"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

• This literature review found no need for a neutropenic diet: https://t.co/FBixFWj5Nt

• 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:

https://blog.dana-farber.org/insight/2014/02/should-i-take-vitamins-and-supplements-during-cancer-treatment/

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:

http://ovarian.org/component/content/article/33-latest-nocc-updates/362-tips-for-exercising-during-and-after-cancer-treatment

https://www.roswellpark.org/media/news/exercise-may-reduce-risk-cervical-cancer

http://exerciseismedicine.com.au/wp-content/uploads/2016/11/2014-Gynaecological-Cancer-FULL.pdf

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:

https://www.cancer.org/content/dam/cancer-org/cancer-control/en/booklets-flyers/life-style-changes-that-make-a-difference.pdf

http://www.aicr.org/new-american-plate/cancer-preventive-diet-model-plate.html

https://medlineplus.gov/ency/patientinstructions/000061.htm

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: 

https://www.oncologynutrition.org/erfc/hot-topics/soy-and-hormone-related-cancers/

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:

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/sexuality-for-women-with-cancer/problems.html

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/sexuality-for-women-with-cancer/faqs.html

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: 

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/infections/vaccination-during-cancer-treatment.html

Eating cake and sugary foods:

https://www.oncologynutrition.org/erfc/healthy-nutrition-now/sugar-and-cancer/

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

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

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?

• if someone had a diagnosis or family history of ovarian cancer, or other cancers, they may qualify for genetic testing. Your MD or a @GeneticCouns can help you figure out if you qualify. Testing can be done on blood, saliva, or a skin punch biopsy (rare cases)
• Every woman facing an #ovariancancer diagnosis should have germline #genetictesting regardless of age or family history. Too many women are slipping through the cracks & not getting tested.
• T3 @SGO_org recommends genetic testing in this statement for OC and endometrial https://www.sgo.org/newsroom/position-statements-2/genetic-testing-for-gynecologic-cancer/ 
• T3 here is a good fact sheet from @NIH https://www.genome.gov/pages/health/patientspublicinfo/genetictestingfactsheet.pdf

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

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

#gyncsm Co-founder



Related Content:
Genetic Counselors and Gynecologic Cancer Risk - March 2016
Advances in Personalized Medicine for Gyn Cancers - May 2015

Gynecologic Cancer Risk Factors - January 2015

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

June 13, 2018 Let's Define Value of Care

Over the past few years there have been many discussions and articles written on the value of different health care treatments, technologies and protocols. As we see amazing developments in targeted therapies, we see rising costs for those same cancer treatments. Spending on cancer treatments has doubled in five years. We talk in "QALY" Quality-adjusted life years. We hear of financial toxicity. How do we measure outcomes to determine which treatment is of value? We have had these type of discussions online and around our dining room tables. Other online communities such as the #hlcldr community have had this discussion (https://hcldr.wordpress.com/2016/01/03/value-in-healthcare/). Organizations such as NCCN, ASCO and SGO have presented their recommendations for finding value of cancer care.

This month we will be discussing Value of Care with special guest, Sarah Temkin, MD (@temkins). Dr Temkin is a co-author of the article "The "Value" of value in gynecologic oncology practice in the United States: Society of Gynecologic Oncology evidence-based review and recommendations". You may read the article at
https://www.sgo.org/wp-content/uploads/2012/09/Final-PDF_Value_Article.pdf

Our Chat will be guided by these questions:

T1a: There been a lot of discussion in recent years about "value of care". Why is it important?
T1b: How do YOU define the "value of care" you give and/or receive as a patient, loved one, healthcare professional, etc?

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.)?

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?

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?

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?


Dee
#gyncsm co-founder

Palliative Care- When and Why - May 2018

For this month's chat, Palliative Care - When and Why, we welcomed guest Christian Sinclair (@ctsinclair), a palliative care and hospice physician, editor of Pallimed and founder of the #hpm community on Twitter. Fifty-four participants made over 2.3 million impressions during the hour chat. You may find more analytics here and the transcript here.

Here is a sampling of responses. Please scroll down for Resources. 

What do you think of when you hear the term "palliative care"? What does it mean to you?

• PalliativeCare is symptom management offering emotional support, to patient and family. At any time during Cancer dx not just eol.
• Living life on your terms with the help of team of healthcare professionals who support the patient and family
• Palliative care-I think of a critical piece of overall care during serious illness, pain, and end of life.
•  I think of palliative care as an opportunity for someone to receive whatever support (pain management, counseling, home care, accessing info/resources, etc.) they may need when progressing through a health problem that may be life limiting #gyncsm
• Palliative care should be available at any age and any stage. The goal is support. 
• We #hpm docs spend quite a bit of time clarifying perceptions of the field (ie. its not just end of life care). Our #PalliativeCare thermometer highlights the domains of a person's care that may be of importance to them! #Palliative Care is whole person care!

This first question also began a discussion regarding the term "Palliative care". Some felt that the term may actually turn patients off from getting the care they need. Some centers use the term Supportive care. Sinclair responded "There are lots of debate inside and outside the palliative care community about finding the best name. Ultimately it comes down to organizational/community culture, and making sure the clinicians feel comfortable introducing the concept as concurrent, not either/or".

When do cancer patients tend to get referred to a palliative care specialist? Do you find this to be a tricky conversation? Patients - Did anyone on your care team discuss palliative care with you?

• ASCO recommends PalliativeCare is offered within 8 weeks after dx
• We are seeing more family and patient-initiated #pallaitive care referrals. As they realize they can have more support, they are starting to ask for it and our oncologists are open to collaborating with us. Caveat: I am in an academic med center in a metro area.
• Patients with advanced cancer should be referred to #pallativeCare early and it should be an integral part of treatment, not just something added on near the end of life
• I see them referred too late. Palliative care is still associated with end of life & have been told “they aren’t ready for that”. Who’s not ready for patient centered care that views the whole person not the illness & manages all symptoms physical, emotional, etc.?!

Why is knowledge of and access to palliative care throughout cancer treatment important? Does Medicare/Insurance cover palliative care? Are there specialists in rural areas?

• For this chat I found this @ASCO Connection article : Telemedicine has been used for those in rural areas.https://connection.asco.org/blogs/telemedicine-palliative-and-supportive-care-continuing-conversation
• Looking at symptom management by a specialist in the field offers a complementary approach to managing the disease itself by treating the patient as a whole being. Services are covered but often require copay. Rural areas often lack service
• Medicare covers PalliativeCare for symptom management in some extent Improving Quality of Life and prolong survival.
• #Telehealth show great promise is rural settings, along w/ patients' willingness to engage. Telehealth reduce travel needs, removing physical and financial burdens associated with travel. Telehealth utilization for #pallativeCare is emerging rapidly

What are medical and advocacy organizations doing to promote palliative care for cancer patients? How can patients advocate for themselves?

• NCI, NHPCO. SWHPN. GetPalliativeCare. org Be more proactive
• I do appreciate the statement from @SGO_org on the importance of #palliative care in #gyncsm #openaccess https://www.sgo.org/wp-content/uploads/2015/05/Palliative-Care-published-May-2015-Gyn-Onc.pdf
• Random, but I tell patients to grab one of every brochure at their Onc office and look through to find the things you might need and then ask with the brochure. It’s crazy how many supports exist that I’ve only found out about that way. They always make a brochure!

What do you wish you knew about palliative care at the beginning of your experience with a cancer-related diagnosis? For those who have worked with a palliative care specialist, what was most helpful? most challenging?

• I think more and more patients appear to be more empowered to not just get the latest greatest cutting edge research treatment, but to make sure they get all their needs met. Aiming for whole person care. To be fair though, advocating for yourself is really hard work
• Considering how much time we have to spend talking through acute issues with my GynOnc since I’ve been terminal, it’s not surprising we don’t talk about palliative care. I’m focused on getting more Oncs to have this talk when cases aren’t as complicated.
• I wish I had known when my dad was diagnosed that pts in #palliativecare can still go to PT and OT to help them gain the strength to return home for EOL. It would have saved so much pain for him while he tried to get strong enough to return home.

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

Be sure to check our resources below.

Join us next month on June 9th for Let's Discuss Value of Care.

See you then.
 
Dee
#gyncsm Co-founder

Resources
Perceptions of #palliative care by people with adv cancer and their caregivers
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938707/

Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center.
https://www.ncbi.nlm.nih.gov/pubmed/21212438

Predictors of high symptom burden in gynecologic oncology outpatients: who should be referred to outpatient palliative care?
https://www.ncbi.nlm.nih.gov/pubmed/24472408

Practice Patterns, Attitudes, and Barriers to Palliative Care Consultation by Gynecologic Oncologists. https://www.ncbi.nlm.nih.gov/pubmed/28783424

Economics of Palliative Care for Hospitalized Adults With Serious Illness https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2678833?utm_source=twitter&utm_campaign=content-shareicons&utm_content=article_engagement&utm_medium=social&utm_term=050818&redirect=true#.WvJSZ-FbZeU.twitter

Palliative Care in the Global Setting Resource-Stratified Guideline
https://www.asco.org/practice-guidelines/quality-guidelines/guidelines/supportive-care-and-treatment-related-issues?et_cid=40284775&et_rid=977394059&linkid=Palliative+Care+in+the+Global+Setting%3a+A+Resource-Stratified+Guideline_link#/31016

@theNCI Palliative Care in Cancer Care
https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet

@Cancerdotnet Caring for the symptoms of cancer and its treatment
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/palliative-care/caring-symptoms-cancer-and-its-treatment

@SGO_org
https://www.sgo.org/newsroom/position-statements-2/delivery-of-palliative-care-services/

Dana Farber
How Does Palliative Care Help Cancer Patients? | Dana-Farber ...

ASCO Connection: Telemedicine in Palliative and Supportive Care: A Continuing Conversation
https://connection.asco.org/blogs/telemedicine-palliative-and-supportive-care-continuing-conversation

Links to Palliative Care Graphics Shared:
https://twitter.com/skochb/status/994387131161366528
https://twitter.com/IshwariaMD/status/994387821770297344
https://twitter.com/IshwariaMD/status/994388792747360256

https://twitter.com/skochb/status/994387131161366528
https://twitter.com/skochb/status/994387131161366528
httpwitter.com/skochb/status/994387131161366528