Friday, June 26, 2015

Science , Communities and Life with Cancer- The 3rd Annual AstraZeneca Bloggers Summit

On June 24th,  I attended the 3rd Annual AstraZeneca Bloggers Summit.  The day gave me an opportunity to meet other bloggers and to learn about social media and topics of interest to cancer patients and survivors.

What I learned at the Summit can be separated into three areas-science, communities and life with cancer.

The Science:
Photo provided by AstraZeneca
Deborah Torgersen-Paul, PhD (Executive Medical Science Liaison, AstraZeneca) presented the Evolution of Science and Understanding Cancer. Dr Torgersen-Paul began her presentation with a discussion of how the Human Genome Project changed our understanding of cancer.  She then went on to explained the role of oncogenes, tumor suppressor genes, cell death from chemotherapy and apoptosis( a cells normal death). She described driver mutations and how small molecules (such as Parp inhibitors) are used. She also discussed immunotherapy (which I heard a lot about while at the ASCO meeting this year). Some cancers don't stimulate the immune system as well as others so if we can find ways to boost our body's immune system the better we can destroy the cancer cells.  She also described work going on in immuno-oncology in which chemotherapy and immunotherapy are given together.  Lastly, she spoke of the research into circulating tumor DNA (ctDNA) , also  called a liquid biopsy,  and its role in screening for different cancers.

 After the presentation we took a tour of the Phase 1 laboratories at MedImmune where the Summit was held.
Oncology Bloggers at the Summit had the opportunity to see the MedImmune Phase1 labs.

Our Communities:

Photo provided by AstraZeneca
Ciaran Blumenthal (@momfluential) , a social media and marketing expert provided insight into "The Story of Us: Best Practices for Growing Communities Online". We ( the oncology bloggers)  were all at the summit because we share our story with a community of followers. Ciaran began by defining a community and the differences between online and "in real life" communities. She then talked about how characters can develop the community - content creators, experts, influencers and supersharers. She stressed the importance of the Hashtag in social media. From my own experience, the #gyncsm hashtag has been important in growing and sharing information among members of the gynecologic cancer community especially between our monthly chats. She then went on to discuss online platforms - blogs, Instagram, Twitter, YouTube, Pinterest and the strategies that can be used to grow a community. She stressed how content is key!

Life with Cancer:

Photo provided by AstraZeneca
Sage Bolte PhD, director of Life With Cancer,  presented the afternoon sessions geared toward different aspects of living with cancer.

Did you know that patients should be asked their distress level at each doctor visit? Studies have shown that 50% of all cancer patients experience a high level of distress ( emotional , mental, social, spiritual) during treatment. Lung, pancreatic and brain cancer patients report the highest levels. One in four cancer patients will experience depression. It has also been found that patients with lower quality of life experience more depression. When a person has situational depression it has been found that as the stressors patients experience subside so does the depression . When clinical depression occurs medication and therapy( cognitive or behavioral) may be prescribed.

Then Dr. Bolte talked about anxiety and fear.  I could definitely relate. To this day when I have to have a CA-125 test or CT scan my anxiety level shoots through the roof.  And it was good to see some of the things I use to calm down were listed in Dr Bolte's list of things to do to deal with anxiety.
  • Stillness- prayer, mediation, allow to grieve, acknowledge ( I have a favorite mantra.)
  • Motion- exercise, journaling, etc ( I love to paint when I am  anxious.)
  • Ignore- this is ok for short periods of time ( When I learned my friend had passed last month I did choose to ignore it for a few hours. )
For the last session of the day, Dr. Bolte talked about Sexuality and Intimacy. Health care providers are as reluctant as patients to discuss the impact surgery and treatment have on the sexual life of their patients. A number of sexual challenges occur when a person has cancer:
  • Cancer itself
  • Psychological Distress
  • Cancer Therapy
  • Side Effects
  • Alterations in relationships
One of the physical problems associated with the instant menopause many women enter into after gynecologic cancer surgery or due to cancer treatment is vaginal stenosis- a narrowing of the vaginal canal. There are a number of techniques ( dialators, lubricants ) that can be used when the condition develops.

As I was listening to Dr Bolte I noticed that the key word she kept using was communication. Cancer patients / survivors should communicate with their partner, spouse, family, friends and physician so everyone is aware of what you need and don't need. I can agree with that 100%.

One of the best parts of the Summit was being able to spend time with the other bloggers. Since I follow most of the bloggers online it was wonderful meeting them in person. Below is a list of my fellow blogger's names as well as links to their blogs and twitter handles. 

Katie Brown - Lung cancer
Website/blog: & 
Twitter @LUNGevity & @brownbeansprout

Dian “CJ” Corneliussen-James - metastatic breast cancer
Twitter @METAvivor

Katherine O'Brien - metastatic breast cancer
Twitter @ihatebreastcanc

Jennifer Campisano- metastatic breast cancer
Twitter @Jcampisano

Alana Ray Osborne  - general cancer
Twitter @alanaray40

Thank you AstraZeneca and MedImmune for such an informative day!

Every Day is a Blessing!

Tuesday, June 23, 2015

Natural Ways to Deal with Menopause and Hot Flashes Caused by Surgery for Ovarian Cancer - Guest Post by SHARE

I am pleased to provide my readers with this guest post by SHARE Cancer Support, a non-profit dedicated to providing support for those suffering from breast cancer or ovarian cancer.
Natural Ways to Deal with Menopause and Hot Flashes Caused by Surgery for Ovarian Cancer

There are many changes a woman’s body goes through during menopause; however, for those women who have just had surgery to treat ovarian cancer, the effects of instant menopause can be exacerbated. The most bothersome effect for many women is the onset of hot flashes. There are many treatments women can try to find some relief, and following are some of the most effective natural ones:

Keeping Cool
Exposure to cold can help relieve a hot flash – sipping cold beverages and maintaining a cool environment. Dressing in layers can help women shed clothing quickly to deal with temperature changes; this also applies to layering sheets and blankets at bedtime. Sleeping in the nude also helps women dealing with the hot flashes of menopause by dissipating the heat of night sweats. Using cooling pillows, fans and gel cooling packs can also help considerably.
As a part of traditional Chinese medicine, acupuncture has been practiced for over 4,000 years, and is based on the idea that vital energy flows through the body along 20 pathways, or meridians. When a pathway is blocked, the body is thrown off balance. The goal of acupuncture is to remove blockages.
Many women have found relief from hot flashes with acupuncture, and many believe it can provide patients with significant relief from the side effects of cancer and treatment. Hot flashes are reported by many to decrease in frequency and in strength. One study among women with hormone receptor-positive breast cancer showed that acupuncture had the equivalent effects of venlafaxine, an anti-depressant, and the effects of acupuncture lasted longer than those of the drug.
Change Your Diet
Many women find that dietary changes can help relieve hot flashes by limiting or avoiding foods that trigger them. Certain foods that can trigger hot flashes include caffeine, spicy foods, chocolate, and alcohol. Women can also try eating more plant-based foods that contain phytoestrogens to reduce hot flashes; these phytoestrogens resemble estrogen and are found in nuts, soy products, legumes, and oil seeds. While some women reported a decrease in the severity of hot flashes, some reported that the number of hot flashes did not decrease.
Managing Stress
Effectively managing and relieving stress can also be an effective way to deal with the hot flashes of menopause caused by surgery for ovarian cancer. Deep, paced breathing can reduce the frequency of hot flashes by 50%. Breath should come from deep inside the abdomen, at about six deep breaths per minute.
We’ve all heard of the “fight or flight” response – the term “relaxation response” is used to describe the opposite of the “fight or flight” response, and is characterized by a slower heart rate and measured breathing. Meditation, getting into a comfortable, relaxed position in a quiet room, and paced breathing are all effective at invoking this relaxation response, effectively decreasing the intensity and severity of hot flashes.
It’s important to keep in mind that just as every woman is unique, so too are her experiences with the methods used for coping with the symptoms of instant menopause after surgery for ovarian cancer. Your health care providers, your friends and family, support groups, and other support systems are excellent resources for learning more about the possibilities various treatments might be able to provide for you.

Thank you SHARE for these helpful tips! 
(Dee's Note: Please be sure to check with  your doctor before adding phytoestrogens / soy  to your diet.)

Every Day is a Blessing!  

Friday, June 12, 2015

ASCO Knowledge Part V: CancerLinQ

“Shoppers have Amazon.

Students have Google.

Oncologists will have CancerLinQ”


That quote appeared on a brochure I saw at ASCO and it peaked my interest in a special patient advocate session that was being held to introduce us to CancerLinQ, a health information technology platform. In January of 2015, ASCO and SAP, a software company teamed up to create a Big Data software platform. 

ASCO’s Chief Medical Officer, Rich Schilsky began the session by sharing some important facts with the advocates.
Only 3% of adults participate in clinical trials. 
Older adults (>65)  may not qualify to participate in clinical trials so their outcomes and adverse effects may not be known by others who also treat older adults. 
As more drugs get approved through the quick FDA approval process there is a need to capture the knowledge that is being generated as patients use these drugs.  
Currently cancer patient data is in “silos”( my word choice) at various cancer centers – NCI centers, academic centers, and community oncologist groups.

 CancerLinQ will gather data from patients from around the country into a secure, searchable database. 

CancerLinQ In A Nutshell
Electronic Medical Records (EMR) of cancer patients will be collected, “de-identified” and entered into the database. Once the data is entered an number of things can take place:
-Providers can compare the care they provide to guidelines.
-Oncologists can search the database for patients with similar attributes, diagnosis, mutations, and treatments. The oncologists can then with their patients decide which treatment plan is best.
-Researchers can look for patterns in the patient data

In the fall of 2015, the first version of CancerLinQ will roll out and include 500,000 individual records from 15 oncology practices in the US. 

For more information please visit

Every Day is a Blessing!

Thursday, June 11, 2015

ASCO Knowledge Part IV: Hashtags for Online Cancer Communities

As co-founder and co-moderator of the #gyncsm chat, I was so happy to see #gyncsm supporters Dr. Matthew Katz and Dr. Don Dizon  collaborating  with others to present the poster Disease-Specific Hashtags for Online Communication About Cancer Care at the ASCO meeting.

Cancer patients are online gathering information. Some active communities - #bcsm Breast Cancer Social Media) , #btsm 9 Brain Tumor Social Media) have been in existence since 2011 / 2012.
The #gyncsm was founded in 2013. In July of 2013 Matthew Katz and Patricia Anderson developed and shared online a disease-specific ontology (structured tags without pre-existing use). A finalized version was posted online in November of 2013 and included many of the hashtags talked about in this research.

Using the application program interface, Symplur Signals, the researchers analyzed data from 25 hashtags. They were able to classify the 100 most active users by user type, analyzed the number of tweets and the activity over the time period ( Second Quarter 2013 -Third Quarter 2014.

Poster Highlights:
During that time period researched 77,554 users tweeted with the disease-specific hashtags. 
Two tags, #BCSM and BTSM were the most active and were also used for the longest period of time.
The most active new tags were #aycasm, #gyncsm, #lcsm, #mmsm and #pancsm.
The most active top users were patients.

Overall users were 11% patients, 20% doctors, 3% non-doctor health care professionals, 32% individual, 30% health organization, 1% other and 3% spam.

Right side of the Disease-specific Hashtag poster
The stakeholders using the  #gyncsm hashtag were 33% other individuals, 30% health care organizations, 13% patient, 17% doctor and 7% non-doctor health care provider. As the moderator of the #gyncsm chat I found this data interesting and helpful in planning future chats.

The conclusion of the study was that hashtags could organize the online discussion of diseases and that hashtags can be used by a variety of stakeholders. Further study as to whether the Cancer Tag Otology improves access to accurate information or impact clinical patient outcomes needs to be done.

Every Day is a Blessing!

ASCO Knowledge Part III: Value Concepts in the Management of OC

This education session at ASCO covered a number of important topics early detection, personalized medicine, treatment choices and treatment costs. 

Early Ovarian Cancer : Can we find it, Can we stop it, Cane we afford it?

Usha Menon

Dr Menon practices in London , England. She  explained that ovarian cancer screening is a process . She noted that:

  • picking up low grade Ovarian Cancer (OC) is different that picking up high grade OC
  • 50% of OC  cancer arises in the fallopian tubes
  • OC takes an average of 4 years to develop, stage 1&2 disease size is < 1cm
  • Focus should be on finding low volume disease 
Her suggestions for following low risk women include:

  • CA-125 over time
  • Autofluorescense high resolution imaging
  • Ultrasound with microbubbles
  • ctDNA (circulating tumor DNA)
For high risk women Dr Menon recommended CA-125 every 4 months. In the ROCA
(Risk of Ovarian Cancer Algorithm) study 53% of the women had a CA-125 < 35 yet had invasive ovarian cancer. 

Personalized Treatment in OC:Fancy Science or Expensive Hype

Douglas Levine

There is a broad applicability of personalized medicine.

We have developed treatments for BRCA mutations so we know what to do with those but we are not too sure what to do when we learn about these other mutations. 
Some points Dr Levine made include:

  • Genomic scarring may occur. It is a mechanism of DNA repair which leaves a scar or signature . Those signatures can be used to classify tumors . 
  • Chemoresistant tumors contain an extensive number of alterations – including BRCA1& BRCA 2
  • There are other mutations (6% of the women have a pTen mutation) but we few to date are clinically actionable. In other words we know about mutations but there are no treatments currently available for that mutation.
  • Tumor tissue will change and evolve over time so it is important to profile the tumor in the time it needs to be treated.
  • ctDNA ( circulating tumor DNA) can be found in blood plasma. It may be able to be used to monitor for recurrence and response .

Crossroads in Treatment :Primary Treatment Choices , Consolidation, and Postplatinum Endgame

David Spriggs

Value is patient centric. It drives care during primary treatment. Treatment cost for patients is heavily loaded in 1st year (hospital / treatment /diagnostic /drugs) . The actual amount the physician charges is a very low percentage of that total cost.Primary surgery done by a gynecologic  oncologist increases  5 year survival of women with OC. (gynecologic -oncologist 38% , non gynecologist 30% )

Dr Spriggs presented a few new terms that I was unfamiliar with so I want to share them with you. The quality-adjusted life-year (QALY) measures the value of health outcomes. QALY combines the value of the length of life and quality of life in one number. Researchers are evaluating the cost of drugs using the ICER(incremental cost-effectiveness ratio) . From the ASCO DAILY NEWS article “Cost of Cancer Drugs Should be a part of Treatment Decisions” The estimated ICER range for the US is between $50,000/QALY and $200,000/QALY. Dr Spriggs in his presentation mentioned that the ICER for Olaparib a newly FDA Approved Parp inhibitor was $193,000 .

 Dr Spriggs noted that IP ( interperitoneal ) treatment continues to show an survival advantage and that consolidation treatment for OC using paclitaxel is more cost effective than bevaciszumab (Avastin)( Lesnock) .

Tomorrow’s post will report on ASCO’s CancerLINQ  a health information technology platform.

Every Day is a Blessing!

Wednesday, June 10, 2015

ASCO: Knowledge Part II, Managing OC in Older Women

This early Sunday morning education session presented information on how to manage ovarian cancer in the older women. Many women including myself do get diagnosed at an early age but the median age for diagnosis of ovarian cancer in women is 63 years of age.

Ovarian Cancer Surgery in the Older Woman : Keep It Short and Sweet
Dr Linda Duska

Chronologic age is not the same as physiologic age and age does not define the ability of a woman to undergo surgery or medical treatment. Retrospective studies have showed that women with ovarian cancer who have no gross residual disease after surgery have better outcomes. Older women overall have a worse prognosis stage for stage than younger women. The GOG182 study found that there was a lower chemo completion rate among older women and that toxicity was higher. It has also been found that for women of age 65 and older surgery complications increase and there is higher mortality. It was recommended that an assessment tool like ones for frailty be used before considering surgery in women over 65. It was found that frail women were more likely to be obese and to have post-op complications.

Ovarian Cancer in the Older Women : Less is More
Dr Kathleen Moore

Studies that focus on the older woman are limited. SEER Medicare data shows that the use of chemotherapy in women decreases as age increases. Women > age 70 have higher hematologic toxicity and stop treatment early. A study done in France showed that while in pre-treatment and during treatment the geriatric assessment showed that depression was a poor prognostic factor. A US study, GOG 273 (women age 70 +)  showed that dose modifications , timing changes and variations on chemo schedule may help the older woman complete chemotherapy.
The EWOC ( Elderly Women with OC) studies showed that chemo toxicity could be predicted by 3 factors – depression, dependence and performance status.  The MITO-5 and MITO -6 studies found that weekly carbo taxol was associated with lower toxicity and higher quality-of-life scores.

Clinical Trials in the Older Patient: Who,When and Why?
Dr William Tew

There are not many clinical trials for older patients.
Dr Tew stated that it is important to define who your patient is and what they want. He also recommended assessing functional age not chronologic age. The Cancer and Aging Research Group has developed and assessment tool that can be used before starting chemotherapy. The assessment tool looks at factors that can predict grade 3-5 toxicities in older patients. Some of the tool variables are age, impaired hearing, inability to walk a block, decreased social activity etc.

From this session I learned that:
  • better outcomes occur when older women finish chemotherapy- even if that means the dosage/timing needs to  need modified.
  • Depression and poor functional ability can impact treatment success
  • Age itself does not predict whether or not a woman can undergo surgery or treatment .
  • Assessment tools ( fraility / performance status) should be used before surgery

Tomorrow’s post will be on Value Concepts in the Management of Ovarian Cancer

Every Day is a Blessing!

Tuesday, June 9, 2015

ASCO: Knowledge Part I - Phase 1 Immunotherapy studies

While at the ASCO meeting I viewed a large number of posters  and listened to sessions reporting on the  results of new immunotherapy treatments.  Here are four  in the initial stages of testing that  caught my eye.  

Poster  Board:  #95    First ­in ­human  phase I/II  dose­ escalation  study  of  IMAB027  in  patients  with  recurrent  advanced  ovarian  cancer  (OVAR):  Preliminary  data  of  

phase  I  part. 
Ugur  Sahin,  MD

This study was done in a group of women (median age 64 years) that had been highly pretreated, meaning they had multiple ( 4 +) prior treatments for their disease. This Phase I/II study ( safety and dosage levels)  used IMAB027 is the first-in-class monoclonal antibody (mAB) directed against claudin 6 (CLDN6), a cancer stem cell marker. Claudin-6 is expressed in 55% of ovarian cancers. The 12 women in the study were all claudin 6+. There were some adverse events recorded but the majority were grade 1-2 (the lower the grade the less severe the adverse effect). The first signs of clinical activity were observed. 

Conclusions: This is the first clinical study to show effects of a therapy targeting CLDN6. Based on these preliminary Phase I data, IMAB027 may present a safe and well tolerated treatment option for women with recurrent, advanced OC. This warrants further clinical evaluation of IMAB027

Poster  Board:  #116  Phase 1 study of  IMGN853,  a  folate  receptor  alpha  (FRα )targeting  antibody­ drug conjugate (ADC) in  patients (Pts) with epithelial ovarian cancer (EOC)
and other  FRα ­positive  solid  tumors
Hossein  Borghaei,  DO,  MS

This Phase 1 trial included 23 women with platinum resistant epithelial ovarian cancer , 11 women with endometrial cancer as well as 1 cervical, 4 non-small cell lung cancer and 5 renal cancer patients. The study was done to determine safety, pharmacokinetics (PK – how the drug moves through the body), tolerated dose, and evidence of activity of IMGN853 in ovarian cancer or other FRa-positive solid tumors. 
“IMGN853 (mirvetuximab soravtansine) is a folate receptor α-targeting anti-body drug conjugate (ADC ) comprising a FRα-binding antibody and potent maytansinoid, DM4.”  
 In other words,  IMGN853 binds to Folate Receptor α on cancer cells and is internalized; the DM4 ( a tubulin-acting agent) is released through the degradation of the antibody and it disrupts cell division and causes cell death. Two different schedules were used (A) once every 3 weeks and (B) Days 1, 8, and 15, every 4 weeks. The adverse effects were mostly grade 1 or 2.  Initial results show partial and complete clinical response as well as  CA-125 response. In A schedule, 11 of 44 patients showed complete response(CB), 4/44 showed partial response(PR)  and 5 showed stable disease (SD) . Using schedule B,  5/15 showed CR, 1 PR, 4 SD. 

"Conclusion: With both schedules,IMGN853 demonstrates encouraging clinical activity in heavily pretreated patients during dose escalation with a manageable AE profile. A RP2D has been identified for schedule A, while schedule B continues dose finding."

The following results were presented in a session called
Intersection of  Mutanome and the Immunome on Monday afternoon.

Avelumab  (MSB0010718C), an anti­PD­L1 antibody, in  patients  with  previously  treated,  recurrent  or  refractory  ovarian  cancer:  A  phase Ib, open-­label  expansion  trial.                        
Mary  L.  Disis

Slide on Avelumab from Dr Disis' presention

Avelumab  (MSB0010718C) is a human anti-PD-L1 IgG1 antibody.  PD-1 is a programmed death -1 receptor and PD-L1 is it’s ligand ( protein) are targets that can help to reactivate  a person’s immune system.
The patients enrolled in this Phase 1b study were not chosen based on PDL-1 expression. All patients had recurrent ovarian cancer and had multiple prior treatments. 52% of the patients reported adverse effects mostly fatigue, nausea, chills and diarrhea . Of the 23 patients currently enrolled and followed for 2-8 months,  4 patients showed best overall response, 11 had stable disease and 4 had a shrinkage of their tumor of >30%. During the presentation it was reported that patients who had smaller tumor burdens had a better response.

"Conclusions: These data represent the largest reported dataset of patients with recurrent ovarian cancer treated with anti-PD-L1 therapy. Avelumab demonstrated an acceptable safety profile and is clinically active in this heavily pretreated ovarian cancer pt population."

Antitumor activity and safety of pembrolizumab in patients (pts) with  PD-­L1 positive advanced ovarian  cancer: Interim results from a phase Ib study                              
Andrea  Varga,  MD

Slide from Dr Varga's presentation

This was the second of two presentations on anti-PDL-1 immunotherapy treatments that I heard. Pembrolizumab is a monoclonal antibody against PD-1 and blocks the interaction of PD-L1 and PD-L2 . It also removes any blockage by the cancer cells of the body’s T-cells. T-cells are part of your body’s immune response to cancer. This study unlike the previous study with Avelumab was with women who were determined to be PD-l+. They received 10mg/kg of Pembrolizumab every two weeks. Twenty-six patients (median age 56) were enrolled.  Over 80% had prior treatments. There were no grade 4 or 5 adverse effects. Reported effects include fatigue, anemia  and loss of appetite. One patient had complete response, 2 had partial response and 6 had stable disease. 23% of the patients had experienced a decrease in their targeted lesions.

"Conclusions: PD-1 blockade with pembrolizumab is well tolerated and has antitumor activity in pts with advanced ovarian cancer. This preliminary signal for clinical efficacy will be further investigated."

Note:To learn more about pembrolizumab ( Keytruda) , which is approved for melanoma visit

These handful of studies are just the tip of the iceburg when it comes to targeted immunotherapy treatments for gynecologic cancers. I look forward to hearing the results of future Phase II and III studies.  

In the next post I will write about the session I heard on Managing Ovarian Cancer in the Older Patient.

Every Day is a Blessing!

Monday, June 8, 2015

ASCO - Connections Part II - Twitter

In the last post, I wrote about the  face to face connections I made with advocates , oncologists and researchers at the ASCO Annual Meeting. But connections were made in other ways too. I made connections with others through twitter as I tweeted with the #gyncsm and #ASCO15 hashtags.

There were many people at the meeting tweeting research results to their followers as can be seen by the tweet stats posted by @ASCO.

Look at how the tweets increased as the meeting progressed. Below is a graphic of  how the number of #ASCO15 meeting Tweeters, Tweets, Impressions and avg tweets/hr differed from the 2014 annual meeting. 

People were not only tweeting to their followers but doctors were also interacting with patient advocates at and about the meeting . Greg Matthews (@chimoose) was able to capture these interactions visually one day during the meeting.

The physicians are blue dots and the yellow dots are patients. The size of the dot represents how many times that account was mentioned. Check out the yellow dot in the upper right quadrant. That's me, @womenofteal,  and my interactions with others at the meeting.  Thank you Greg for allowing me to use the chart in this post. You can view/ enlarge the chart by visiting this page. This chart was based on research by MDigitalLife"s  Social Oncology Report -

Coming up next are the first of a number of posts I call "ASCO: Knowledge"  which will report on the many studies that were reported on at ASCO.  

Every Day is a Blessing!

Friday, June 5, 2015

ASCO 2015 Part I : Connections

One of the most memorable parts of my attendance at the ASCO Annual Meeting was meeting other patient advocates, ovarian cancer organization representatives and researchers and physicians.

It all began on Friday night when I attended the Focus on Research Scholar Dinner. I was a Focus on Research Scholar in 2011.  It was at that time that I first met Mary Lou Smith and Elda Rainey, Research Advocacy Network founders. It was so nice to catch up with both of them and I was happy to see Alumni Scholars from 2011 at the dinner continuing their advocacy. The class of scholars this year included breast, ovarian, kidney cancers and and advocate for those with brain tumors. The dinner was delicious and it was a special night as we all honored Mary Lou for the Partners in Progress ASCO Award she would be receiving.

Before I left for ASCO I reached out to a few of the other advocates to see if we could meet. I was so happy to meet Janet Daily-Freeman ( #lcsm), Georgia Hurst (@shewithLynch) and Dan Dubin( @AliveandKickn ) in the enormous Exhibit Hall.
Georgia Hurst, Dan Durbin and I meet at the AmbryGenetics booth.

On Saturday evening, ASCO held a "Tweet Up" for the health care professionals  as well as advocates and others tweeting from the meeting.  I was live tweeting from the meeting for the #gyncsm community and this event was a must do on my calendar. I am so happy that I was able to meet so many of the doctors and researchers I interact with on twitter. After a year and a half working with them on  #gyncsm chats,  I finally got to meet health care moderators, Dr Don Dizon and Dr. Merry Markham and Dr Katz whose support of #gyncsm is so appreciated.  Also in attendance were Dr Attai, #bcsm co-moderator, whose warm welcome of me to the #bcsm chat planted the seed to create a chat for gynecologic cancer survivors.
Finally meeting Drs. Markham and Dizon, #gyncsm health care moderators

Late Sunday morning, I met oncologist, Ophira Ginsberg. We also follow each other on Twitter and met through the #gyncsm chat. Ophira's work has concentrated on ways to improve global cancer control and equality in women's healthcare. She has initiated a program of population intervention  and training in Vietnam, Bangladesh, and sub-Saharan Africa. I know that the impact of ovarian cancer as well as other gynecologic cancers is a global problem. There are countries that have 0 CT machines , yes,  you read that correctly ZERO machines.( I think of what might have happened if a CT machine did not pick up my recurrence.) In the future I plan on sharing the work that Ophira and others are doing to improve the healthcare of women with gynecologic cancers worldwide.   

Throughout the meeting I had the opportunity to talk not only to advocates from the US but also advocates from Egypt, Brazil, Nigeria and Japan. Our goals and motivations regardless of disease site or geographic location were the same: to raise awareness, to increase research to find screening tests, to develop more effective treatments and to support survivors. We just have to tailor those goals to our country’s needs. 

I had the opportunity to speak to researchers and oncologists from France, Canada, Netherlands, Belgium and Italy. The poster sessions were the best time to have more in depth conversations with the presenters about their work. I was so happy to see trials designed to included participants and sites in various countries. 

I introduced myself and handed out the #gyncsm business card to many oncologists and researchers at the meeting. But what a nice surprise when Roisin O'Cearbhaill, a researcher from Memorial Sloan Kettering came up to me and said " Hello , I met you at the Kaleidoscope of Hope Dinner. I am so glad to see you at the meeting". 

Yes, advocates are welcome at medical conferences.  

Every Day is a Blessing  

Wednesday, June 3, 2015

ASCO 2015 - Connections and Knowledge

Last night I returned home from attending the ASCO Annual Meeting in Chicago. The theme of the 2015 meeting was Illumination and Innovation. As a patient advocate who attended the largest oncology meeting in the world ( 30,000+ people) my theme for the meeting would be Connections and Knowledge.

Over the next week or so I will write a series of posts about my experience and the knowledge I learned. The topics will be:

Patient Advocates and Physicians
Hashtag Communities

Big Data (CancerLINQ)
Value / Cost of treatments
Clinical Trials (Patient Reported Outcomes)

Please be patient as I gather the enormous amount of information I heard and posters I saw over the five days of the meeting and condense it into a reasonable length post. This will not be an easy task but an important one because what I heard gave me hope.

Every Day is a Blessing!