Vaccines in Cancer Care and Risk Reduction January 9, 2019

For our first chat of 2019, we had twenty-eight participants discussing Vaccines in Cancer Care and Risk Reduction. You may find the transcript here and additional analytics here.

Some responses to our questions may be found below.

T1: What vaccines are available before you develop cancer to reduce your risk? Are there different types? 

• T1 The #HPV vaccine is cancer prevention for six cancers-cervical, vaginal, vulvar, penile, & oropharyngeal. #gyncsm
• T1: Cancers that are caused by viruses can be vaccinated against. HPV vaccine protects against cervical and other HPV-related cancers. The HepB vaccine can help protect against liver cancer
• the #HPVvaccine has been available since 2006 -- initially it offered protection against HPV16 and HPV18, the types of HPV that causes 70% of #cervicalcancer #gyncsm
• the FDA approved Gardasil 9 in 2014 -- which protects against another 20% of the most dangerous subtypes of #HPV #gyncsm 

T2: What cancers can be caused by HPV? How does the HPV vaccine reduce the risk of HPV-related cancers?

• T2 Cervical, vaginal, vulvar, anal, penile, & oropharyngeal cancers are caused by HPV. Every year in the US, HPV causes 33,700 cancers in men and women
• #HPV can cause #cervicalcancer and some types of ear-nose-and-throat, vulvar, vaginal, penile, and anal cancer. The CDC recently release a report about trends in HPV-related cancers. #gyncsm cdc.gov/mmwr/volumes/6…
• T2 -- interestingly, in recent years oropharyngeal cancers are now the most common type of HPV-related cancer. #HPV #gyncsm
• T2 The HPV vaccine protects against an HPV infection-persistent infection can lead to cell abnormalities & cancer.
• T2: It takes a long time for a persistent HPV infection to cause cervical disease and pre-cancer. The vaccine helps keep the body from being infected after exposure. Approx 80% of people are exposed to HPV at some point in their life
• It's better to get vaccinated before exposure to #HPV - that way your body is already immune!
• A2 from @cochranecollab Among women aged 15 to 26 years, vaccines reduced the risk of cervical precancer associated with HPV16/18 from 341 to 157 per 10,000. HPV vaccination reduced also the risk for any precancer lesions from 559 to 391 per 10,000.

T3: What are the current U.S. recommendations for HPV vaccination? Who should get vaccinated, when and how many doses?

• T3 The HPV vaccine is recommended for all girls & boys who are 11 or 12 years old. The series can be started as young as 9 years. #gyncsm
• T3 -- currently the @CDCgov suggest offering vaccination for boys and girls starting at age 9, and recommends it starting at age 11-12.
• T3 -- however, in October 2018 the @US_FDA has approved the use of Gardasil 9 for men and women up to age 45. #hpvvaccine #hpv #gyncsm https://www.statnews.com/2018/10/06/fda-expands-hpv-vaccine-use-to-age-45/
• And Vaccines for Children (VFC) Program offers vaccines ( including HPV) at no cost for eligible children cdc.gov/vaccines/progr…
• Yes -- for individuals who start the vaccine series younger than age 15, two shots of the #hpvvaccine is recommended.
• The @HPVRoundtable has a bunch of great parent materials.
• You can also check out yesterday's tweet blast by @StopHPVCancer for some great HPV resource links 

T4: What are cancer treatment vaccines? How do they work? When are they used - after front-line?

• T4: There are cancer vaccines that can be created the patient's own tumor! They have been explored in #ovariancancer as a maintenance strategy after primary treatment #gyncsm
• Specific #HPVVaccines are being combined with #immunotherapy to treat #cervicalcancer and head and neck cancers @MDAndersonNews
• T4: "Cancer treatment vaccines boost the immune system's ability to recognize and destroy antigens. Often, cancer cells have certain molecules called cancer-specific antigens on their surface that healthy cells do not have." https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines
• T4: Some cancer vaccines are made from the person's tumor sample for them. Other cancer vaccines target specific cancer antigens and are given to people whose tumors have those antigens on the surface of the tumor cells.
• T4 this article talks of the steps producing the vaccine Provenge for prostate cancer and examples of types of cancer vaccines. #gyncsm historyofvaccines.org/content/articl…   

T5: In which gynecologic cancers are treatment vaccines being studied? Has there been progress in this area?

• I found 15 clinical trials when I searched on clinicaltrial.gov for ovarian cancer vaccines https://clinicaltrials.gov/ct2/results?term=vaccine&cond=Ovarian+Cancer&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=
• Results from one #ovariancancer trial last spring via @ocrahope ocrahope.org/2018/04/vaccin…
• Cancer Vaccines in Ovarian Cancer: How Can We Improve? gives overview of research being done in this area in 2016 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344251/
• T5 -- to me, it seems that the most progress with vaccines as a treatment strategy has been in #ovariancancer. There certainly is a lot of interest in this area given the innovation in #immunotherapy #gyncsm cancertherapyadvisor.com/gynecologic-ca

Additional resources shared during the chat may be found at the end of this post. 

Be sure to join us next month on February 13, 2019 at 9pm ET for our chat "Getting Into a Clinical Trial". 

You can also join us for a collaborative chat across all #cancer communities presented by #LCSM this Thurs Jan 10th at 8pm ET/5pm PT on "Immunotherapy: What Patients Need to Know". More here: https://lcsmchat.com/2019/01/06/lcsm-chat-2019-01-06-immunotherapy-what-patients-need-to-know/ 

And on January 16 at 9pm ET join the #CervivorChat (@IamCervivor) for support and discussion about HPV and cervical cancer. 

See you there!

Dee
Co-moderator #gyncsm Chat

RESOURCES: 

Trends in HPV 
https://www.cdc.gov/mmwr/volumes/67/wr/mm6733a2.htm

Hepatitis B Vaccination : What Everybody Should Know 
https://www.cdc.gov/vaccines/vpd/hepb/public/index.html 

Recap from our #gyncsm Feb 2017 chat on HPV and Cervical Cancer 
http://gyncsm.blogspot.com/2017/02/hpv-and-cervical-cancer-chat-2817.html

@theNCI site 
https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-vaccine-fact-sheet 

HPV vaccine: A smart way to protect kids from cancer @jburzawa
https://www.mdanderson.org/publications/cancerwise/hpv-vaccine-a-smart-way-to-protect-kids-from-cancer.h00-158830434.html 

American Academy of Pediatrics - HPV 
https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/adolescent-sexual-health/Pages/HPV.aspx 

Vaccines for Children (VFC) Program 
https://www.cdc.gov/vaccines/programs/vfc/parents/qa-detailed.html 

NCI-designated Cancer Centers Urge HPV Vaccination for the Prevention of Cancer http://www.cinj.org/sites/cinj/files/documents/NCI_HPV_Consensus_Statement_012716.pdf 

Cancer.Net 
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines

Phase 2 Trial on HPV Indications 
http://ir.inovio.com/news-and-media/news/press-release-details/2018/Inovio-Announces-Initiation-of-Phase-2-Trial-in-New-HPV-Indications/default.aspx

Cancer Vaccines in Ovarian Cancer: How Can We Improve? 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344251

Immunotherapy - March 2018 Chat

"Very exciting to be a part of this important work. That was my goal all along...I didn't think the treatment would actually WORK to cure my cancer...I just hoped to be a part of something that would further the possibility of a cure"- Sue Scott 

"We have to continue to spread the word and help educate about immunotherapy and clinical trials. Always Hope and Believe" - Aricca Wallace

"They have enabled years of laboratory research that is still going on." - Dr Christian Hinrichs

For this month's  Immunotherapy chat we welcomed NIH researcher, Dr. Christian Hinrichs (@CSHinrichsMD), as well as patients Sue Scott (@SurvivorSueWDC) and Aricca Wallace (@mandmsportsmom), who provided their unique insight into participating in immunotherapy clinical trials.

We had 30 participants and over 1.5 million impressions. You may find more analytics here and a complete transcript here.

Here is a sample of the responses our guests and participants provided:

T1A: What is immunotherapy? How is it different from other gyn cancer treatments (surgery, chemo, radiation)? 

• Unlike other treatments, immunotherapy uses the body's own immune system to help fight the disease
• Immunotherapy stimulates immune response or modifies it so that immune cells can recognize and kill cancer cells.
• immunotherapy works with your immune system to target cancer cells. For gyn cancers, this type of treatment is primarily being studied through clinical trials and our knowledge is advancing rapidly

T1B: @CSHinrichsMD - What did your immunotherapy trial for HPV-related gyn cancers entail?

• Immunotherapy is a type of treatment that uses the patient’s own immune system to fight the cancer. The immunotherapies that we are discussing today are based on T cells, a type of immune cell that specializes in killing abnormal cells.There are two types of immunotherapy that have received a lot of attention lately. One is checkpoint inhibitors. These drugs block inhibitory signals sent to T cells by other cells. This is “releases the brakes” so the T cells can attack the cancer cells. The other is adoptive T-cell therapy (ACT). For this, the patient’s T cells are grown in the lab and then infused back to the patient to treat the cancer. This is what @mandmsportsmom and @SurvivorSueWDC received. The T cells for ACT can be grown from a tumor that is removed by surgery. These are called tumor-infiltrating T cells (TIL). T cells from ACT can also be grown from blood and genetically engineered to have receptors that let them target the tumor. One type of receptor is called a CAR. Another is called a TCR. 
•  Our current clinical trials use T cells that are engineered to have TCRs. This does not require surgery, and it seems to more consistently and potently target the cancers

T2: For the patient, what is the immunotherapy treatment experience like? What are the common side effects with immunotherapy? 

• @mandmsportsmoman ...After 18 rounds of chemo and 32 rounds of radiation...immunotherapy was a God send! I had to have a tumor removed and the t cells grown in the lab, had aphoresis to remove white blood cells and together they trained in the lab. I was given 7 days of chemo to deplete immune system.The t cells and my trained wbc were then put back in me. Millions of cancer cells being injected was scary! The trained wbc immediately recognized the tumors and started attacking. While this was happening it was like having the flu x 1000..fever, chills, etc just like fighting any other virus. The interluken 2 that you are given after injection, I call it gatorade for the cells. Would just ramp them back up again and symptoms of high fever, chills, etc would start again..nothing that nurses and meds couldn't help control. 
• @survivorsuewdcan  I always say that Dr. H took out my immune cells and sent them to 5 weeks of KUNG FU school (genetically altered them in his lab) and then put 74.5 BILLION of them back in me! I feel the side effects were easier to handle than the ongoing side effects of chemo and radiation.Because the immuno trial I was in included 7 days of chemo ( to rid my body of its current TIL cells and make space for the " new and improved ones that Dr. H had "built" in his lab) I did lose all my hair. I also was sick from the IL2 doses.
• Checkpoint inhibitors that target PD-1 have remarkably few side effects. This has been revolutionary.
• Cell therapy is a more intense, often inpatient, treatment that can have many side effects.

T3A: Is immunotherapy common in treating gynecologic cancers? Is it only offered through trials?

• There are emerging data for immunotherapy in some gyn cancers, and patients can receive some treatments outside of clinical trials. Nonetheless participation in clinical trials is best whenever possible as we are still learning about these treatments.
• One of the issues is ensuring immunotherapy can identify tumor cells well. There's a lot of interest in radiation synergizing with immunotherapy. Example trial for cervical/endometrial cancer: https://clinicaltrials.gov/ct2/show/NCT03192059?term=immunotherapy+radiation+endometrial&rank=2

T3B: Patients - How did you find out immunotherapy was an option? What were your concerns? What led you to go forward with enrolling in a trial?

• Another God send. @cshinrichsmd reached out to former colleagues. One that happened to be my current gyn onc.
• You learn you have to be an advocate for yourself. I now tell ppl to check out https://clinicaltrials.gov/ to see what is out there 

T4: What advice would you give to others considering an immunotherapy trial, or any clinical trial? 

• DO IT! Once "standard treatment" doesn't work - what do you have to lose! New breakthroughs happen daily 
• You don't need to wait for your medical team to bring up trials. You can do your own research or reach out to patient advocates or advocacy orgs
• Re clinical trials, shop around. There are lots of them, and they are not all equally good. Look at past results.
• Don't accept that the only answer is to control not cure you may have to control for awhile there is hope given daily w/trials

T5: @CSHinrichsMD - How did patients, including our guests, contribute to your immunotherapy research? What did you learn from them and where is the research now heading?

• @cshinrichsmd T5: @mandmsportsmom and @SurvivorSueWDC are the brave volunteers who first showed that this type of treatment can work. They did this when all we doctors could say was that it seemed like a good idea. Studies that we did on samples that they donated have shown us which patients are more likely to respond to this type of treatment. Study of @SurvivorSueWDC led to the discovery of a new treatment that we hope to test soon.They have enabled years of laboratory research that is still going on.

T6: What are some resources for leaning more about immunotherapy in treating cancer? For finding out what's new and what trials are open?

• The most comprehensive resource for clinical trials is https://clinicaltrials.gov/. There is a lot of information and advice from your doctor is important. The NIH Clinical Center has many immunotherapy trials. Patients are not charged for medical care at the NIH. In some cases, travel is also free. https://clinicalstudies.info.nih.gov/ Also, for patients with advanced-stage, HPV-related cancers, like cervical, vaginal, and vulvar cancers, I am easy to find. https://ccr.cancer.gov/Experimental-Transplantation-and-Immunology-Branch/christian-s-hinrichs

Additional resources mentioned during the chat may be found below.

Patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm

Join us next month on our regular day (second Wednesday of the month) Wednesday, April 11, as we discuss SGO Annual Meeting Research Review and Ask the Docs. 

See you next month and thank you for using the #gyncsm to share news of interest to our community.

Dee
Co-founder #gyncsm

RESOURCES

@FacingOurRisk new info section w/ an overview on #immunotherapy for #cancer treatment.
http://www.facingourrisk.org/understanding-brca-and-hboc/information/cancertreatment/immuno-oncology/index.php

What You Need to Know About Immunotherapy Side Effects via @cancerdotnet 
https://www.cancer.net/blog/2018-02/what-you-need-know-about-immunotherapy-side-effects

@SITcancer released new consensus recommendations on recognition & clinical management of immune-related side effects of immunotherapy. 
https://www.medpagetoday.com/reading-room/asco/immunotherapy/71026

@DanaFarber New Clinical Trials Test Immunotherapy for Cervical Cancer
http://blog.dana-farber.org/insight/2018/03/new-clinical-trials-test-immunotherapy-cervical-cancer/

Sue's Washington Post article
https://www.washingtonpost.com/national/health-science/cancer-was-killing-her-she-tried-immunotherapy/2014/11/10/0b252ae8-4fb4-11e4-babe-e91da079cb8a_story.html?utm_term=.0deb48a39453

Articles about #ovariancancer treatment vaccine trials https://medicalxpress.com/news/2017-04-world-ovarian-cancer-vaccine-trial.html and http://www.uphs.upenn.edu/obgyn/research/ovarian_clinical.htm  [updated link 1/11/2019 https://www.pennmedicine.org/news/news-releases/2018/april/personalized-tumor-vaccine-shows-promise-in-pilot-trial ]
 
Overview from @theNCI - Immunotherapy to Treat Cancer
https://www.cancer.gov/about-cancer/treatment/types/immunotherapy

Overview from @cancerdotnet – Immunotherapy and Vaccines https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines

@CancerResearch has an immunotherapy trials #ovariancancer page http://cancerresearch.org/immunotherapy/cancer-types/ovarian-cancer and #cervicalcancer page http://cancerresearch.org/immunotherapy/cancer-types/cervical-cancer

patient recruitment page for the NIH https://www.cc.nih.gov/recruit/

A survey on state of patients' Immunotherapy knowledge by @teaminspire - Infographic: 
https://corp.inspire.com/resource/2017-immunotherapy-awareness-infographic/

NYTimes Article - Doctors Said Immunotherapy Would Not Cure Her Cancer. They Were Wrong.
https://www.nytimes.com/2018/02/19/health/ovarian-cancer-immunotherapy.html

How CAR-T Therapy, Known As A 'Living Drug,' May Help To Kill Forms Of Cancer ( #mmsm )
http://keranews.org/post/how-car-t-therapy-known-living-drug-may-help-kill-forms-cancer

PET Scans Could Identify Those Likely to Respond to PD-1-targeted Cancer Therapies 
https://immuno-oncologynews.com/2018/03/09/pet-scans-could-identify-those-likely-to-respond-to-pd-1-targeting-immunotherapy/

Collaboration key to identification, incorporation of biomarkers for immuno-oncology 
https://www.healio.com/hematology-oncology/practice-management/news/online/%7B64654536-7fa7-4d43-b57d-ae9b4d027a7f%7D/collaboration-key-to-identification-incorporation-of-biomarkers-for-immuno-oncology

"In Cancer Trials, Minorities Face Extra Hurdles" Researchers actually (falsely) believe people in minority groups have lower incomes & less education, & therefore less awareness of medical studies.
https://www.nytimes.com/2016/12/23/health/cancer-trials-immunotherapy.html?smid=tw-share

clinical trials check out this @SGO_org video
https://www.sgo.org/patients-caregivers-survivors/clinical-trials/

March 14th Chat: Immunotherapy

We are pleased to be discussing Immunotherapy in Gynecologic Cancers with NIH researcher Dr. Christian Hinrichs (@CSHinrichsMD) and patients Sue Scott (@SurvivorSueWDC) and Aricca Wallace (@mandmsportsmom) during our monthly #gyncsm chat on Wednesday, March 14th at 9:00pm ET. 

Dr. Christian Hinrichs' research focuses on immunotherapy for HPV positive cancers including cervical, vulvar and vaginal cancers. Read more about his research and trials here. Sue Scott, following a diagnosis of metastatic cervical cancer, took part in one of Dr. Hinrichs' trials in 2013. You may read her story here. Aricca Wallace discovered she had stage III cervical cancer in 2011 and went through 32 rounds of chemo and 25 days of radiation. Aricca also took part in Dr. Hinrichs' clinical trial. You can read about her experience here. 

The NCI/NIH Immunotherapy to Treat Cancer site states that immunotherapy is a type of biological therapy that helps your immune system fight cancer. Dr. Hinrichs' research deals with T-cells, white blood cells, that target two specific HPV proteins.

Our topic questions will include: 

What is immunotherapy? How is it different from other gyn cancer treatments (surgery, chemo, radiation)? 

What is the immunotherapy treatment experience like? What are the common side effects with immunotherapy? 

Is immunotherapy common in treating gynecologic cancers? Is it only offered through trials?

Patients - How did you find out immunotherapy was an option? What were your concerns? What led you to go forward with enrolling in a trial?

What advice would you give to others considering an immunotherapy trial, or any clinical trial? 

@CSHinrichsMD - How did patients  contribute to your immunotherapy research? What did you learn from them and where is the research now heading?

What are some resources for learning more about immunotherapy in treating cancer? For finding out what's new and what trials are open?

We hope you will join us to learn more about how immunotherapy works, immunotherapy clinical trials and hear about the experiences of two women whose cancer was treated with immunotherapy. 

See you on Wednesday. 

Dee 

#gyncsm Community Co-founder

SGO Annual Meeting Research Review and ASK the Docs - April 12, 2017

During this month's chat we discussed research reported on at the 2017 SGO Annual Meeting. We had 29 participants and over 1.5 million impressions.

If you would like to read the complete transcript please visit this Symplur webpage. Analytics may be found here.

Below please find some sample answers to the questions we asked during the chat.

T1: What #SGOMtg presentations did you personally find of most interest? Also, what were some of the "hot topics" of discussion?

• PARP inhibitors for RX of #ovariancancer continue to be a hot topic at #SGOMtg
• Was glad to see the study re: the HPV vaccine dosing - supporting that it can be reduced from 3 doses to 2
• lots of imp news. See my OCRFA SGO report https://t.co/bABRIboozG
• Very interesting to see the activity of #PARPi across all pts regardless of #BRCA status. Strongest effect in #BRCA mutant or HRD
• Sadly, maintenance treatment with taxanes in the upfront setting for #ovariancancer did not improve survival compared to placebo
• Sexual Health Ed Forum w/Don Dizon & Joanne Rush fantastic! tech info + how to talk abt sex & feelings abt talking abt sex 

T2: Which #SGOMtg studies do you think will most interest patients? Were there findings survivors need to take immediate note of? 

• I found this ERAS study of interest - how to make surgery less impactful on quality of life: https://t.co/ul4lYu0h81
• Carbo desensitization highlighted https://t.co/BRLcoQYs1S
• Sentinel lymph node mapping in #endometrial and #cervicalcancer was a hot topic at #SGOMtg - great way to reduce side effects!

T3: What was the #Trials4GynCancerNow campaign which took part during the #SGOMtg? How does gyn cancer trial access impact care? 

• Fewer trials means slower progress. Also means less access to novel therapies for patients who have limited options. #gyncsm 
• Our #gyncsm blog post https://t.co/JvU8IHk3oi
•  restructuring cooperative groups impacted number too
• This is a huge issue - #GynCancers are no longer the priority of the cooperative group
• 90% reduction in phase 3 clinical trial participation is startling to me

T4: What was something you learned or were reminded of during #SGOMtg that you plan to implement or follow-up on? 

• earlier palliative care study was important for patients to hear as well as health care providers
• This has been shown in multiple cancer types - earlier palliative care involvement yields better outcomes
• palliative (or supportive) care is valuable in dealing w/ side effects of cancer and treatment no matter where in journey
• There is a big push 4 pt reported outcomes - a great way to measure impact on #QOL - especially when drugs have similar outcomes 

T5: For our last topic, we'll let our participants ask questions they have about gynecologic cancer research. Also, what do you want to see research resources focused on? what are some gaps in research?

•  So many approved PARPi for treatment and maintenance, is there a preferred order of use? What do we know about serial PARPi S/Es? These are questions that we need to answer- there are a few differences in first use side effects - we don't know about serial 
• I'm wondering what the mood was like about the future of cancer research funding and the cancer moonshot initiative? I know the young researchers at my NCI Comprehensive Ca center were worried about support.
• Is any research being done on psych wellbeing, supportive care mindfulness etc combined with meds? I tend to see studies like that coming out of Oncology Nursing Society ONS 
• I'd like to see more resources dedicate to ensuring current research can be more easily implemented in practice
• Good to see some research on rarer gyn cancers like this one on Vulvar cancer https://t.co/jTCQC18Boy 

Abstracts from the SGO Annual Meeting may be found at
https://sgo.confex.com/sgo/2017/meetingapp.cgi/ModuleSessionsByDay/0
For addition Resources, please scroll down.

Patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/gyncsm

We hope you will join us on Wednesday, May 10, 2017 as we discuss Womanhood, Femininity and Cancer. 

See you then.

Dee
#gyncsm Co-Founder

RESOURCES

Highlights from the 2017 SGO meeting- OCRFA, Annie Ellis 
https://ocrfa.org/wp-content/uploads/2017/03/Ellis-2017-SGO-summary.pdf

Summary article from @cancernetwrk
http://www.cancernetwork.com/sgo-2017

@cure_magazine Highlights from #SGOmtg
http://www.curetoday.com/conferences/sgo-2017?p=2

@StephanieVBlank of @NYULMC will present the latest info on #ovariancancer from @SGO_org 's annual meeting: https://www.sharecancersupport.org/ovarian-cancer/educational-programs/?lm=https://share-web.fcny.org/listings/programs/ovarian_cancer_what_s/?bu=https://share-web.fcny.org/listings/programs/%3Faction%3Dview%26category%3D128175%26location%3D-%26language%3Den-us%23ovarian-cancer-what-s-new

#Trials4GynCancerNow campaign
http://gyncsm.blogspot.com/2017/03/advocating-for-gynecologic-oncology.html

Crisis in Gyn Cancer Trials
https://www.sgo.org/wp-content/uploads/2012/09/SGO-Clinical-Trial-Crisis-FINAL.pdf

Foundation for Womens Cancer: Closer Look
https://www.youtube.com/watch?v=sVObSzkf_B0&feature=youtu.be

#CTAW2017 (Clinical Trials Awareness Week) chat on Tue May 5th at 1pmET 

Past #SGOMtg Research Recap #gyncsm chats: 2014 https://t.co/wUiAM3hp9K 2015 https://t.co/w1ZwfH1xQH and 2016 https://t.co/5sqJnrCGNY

Tweet summaries from #SGOMtg  @womenofteal 's blog http://womenofteal.blogspot.com/ - See March 2017 posts

HPV and Cervical Cancer Chat - 2/8/17

During this month's chat discussion on HPV and Cervical Cancer the community learned vital information about screening, vaccination, fertility and how to better educate women on the risks and treatment of cervical cancer. We were joined by forty-nine participants and had over 2.4 million impressions.

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

T1: Which HPV (Human Papilloma Virus) types cause cervical cancer? How does the HPV vaccination prevent cancer? 

• HPV causes nearly all cases of cervical cancer. While there are over 150 HPV types, ~14 are known to cause cervical cancer.
• Usually HPV 16 and 18. But several others. Vaccine prevent against many cancer and wart causing types of HPV
• Just because you are infected with #HPV - doesn't mean that you will DEFINITELY develop #cervicalcancer
• Because we can't be sure who will develop cancer - best to PREVENT with #HPVaccine
• It is also important to note that the HPV infection can develop years after exposure
• @theNCI comprehensive cancer ctrs statement on HPV vaccination tinyurl.com/je8tujx

T2: What other health issues and cancers are associated with HPV? Why is the vaccine recommended for both boys and girls?

• @GYNcancer :vaccinate both girls & boys between 11- 13 years. 2 doses . Vacc + screening prevent virtually all CervCa
• Other HPV-related cancers include: vagina, vulva, penis, anus, rectum, and oropharynx (cancers of the back of the throat) 
• As of 10/2016, CDC recommends that 11-12 year-olds receive 2 doses of HPV vaccine at least 6 months apart instead of 3
• Cigarette smoking and conditions that lower the immune system like steroids [increase risk]
• Cervical dysplasia (not yet cancer) can be as emotionally and mentally taxing for young women
• The best time to vaccinate is well before any sexual skin to skin contact. 

T3: What are the tools we have to catch cervical cancer in the pre-cancer and early stages? What do we need to know re: guidelines? 

•  If there is concern based on pap and/or HPV test, then colposcopy (a closer look) is done in office.
•  HPV test should be first test for cervical cancer screening. Detects 14 high-risk HPV types. via @US_FDA
• Continued importance of pap/HPV screening based on ASCCP guidelines--this and vaccination best way to protect 
• ACOG infographic on screening acog.org/Patients/FAQs/…
•  Imp- Guidelines are based on average risk and should be starting point of discussion with your doctor about your personal risk!

T4: What are options for fertility preservation? What fertility and general resources can help women diagnosed with cervical disease? 

• There are onco fertility specialists. Fertility should always be part of the conversation when treating cervical disease.
• There are many fertility sparing options for patients w a new dx of #cervicalcancer - make sure you ask your surgeon!
• Newest screening guidelines for cervix CA try and decrease unnecessary procedures that could affect fertility
• Clinical trials investigating less radical surgery & neoadjuvant chemotherapy 
• Fertility preservation in women with early-stage cervical cancer via Up-to-Date http://www.uptodate.com/contents/fertility-preservation-in-women-with-early-stage-cervical-cancer-beyond-the-basics 

T5: There is still a lot of stigma surrounding women's cancers. How can we ensure ALL women receive the necessary education.

• Take stigma off of HPV as a "sexually transmitted" disease and change to "human contact" 
• Keep talking about it until it's not a stigma - it's just a health condition to treat!
• Recent news @NewsHour @DrJenCaudle #cervical cancer kills more african american women http://www.pbs.org/newshour/bb/cervical-cancer-killing-many-african-american-women-thought/ 
• Australia has implemented school-based vaccination w/ success in vaccine rates and decreased disease
• It would help if our education about bodies included penis, vagina, ovaries, testes, etc as consistently as we say "elbow."
• More education programs in junior high and high schools. School vaccination programs 
• Celebrities with cervical cancer diagnosis speaking out 
• Organizations like American Indian Cancer Foundation americanindiancancer.org/cervical help educate and raise awareness
• Organizations like @iamcervivor work to share stories - stories touch emotions and emotion leads to actions
• Cancer treatment is far worse than the "stigma" of people knowing you're sexually active

Please scroll down for additional resources. To read the entire transcript please click here.

Remember that patients and caregivers are invited to continue our #gyncsm discussions on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm  .

We invite you to join us next month, Wednesday, March 8, 2017 at 9pm ET for our chat on Gyn Cancer Disparities. 

See you next month! And please use the #gyncsm hashtag to share important information with our community.

Dee
Co-Founder #gyncsm

RESOURCES

@GYNCancer HPV Facts and testing http://www.foundationforwomenscancer.org/educational-materials/cervical-cancer-edmaterials/

@CDCgov has info and resources about #HPV available at     https://www.cdc.gov/hpv/parents/whatishpv.html

ASCCP guidelines available for public http://www.asccp.org/asccp-guidelines

SGO webpage about HPV with good resources sgo.org/hpv/

FDA Resource - Improving odds of cervical health fda.gov/forconsumers/c…

Fertility Preservation in Patients With Cervical Cancer | Cancer Network  http://www.cancernetwork.com/oncology-journal/fertility-preservation-patients-cervical-cancer

#cervicalcancer rates and disparities nytimes.com/2017/01/23/hea…

Time Magazine : Cervical Cancer Rates http://time.com/4643570/cervical-cancer-death-rates-study/

HPV vaccine: A smart way to protect kids from cancer  https://www.mdanderson.org/publications/cancerwise/2013/06/hpv-vaccine-a-smart-way-to-protect-kids-from-cancer.html

How to Talk to Your Kids about HPV https://www.mdanderson.org/publications/focused-on-health/january-2017/HPV-vaccine-talk-to-your-kids.html

Treatments for cervical cell changes: cancer.gov/types/cervical…

Who should be vaccinated against #HPV, and when? Tips from our Dr. Haddad: http://blog.dana-farber.org/insight/2017/01/who-should-get-the-hpv-vaccine/