Wednesday, January 9, 2019

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? T4: What are cancer treatment vaccines? How do they work? When are they used - after front-line? T5: In which gynecologic cancers are treatment vaccines being studied? Has there been progress in this area? 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

Friday, January 4, 2019

First Chat of 2019 - Vaccines in Cancer Care and Risk Reduction 1/9/19

"Vaccine therapy is a type of treatment that uses a substance or group of substances to stimulate the immune system to destroy a tumor or infectious microorganisms such as bacteria or viruses." - NCI



We have talked in this community about how the HPV vaccination reduces the risk of cervical cancer (HPV and Cervical Cancer - 2/2017). Did you know it may also help reduce head and neck cancers caused by HPV? Did you know that the Hepatitis B vaccine helps reduce long term infection with HPV which can lead to liver cancer? Did you know that vaccine research to treat ovarian cancer is currently taking place? 

If you would like to learn more about the use of vaccines to treat and reduce your risk of cancer, please join us on Wednesday January 9, 2019 at 9pmET (8pmCT, 6pmPT) as the #gyncsm community chats about Vaccines in Cancer Care and Risk Reduction.

Since January is Cervical Cancer Awareness Month, we will include the HPV vaccine and latest CDC recommendations. We will also look at current ovarian cancer trials and how a patient's immune system can be trained to fight cancer tumor cells.

Guiding our discussion will be the following Topic (T:) questions:
T1: What vaccines are available before you develop cancer to reduce your risk? Are there different types?
T2: What cancers can be caused by HPV? How does the HPV vaccine reduce the risk of HPV-related cancers?
T3: What are the current U.S. recommendations for HPV vaccination? Who should get vaccinated, when and how many doses?
T4: What are cancer treatment vaccines? How do they work?
T5: In which gynecologic cancers are treatment vaccines being studied? Has there been progress in this area?

You may learn about our topic on this Cancer.Net page:
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines

See you on Wednesday!
Dee
Co-moderator

Wednesday, January 2, 2019

Looking for a #_CancerSocialMedia Chat?

If you are a reader of this blog you know that the #gyncsm (Gynecologic Cancer Social Media) community holds a regular Tweet chat on 2nd Wednesdays at 9pm Eastern Time. Did you know that there are other Twitter chats and communities for those impacted by cancer? As we begin the New Year, we wanted to take a moment and share with you a number of regular #_csm chats that may be helpful to you, a friend or loved one.

#bcsm breast cancer social media  Handle: @BCSMChat
Chats: Weekly on Monday 9pm Eastern Time
This long running chat started on 7/4/2011 by Jody Schroger and Alicia Staley. BCSM's mission is dedicated to empowering those affected by breast cancer through programs that provide evidence-based information in a supportive and compassionate manner. Moderated by @stales and @DrAttai

#lcsm lung cancer social media  Handle: @lcsmchat
Chat: 2nd Thursdays at 8pm Eastern Time 
The first chat was held on July 25, 2013. The focus of LCSM is to use social media in an innovative manner to educate, develop public support, end the stigma, and facilitate successful treatments for the leading cause of cancer deaths worldwide. Moderated by Dr. H. Jack West @JackWestMD and Janet Freeman-Daily @JFreemanDaily

#btsm brain tumor social media  Handle: @BTSMchat
Chat: First Sunday each month at 9pm Eastern Time
The chat was inspired by the #bcsm chat and was founded in February 2012. Information on how to participate in the chat may be found at https://thelizarmy.com/2013/05/how-to-participate-in-the-btsm-tweet-chat/  Moderated by @cblotner_ @thelizarmy @adamhayden

#MMSM Multiple Myeloma Social Media Chat
Chat: Wednesdays 3-4pm Central Time
Find out more information by following #MMSM on Facebook
https://www.facebook.com/MultipleMyelomaMMSMTweetChat/

#PANCChat Pancreatic Cancer Tweet Chat 
Chat: Last Tuesday of each month at 8pm Eastern Time
Founded in April 2016, the chat was developed to provide relevant, credible, and timely information to the PC community. Read more in the journal article http://ascopubs.org/doi/abs/10.1200/JCO.2018.36.4_suppl.242
Co-hosts: @PanCAN@DrAllysonOcean and guest experts

#ayacsm Adolescent and Young Adult Cancer Chat 
Chat: First Tuesday of the month at 8pm ET
Chats are attended by advocates, health care providers and survivors and offer topics of interest to adolescents and young adults.
Host: @EK_Drake

Symplur lists cancer-related hashtags on their Cancer Tag Ontology page (https://www.symplur.com/healthcare-hashtags/ontology/cancer/)

Other chats that may be of interest to our followers include:

#hpm chat Hospice and Palliative Medicine Chat @hpmchat
Chat: Every Wednesday at 6pm PT/9pm ET.
Moderators @ctsinclair, @rfberry, @EOLnavigator, @GraniteDoc or @acderinger
To be notified of chats please visit - http://www.hpmchat.org/

#HCLDR Health Care Leader Chat @hcldr
Chat: every Tuesday at 8:30pm ET (GMT-5)
A community ( patients, health care providers, caregivers, IT, policy makers etc)  of people who share a passion for improving healthcare.
More information may be found at https://hcldr.wordpress.com/
Founded in 2012. Moderators  @colin_hung and @JoeBabaian

#CureConnect Chat
Chat: Monthly
Hosted by CURE Magazine

#WegoHealthChat 
Chat: Periodic
Hosted by WEGO Health to bring patient leaders together to discuss issues that are important to their various communities.
https://www.wegohealth.com/2017/04/11/10-tips-for-participating-twitter-chat/

#PatientChat Empowered Patient Chat
Chat: Bi-weekly on Fridays 1pm ET
Hosted by Patient Empowerment Network

#PatientsHavePower Chat
Chat: Periodic
Hosted by Clara Health/Breakthrough Crew

#WTFix Chat
Chat: Periodic
Hosted by HealthSparq


If you moderate a chat for those impacted by cancer, please let us know and we will add you to this list.

Happy New Year! 

Wednesday, December 12, 2018

Pelvic Health After a Gyn Cancer Diagnosis Chat - Dec 12, 2018

We finished another wonderful year of informative chats by discussing Pelvic Health After a Gyn Cancer Diagnosis. We were pleased that Dr Tracy Sher (@PelvicGuru1), pelvic physical therapist, was able to join us as our guest.

Some responses to the topic questions may be found below. You may find the complete transcript of this chat here and the analytics here.

T1: What is pelvic health and why is it important?
  • Great question because most people don't know what #pelvichealth is. It involves the entire area of the bony pelvis, lower abdomen, genitals, reproductive organs, muscles, bowel/bladder/sexual function, nerves...and more (for male and female parts).
  • @bcmhouston website states : "Pelvic Health is best possible functioning & management of the bladder, bowel, and reproductive organs. It is not merely the absence of disease or weakness in these organs." 
T2: How do treatments for gynecologic cancers impact women's pelvic health? 
  • Treatment for GYN cancers often create issues with other organs & systems in the pelvis. GYN survivors often have bladder/bowel issues after radiotherapy & surgical treatment
  • During #brachytherpay, radiation is applied directly to the cervix. While effective in treating #cervicalcancer, it’s side effects can be devastating to the pelvis and vagina.
  • Pelvic cancers impact pelvic health - both disease and the treatment can cause pain and organ dysfunction - both surgery and radiation can effect function of the bowel and bladder
  • hysterectomy to treat cancer has complications which need proper care. Hormonal Changes in pelvic structure (improved with pelvic Physio for MSK training which has level 1 evidence Bø et al.)
  • The pelvis is a complex space - with bowel, nerves, bladder, blood vessels - cancer or cancer treatment can impact any of the components.
T3: What options are there for alleviating pelvic pain? What specialists typically treat pelvic pain? What has been your experience with pelvic pain?
  • Many women in our Cervivor community are finding relief from pelvic pain after working with a Pelvic Floor Therapist. However, for those in more rural areas, they may not have this option
  • So, we highly recommend seeking out professionals who know about pelvic pain. Such as GYNs, Urogynecologists, Urologists, Pelvic Physical Therapists, OTs, NPs (to name a few) who attend conferences or take courses in pelvic pain care. (Such as @PelvicPainOrg
  • Seems like several specialists are involved in overall pelvic health - gynecologist, gastroenterologist, urologist, GI docs and there is even a urogynecologist. Seems like patients would need navigation related to their particular symptoms.
  • Here are just some of the things @MayoClinic lists as pelvic pain treatment options: Medication, Physical therapy, Stretching, massage and other relaxation techniques, TENS, Neurostimulation (spinal cord stimulation), injections and psychotherapy. https://www.mayoclinic.org/diseases-conditions/chronic-pelvic-pain/diagnosis-treatment/drc-20354371
T4: How does pelvic health impact intimacy and sexual health? What are tips and resources to maintain intimacy and sexuality after gyn cancer?
  • It’s hard to feel sexy with pelvic pain. 
  • "Asking about sexual pain and dyspareunia and performing a thorough physical examination are essential steps to guide management, which must be tailored to individual patient goals."   Yes! Tailor treatment to the needs of patients https://www.ncbi.nlm.nih.gov/pubmed/27607852
  •  Don’t give up on intimacy. Be patient with yourself. If you have a partner, COMMUNICATE. Communication is KEY to finding what will work for you and your partner.
  • #SexualHealth IS #pelvichealth. It's important for those who have partners to continue to have all sorts of emotional and touch intimacy. Not just penetration focus. I see so many cases where this changes.
  • From a needs assessment in 2010 "Greater than 40% of survivors expressed interest in receiving sexual healthcare, but few had ever sought such care" 
  • It was recommended for me to follow excellent work by people like @will2lovedotcom for resources. Check this out at https://www.will2love.com/ 
T5: What is pelvic physical therapy? How long after pelvic surgery can it be helpful? 
T6: What are some pelvic health resources for those impacted by cancer-related diagnoses? What have you found helpful?
  • Love this question because so many people still don't realize that there are physical therapists who specialize & care for pelvic health conditions. Doing this 20 years and my mentors many more. Patients often say "WHY didn't I know this type of care existed before!?"
  • You can also find excellent people at @APTAtweets @womens_PT @HermanWallace and ask her on twitter with #pelvicmafia
  • Typically, there's a recommendation to wait at least 6-8 weeks after a gyn surgery to do any type of internal/vaginal assessments/treatments for pelvic PT, but there's so much we can do even before that in terms of movement, touch, education, etc.
  • In addition to those organizations and practitioners joining along on #gyncsm, many find the @hystersisters site - not a nonprofit btw and does have ads - helpful. https://www.hystersisters.com/vb2/article_757741.htm

We look forward to having you join us next year on January 9, 2019 when we discuss Vaccines in Cancer Care and Risk Reduction.

Our wishes for the #gyncsm community.:




Dee
Co-moderator

Resources 

@GYNCancer Renewing Intimacy & Sexuality after Gynecologic Cancer brochure https://www.foundationforwomenscancer.org/wp-content/uploads/Sexuality-Brochure_Final.pdf

@DanaFarber Sexual Health, Intimacy and Cancer https://www.dana-farber.org/health-library/articles/sexual-health,-intimacy,-and-cancer/

Gynecologic cancers predict coexisting pelvic floor disorders Publish date: March 30, 2015 https://www.mdedge.com/familypracticenews/article/98401/oncology/gynecologic-cancers-predict-coexisting-pelvic-floor

Life After Cancer: The Role of Pelvic Physical Therapy
https://pelvicpainrehab.com/female-pelvic-pain/2983/life-after-cancer-the-role-of-pelvic-physical-therapy/

American Physical Therapy Association
https://www.apta.org/

Urinary incontinence
https://www.womenshealthapta.org/wp-content/uploads/2013/11/Urinary_Incontinence.pdf

Pelvic Pain
https://www.womenshealthapta.org/wp-content/uploads/2013/11/Pelvic_Pain.pdf


Saturday, December 8, 2018

Dec 12 : Pelvic Health Chat


Updated 12/10/18

We close this year of chats with a discussion of Pelvic Health After a Gynecologic Cancer Diagnosis. Join us on Wednesday, December 12, 2018 at 9pmET for an interesting discussion.

We know that women are impacted in many ways by the treatments they receive for a gyn cancer. This month's questions will be:

T1: What is pelvic health and why is it important?

T2: How do treatments for gynecologic cancers impact women's pelvic health? 

T3: What options are there for alleviating pelvic pain? What specialists typically treat pelvic pain? What has been your experience with pelvic pain? 

T4: How does pelvic health impact intimacy and sexual health? What are tips and resources to maintain intimacy and sexuality after gyn cancer? 

T5: What is pelvic physical therapy? How long after pelvic surgery can it be helpful? 

T6: What are some pelvic health resources for those impacted by cancer-related diagnoses? What have you found helpful?

In preparation for this chat, please check out Pelvic Guru's (https://pelvicguru.com/for-patients/) patient pages. 

We look forward to having you join us. 

Dee
#gyncsm co-moderator

Wednesday, November 14, 2018

Cancer and Careers - Nov 14.2018 Chat

This evening we held our first discussion on Cancer and Careers. While a representative from Cancer and Careers (@cancerandcareers) was not able to join us tonight we appreciate the information they provided to us to share with our participants.

Below you will find our topic questions and a sampling of responses. You may find the transcript here and the analytics here.

T1: Did you work during treatment? What brought you to the decision to work or not work?
Providers - Do you have a sense of what percentage of your patients work during treatment? Do you discuss this with patients?

  • Many women in our community continue to work through treatment, when possible, to keep “normalcy” for themselves and their families.
  • Some gyn cancers might be though of as older women's cancers but the age range is pretty wide even if some ages more likely. Also people are working longer. Work and career is a component of cancer care that needs discussion.
  • For some patient work helps to have something other than cancer to focus on. For others it is a financial necessity and a way to stay insured.
  • Others find that taking a leave from work is helpful. We encourage women to speak with their provider about what is best.  
  • The decision to continue working or not is very variable person-to-person and even with the same chemo. Data presented at @ASCO on employment changes and healthcare use in the year after #cancer diagnosis....more in next tweet  http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.6551
  • 48% pts reported being employed since diagnosis. Among employed pts, 56% reported making an employment change. Most common employment changes were taking extended paid time off (53%), unpaid leave (40%), switching to a flexible schedule (29%).
  • more data on Timing of Employment changes: most were made at initial diagnosis (18.3%), during treatment (70.6%), and ≤12 months post-treatment (26.2%); 28.6% made more than one change.
T2: If you were working when you or your loved one were diagnosed, how much information did you share with your employer? 
What are some guidelines when making decisions about how much to share and when?

T3: What issues did you have if you worked during treatment? 
Are there laws to protect cancer survivors and patients in the workplace during and after treatment? How do you ask for accommodations due to your diagnosis? 

  • #cancer survivors can experience challenges in the workplace like managing side effects, deciding whether to disclose, understanding legal protections and getting the appropriate support from employers & coworkers and so much more via @CancerAndCareer
T4:What do those unable to work due to their cancer diagnosis need to know about state and federal disability laws? What are some resources in this area?
What did you find helpful?

  • States have fair employment laws, many provide additional protection beyond what federal laws offer. Check @triagecancer’s Chart of State Laws covers all of areas of Employment, Estate Planning, Disability & Health Insurance: https://triagecancer.org/statelaws @CancerAndCareer
  • It's important to become familiar with laws in your state regarding work during cancer treatment. Often a nurse navigator or social worker in your hospital or treatment center can help with this info.
  • Patient Advocate Foundation can help patients and their insurers, employers and creditors resolve insurance and job retention issues. https://www.patientadvocate.org/ 
T5: After a cancer diagnosis, how do you handle applying for a new job? What are some guidelines for if, when and how much to disclose?What has been your experience?


Remember you can join us on SmartPatients ( https://www.smartpatients.com/partners/gyncsm) and continue the conversation.

We will finish up the year with a chat on Pelvic Health After a Gyn Cancer Diagnosis. Join us on Wednesday, December 12, 2018 at 9pmET.


Happy Thanksgiving Everyone!


Dee and Christina
#gyncsm Co-founders

RESOURCES

Cancer and Careers

Social Security Disability

Livestrong

Cancer Care

Triage Care
    @triagecancer’s  https://triagecancer.org/statelaws

Cure Today 
    Returning to work after cancer
https://www.curetoday.com/articles/returning-to-work-after-cancer-treatment

    Working Through Cancer-Related Fatigue
https://www.curetoday.com/publications/heal/2018/summer-2018/working-through-cancer-related-fatigue

Cancer Support Community 

Patient Advocate Foundation