Wednesday, February 10, 2021

February 10, 2021 Communication and Support Chat

We were happy so many in our community could join us for our first chat of 2021. Communicating With Your Health Care Team and Asking For Support drew twenty-seven participants from the US and internationally, too. You may find the transcript here and analytics here

Here is a small sample of the responses to our topic questions. 

T1: How would you describe what constitutes good communication with your health care team?

T1 Good communication means multi-discipline coordination, collaboration, and decision making to include the patient, innovation, and caregivers.

T1: Allowing time for questions & being responsive to questions. Getting results in a timely manner.

Our @CancerHopeNet survivors often tell me that it's critical they're communicating WITH their team, not just being dictated to (intentionally or unintentionally). Respect for personalities, beliefs and cultures is critical.

T1: Feeling heard and seen. Feeling understood. Would be amazing to feel that coordination would happen between different doctors/specialists/pharmacies with burden not all on patient for care coordination

From physician perspective, overall goals are explained at a patient centered level, daily goals are discussed with nursing staff, residents have clear idea of plan, and most important the patient feels heard and at the center of it all

T1: Good communication involves not just listening but also taking nonverbal cues from patients during the conversation. It's also very important for patients to feel comfortable asking questions to their attending and go home with a clear understanding of the situation

T2a: How has communicating with your team changed during your cancer experience?

T2: It’s been less frequent. I recently transitioned to the Nurse Practitioner. Feeling a little disconnected. Grateful to be where I am though 

T2 A I learned to not be shy and speak up and ask for things and that helped my team know what I needed help with.

T2: I think at first you don't know what questions to ask. I think that is when hearing from your doctor about patient organizations and peer support might best help. Many have a "list of questions" and FAQs. Getting that info early can help guide what to ask dr. 

T2: I haven't tried any telehealth appointments yet, but I hope they are here to stay where they make sense. i.e. that insurance will keep covering... 

T2b: Has communication between you and your healthcare team been impacted by the Covid-19 pandemic?

T2bCOVID has added such a layer of complexity to good communication! Everyone is so stretched when you call it's hard to get to the right person and if someone calls back you're repeating your story over and over or clearing up misunderstandings. 

T2b. #gyncsm this hasn’t impacted me directly: but those in my life have had repeat treatment paused. Difficult to get hold of consultant but nurse team been great

T2b: I think that telemedicine now plays a bigger role in patient consultations, but where I come from it's not readily accessible to all. And now, you have to be extra observant with patients' eye expressions since that's all you can see.

T3: Have you discussed clinical trials with your provider? How was that information communicated? Did you bring up trials or did your provider?

T3 Physician recommendation is the most important factor in patients decisions to enroll onto a #clinicaltrial. If your doctor doesn't discuss this option consider asking and/or getting a second opinion.

T3: It is tough to squeeze lots of stuff into appointments and small communication outside of appointments. Clinical trials and supportive care and side effects - so much beyond treatment to ask about and plan out.

T3 @cure_magazine shared some insight into Why it is never too soon to ask about trials . https://www.curetoday.com/view/why-it-s-never-too-soon-to-consider-clinical-trials-as-a-treatment-option

T4: What would you suggest to your health care team or health care system that would improve communication? What would you suggest to patients to improve communication?

T4: to improve communication I would recommend that there is frequent communication between the gyn onc & med onc. I would recommend that doctors not be intimidated by patients who like to ask questions.

T4: I'll raise my hand and say I don't always "do my homework" and go into a medical encounter with clear goals about what I want to discuss or walk away with. I need to block some time between appts to focus.

T4. #gyncsm Get a patient advisory group / lived experience group together online and ask them how communication can be improved. #coproduction is possible even during #covid19

T4: I’d suggest asking patients what they want & need & making sure patient feedback is included in notes. Often what patient might define as an adverse event or not differs than medical team assessment. We need to record what patient’s say.

T4: @gyncsm My oncologist is often surprised I’m in groups with 100s to 1000s of other patients comparing symptoms, side effects, & treatments with people all over country & world. We are influenced by what other patients say about a drug, for ex., not just clinical studies

T4. Timely updates to patient records and a patient survey immediately after a visit. I'd also ask that teams not see innovation as the enemy of coordination.

T4: I think spacing out appointments has helped me give enough time for each patient consult so that I can still answer questions. I also tell my patients to list down things they forgot to ask and tell me on the next visit. 

T4: Also, I appreciate it when patients ask me about what they find on Google rather than acting on these info directly and possibly getting into harm's way. More and more patients are on the Internet and doctors should be prepared to handle these "external" info. 

T5: What is the best advice you have received to communicate your need for support - emotional or physical - with your health care team?

t5: That’s a tough one. I think in life, I’ve always been a fighter. And I also want to understand things. I’ve always advocated for myself and I think the best advice is to continue to always advocate for yourself. 

T5: #CervivorAmbassador Becky Wallace shared her advice in this blog post. cervivor.org/the-power-of-s… 

T5 #gyncsm That the National Health Service #NHS IS STILL OPEN during #covid19 don’t delay if you have any concerns

T6: How do you prepare for visits with your health care team?

T6 I keep a medical journal. My prep includes writing down questions, asking about meds, and general health questions if I've noted any adverse reactions.

t6: I keep a running “note” in my phone for my next appointment. I list any questions that I would like answered or any issues I’ve been having so I don’t forget to mention. #gyncsm 

T6: Keep a notebook and write down questions in between appointments so you don't forget them. Ask who is on your team and write their info. My little notebook was filled by the time I finished 9 cycles. Ask for copies of all test results. which could lead to more ?'s. #gyncsm

Questions! Questions! Lists of things I need to remember to ask.

We end out chats with TIL standing for Today I Learned. Here are just a few examples from tonight's chat. 

TIL Good communication between the patient and the healthcare team is one of the keys to effective care delivery and patient satisfaction. It's a crucial area that should be actively worked on by all stakeholders. #gyncsm

til: How doctors have been impacted by COVID & how it’s been more difficult to “read” patients & make sure they are heard. 

TIL #gyncsm made me remember how important #PeerSupport is right now

 

Christina and I look forward to seeing you at the next #gyncsm chat on Wednesday, March 10, 2021 at 8pmET when we’ll discuss “Disparities in Gyn Cancer Diagnosis and Treatment”. See you all then!

Dee 
#gyncsm Co-founder
 
 
Related Reading:
ASCO Patient Clinician Guideline 

@canceradvocacy Survivorship Toolbox-Communication
https://canceradvocacy.org/resources/cancer-survival-toolbox/communicating/

@NPAF_tweets Skilled Communications in Shared Decision Making: A Tool Kit for Health Care Providers and Advocates
https://www.npaf.org/patients-and-caregivers/skilled-communications/

Assessing communication tool @RTI_Intl for researchers physicians
Researchers have found a link between PCC and greater patient satisfaction, treatment adherence, and quality of life. https://www.rti.org/impact/patient-centered-communication-cancer-care-instrument

OC survey Reveals Need to improve patient-provider communication
Resources before during and after appointments:
https://www.ourwayforward.com/ovarian-cancer-support-and-resources/communicating-with-hcp-team

Our Way Forward Survey Results
https://www.oncnursingnews.com/view/ovarian-cancer-survey-reveals-need-to-improve-patientprovider-communication
Our Way Forward - https://www.ourwayforward.com/

Nurse / patient communication
https://www.oncnursingnews.com/view/patient-nurse-communication-is-key-in-ovarian-cancer

Doctors need to talk to each other
https://conquer-magazine.com/issues/2020/vol-6-no-6-december-2020/1441-poor-communication-affects-patients-doctors-should-talk-with-the-patient-and-each-other

Telehealth
https://conquer-magazine.com/issues/2020/vol-6-no-3-june-2020/1284-telehealth-can-help-patients-with-cancer-during-covid-19-but-does-not-replace-in-person-treatments

Wednesday, February 3, 2021

Communicating with your Health Care Team & Asking for Supportive Care

 

It's been a few years since the #gyncsm community has spoken about how to communicate effectively with your health care team. Many things have changed since then. There are more treatment options for women to consider and discuss with their gynecologic oncologists and other oncologists. More women are asking about enrollment in clinical trials. And the pandemic has caused a change in the way patients and their healthcare team talk, from face-to-face meetings to telehealth visits and phone calls. Many women need emotional support and palliative care to help alleviate side effects from treatment but are unsure how to go about requesting that help.

We hope you will join us on Wednesday, February 10, 2021 at our new time 8pm ET, 7pm CT, 5pm PT as we discuss Communicating with your Health Care Team and Asking for Supportive Care. 

Guiding our discussion will be the following Topic (T:) Questions:

T1: How would you describe what constitutes good communication with your health care team?

T2a: How has communicating with your team changed during your cancer experience?
T2b: Has communication between you and your healthcare team been impacted by the Covid-19 pandemic?

T3: Have you discussed clinical trials with your provider? How was that information communicated? Did you bring up trials or did your provider?

T4: What would you suggest to your health care team or health care system that would improve communication? What would you suggest to patients to improve communication?

T5: What is the best advice you have received to communicate your need for support - emotional or physical - with your health care team?

T6: How do you prepare for visits with your health care team?

Since most of what we will share and discuss is not limited to gynecologic cancers, feel free to invite others impacted by cancer to join us for this discussion.

 

See you on Wednesday!


Dee and Christina


Friday, January 22, 2021

#SaludTues Cervical Health Month Chat

This month #gyncsm participated in the SaludAmerica #SaludTues "What Can We Do To Stop Cervical Cancer" chat with 54 participants including co-hosts @IamCervivor @NFIDvaccines and @StopHPVCancer. You may find a link to the complete transcript here and the analytics here (via Symplur). 

Here are highlights of the #gyncsm and other participant responses to the topic questions:

Q1. Let’s start off by discussing HPV. What is it and what role does it play in cervical cancer?

  • A1: Over 99% of cervical cancers are caused by HPV, which is a very common virus transmitted by skin-to-skin intimate contact. Most people clear the virus, but when it persists it can cause cell changes leading to cancer.
  • A1. Cervical cancer is a type of cancer that occurs in the cells lining the cervix, the lower part of the uterus that connects to the vagina. Various strains of HPV, a sexually transmitted infection, play a role in causing most cervical cancers. 
  • A1: HPV can cause warts as well as other cancers (anal, oropharyngeal, penile, vulvar, and vaginal) in addition to causing cervical cancer. 

Q2. Who is most affected by HPV and cervical cancer? Who is at highest risk for getting cervical cancer?

  • A2: Any one with a cervix is at risk for cervical cancer.
  • A2: Access to healthcare is an important factor in who is most affected. More than half of new cervical cancer cases occur among women who have never been or rarely been screened. When you don't have a consistent provider, it's hard to stay on a screening schedule.
  • A2: Studies also show that HPV vaccination is very much influenced by provider recommendation. Those w/o a regular provider may not receive education and encouragement to receive the vaccine -which can be given up to age 45- or to give the vaccine to their children.
  • A2. Some groups are more at risk of developing cervical cancer, such as Latinas. Latinas’ cervical cancer rates are 44% higher than non-Latinas. https://salud-america.org/crisis-cervical-cancer-among-latinas/ 
  • A2: More Black and Hispanic women get HPV-associated cervical cancer than women of other races or ethnicities. About 9 Hispanic & 8 Black women compared to 7 White women were diagnosed with HPV-associated cervical cancer per 100,000 women. [tweet with graph]
  • A2: Communities of Color and those in rural areas have the highest rates of cervical cancer; heart-breaking because this disease is almost always preventable. We have the tools, now we need to find the will! 

 Q3. How can cervical cancer be prevented?

  • A3: The two most important things you can do to prevent cervical cancer are to get the HPV vaccine if you are eligible, and to be tested regularly, starting at age 21. https://www.cdc.gov/cancer/dcpc/resources/features/cervicalcancer/index.htm
  • A3. Screening tests can help prevent cervical cancer. A pap smear looks for precancerous cells on the cervix. Pap smears are recommended after age 21 and if normal, every few years. An HPV test can also be conducted to detect the virus that causes cell changes. 
  • The HPV vaccine is over 99% effective at preventing pre-cancer caused by HPV types 16 or 18 in young women, which are linked to 70% of cervical cancers. The HPV vaccine is cancer prevention. Learn more: https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-vaccine-fact-sheet
  • Both the pap test (looks at cells for changes) and HPV test (looks for presence of HPV) are used to screen for cervical cancer. Guidelines are changing as we learn more about what's most effective. Check current recommendations and work w/ your provider to make a plan.  
  • A3.3: However, it is important to talk to your healthcare provider to create a care plan if you are dealing with abnormal and precancerous results. Your doctor will help you figure out your best timeline for testing and care moving forward. 

Q4. Let’s discuss the HPV vaccine. Who should receive the HPV vaccine? What can healthcare professionals do to increase HPV vaccination rates?

  •  A4: @CDCgov recommends 11- to 12-year-olds get 2 doses of #HPV #vaccine. Males & females up to age 26 years who were not previously vaccinated should receive catch-up HPV vaccination. Adults age 26-45 years should talk to a healthcare professional [tweet with image]
  • A4. The HPV vaccine protects people from developing the virus that causes cervical cancer. The CDC recommends HPV vaccination for preteens 11 to 12 years old and everyone through age 26 years, if they are not vaccinated already.
  • A4. To increase HPV vaccination rates, the CDC recommends using consistent messaging, effectively answer questions, provide personal examples, and bundle the HPV vaccine with other recommended adolescent vaccines.
  • A4: Healthcare professionals must strongly recommend #HPV #vaccine for preteens, teens, and young adults. HPV vaccine=#cancer prevention. Learn more: https://www.nfid.org/infectious-diseases/hpv/
  •  A4: The @NAPNAP has put together tips, talking points and additional resources for providers on discussing vaccines: https://www.napnap.org/cancer-prevention-and-hpv-vaccine-resources/
  • A4: We can increase HPV Vaccination rates by stoping stigma. People still don't think they are are risk because of the narrative of a certain type of person who is infected with HPV. We all have to work to #endSTIgma [tweet with image]

 Q5. I don’t have a primary physician or health insurance. Can I still get tested and treated for cervical cancer?

  •  A5. Yes. If you have no insurance or your insurance doesn’t cover screening exams, you are qualified for a free or low-cost screening. The CDC allows you to look for free screenings in your state: https://www.cdc.gov/cancer/nbccedp/screenings.htm
  • A5: A starting place is @CDC_Cancer National Breast and Cervical Cancer Early Detection Program (NBCCEDP) which provides breast and cervical cancer screenings and diagnostic services to low-income, uninsured, and underinsured women across the US 
  • A5: Also learn more about clinical trials which can literally be life-saving for some patients. Get the scoop and links to databases @ https://www.nccc-online.org/hpvcervical-cancer/clinical-trials/
  • A5. Absolutely! Check with your local Public Health Department (most have programs to help you with financial assistance as well as finding a provider).

Q6. What can we do to address the stigma and misinformation around HPV?

  •  A6. By increasing awareness and understanding of HPV and cervical cancer, we can fight the stigma. Research shows that if we can debunk myths and be clear about the facts, we can decrease the stigma that’s a burden for people with HPV. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4838770/
  • A6: Address stigma with empathy & facts: 80% of sexually active men & women are infected with #HPV at some point in their lifetime. #DYK: #HPV #vaccination=cancer prevention? [tweet with image]
  • Q6. If we avoid talking about HPV, it won’t go away. If we talk about prevention and treatment options, we can fight the stigma.
  • A6: Most fears related to HPV vaccine are more related to myth than reality. A multi-level approach is required to achieve higher rates of HPV vaccination focusing on communicating effectively w/parents & patients about the vaccine benefits & non-vaccination risks. [tweet with infographic]
  • A6. Continue to learn the latest on HPV. Quit using the same language surround HPV - Keep addressing how common of a virus HPV actually is. Education, sharing our stories, etc. all matter!
  • Patient stories are important to addressing the stigma surrounding HPV and Cervical Cancer. Both @IamCervivor and @StopHPVCancer have done a wonderful job curating and sharing stories. Visit their sites and share.   

Q7. What does a cervical cancer diagnosis mean? What resources are available for cervical cancer patients and survivors?

See you for our next #gyncsm chat Wednesday, February 10th at 8pmET. Note our new time!

Christina 

Additional Resources Shared

HPV Vaccination: Dispelling Myths to #PreventCancer https://www.nfid.org/2020/01/30/hpv-vaccination-myths/

Gynecologic Anatomy https://www.foundationforwomenscancer.org/gynecologic-cancers/gynecologic-cancer-basics/gynecologic-anatomy/

WHO Fact Sheet - Human papillomavirus (HPV) and cervical cancer https://www.who.int/news-room/fact-sheets/detail/human-papillomavirus-(hpv)-and-cervical-cancer 

Understanding Cervical Cancer Screening https://www.nccc-online.org/hpvcervical-cancer/cervical-cancer-screening/

Claudia Lozano: Promoting the HPV Vaccine for Latinos https://salud-america.org/claudia-lozano-promoting-the-hpv-vaccine-for-latinos/

 

Wednesday, December 9, 2020

Dec. 9, 2020 - The Needs of Young Adult Gyn Cancer Patients

The #gyncsm community was pleased to have the #ayacsm community join us for our chat on The Needs of Young Adult Gyn Cancer Patients. We had twenty-one participants. You may find a link to the complete transcript here and the analytics here (via Symplur). 

Note that AYA patients generally fall between 15 and 40 years of age. 

Here are highlights of the participant responses to the topic questions:

T1: Do gyn cancer symptoms present differently in the Adolescent/Young Adult (AYA) population than they do in the adult/older adult population?

  • Similar to adults : A study done in Iran 15-35 years old in #ovca abdominal or lower back pain 52%, unusual bloating, fullness and pressure in the abdomen 37%, gastro-intestinal problems 36% physio-pedia.com/images/b/b6/Ea…
  • The average age for ovarian cancer is over 50/60 but plenty of younger women get it and even children get some types. Any bleeding after menopause is a symptom that needs to get checked out for gyn cancers - so that trigger isn't there in those pre-menopause.
  • The gynecologic cancer symptoms (see table) can be easy to write off as other things, so I think both young women and doctors aren't thinking "cancer" when these symptoms arise. The whole "too young for cancer" thinking needs to go. #gyncsm #ayacsm


T2: What are some unique aspects of being diagnosed with a gyn cancer ( or any cancer) as a young adult? 

  • For me, fertility issues weren't addressed/taken seriously, and as a result, I was never able to have kids. It didn't have to be that way if any of my doctors over the years had remembered that I was young.
  • We have unique needs like fertility, family planning, dating, sexual health, college/education, and long term side effects.
  • I would think that #fertility would be a big issue 
  • For me it was feeling like I didn't really fit in. The younger women with ovarian cancer typically had a different type than me. Most of the women with high grade serous are 20 years older than me.
  • Isolation is HUGE for AYA’s! I have experienced it myself. It’s difficult when you don’t see your peers in the waiting room or support groups. 
  • Young women have unique roles that do not mesh well with cancer treatment. Work, life, childcare. Women are used to being the caregivers in their family and having cancer is a role reversal that is very difficult. 

T3: How soon should AYA patients, or in some cases their parents, initiate a conversation with their oncologists about fertility?

  • Fertility is a critical issue for #AYA pts with #gynecologiccancer no matter where the woman is in her journey- it should be discussed early and plans made! 
  • Right away! Elicit the care of an #oncofertility specialist so you can make plans and protect and preserve your fertility if possible 
  • Fertility should be discussed at diagnosis with anyone diagnosed with a gynecologic malignancy during their reproductive years. Nearly all treatment disrupt fertility.
  • I am working towards a world where it is brought up by the care team at the very *first appointment*, large cancer center, or a county hospital. 
  • T3 &4 #gyncsm #ayacsm need to address also fears/myths/biases of providers, patients, & caregivers have that if we focus or address #sexaftercancer #Menopause #oncofertiliy we are not being “aggressive” about cancer treatment ; need to lay it all out good&bad early & openly.

T4: In your experience, do providers discuss and provide resources related to surgical menopause? 

  • T4 well it didn’t happen for me. Surprise! 
  • Definitely have to do better. People should get the whole story from their PROVIDERS. Good/Bad. This shouldn’t be found out afterwards or from Dr Google or from social media after the fact 
  • T4: I feel like this too often has been an "oh, by the way..." part of treatment planning. Maybe because if affects everyone so differently that it is hard to set expectations? Addressing surgical menopause is an area for improvement. 
  • Nearly all treatments for gynecologic cancer (or pre-malignancies) have the potential to initiate menopause. This has to part of the conversation with younger patients at diagnosis. 
  • I was told that a certain treatment would impact when I could get pregnant, but was never told the maintenance treatment would cause infertility. Not the same, I know... 
  • My regular ob/gyn brought it up before my gyn onc did. And I was the one intiating these discussions with my gyn onc. This is an area that I feel was definitely lacking. I felt like I needed to be guided on what it does to your body over time to go into menopause before you are supposed to. I have had to teach myself.
  • Treatment for menopausal symptoms is underprescribed - estrogen or other therapies may be safe. Ask your care team for your options. 
  • T4 Not nearly often enough, from what our @CancerHopeNet clients tell us. Orgs like @ElephantsTea are doing good work to raise awareness and reduce reluctance to discuss openly. 
  • T4 Some great resources for menopause @WomanLab_ @stacylindau @drmonicaxmas

T5: Are special support programs in place to help AYA? What about support from other AYA patients specifically?  

T6: What roadblocks exist and what advice would you give to AYA regarding sharing their diagnosis with others - when looking for higher education, employment, dating, etc? 

  • Ask for help! We will help you find resources. 
  • T6: In my opinion: getting AYA as a community and group recognized by the entire oncology community. I think that’s the biggest step to getting AYA’s resources no matter where they are. 
  • Don't be afraid to ask - especially the "older" survivors. I've found many were around my age at the time of diagnosis and they've been there, done that, SURVIVED that, *and* have the t-shirt.
  • For career and/or legal related items, @CancerAndCareer and @TriageCancer are good resources.
  • Orgs like @CancerHopeNet can provide matches based on age/dx/circumstances as well.

#gyncsm will be “off” in January. We look forward to chatting again on Wed, Feb 10, 2021 at 8pmET when we’ll discuss “Communication with your health care team and Asking for Supportive Care”. All welcome. 

Please note our new time to meet in 2021. 


Wishing the #gyncsm community a very Happy Holiday and a safe, healthy and Happy New Year! 


See you in 2021!

Dee 

Additional Resources

https://www.cancer.gov/types/aya via @theNCI

Livestrong  

Teenage Cancer Trust 

Ovarian Cancer in Young Women 

Ovarian Cancer Among Adolescents and Young Adults

Quality of life, lifestyle behavior and employment experience: A comparison between young and midlife survivors of gynecology early stage cancers 
 
Cancer Related Distress in Young Adults Compared to Middle-Aged and Senior Adults

Thursday, December 3, 2020

The Needs of Young Adult Gyn Patients - Dec. 9, 2020

 

This month on Wednesday, December 9, 2020 at 9pm ET we join together with #ayacsm co-founders, Emily Drake (@EK_Drake), cancer researcher, and Bill Paymaster (@ukfann00) of Hope For Young Adults with Cancer (@Hope4YAWC) to discuss The Needs of Young Adult Gyn Cancer Patients. It is important that adolescent and young adult patients receive age-appropriate supportive care. 

We will be using these topic questions to lead our discussion:

T1: Do gyn cancer symptoms present differently in the Adolescent/Young Adult (AYA) population than they do in the adult/older adult population?

T2: What are some unique aspects of being diagnosed with a gyn cancer as a young adult?  

T3: How soon should AYA patients, or in some cases their parents, initiate a conversation with their oncologists about fertility?

T4: In your experience, do providers discuss and provide resources related to surgical menopause? 

T5: Are special support programs in place to help AYA? What about support from other AYA patients specifically?  

T6: What roadblocks exist and what advice would you give to AYA regarding sharing their diagnosis with others - when looking for higher education, employment, dating, etc? 

For more information on Adolescent and Young Adults with Cancer visit:

We look forward to having you join us Wednesday on Twitter.  

Dee and Christina

#gyncsm Co-Founders

Wednesday, November 11, 2020

Nov 11,2020 Chat - PARPS and You : How Do You and Your Doctor Decide?

We were so happy to host Drs. Laura Havrilesky (@LHavrilesky), Shelby Reed (@ShelbyDReedand Laura Fish (@laurafish4) to discuss the development of a shared-decision making tool for maintenance PARP inhibitors for women diagnosed with ovarian cancer. We had thirty-one participants join the chat. You may find the analytics here and the transcript here. Resources may be found at the bottom of the post. 

Here are some highlights from the chat.  

T1A: How have you gotten information about PARP inhibitors? Have you seen advertisements (print, TV, social media)? 

  • T1A: research online, SGO conference 2019
  • T1A: first heard about PARPi’s from a friend in the pharma industry who accompanied me to my first visit with Gyn Onc 
  • T1: I've seen more and more mention of PARPs on cancer nonprofit twitter accounts. Seems like more and more studies are coming up and the science is moving faster. 
  • I started visiting SHARE, OCRA, FORCE websites to learn more about PARPi’s. Then read the Phase III clinical trial reports 

T1B: How do social media sources (including online patient communities) play a role in your information gathering about possible treatments?

  • T1B Although I am not on a PARP I see lots of support and info sharing in Facebook Groups, @smart_patients and @teaminspire
  • T1B: Occasional use of closed patient groups to assess drug side effects or successful strategies to handle side effects
T2: Are PARP inhibitors a better fit for certain women than others? 
  • T2 PARP inhibitors are FDA-approved for treatment of women with ovarian cancer in different categories, based on what is going on with the cancer right now and the woman’s or cancer’s genetic test status. The table below lists them. 1/4
  • T2 - 3 big studies came out October 2019, showing that PARP inhibitors given as maintenance therapy after a response to frontline chemotherapy can give a woman with ovarian cancer 6 extra months on average until the cancer begins to grow again. 2/4 
  • T2 Women with BRCA mutations OR genetic changes called HRD, can gain about a year of extra cancer-free time with a PARP inhibitor, while women not having any of these genetic changes in their tumor may gain no extra time at all or up to 3 extra months. 3 /4
  • T2 Genetic testing and tumor testing can find BRCA and other mutations such as HRD to help determine the likelihood that taking a PARP inhibitor will have a positive impact. 4/4
 
T3: What are the pros and cons of maintenance therapy with PARP inhibitors? 
  • T3 Common side effects of PARP inhibitors are fatigue, nausea, and low blood counts such as low platelets and anemia. When taking a PARP inhibitor, a woman will need to be seen frequently at first to check the lab values and adjust doses. 1/2
  • T3 This image from a presentation of the PRIMA randomized trial at the 2019 ESMO conference shows the specific side effects of niraparib (green) compared to an inactive placebo (pink). 2/2
  • T3: Pros for me it was very tolerable and civilized cancer care with just a pill and few side effects. Cons: Didn't work (slowed growth didn't stop or reverse). Eyepopping Costs (covered by insurance luckily.
  • T3: I didn’t see any drawbacks for myself. Weighed risks/possible benefits from the published lit. Only possible problem was $$$COST$$$
T4: Is there anything you wish you had known earlier about PARP inhibitors?
  • T4: When I tried Naraparib it was still pretty early on and very new for approval for maintenance for BRCA wt. I knew it was less likely to work, but still disappointing - for me it was an easy and tolerable therapy. I think there is more clarity now on best use.
T5: How do out of pocket expenses play a role in decisions you make about taking a PARP inhibitor? (and you can continue w/ tweets about anything you wish you knew about PARPs)
  • T5 Even though PARP inhibitors cost over $12,000 per month, insurance companies or Medicare usually foot most or all of the bill. Some women have no out of pocket expense or a very small one. However some women have monthly co-pays of over $1,000.
  • T5 Here are links to PARP patient assistance sites: olaparib / Lynparza: https://www.lynparzahcp.com/ovarian-cancer/olaparib-patient-support.html        niraparib /Zejula: https://www.zejula.com/en/financial-support                               rubraca/ rucaparib: https://www.rubraca.com/ovarian-cancer/  2/2
  • T5: Big decision! Medicare women aren’t eligible for manufacturer-sponsored financial assistance. Makes things difficult
  • T5: My gynonc nurses helped by submitting to the drugmaker to cover some costs. It effectively covered my OOP max on my insurance, and I was not billed for my costs. Very helpful.
T6: Are you aware of the current @ASCO guidelines about PARP inhibitor maintenance therapy?
  • T6 ASCO recommends that all women with advanced stage ovarian cancer who have a good response to initial chemotherapy be offered PARP inhibitor maintenance therapy and make a shared decision with her provider.
  • T6 Here is a link to the full ASCO guidelines on PARP inhibitors in ovarian cancer. https://t.co/wfU3gqhkSB
  • Here is a summary of the PARPi in Management of #ovca @ASCO guideline

  • I wonder how that’ll make a difference in clinical practice. My gyn Onc (and others, according to their patients) don’t see much benefit for those not BRCA+ or HRD+ and don’t like to prescribe them to those patients 
  • I agree there is a very important distinction here-see the replies to T2 below for different levels benefit. Thats where the "shared decision" comes in -I agree that PARPi are not right for everyone.
  • Need to think about how that changes Survivorship and how pts may best cope with idea of continuing therapy instead of feeling “done”. Reinforces how important it is to understand ovarian cancer survivorship of continuum of many on and off therapy

We are so grateful for all Drs. Laura Havrilesky, Shelby Reed and Laura Fish do for patients and we look forward to the end result of their project - a Shared Decision Making Tool for women considering PARPs as maintenance therapy.


You can continue this PARP discussion at an “Ask the Experts” session on the online patient community Smart Patients (@smart_patients) starting Thursday at 1pmET. http://smartpatients.com/ovarian-cancer .

Please join us for our next #gyncsm chat Wednesday, December 9, 2020 at 9pmET as we discuss The Needs of Young Adult Gyn Cancer patients (#ayacsm).

Happy Thanksgiving!

Stay safe and see you next month!

Dee 


RESOURCES

Efficacy | ZEJULA (niraparib) https://t.co/f9iMWl8Oce

@FacingOurRisk Maintenance Therapy for Ovarian Cancer https://www.facingourrisk.org/info/risk-management-and-treatment/by-cancer-type/fallopian-ovarian-peritoneal/maintenance-therapy

PARPs Frontline Maintenance Therapy Transforms Advanced Ovarian Cancer With PARP Inhibitors https://www.onclive.com/view/frontline-maintenance-therapy-transforms-advanced-ovarian-cancer-with-parp-inhibitors

Using PARP Inhibitors in Frontline Maintenance Therapy for Ovarian Cancer https://www.cancernetwork.com/view/using-parp-inhibitors-in-frontline-maintenance-therapy-for-ovarian-cancer

@SGO_org Practice statement: Frontline PARP inhibitor maintenance therapy in ovarian cancer: A Society of Gynecologic Oncology practice statement https://www.gynecologiconcology-online.net/article/S0090-8258(20)33747-1/fulltext


Tuesday, October 20, 2020

PARPS and You : How Do You and Your Doctor Decide? November 11, 2020 Chat

 


Recently Drs. Laura Havrilesky, Shelby Reed and Laura Fish reached out to our #gyncsm Twitter community to discuss the development of a shared decision aid for use by women with ovarian cancer who are considering PARPs as maintenance therapy. The first step involves finding out what ovarian cancer patients know and think about PARPs. We love their focus on shared decision making and asking patients! So we have invited them to be our guests for our Wednesday, November 11, 2020, 9pmET #GynCSM Twitter Chat

We invite Ovarian Cancer patients, survivors and advocates to join us for this special discussion as we cover the following topics:

T1: How have you gotten information about PARP inhibitors? Have you seen advertisements (print, TV, social media)? How do social media sources play a role in your information gathering about possible treatments?

T2: Are PARP inhibitors a better fit for certain women than others?

T3: What are the pros and cons of maintenance therapy with PARP inhibitors?

T4: Is there anything you wish you had known earlier about PARP inhibitors?

T5: How do out of pocket expenses play a role in decisions you make about taking a PARP inhibitor?

T6: Are you aware of the current ASCO guidelines about PARP inhibitor maintenance therapy?

We look forward to seeing you all on November 11th!

 

Dee and Christina 

#GYNcsm Co-Founders