users to create secure, fundraising webpages to raise money for emergency situations. The majority of fundraising pages are created to cover medical costs with 60% of beneficiaries fighting cancer. According to Ariana Vargas, Development Associate with GiveForward, the organization seeks to empower the friends and family of a loved one going through an illness to provide both emotional and financial support through a fundraising webpage. “It can be hard to know what to do or say when a loved one faces a medical emergency. GiveForward wants to help answer the question, ‘what can I do?’”

GiveForward provides support in addition to the fundraising tool available on the website to make the financial impact for the beneficiary more effective. Personal fundraising coaches are assigned to each individual in order to make the process as easy as possible considering all the stress the beneficiary is already under. Fundraising coaches help beneficiaries in a number of ways including, providing them with email templates to send out to family and friends when asking for donations as well as checking up with them throughout the process to give them tips and guidance for reaching their fundraising goals.

Several cancer patients have used GiveForward to raise money for fertility preservation procedures and Ariana is one of the members at GiveForward who helps them raise the funds they need in the short timeframe they have. She states that many cancer patients needing fertility preservation have discussed this with close family and friends so asking a family member to kick off the fundraiser with a substantial amount, really can set the tone for high donations. Like anything else though, “what you put into it is what you’ll get out of it,” so if you spend the time to personalize your fundraiser to those you are asking to contribute, you’re more likely to reach your goal.

This Sunday, August 7^th, you can find the GiveForward fundraising team at the Susan G. Komen Breast Cancer Walk finish line at Soldier Field in Chicago, IL. They’ll be wearing gray t-shirts with a pink elephant encouraging people to start talking about the elephant in the room and erase the stigma behind asking for help. For more information or to see examples of fundraisers, including those for fertility preservation procedures, please visit www.GiveForward.com.

Last week, Mary Zelinski reported to us about the annual meeting of the Society for Cryobiology held in Corvallis, Oregon, July 24-27. She continues her review of the meeting and the keynote presentation by Dr. Steven Mullen, below. Read the first blog post on Cryo2011.

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By Mary Zelinski, PhD-Our Oncofertility colleague, Dr. Steven Mullen, Head of Reproductive Cryobiology, 21^st Century Medicine, started the keynote session with his excellent presentation on “The Evolution of Methods to Cryopreserve Human Oocytes”.  He discussed how the initial attempts in the 1980’s to cryopreserve human oocytes using dimethyl sulfoxide (DMSO) as the permeating cryoprotectant followed by the slow-cooling method yielded poor outcomes.  This raised clinical and social concern for the health of potential children derived from this technique, thereby essentially halting research until the late 1990’s when it was discovered that inclusion of propylene glycol as a cryoprotectant could improve outcomes.  Follow-up reports using slow-cooling methods confirmed that reasonable survival and embryonic development can be achieved when propylene glycol and sucrose (at the appropriate concentrations) were used.

In the late 1990’s, the first case report on successful vitrification of human oocytes was followed by studies indicating successful cow oocyte vitrification using extremely fast cooling and warming rates.  Remarkable success based on developmental potential was achieved when similar vitrification techniques were applied to human oocytes in the mid-2000’s. Since then, numerous clinics applied vitrification, using various methods to achieve “ultra-rapid” cooling and warming, with good outcomes.

Direct comparisons between slow-cooling and vitrification reveal, in most instances, that vitrification can provide a better outcome.  Dr. Mullen noted that vitrification has its drawbacks including the use of very small volumes of solution applied to the surface of a thin carrier device that is directly exposed to liquid nitrogen for the fastest cooling rates poses a potential cross-contamination between patients.  Development of closed systems lags behind the open systems in terms of success.  Furthermore, a steep learning curve is required to obtain technical expertise, thus repeatability among clinics remains variable.  Nonetheless, some studies using large numbers of young patients have reported comparable pregnancy rates between vitrified and fresh oocytes.  Studies with similarly large cohorts of older patients as well as cancer survivors remain to be demonstrated.  Furthermore, long-term follow-up of the health of offspring health is also unknown at the present time.

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Stay tuned to hear reviews of the other keynote speakers at this year’s meeting of the Society for Cryobiology or read the first Oncofertility blog post.

Fertility concerns rank high among newly diagnosed cancer patients of reproductive age. There are several options available to patients interested in preserving their fertility before treatment begins. An often selected choice among patients with a spouse or a committed partner is embryo banking.

Embryo banking is an assisted reproductive technology (ART) procedure in which embryos are created by mixing an egg with “the best” sperm to form an embryo and then cryopreserving those embryos for future reproductive use.  Individuals must go through the proper legal channels to ensure that there is a trajectory for the embryos should they not use them. Currently their options are disposing of them, donating them to research or another individual or continuing to store them.

As one would imagine, deciding the fate of your embryos can be a complicated process. What may sound like an ideal solution to your potential infertility, does not come without a series of ethical and legal concerns that need to be addressed and resolved prior to undergoing any procedures.  While there are several ethical and legal scenarios that come into play, I’d like to focus on the issue of divorce. What happens to the embryos when a couple is no longer a couple?

I’d venture to say that most married couples, particularly those that are making the choice to bank embryos, are not thinking about the theoretical demise of their partnership. Having said that, with a divorce rate as high as 60% in some areas, this is inevitably a scenario that will be presented to a couple contemplating this procedure. It forces them to look into the future, even if only imaginary, and determine the fate of their embryos if divorce or separation were on the horizon.

If a couple decides to store the unused embryos, and then later divorces, what happens if one or the other partner wants access to those embryos? What happens if you no longer want those embryos to be used, but you former partner strongly disagrees? What if a couple decides to allow the use of the embryos regardless of separation and/or divorce, and then find themselves in a difficult divorce where they can no longer stand to be in the same room together, let alone ponder the idea of co-parenting? How can they decide together what will happen to their embryos if they can’t even decide who gets custody of the patio furniture?

It’s hard to imagine theoretical scenarios becoming a reality when you’re making important future decisions and you’re a united front. Still, it’s an important part of the process that’s put in place to safeguard both parties in the event you’re not in a space where you can make these decisions together anymore. To learn more about the ethical and legal dilemmas in oncofertility, please visit the Oncofertility Consortium’s Social Science and Humanities Projects.

A few weeks ago, this blog discussed some of the ins and outs of cryopreservation, or highly specialized freezing of tissues for long-term preservation, in oncofertility. Scientists in this scientific field and members of the Oncofertility Consortium recently attended a meeting on this technology and our own Mary Zelinski has agreed to tell us about it through this blog.

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By Mary Zelinski, PhD-The keynote session on Cryobiology in Assisted Reproductive Technologies at the annual meeting of the Society for Cryobiology held in Corvallis, Oregon, July 24-27, was a big success.  A session of 7 oral presentations by an international cadre of speakers followed, on topics, including:

• Cryopreservation of individual macaque monkey follicles
• A role for oocyte aquaporins (proteins that regulate water flow in cells) during vitrification in mice
• The importance of the warming rate on developmental ability of vitrified mouse embryos
• Inexpensive methods for long-term embryo storage
• Thermal and mechanical damage of oocyte intracellular lipid droplets
• Osmotic properties of sperm membranes during cooling
• Ultra-rapid vitrification of human oocytes using micro-capillary tubes

Much lively discussion occurred after the various presentations, with major contributions by two distinguished founders of reproductive cryobiology, Drs. Peter Mazur and Stanley Leibo.

Those of us who were not trained as ‘classical’ cryobiologists were welcomed with open arms by members of the Society for Cryobiology.  The members are very diverse in their individual interests which made for some interesting lunch-time discussions.  For example, we were exposed to presentations on the importance of cryobiology for blood banking, plant preservation, freeze-drying of pharmaceuticals and food (those backpacking meals), cryopreservation of many different cell types and tissues, cryosurgery, biorepositories, biophysics, and mathematical modeling of ice formation (the latter two topics we definitely struggled with).

While socializing with the Society’s Secretary and past President, Dr. Andreas Sputtek from Hamburg, Germany, we agreed that a workshop on the principles of cryobiology would be useful for those who use this technique and follow protocols, but don’t really know why, or how to trouble-shoot or optimize their procedures based on sound cyrobiological principles.  He will present this suggestion to the Board of Directors and maybe this will be a feature of future annual meetings.

A lively BBQ at a beautiful park (complete with a soccer game among the young investigators and some ‘old’ ones, too) as well as a banquet at a local winery were opportunities for more friendly conversations.  We will definitely consider attending this meeting again to further expose cryobiologists to oncofertility specialists, and equally as important, oncofertility specialists to cryobiologists.  You never know when fruitful collaborations can develop.  Our own research would not be making advances without the advice from experts on our Cryobiology Advisory Board, who are members of this wonderful Society.

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Over the next few days, we will be providing an overview of the presentations from the 3 keynote speakers at this year’s meeting. If you would like more information or to become a member of the Society for Cryobiology, please visit their website.

Within one 24-hour period last week, I read two news articles on in vitro fertilization (IVF) that had completely opposite messages. One said that IVF success rates are upwards of 90% while the other said that less than 25% of women get pregnant after IVF. So what is the truth?

The Society for Assisted Technology (SART) is the principle professional organization for fertility specialists in the United States. Each year SART collects information from the nation’s fertility clinics, compiles them, and publishes them online. This allows patients and health care providers to both understand the fertility clinic success rates in their area and determine how that stacks up against the national average. For example, I was able to find out that in 2009, the most recent year available, there were more than 140,000 IVF cycles done in the US. Of those, 47% of cycles resulted in pregnancies for women under age 35 and 41% of cycles resulted in live births. So why does the media have such conflicting reports? Here is the fine print:

Age: The statistics I mentioned above were for women age 35 and younger. As in nature, older women are less likely to get pregnant from IVF and be able to carry a baby to term than younger women. For example, birth rates from IVF drop to 31% for 35-37 year olds, 22% for 38-40 year olds, 12% for 41-42 year olds, and 4% for women older than 42. Much of this age-related decrease is due to the fact that older women are less likely to respond to the hormones that cause the release of multiple eggs retrieved from a woman’s ovaries before IVF. This is good news for many oncofertility patients since younger women tend to respond better to hormones. One caveat for cancer survivors is that some cancers and their treatments may also affect the uterus and the ability to carry a child to term.

When comparing different fertility centers it is also important to note that the demographics of patients may vary between centers. In fact, the SART statistics include the following disclaimer,  “Caution: Patient characteristics vary among programs; therefore, these data should not be used for comparing clinics.” Besides age, differences in the overall health of the patients and diagnosis that causes infertility may affect success rates.

Number of Cycles: Another factor in IVF rates is number of cycles a woman undergoes and the SART database includes statistics on the success of each IVF cycle. Some women are able to participate in multiple cycles if the first one does not result in a baby. However, young cancer patients may not have time to undergo more than one egg retrieval cycle before starting fertility-damaging treatment. In addition, as the cost of IVF can be more than $10,000 and not all insurance covers treatment, multiple cycles can be financially prohibitive.

Multiple births: Between 15 and 30% of deliveries from assisted reproductive technologies result in multiple births, such as twins, compared with 1-2% in spontaneous pregnancies.  This is a result of implanting more than one embryo in a woman’s uterus after IVF. The industry standard is to transfer up to 2 embryos into a woman at a single time, although the American Society for Reproductive Medicine does authorize the transfer of more than 2 embryos for women over 38. Interestingly, implanting more embryos does not generally seem to increase the chance of pregnancy-just the chance of a multiple pregnancy. Since multiple pregnancies also increase the risk of complications it is important to examine the average number of embryos transferred at a clinic.

For all women, especially cancer survivors, it is important to keep in mind that a lot of factors go into the IVF success rates. Thus, many media reports can include information that is not completely accurate. Read additional mythbusters in oncofertility.

As a result of earlier detection and improved treatments, cancer survival statistics have dramatically increased. Some survivors may live with cancer as a chronic disease requiring periodic treatments, while others may go into long-term remission. As many survivors have learned, recovery is often not the end of the cancer experience. Toxic cancer therapies can leave you with late effect health issues that require lifelong surveillance and recovering from the social, emotional and financial trauma of cancer is a process that doesn’t always end with the last treatment.

After years of focusing on treating cancer, researchers, clinicians and advocates are now recognizing the unique challenges that survivors face once treatment has ended. This need has resulted in a number of cancer survivorship programs being developed across the country, dedicated to providing comprehensive and sustained after-care specific to cancer survivors.  Many of these survivorship programs are also designed to meet the needs of pediatric and young adult cancer survivors, who because of their young age at the time of diagnosis, struggle with physiologic and psychosocial effects different from those of older cancer survivors.

One such program, the Survivors Taking Action & Responsibility or STAR program found at the Robert H. Lurie Comprehensive Cancer Center works in conjunction with the STAR program at Children’s Memorial Hospital in Chicago to meet the needs of adult survivors of pediatric cancer.  Patients are referred to the STAR program five years after diagnosis if they remain in clinical remission and are directed to a network of supportive services specific to this demographic. STAR program survivors have a number of concerns depending on their particular treatment regime which often include fertility questions. The STAR program links these survivors up with reproductive specialists, allied health professionals and support groups to help navigate family planning.

The Cancer Survivorship Program at The Children’s Hospital of Philadelphia (CHOP) is another program that recognizes the important issue of fertility as it relates to long-term quality of life. The Cancer Survivorship Program at CHOP is very invested in offering fertility preservation options to the patients and families who are seen in Oncology. Oncofertility Consortium member and Reproductive Endocrinologist, Clarisa Gracia, MD, MSCE, sees many of the individuals in this program to offer potential ways to preserve fertility and to discuss family planning for individuals whose fertility has been compromised as a result of treatment.

For more information about nationwide survivorship programs, please visit the National Coalition for Cancer Survivorship. You can also visit the National Cancer Institute for a list of additional survivorship resources, including publications, studies, and statistics.

Summer Teacher Fellowship Team (L-R): Mark Prosise (Curriculum Developer), Amy Elliott, Kari Bodine, Miranda Bernhardt (Lab Coordinator), Sowmya Anjur, Kristen Perkins (Curriculum Coordinator), Nadia Reynolds (Fellowship Coordinator); not pictured: Qurrat Waheed. Photo by Eugene Galdones.

By Nadia Reynolds – The Oncofertility Summer Research Fellowship (OSRF), a program that brings science teachers and college undergraduates into the Woodruff Lab, was initiated in 2009 with the support of a two-year American Recovery & Reinvestment Act grant.  For the past three years, high school biology teachers and Oncofertility Saturday Academy (OSA) alumnae have been hired to work in the Woodruff Lab over the summer, through the OSRF program.  Two teachers and two OSA alumnae participated in 2009, and five teachers and three OSA alumnae participated in 2010.

This year, OSRF was supported by the main Oncofertility Consortium grant, and four teachers were selected to participate in the program.  The teacher fellows included: Sowmya Anjur, a veteran teacher for Illinois Math & Science Academy, Qurrat Waheed, a new teacher at Westinghouse College Prep, and Kari Bodine and Amy Elliott, both teachers at Lakes Community High School.  The teacher fellows learned about the science behind fertility preservation, the bioethical issues surrounding the field of oncofertility, and participated in the development of new high school science lab modules called the Northwestern University Biology Investigations in Oncofertility, or NUBIO.

NUBIO includes a set of labs that were developed via a collaboration between local high school teachers and researchers in the Woodruff Lab in an attempt to teach students basic biology skills and advanced biotechnology techniques through the context of cancer, reproductive science, and oncofertility.  The teacher fellows expanded upon the already developed NUBIO labs as individual summer projects, which included new units on cancer, bioethics, and patient case studies.

OSRF was a huge success this year, and we wish all of our teacher fellows the best as they return to their schools in the fall to pilot NUBIO!  And next week we welcome the OSA alumnae student fellows into the lab!

Yesterday I had the opportunity to tour the Supportive Oncology Suite with our Fertility Preservation Patient Navigator, Kristin Smith. The Supportive Oncology Suite is part of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University’s Maggie Daley Center for Women’s Cancer Care, located within Prentice Women’s Hospital. Prentice already has a reputation for being a first class facility with great technology and of course, an amazing view of Chicago’s lakefront.  Fortunately, I was able to see what all the fuss was about once I stepped out onto the 5^th floor and made a quick right into the space Kristin calls her “office.”

Once inside and past reception, I entered what is called the Healing Boutique. This relaxing atmosphere has a wall of windows looking out onto Lake Michigan with 2 chairs set up in front of a large mirror. It’s a space where cancer patients who have lost their hair to chemotherapy can come in and get a free wig fitting courtesy of the American Cancer Society. It’s also a space where patients can come in and find more holistic resources for cancer care. They can select from a variety of calming music to borrow while they are receiving their treatment in the infusion suite or several cookbooks to take home geared toward cancer patients, selected by a certified dietician. Patients can also just come here to relax or meet with the supportive oncology staff which includes psychologists, physical therapists, nurses and patient navigators.

Down the hall is a massage and acupuncture room where patients can receive up to 5 free treatments from a certified masseuse and/or acupuncturist. Often patients receive these services in the infusion suite while they are undergoing chemotherapy treatment. Across from that room are 2 offices housing psychologists that meet with cancer patients and survivors to discuss any questions, concerns or issues that they may be struggling with or need additional support with, including fertility concerns.  Finally, as you reach the back of the suite, there is a rehabilitation room where cancer patients can come every Wednesday and receive help with health issues such as lymphedema, a condition that occurs when lymph nodes have been removed or damaged and lymphatic fluid collects in those tissues, causing swelling. The Supportive Oncology suite serves as a one-stop-shop for cancer patients who can visit with their oncologist and receive rehabilitative services in the same place.

The 5^th floor, Supportive Oncology suite also houses weekly group meetings sponsored by Gilda’s Club Chicago for patients, survivors, family and friends. In addition, the dieticians in the supportive oncology suite will be starting a weight management/weight loss group beginning after Labor Day.  It will be an 8 week structured program focusing on healthy diets, exercise, food preparation and gradual, sustained weight loss open to any patients at Northwestern Memorial Hospital and may be of particular interest to cancer patients and survivors with fertility concerns.  Make sure to stop by and visit this great resource if you are in the Chicago region or visit the American Cancer Society to find resources in your own area.

In today’s world, more and more professionals are relying on smartphone technology as part of their daily lives. Healthcare providers are no exception, with apps being designed in lieu of cumbersome pocket-guides to meet their diagnostic and medical information needs. In oncology, access to the most recent information and tools available at the point-of-care is critical for both providers and patients in the fight against cancer.

In April 2011, the Nurse Oncology Education Program (NOEP) a non-profit project of the Cancer Prevention and Research Institute of Texas launched their first iPhone app called AvidNurse. AvidNurse includes a quick-reference guide to cancer screening recommendations, BMI conversions, pain scales, and medication calculators. Nurses in all fields of practice can provide personalized and in-depth medical information about a patient’s risks for breast, prostate, colorectal, and lung cancers. NOEP Director Joni Watson, MSN, RN, OCN says, “As trusted and respected healthcare professionals, nurses can be confident sharing information via AvidNurse on tobacco cessation, cancer prevention, detection, treatment, and pain management.”

Along with AvidNurse, smartphone apps including iSaveFertility, a free mobile resource for health care providers and their patients to help navigate fertility preservation, are helping to change the face of cancer care. Providers rely on the apps to give them the most up-to-date healthcare information which in turn benefits the patient by ensuring they are well-informed and in control of their cancer treatment.

To download AvidNurse for $3.99, please visit the iTunes store. To learn more about iSaveFertility, visit SaveMyFertility.org and download the free app.

Across the United States this weekend, Lesbian, Gay, Bisexual, and Transgender (LGBT) communities are celebrating the impact that LGBT people have on the world. Parades and other events from New York to Chicago to San Francisco commemorate the gay pride movement. The Oncofertility Consortium frequently hears about the needs of gay cancer patients, especially as it pertains to relationships, sexuality, and fertility. At the recent Cancer Survivorship and Sexual Health Symposium, Anne Katz, RN, PhD, discussed impediments LGBT people may face when diagnosed with cancer.

Katz referred to the “culture of heterosexism” in the medical community, including assumptions of male-female sexual relationships that can marginalize LGBT people. Often this occurs, not through intentional discrimination, but by through a lack of awareness and knowledge in the medical community. Part of this is caused by a paucity of research about cancer in the LGBT community and the research that does exist tends to focus on gay men and the AIDS epidemic.

In addition, once cancer patients do disclose their sexual orientation, medical providers may make assumptions about the patient’s desire to have children. A recent survey of oncologists and hematologists found that providers may not discuss sperm banking to all young male cancer patients. Their decision to offer fertility preservation revealed assumptions about patients needs based on characteristics, including sexual orientation.

So what can providers do to facilitate discussions with LGBT patients? Katz stated that small changes in behavior, such as referring to a patient’s “partner” rather than “husband” or “wife” opens the door. Other changes include providing same sex-oriented brochures in waiting rooms, making sure the office staff and medical forms are inclusive, and eradicating assumptions that gay men and lesbians are not interested in fertility.

Out With Cancer, a social network for cancer survivors is committed to improving the quality-of-life of LGBT cancer survivors through education about new clinical trials, personal stories, peer-to-peer mentoring, and events. They also work to educate the medical community of the specific needs of LGBT patients, such as discussions about fertility.