Wednesday, September 12, 2018

September Chat : We Need Support, Where Do We Find It? and Digital Health Fair

This month we decided to hold a chat and digital health fair around the topic of Support for gynecologic cancer patients. We started with a few topic questions about what support gynecologic  cancer patients need and then our health fair began. Organizations that support gynecologic cancer patients were invited to share a few tweets about the organizations and services they provide. Thank you Cancer and Careers, Cancer Hope Network, Clearity Foundation, Elixir Fund, FORCE, Helpsy, IamCervivor, OCRFA, Proactive Genes, SHARE, SPBOC Foundation, Smart Patients, Support Connection and WhatNext for making our first Digital/Virtual Health Fair such a success.

We were pleased that 61 people participated in this chat with 2.7 million impressions and 658 tweets. You may learn more analytics here.

Some responses to our topic questions include:
T1: What are the types of support patients need at diagnosis, during treatment and after? What is most important for you, your loved one or those you support?
  • At first I see a big need to not feel alone. Also a competing desire to learn all you can but also not wanting to overwhelm yourself.
  • As many facets as there are in our lives, each of them requires support as cancer touches everything.
  • I wished I had someone to navigate and to research for me when first diagnosed. I've been that person to many others. I needed a "me" for me.
  • Knowledge is power here. Patients are in need of education and supportive resources
  • Support that includes caregivers and family members so they can better support their loved one.
T2: For emotional support, do you attend in-person groups, online groups, one-on-one? Why or why not?
  • A combination of support is helpful for different needs.
  • There is a benefit to each type of support program and it depends on the person's personality what they're comfortable with. Many orgs, incl. us, offer a variety of support programs so that people can find the best fit.
  • online Facebook group only. Once a month at hospital hasn't been convenient.
  • All of them. Talking to a person who has gone through it gives you different support than taking part in in-person groups.

Then we moved on to our Digital Health Fair.  

Here are a few tweets from each participating organization. You may find and follow each organization on Twitter or on the internet.  Please refer to the transcript for additional tweets and information from each participant. 

Cancer and Careers

Cancer Hope Network


Clearity Foundation


Elixir Fund 




FORCE

Helpsy



IamCervivor



OCRFA




Proactive Genes
SHARE



SBPOC



Smart Patients


Support Connection

WhatNext 


We also celebrated our 5th anniversary as a chat and Twitter community.



Remember if you are a patient or caregiver you may continue this discussion on the Smart Patients Platform https://www.smartpatients.com/gyncsm ). 

Join us next month on October 10, 2018 at 9pm when we chat about Managing Cancer Pain. 

See you then, 

Dee

Saturday, September 8, 2018

Sept. 12, 2018 Chat: We Need Support , Where Do We Find It?



This month, on Wednesday, September 12th at 9:00pm ET, the #GYNcsm community will be hosting our first ever "digital health fair" in conjunction with our chat topic We Need Support, Where Do We Find It?. We will begin the chat with a few questions about the needs of women and caregivers diagnosed with a gynecologic cancer and what resources they have found helpful, then our "digital health fair" will begin. The organizations taking part will share a few tweets on the services they provide and participants can ask questions.

To date the following groups will be joining us:










         Cancer and Careers

What Next 

If you are an organization that supports women diagnosed or at risk for a gynecologic cancer and would like to participate in our chat please tweet/DM to @gyncsm your interest in participating or e-mail us at gyncsm@gmail.com so we can add you to our list.

We are also excited that this month is our 5th Anniversary as a Twitter Community. We would not have been able to continue our mission to support those whose lives have been impacted by a gyn cancer without all your help. Our sincerest Thank You!



See you on the 12th!

Dee and Christina 
Co-founders #gyncsm 

Wednesday, August 8, 2018

"What is OK During Treatment" August 8, 2018 Chat


Tonight we had the chance to learn "What is OK during treatment?". We covered what is OK in terms of exercise, food, sexual intimacy and vitamins. We also allowed our participants to ask their own "Is it OK to..." question at the end of the chat. It was a pleasure for us to have Sangeeta Agarawal RN, Ms, CAS (@sanHelpsy), founder of Helpsy join us as a guest for this evening's chat and provide valuable information on a number of topics. 

You may find our transcript here and analytics here

We are happy to share a few highlights from tonight's chat below. Resources may be found at the bottom of this post. 


T1: Is it OK to… take supplements and vitamins during chemotherapy? How about during radiation therapy?
  • It is important to let your MD know any vitamins/supplements you are taking to ensure that they will not counteract your chemo
  • For example, antioxidants can counteract the effect of chemotherapy by clearing out the free radicals that damage the cancer
  • We recommend a simple multivitamin during treatment for cancer
  • You can find more information about herb supplements on NCCIH's HerbList App and Memorial Sloan Kettering's About Herbs app
  • Avoid taking high doses of antioxidant supplements during chemotherapy and radiation treatments as they may interfere with treatment
T2: Is it OK to… exercise during treatment? Are there specific exercises that are good to do after abdominal surgery?
  • We absolutely encourage exercise during treatment for cancer - it can help reduce stress and manage symptoms such as fatigue
  • Start with light exercises - slow with yoga, walking or stretching, work your way up to cycling, swimming, aerobic exercise once you feel ready. Talk to your oncologist and care team to design the right fitness routine for you
  • After abdominal surgery, it's important to avoid anything that strains your core/abdomen, stick w walking & low impact exercise
  • Supervised resistance training is good during and after treatment as it helps maintain muscle and bone mass
  • Try exercises like finger rolls, finger taps to help with neuropathy in your hands and fingers; exercises like calf raises, ankle circles, standing heel to toe for neuropathy in feet
  • There are even tutorials for seated yoga - you can get in your movement in many different ways.
  • Maintain a diary to record exercise sessions. Plan exercise for good and bad days, days when you experience intense symptoms
  • And exercise (appropriate for your current level of health) is excellent for your mental health, too
  • Exercise reduces fatigue at 40-50%, provides muscle strength, flexibility & general conditioning, control weight. Avoid swimming if on R/T chlorine irritate radiated skin as per reading
T3: Is it OK to… eat raw fruits and vegetables during treatment?
  • Try to include colorful fruits and vegetables, at least 2.5 cups every day, be sure to wash them thoroughly
  • Include citrus fruits like grapefruits and oranges and deep yellow and dark green vegetables
  • very imp to wash them thoroughly before eating. Check any warnings about breakout of disease
  • Vegetable sprouts such as mung bean, alfalfa, broccoli and radish should not be eaten raw, only consume pasteurized juices
  • Do not consume from outside - fresh salsa or salad dressings found in refrigerated sections of the grocery store; shelf-stable salsa and dressings are okay
  • In case of loss of appetite or desire to eat, talk to your health care team about nutrition consult so they can suggest recommendations to help improve taste and appetite
  • No need to avoid raw food completely! Avoid outside raw food. Avoid raw sushi
  • I also tell patients that beware of coffee and soda. You don't get proper hydration from those products.
T3 cont'd - What about soy and soy products?
  • Soy products contain phytoestrogens and not estrogen, soy contains essential amino acids, magnesium, potassium, fiber, and other vitamins. Try picking organic sources of soy
  • Soy dietary supplements may not be a healthy choice, consult your physician 
  • No harm in eating soy. Just ensure your body can digest it. Eat organic soy products.

T4: Is it OK to… have sexual relations while in treatment?
  • No reason to avoid sexual relations, it is not sexually transmitted or contagious and won't cause the cancer to return
  • You can absolutely have sex during treatment - there is no risk as long as you have the energy for it!
  • If you are in the mood or have energy for it! Go for it! Sex releases happy chemicals and builds closer bond with partner. 
  • Fatigue, pain, and discomfort after surgery could interfere with sexual relations, use vaginal lubricants to alleviate the pain
  • Radiation may cause vaginal swelling and bladder inflammation, sexual relations may be comfortable after a short healing period of about 2-4 weeks 
  • Cuddling, kissing and other forms of intimacy feel good too! :)
  • It's very important to bring up this topic and discuss any questions. Many times providers and patients both avoid it, but it's an important part of our life that needs discussion and clarity 
T5: We’ll now open the floor to allow our participants to ask other “Is it OK to...” questions. What haven't covered? 

Question: How about getting your flu shot? I think it is ok with chemo and radiation but they aren't sure about getting it with immunotherapy and other new kinds of treatment....
  • Usually it's given, but based on some treatments like immunotherapy - it may be held for a bit. Important to check with oncologist 

Question: Is it ok to be around kids or adults ( shingles ) who have had vaccines?
  • Most are safe, but when WBC is very low, better to avoid contact during days of nadir/lowest white blood cell count
Question: For nutrition and exercise... any different recommendations for immunotherapy vs. more standard treatments? Or is there not much studies on that yet?
  • so far, our recommendations for nutrition and exercise don't change for immunotherapy - we are still learning though
Thank you everyone who took part in our discussion. Remember if you are a patient or caregiver you may continue this discussion on the Smart Patients Platform https://www.smartpatients.com/gyncsm ). 

We hope you will join us for the next #gyncsm chat: Wednesday, September 12, 2018 where in addition to chatting about on We need support - Where do we find it?.  We will also be celebrating the #gyncsm Community's 5th Anniversary. 


See you in September. 

Dee
#gyncsm co-founder


RESOURCES

Taking vitamins/supplements:

Supplement Showdown : A Look at Vitamins and the Fight Against Cancer
https://www.curetoday.com/articles/supplement-showdown-a-look-at-vitamins-and-the-fight-against-cancer-

Dietary Supplements During Cancer Treatment: Yes or No?
https://health.usnews.com/health-news/patient-advice/articles/2015/07/01/dietary-supplements-during-cancer-treatment-yes-or-no

ACS @AmericanCancer website
https://www.cancer.org/treatment/treatments-and-side-effects/complementary-and-alternative-medicine/dietary-supplements.htm


Exercise:



pelvic exercises via @PelvicGuru1
 https://pelvicguru.com/2013/12/28/what-is-pelvic-physical-therapy-and-why-doesnt-everyone-know-about-it/

Eating raw fruits and vegetables:



Savor Health blog
http://savorhealth.com/blog/

Health Care System Eliminates Neutropenic Diet in Patients with Cancer with no Rise in Infection
https://www.curetoday.com/articles/health-system-eliminates-neutropenic-diet-in-patients-with-cancer-with-no-rise-in-infections

Eating soy: 

Tamar Rothenberg, RDN Is Soy Helpful or Harmful for Cancer Patients
https://www.tamarrothenbergrd.com/single-post/2018/01/10/Is-soy-helpful-or-harmful-for-cancer-survivors

@fredhutch Soy Is it Safe for Cancer Survivors
https://www.fredhutch.org/en/treatment/survivorship/survival-strategies/soy-safe-for-cancer-survivors.html

Having sexual relations during treatment:


Guide to Sexuality During & After Cancer Treatment
https://www.oncolink.org/support/sexuality-fertility/sexuality/women-s-guide-to-sexuality-during-after-cancer-treatment

Foundation For Womens Cancer
http://www.foundationforwomenscancer.org/wp-content/uploads/Sexuality-Brochure_Final.pdf

Mindy Schiffman, PhD. Sexuality and Intimacy after Cancer in this video
https://t.co/8bw9Lr79Zc

Be around children who are recently vaccinated: 

Eating cake and sugary foods:

Miscellaneous:
The Chemotherapy Survival Guide Authors Judith McKay, RN, OCN and Tamera Schachen, RN, OCN, MSN

Friday, August 3, 2018

August 8, 2018 What is OK during Treatment?


Over the past few years #gyncsm has heard questions from women about what they should or should not do during treatment. Such as, is it OK to...
  • exercise? 
  • eat raw fruits and vegetables? 
  • have sexual relations during treatment? 
  • take vitamins? 
  • eat soy or not? 
  • take supplements during chemotherapy? 
  • be around children who have recently been vaccinated? 
  • eat cake and other sugary food?
Even as treatments options are expanding for women diagnosed with a gynecologic cancer - from chemotherapy and radiation therapy to targeted therapies and immunotherapies - women still are looking for guidance in these areas.

Join us as this month as we welcome Sangeeta Agarawal RN, Ms, CAS (@sanHelpsy), founder of Helpsy "an integrative medicine platform for improving symptoms and health outcomes", as our guest. Sangeeta has long been involved with the Stanford MedicineX conferences and her mission is to empower people with the best quality of life by bringing together the best of eastern and western medicine and disseminating it using the power of technology. Sangeeta hosted a panel discussion in 2016 with the Oncology Nursing Society: Complementary & Alternative Medicine – A 360-degree View.

During the chat we'll be sharing information such as this National Comprehensive Cancer Network article on Exercise During Cancer Treatment and Memorial Sloan Kettering Cancer Center's article on Eating Well During and After Your Treatment.

We look forward to seeing you on Wednesday, August 8, 2018 at 9pmET (8pmCT, 6pmPT).

Dee
#gycnsm Co-Founder

Wednesday, July 11, 2018

Hereditary vs Somatic Mutations July 2018 Chat

Tonight our topic was Hereditary vs Somatic Mutations in gynecologic cancers. Along with our regular participants we also welcomed a few new community members. We especially appreciate the attendance of Erica Bodner (@EMBOSU), a genetic counselor at MD Anderson Cancer Center for sharing her expertise on hereditary mutations and the role of genetic counselors.

You may find a complete transcript here and analytics here. The resources shared during the chat are listed at the end of this post.

Here is a sample of the responses to the questions we asked during the hour chat.

T1: What is the difference between hereditary mutations and somatic mutations?
  • hereditary mutations (aka germline) = changes or "spelling mistakes" in a gene that we inherit from a parent. The mutation is present in every cell of our body. Somatic mutations are what I think of as tumor-specific: changes that occur in the tumor or cancer
  • “When a mutation occurs within germ cells, it is called a germline mutation. Germline mutations affect every cell in an organism and are passed on to offspring. When a mutation occurs in a somatic cell, it is called a somatic mutation.”
  • There are some tricky cases where we look at a tumor for it's somatic mutations and accidentally find hereditary (germline) changes -- since those are in all of the cells, often including the tumor. It can get complicated!
T2: Which gene mutations are known to be associated with hereditary gynecologic cancers?
    • 1) a single gene is like a very long sentence...a mutation=a letter change somewhere within that sentence that causes the sentence to not make any sense to the body. There can be 100s of spots in any given gene that can have a mutation
    • (2): for gyn cancers it's often easier to think about which cancers are linked to which hereditary conditions. Ex: ~3% of endometrial cancers are due to Lynch syndrome (caused by a mutation in 1 of 5 genes: MLH1 MSH2 MSH6 PMS2 or EPCAM)
    • (3) about 10-20% of "epithelial" ovarian cancers are due to a hereditary cause...most often a mutation in BRCA1 or BRCA2, but sometimes can be due to a mutation in a Lynch syndrome gene or a "moderate penetrance" gene like RAD51D
    • Genetic mutation an alteration in DNA occurs after conception ovarian CA inherited mutation in BRCA1/BRCA2
    • Yes. BRCA associated ovarian cancers are more frequently high grade serous carcinomas whereas Lynch syndrome associated ovarian carcinomas are nonserous (most endometrioid or clear cell)
    • BRCA1 and BRCA2
      T3: What testing is needed to find hereditary mutations?
          T3 follow-up... What are the differences between clinical genetic tests and Direct To Consumer (DTC) tests?
          • T3 (1) clinical genetic tests are ordered by your genetic counselor and/or doctor for medical purposes + have high levels of quality control & regulation. DTC labs (historically) have been tests ordered by any1 from home + often used different technology+ non-med purpose
          • 2) now we're starting to see clinical-DTC Hybrids like @Color that are a little bit of both. The genetic testing area is growing & changing very fast...luckily it's our job as genetic counselors to keep track of what's out there & can help navigate you to best options
          • T3: There have been many articles recently about what DTC do and do not cover. Most would need a clinical lab test to confirm results. Genetic counseling key before to decide and after to be sure understand results
          • Evaluation of some direct-to-consumer genetic testing reveals inaccuracies and misinterpretations #gyncsm http://www.facingourrisk.org/XRAYS/inaccurate-dtc-results?utm_source=social&utm_medium=social&utm_campaign=XRAYS%202017-2018%20social%20monitoring
          • Cannot be overemphasized the importance of having ur health care team involved. Confirming DTC results in a clinical laboratory that's well versed in complex variant detection & classification is essential. This is concerning... https://www.nature.com/articles/gim201838
          T4: Do we know what somatic mutations are prevalent in gynecologic cancers?
          • I found this journal article "13 most important genes for gynaecological cancers, being BRAF, CDKN2A, CTNNB1, FBXW7, FGFR2, FGFR3, FOXL2, HRAS, KRAS, NRAS, PIK3CA, PPP2R1A and PTEN." http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0093451
          • Research on somatic mutations is early but is part of the personalized/precision medicine puzzle. BRAF, KRAS, PIK3CA and PTEN have been identified with epithelial ovarian tumors. There are also somatic BRCA mutations. 
           T5: How does knowing you have these mutations impact your healthcare decisions?
            • knowing if you have a hereditary mutation (or not) can impact cancer treatment decision making, cancer screening/prevention options, and can provide info to relatives so they can better understand their cancer risks
            • hereditary mutations can signal risk for other, separate cancers... This can be information to help guide screening and prevention (but the info might also feel like a burden, especially if you are already dealing with one cancer dx).
            • For those already diagnosed, more and more research is coming out to help select the best treatment based on which mutations are present. Genetic and tumor tests can help decide what to try when standard tx doesn't work - or even what to try first.
            • Do you chose prophylactic surgery? Vigilant testing ? #gyncsm. Tough choices
            • Women w/ OC knowing they are BRCA allows for additional treatment options on - PARP for example
            • Knowing that you are at risk for a certain cancers can be powerful information that allows you to take preventative risk reduction measures against developing those cancers
              T6: What role do genetic counselors play in helping patients understand the results of testing?
                • My personal bias is to hope that genetic counselors have good relationships with mental health professionals to refer patients to.
                • Personal risk is discussed. Choices are discussed. Emotional support is discussed. Information is powerful in making best decisions
                • Genetic counseling can be especially important as multi-gene panel might be better suited given your family history (vs testing for one type of mutation).
                • Genetic counselors can help you to navigate and piece together how your cancer history+family history impact your chance to have a hereditary mutation. We can help figure out if the testing you had was hereditary (germline) or somatic.
                • Genetic counselors can help you weigh pro's and con's of genetic testing, and what results could mean for you and your family. Where to get tested? Does insurance cover it? We can help with that too!
                • We can help explain your results, develop a plan for you and your family to help #endcancer. We also want to be a resource - emotional, informational, and for your family. You can find one of us at http://www.nsgc.org @GeneticCouns


                  If you are a patient or caregiver you may continue this discussion on the Smart Patients Platform https://www.smartpatients.com/gyncsm ). 

                  We hope you will join us for the next #gyncsm chat: Wednesday, August 8, 2018 on "What is OK during treatment?" where we'll touch on things like vitamins, supplements, exercise, etc.
                  Have a good month.

                  Dee
                  #gyncsm Co-moderator


                  RESOURCES
                  Germline vs Somatic mutations
                  https://biologywise.com/germline-mutation-vs-somatic-mutation

                  National Society of Genetic Counselors
                  https://www.nsgc.org/

                  FORCE
                  http://www.facingourrisk.org/understanding-brca-and-hboc/getting-tested.php
                  http://www.facingourrisk.org/XRAYS/inaccurate-dtc-results?utm_source=social&utm_medium=social&utm_campaign=XRAYS%202017-2018%20social%20monitoring

                  SGO
                  https://www.sgo.org/newsroom/position-statements-2/genetic-testing-for-gynecologic-cancer/

                  Salon - What Genetic Testing Didn't Tell Me About My Cancer
                  https://www.salon.com/2018/06/24/what-genetic-testing-didnt-tell-me-about-my-cancer/

                  CURE Magazine - Cancer Redefined Personalized Medicine
                  https://www.curetoday.com/community/rick-boulay/2018/07/cancer-redefined-personalized-medicine

                  NATURE - False-positive results released by direct-to-consumer genetic tests highlight the importance of clinical confirmation testing for appropriate patient care
                  https://www.nature.com/articles/gim201838

                  New York Times - The Online Gene Test Finds a Dangerous Mutation...
                  https://www.nytimes.com/2018/07/02/health/gene-testing-disease-nyt.html?nytmobile=0

                  @NIH Fact Sheet
                  https://www.genome.gov/pages/health/patientspublicinfo/genetictestingfactsheet.pdf

                  Designing a High-Throughput Somatic Mutation Profiling Panel Specifically for Gynaecological Cancers
                  http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0093451

                  Friday, July 6, 2018

                  July 11, 2018 Hereditary vs Somatic Mutations


                  The topic of the #gyncsm community's second ever chat was Genetics and Personalized Medicine. Since that day in October 2013 we have learned much more about the mutations associated with gynecologic cancer. This month we will be discussing Hereditary vs Somatic Mutations.

                  If you want to know...
                  • The differences between hereditary and somatic mutations
                  • The gene mutations associated with hereditary gynecologic cancers
                  • What testing is needed to find hereditary mutations
                  • What somatic mutations are prevalent in gynecologic cancers
                  • How knowing you have these mutations can impact your healthcare decisions
                  • What role genetics counselors play in understanding test results
                  ...then be sure to join us on Wednesday July 11, 2018 at 9pm ET

                  The CDC has a wealth of information on genes and genetics at https://www.genome.gov/education/ or check out this Fact Sheet from the NIH  https://www.genome.gov/pages/health/patientspublicinfo/genetictestingfactsheet.pdf

                  We look forward to having you join us on the 11th. 

                  Dee

                  Wednesday, June 13, 2018

                  Let's Define Value of Care June 2018 #gyncsm Chat


                  This month we discussed, for the first time, the topic Value of Care. We were pleased that Sarah Temkin, MD a gynecologic oncologist (VCU Massey Cancer Center) and co-author of the SGO article "The "Value" of value in gynecologic oncology practice in the United States: Society of Gynecologic Oncology evidence-based review and recommendations" joined us for this important discussion. 

                  We had a lively discussion with 46 participants and achieved 2.43 million impressions. You may find the complete transcript here and the analytics here. Resources mentioned during the chat may be found at the end of this post. 

                  Here is a sample of the responses we had to the questions we discussed. 
                  T1a: There been a lot of discussion in recent years about "value of care". Why is it important?

                  • T1a It’s important to remember that more expensive care does not always mean better care. Spending in the US which far exceeds that of other countries is not correlated with commensurate improvements in health outcomes (http://www.commonwealthfund.org/publications/issue-briefs/2015/oct/us-health-care-from-a-global-perspective)
                  • T1a #Healthcarevalue also means avoiding waste - estimated that 20% of healthcare spending is unnecessary care (eg. 2 doctors order the same test) Reducing waste could leave $ for better or more care elsewhere
                  • T1a. There’s a slow culture shift in cancer where it’s no longer just about “will drug X make me live longer” but “will drug X make me live better.” And how you the patient define “better” is your very own definition of “value” - how’s that for #PrecisionMedicine!

                  T1b: How do YOU define the "value of care" you give and/or receive as a patient, loved one, healthcare professional, etc?

                  • T1b the most “valuable care” to me personally is when the healthcare provider LISTENS
                  • And valuable care may mean eliminating therapy – #ASCO18 showed us that as many as 70% of patients with breast cancer don’t benefit (but do get toxicity) from chemotherapy
                  • My definition is improvement In Quality of life per cost of intervention
                  • T1b Net Health Benefit with clinical benefit, financial toxicity, long term survival, palliation of symptoms, Quality of life, treatment free interval
                  • "Value of care" has become increasingly significant as the rise of medical costs for treatments continue to rise. As a patient, I want the most effective treatment for the least cost.
                  • T1b. I value care in which the professional listens and does the best they can under the circumstances, even if things don't always work out.

                  T2: In addition to price, what other information would you need in order to make a judgment on the value of the care you receive (procedures/chemo/visits/etc.)? 

                  • T2 We often lose sight of toxicity and time away from family when prescribing care. If a chemotherapy regimen can be given monthly, but a weekly treatment is prescribed that is a lot of time spent traveling and getting care that could have been saved.
                  • T2 Opportunity costs. Effectivity. Side effects and medicines required to control them, months lost due to not using an effective drug. Quality of life. 
                  • A2: Value of care takes into consideration that patients will be treated well, with compassion and #empathy. Cost savings are irrelevant if I am not acknowledged as a human with goals for my life that may change how I want to pursue treatment
                  • Price wouldn’t be number one for me. It would be how can I make this easier on my loved ones.

                  T3: What are Quality-adjusted life years (QALY)? How do we measure outcomes? What elements are large medical organizations (incl. ASCO and SGO) including in their recommendations on value of care?

                  • QALY economic evaluation to assess the value for money of medical interventions. One QALY equates to one year in perfect health 
                  • Essentially years of life added due to cancer treatment but adjusted by functional status. Is it really worth extending life without living?
                  • just today I read an interesting review of QALY as a measure of healthcare outcome and cost...and the controversy over its use. recently published: https://jamanetwork.com/journals/jama/fullarticle/2682917
                  • @ASCO Value Framework assesses the relative value of cancer treatment regimens that have been studied in #clinicaltrials. This is a combination of clinical benefit, side effects, and improvement in patient symptoms or quality of life in the context of cost

                  T4: How are rising drug, immunotherapy and targeted therapy prices impacting the evaluation of which treatments are of value? How have rising drug costs impacted you?

                  • As a #healthcare provider, I spend more and more time on the phone with insurance companies trying to justify treatments that may be of benefit to an individual patient #NotValuable
                  • I cringe every time I read a study about maintenance immunotherapy or targeted therapy where the patient continues it every few weeks (for life) - none of those studies go into the out of pocket costs and consequences of indefinite treatment!
                  • The more recently approved deufs for Gyn cancers ar exorbitantly expensive as compared to older approves drugs. They may not me more effective.
                  • Sarah Kelly LCSW for CacerCare in NYC often hears from patients" I don't want to bankrupt my family" and "I can't afford to live "
                  • T4: for patients who I work with at a local county hospital, access to PARP inhibitors after ovarian cancer recurrence & the identification of an inherited BRCA mutation, can be challenging primarily due to cost when they are un/underinsured
                  • T4. For gyn #sarcoma patients, I think most get new treatments in clinical trials, but I'd love to hear more from them & the doctors who are treating them.
                  • T4 And oral chemotherapy drugs may have completely different out of pocket costs compared infused chemotherapy. They also don't always align with physician financial incentives. 

                  T5: What is being done to encourage including discussions around cost as part of the treatment plan? Are cost and financial toxicity discussions happening during office visits? Do payment models impact care?

                  • Creating a safe space with patients, and honest conversation is important: https://www.cancer.net/blog/2016-04/financial-toxicity-another-hurdle-cancer-treatment
                  • T5. It's not routine to focus on cost, but it isn't uncommon to discuss at some point. That doesn't come up immediately.
                  • in genetic counseling we actually (unfortunately) have a word for all the time we spend counseling patients on cost/insurance coverage/paperwork processes... Genesurance. Definitely cuts into our availability and limits working at the top of our scope
                  • As many of the newer drugs are oral, I often times hear from the pharmacist that the drug is too expensive and the patient can not afford it
                  • T5 Patients experiencing high out-of-pocket costs may reduce their spending on food and clothing, self-reduce their doses (stretch pills), avoid recommended procedures, and skip physician appointments to save money
                  • T5: $ discussions are so tough in onc bc we’re talking about cancer, a life-altering illness. How do you decide when a drug is not worth it? What I CAN do at this stage is make it ok to talk about co-pays & expenses in clinic - I ask my pts about their #financialtoxicity.

                  If you are a patient or caregiver you may continue this discussion on the Smart Patients Platform https://www.smartpatients.com/gyncsm ). 

                  We hope to see you next month on July 11, 2018 at 9pm ET when we discuss Hereditary versus Somatic Mutations.

                  Please continue to tag your tweets with #gyncsm with information and news important to our community. 

                  See you next month. 
                  Dee
                  Co-founder #gyncsm 

                  RESOURCES

                  Presidents Panel: Cancer costs and value
                  https://www.cancer.gov/news-events/cancer-currents-blog/2018/presidents-cancer-panel-drug-prices?cid=eb_govdel

                  @CancerDotNet :
                  Managing Care
                  https://www.cancer.net/navigating-cancer-care/managing-your-care/taking-charge-your-care
                  Making Decisions
                  https://www.cancer.net/navigating-cancer-care/how-cancer-treated/making-decisions-about-cancer-treatment
                  Financial Toxicity
                  https://www.cancer.net/blog/2016-04/financial-toxicity-another-hurdle-cancer-treatment
                  Understanding Cost related to Cancer Care
                  https://www.cancer.net/blog/podcasts/understanding-costs-related-cancer-care

                  ASCO Value Framework
                  https://www.asco.org/practice-guidelines/cancer-care-initiatives/value-cancer-care
                  http://ascopubs.org/doi/abs/10.1200/JCO.2016.68.2518

                  Value: The Next Frontier in Cancer Care
                   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4912371/

                  QALYs in 2018
                  https://jamanetwork.com/journals/jama/fullarticle/2682917

                  @sloan_kettering Abacus a drug pricing lab/tool
                  https://drugpricinglab.org/tools/drug-abacus/

                  @FacingOurRisk
                   http://www.facingourrisk.org/get-involved/HBOC-community/BRCA-HBOC-blogs/FORCE/general/nccn-summit-explores-patient-perspectives-of-value-in-cancer-care/

                  @ascopost clinical benefits/cost of Car-T cell therapy
                  http://www.ascopost.com/issues/may-25-2018/weighing-the-cost-and-value-of-car-t-cell-therapy/?email=865aa94a58f0b27b9edd2aa71d80e9a99b924971f7ce90316a0d742b2e9c9b1c

                  NCCN White Paper
                  https://www.nccn.org/jnccn/supplements/pdf/JN1407_2RePR_Nardi.pdf

                  What is value in healthcare? via #hcldr
                  https://www.nejm.org/doi/full/10.1056/NEJMp1011024?viewType=Print2010

                  Crowdfunding for Prostate Cancer and Breast Cancer
                  https://onlinelibrary.wiley.com/doi/abs/10.1111/bju.14408

                  How Should We Define Value in Cancer Care?
                  http://theoncologist.alphamedpress.org/content/15/suppl_1/1.long

                  Charges and costs aren’t the same thing
                  http://www.kevinmd.com/blog/2017/06/charges-costs-arent-thing.html

                  Spending on cancer drugs in the U.S. has doubled in the last five years, and will double again
                  https://www.statnews.com/pharmalot/2018/05/24/cancer-drugs-spending-prices/

                  How do Patients Define Value in Cancer Care
                  https://www.huffingtonpost.com/kim-thiboldeaux/how-do-patients-define-va_b_7939662.html