Friday, September 15, 2023

Ten Years as a Community and Chat

On Wednesday, September 13th the #gyncsm Community celebrated it's Tenth Anniversary as a community and Chat.

It seems like yesterday when after taking part in a #bcsm chat on Recurrence I posted this to Twitter.  

 

Shortly after, Christina, a ovarian cancer advocate in Texas and I, an ovarian cancer survivor in New Jersey joined together to establish an online community. At first we were going to concentrate on ovarian cancer only but decided that our community should be open to all women diagnosed with gynecologic cancers. So the #gyncsm ( gyn cancer social media) community was born. 

We wanted to insure that the information and support we provided was accurate. We reached out to gynecologic oncologists,Dr D Dizon, Dr R Boulay, and Dr MJ Markham who agreed to be our first  Health Care Moderators. Knowing that we might chat about mental health issues or that some topics might cause emotional distress, we invited psychologist, Ann Becker-Schutte, Ph.D. to join us. As their practices and professional activities increased for our original HC Moderators, we were happy to have Sarah M. Temkin, MD and Shannon Westin, MD, MPH take the place of our original moderators. From the very first chat we have had the support of Cervivor, SGO and Dr Matthew Katz, who helped us draft our Tweet Disclaimer.

Our community has chatted about the risks and treatments of all the gyn cancer types from the most common to the most rare. We discussed advocacy, parenting with cancer, working while having cancer, the role of the caregiver, communicating with your health care team, genetics, personalized medicine, survivorship, clinical trials and many chats on emotional health. We've had guests present on health equity, how to find a clinical trial, how to become a research advocate and so many more. Since 2014, we have highlighted research results presented at the ASCO and SGO annual meetings. And yes, we also spoke about recurrence, the topic that sparked Christina's and my initial Twitter exchange.

Our logo as well as this blog has evolved over the years with our latest version being launched at our 100th Chat in March 2023. 


 

 

Through the years our community has been involved in a number of research efforts. We have been  co-authors on several published research articles covering the needs of women diagnosed with ovarian cancer, caregiver support services, patient needs when considering a PARP inhibitor as well as a number of papers on social media, hashtags and cancer communities.  You may find links to the article on our blog's Publications page.

If you have been a part of the #gyncsm community at any point through the years we would love our feedback by answering these questions:

Question 1 : Approximately how long have you followed the #gyncsm hashtag? What has the cancer community on this platform meant to you?

Question 2: How are you feeling about the cancer community on this platform now? Do you have back-up plans if/when this platform is no longer a good fit for you?

 Question 3: What chat topics have you found most helpful? What topics would you like #gyncsm to cover in future chats?

Feel free to respond in the comment box below or on Twitter https://twitter.com/gyncsm/status/1702737477868417061

It has truly been a wonderful experience working with Christina and all our gyn oncs and supporters. This community has allowed my work as an advocate to grow far greater than I ever imagined. Thanks everyone. 

Dee

Every Day is a Blessing!

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Friday, July 28, 2023

The Importance of Obstacles - 18 Years Later

For the past month or so, I have been on the road traveling and helping family move. As I was catching up on e-mail, I read one from Laura Davis which included writing prompts. I found the perfect prompt for this blog post.

The Importance of Obstacles

“Success is to be measured not so much by the position that one has reached in life as by the obstacles which (s)he has overcome.” —Booker T. Washington 

Make a list of the obstacles you have overcome in life. Choose one to write about in detail.

____________

It was 2005 and I was teaching AP computer science, my grown children, my husband and I were doing well. I was a wife, mother, sister, aunt and friend. These last roles remain but my other "job" description has change due to one - dare I say huge - obstacle that entered my life on July 29, 2005. 


I woke up from surgery to learn I had stage 3 high grade serous ovarian cancer. Well, that was earth shattering news to say the least. I call it my weak in the knees period of my life - a feeling of not knowing how long or what my future held. 

My gynecologic oncologist told me she would do everything to make me well and together we put together a plan. But I will be honest, I took to Dr Google and read everything I could about ovarian cancer. I bought books and read journal articles. I'm happy that I have always loved science because it came in handy when I was learning about a subject I never thought I'd need to know about. I learned that at stage 3,  I had a 30% chance of surviving 5 years. Holy Cow, those were not good odds. I had just turned 50 years of age and I might not make it to 55. Everything changed!  I refused to buy a winter coat that year because I thought it would be a waste of money. I couldn't plan the next two weeks forget about long term plans. 

There were a few different ways I could overcome this obstacle. I considered and chose to participate in a Phase 1 clinical trial. I researched the use of selenium with carboplatin and taxol. It  meant more and longer days at my cancer center. My husband and children supported my participation in the trial and along with family members and friends rallied around me. They were ready to help at a moment's notice with meals, walking the dog and keeping my spirits up.

I experienced many side effects during treatment. The duo of carboplatin and paclitaxel were tough on me. There was bone pain and I lost my hair. I dealt with neuropathy, from  tingling in my toes to where it felt like they were being stabbed by a knife. Instant menopause and subsequent hot flashes meant putting on sweaters, taking then off 10 minutes later.   Then there was the constipation and nausea. The drugs for nausea actually kept me from vomiting which was the goal and I am thankful they worked. Each of the nine cycles brought three days of unbelievable fatigue. I was unable to get out of bed. I didn't have the strength to hold up a book or magazine and even if I could hold them up, I was unable to concentrate on what I read. At one point I wanted to stop. The obstacle was too large.

In all those trips to the cancer center,  I had not meet another women with ovarian cancer. I needed to hear from a long term survivor. I reach out to Cancer Hope Network and spoke to a woman who was a five year survivor.  She gave me hope. I started making connections with other women through Kaleidoscope of Hope Ovarian Cancer Foundation and other ovarian cancer foundations in my state. Those connections continue to be priceless to me.

When I needed a PET scan to determine if the lesions on my liver were cancer I faced another type of fight. Arguing for a scan when you are in the midst of chemo is a challenge.  At the time PET scans were only approved for lung cancer patients not ovarian cancer patients. I eventually had the PET scan which showed the lesions were not cancerous and I was finished with treatment.

At a follow up visit in the Spring of 2006, my gyn onc told me about the LiveStrong Survivors Summit being held 6 months later. I applied and was accepted. That Summit empowered me and gave me skills to further overcome the obstacle. I became a cancer advocate.

Today one recurrence, countless CA-125 blood tests and 25 + CT scans later,  I am  celebrating 18 years as a survivor. I took my biggest obstacle and turned it into catalyst to become an ovarian cancer research advocate. 

I co-founded the #gyncsm (gyn cancer socila media) community on Twitter, wrote a book with my Twitter friend, Dr Don Dizon. I am a member of my cancer center's Scientific Review Board and serve on the NCI's Ovarian Cancer Task Force. I've presented at the ASCO and SGO Annual Meetings and  I've received a number of advocacy awards. One of the activities I enjoy the most is offering peer support to women diagnosed with ovarian cancer through Cancer Hope Network.

I still worry about a recurrence, two toes are still numb from neuropathy, and I have learned to not multi-task otherwise chemo - brain rears it's ugly head. But I am here living my life.

In no way am I saying that my experience was a "gift".  Instead I am saying that my cancer diagnosis , my obstacle had a tremendous impact on my life - both bad and good.

I am sure without this obstacle, my life would have been different. I wonder how different. Would we have ever moved to a different town, would I have ever done agility with my dog, would I have ever traveled and been invited to speak?  Would I have supported other women in the ways I have? Maybe not. 

I am truly blessed to  have been treated by the skilled gyn oncs at the Rutgers Cancer Institute of New Jersey and to have the unending support of a dear husband, children, grandchildren, family and friends. Thanks everyone!


Dee

Every Day is a Blessing!

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Friday, June 9, 2023

ASCO23 Day 4 (6/5/23) Gyn Cancer Posters, Poster Discussion session & Misc topics

Note: Due to the number of Tweets embedded in this post the page may take some time to load.  

Monday's sessions included the Gyn Cancer Poster session and the Poster Discussion session. There were a few other sessions that I found interesting and are included at the end of this post. 

Poster Discussion Session

Initial efficacy and safety results from ENGOT-ov60/GOG-3052/RAMP 201: A phase 2 study of avutometinib (VS-6766) ± defactinib in recurrent low-grade serous ovarian cancer (LGSOC). ABSTRACT 5515
 
Randomized phase 2 study of gemcitabine with or without ATR inhibitor berzosertib in platinum-resistant ovarian cancer: Final overall survival (OS) and biomarker analyses. ABSTRACT 5512
"Gemcitabine/berzosertib did not significantly improve OS versus gemcitabine alone. Pts with PFI≤3 months and pts with RS-low tumors may derive a survival advantage from addition of berzosertib to gemcitabine in the platinum-resistant setting. Clinical trial information: NCT02595892."
 
Correlation of cyclin E1 expression and clinical outcomes in a phase 1b dose-escalation study of azenosertib (ZN-c3), a WEE1 inhibitor, in combination with chemotherapy (CT) in patients (pts) with platinum-resistant or refractory (R/R) epithelial ovarian, peritoneal, or fallopian tube cancer (EOC). ABSTRACT 5513
"Study assessed azenosertib + paclitaxel (PAC), carboplatin (Carbo), gemcitabine (GEM), or pegylated liposomal doxorubicin (PLD) in pts with metastatic high-grade serous EOC after ≤2 lines of chemotherapy. Patients with Cyclin E1 overexperessing tumors, a subgroup with suboptimal benefits from chemo , demonstrated significant imporovements in ORR and PFS vs patients with tumors having low expresssion."

 
A phase II trial of palbociclib combined to letrozole after progression on second-line chemotherapy for women with ER/PR-positive high-grade serous or endometrioid ovarian, fallopian tube, or peritoneal cancer: LACOG 1018.  ABSTRACT 5541
"Palbociclib combined to letrozole demonstrated a significant efficacy in terms of PFS rate at 12 weeks (63.4%) and CBR (71.8%), with no new safety concerns in women with recurrent advanced and metastatic hormone receptor-positive ovarian cancer. These results warrant further investigation of palbociclib plus letrozole in high-grade ovarian cancer."
The Normal Risk Ovarian Screening Study (NROSS): Twenty-one year update. ABSTRACT 5522
"A total of 7,856 healthy postmenopausal women were screened annually for a total of 50,596 women-years in a single arm study (NCT00539162). Serum CA125 was analyzed with the Risk of Ovarian Cancer Algorithm (ROCA) each year....An elevated ROCA, characterized by a significantly rising CA125, prompted referral of 2% of participants to transvaginal sonography (TVS) each year and required only 2 operations to detect each case of ovarian cancer, indicating that CA125 used in this way is adequately specific for effective screening.
Posters
Here are a few posters I found interesting that were not part of the discussion session. 

Efficacy and safety of niraparib maintenance therapy in patients with newly diagnosed advanced ovarian cancer who had measurable residual disease: A post-hoc subgroup analysis of the PRIME study. ABSTRACT 5562

"This study aims to report the efficacy, including antitumor activity, and safety of niraparib maintenance therapy in patients with measurable residual disease MRD after first-line platinum-based chemotherapy1LCT from the phase 3 PRIME trial. ...  Median PFS (95% CI) was 22.3 (8.7–not estimable) months with niraparib versus 8.3 (5.6–11.0) months with placebo (hazard ratio, 0.36; 95% CI, 0.19–0.71)."


Circulating tumor DNA (ctDNA) as a marker of residual disease and recurrence in resected stage I-IV epithelial ovarian cancer (EOC). ABSTRACT 5553
ctDNA detection after ovarian cancer cytoreduction identifies pts at very high risk of recurrence. Pts with BRCA mutations were more likely to have negative ctDNA post-op. The role of ctDNA in guiding neoadjuvant and adjuvant therapy to improve outcomes, warrants further investigation. Clinical trial information: ACTRN12617001119381.
 

Safety and efficacy of PIPAC in ovarian cancer patients with peritoneal metastases: A first-in-US phase I study.  ABSTRACT 5554

"Pressurized intraperitoneal aerosolized chemotherapy (PIPAC) is a novel IP drug delivery method that optimizes tissue penetration depth and drug distribution, to treat recurrent peritoneal malignancies. 

PIPAC with cisplatin/doxorubicin in platinum-resistant ovarian cancer is well tolerated. Intraperitoneal responses were seen in a subset of low-grade serous ovarian cancer patients, which may warrant further study."



 

Miscellaneous ASCO topics: 

Patient Centered Research

Solid tumor research

Destiny Pan-Tumor-02
Her-2 expressing tumors -trastuzumab deruxtecan (T-DXd)

 

This brings my highlights from the ASCO 2023 Annual meeting to a close. I hope to see everyone in person next year!

 Dee

Every Day is a Blessing ! 

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Thursday, June 8, 2023

ASCO23 Day 3 :Parp Inhibitors & Late Breaking Abstract session

While there were fewer gynecologic cancer sessions on Day 3, Sunday June 4th there were two important sessions regarding the use of PARP inhibitors and trial results for a drug to teat  platinum resistant ovarian cancer drug which may be change practice.

Parp Inhibitor Optimal Selection and Toxicity Management 

Dr Tew - Status updates on Parp use


Dr Friedlander- Real World Experience in Managing PARP Toxicities 


 


 


 Susan Feinberg  (FORCE) - Living on a PARPi 


 


Late Breaking Abstract Session  
Mirvetixumab in Folate Receptor Alpha positive platinum resistant ovarian cancer

I wish I had been able to be in the room when this session took place. I could feel the excitement from the Tweets being posted.  This is the first trial to show overall survival benefit in platinum resistant ovarian cancer! This is practice changing. 

 Here is a slide of the overall survival  MIRV 16.46 months vs investigator choice of treatment 12.75 months.


 Stop by tomorrow for highlights from my last day of ASCO - Day 4 . 


Dee

Every Day is a Blessing

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Wednesday, June 7, 2023

ASCO 2023 Day 2: Opening Session, GTD Panel , Gyn Cancer Oral Abstract session

Note: Due to the number of Tweets embedded in this post the page may take some time to load.

Saturday was a busy day at #ASCO23. For me it included live sessions, on-demand sessions and two meetings. 

 Opening Session

 

 

 

The session finished with a chat with the Surgeon General, Dr Vivak Murphy who discussed a range of topics. 


 Case-based Panel - GTD

This session which talked about a Gestational Trophoblastic Disease ( GTD) a rare gyn cancer. I viewed on-demand the day after the presentation. 


Oral Abstract Session

Cervical Cancer - Keynote 826

 

 Ovarian cancer

 Ofranergene obadenove + weekly taxol

GOG 3025 -durvalumab + olaparib + bevacizumab

Luveltamab tazevibulin (STRO-002)


Endometrial Cancer 

 

Did I miss any important gyn studies? Please note them in the comment box. Thanks

Check back tomorrow for highlights from Day 3. 


Dee

Every Day is a Blessing!

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Monday, June 5, 2023

ASCO 2023: Day 1- Cervical Cancer, HIPEC, Antibody Drug Conjugates in Gyn Cancers

Note: Due to the number of Tweets embedded in this post the page may take some time to load.

This year I attended #ASCO23 virtually. Some of the sessions were available live but some were on-demand usually a day later. Many of the Tweets I will share in the next few posts were from those I follow who attended those sessions in person. 

Friday, June 2,2023

Clinical Science Symposium  

Cervical Cancer 

An international randomized phase III trial comparing radical hysterectomy and pelvic node dissection (RH) vs simple hysterectomy and pelvic node dissection (SH) in patients with low-risk early-stage cervical cancer (LRESCC):  A Gynecologic Cancer Intergroup study led by the Canadian Cancer Trials Group (CCTG CX.5-SHAPE).       Abtract LBA 5511


 Read more about the above study at https://www.cancer.net/blog/2023-06/asco-annual-meeting-2023-less-extensive-hysterectomy-effective-early-cervical-cancer-and-adding?cmpid=ks_cancernet_net_awareness_sno_facebook_all__glob_060223____aware_photo-text_ 

 

 

 HIPEC in Ovarian Cancer

Final survival analysis of the phase III OVHIPEC-1 trial of hyperthermic intraperitoneal chemotherapy in ovarian cancer after ten year follow-up. (Sonke  abstract 5509) 
Median follow up of 10.1 years. "One hundred and eight patients (87.8%) in the surgery group have died as compared to 100 patients (82.0%) in the surgery-plus-HIPEC group.Median recurrence-free survival was 10.7 months in the surgery group compared to 14.3 months in the surgery-plus-HIPEC group (HR, 0.63; 95% confidence interval [CI], 0.48-0.83; stratified P<0.001). This study provides the first long-term survival analysis of HIPEC in ovarian cancer and confirms the benefit of HIPEC in patients with primary stage III epithelial ovarian cancer undergoing interval cytoreductive surgery. "                                   Overall survival 44.9 with HIPEC versus 33.3 no HIPEC. 
Hyperthermic intraperitoneal chemotherapy in platinum-sensitive relapsed epithelial ovarian cancer: The CHIPOR randomized phase III trial. (abstract 5510)
"The CHIPOR multicentric randomized phase III trial (NCT01376752), conducted in 31 institutions, enrolled patients with a first platinum-sensitive relapse (platinum-free interval of ≥6 months) of EOC. Patients were treated with 6 cycles of platinum and taxane based CT ± bevacizumab, and those amenable to a complete cytoreductive surgery at the end of CT were enrolled and randomly assigned to receive HIPEC (cisplatin 75 mg/m² at 41°C for 60 min) or not. HIPEC significantly improves OS and peritoneal PFS of women with first platinum-sensitive relapse of EOC treated with second-line platinum-based CT followed by secondary complete cytoreductive surgery."
 
 
Education Session 
 Antibody Drug Conjugates: New Opportunities in Gynecologic Cancer

 


 




Dee

Every Day is a Blessing!

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