"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

Immunotherapy - March 2018 Chat

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Additional resources mentioned during the chat may be found below.

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

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

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

Dee
Co-founder #gyncsm

RESOURCES

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

March 14th Chat: Immunotherapy

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

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

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

Our topic questions will include: 

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

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

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

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

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

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

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

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

See you on Wednesday. 

Dee 

#gyncsm Community Co-founder

June 8, 2016: What's New in Gyn Cancer Research

Thirty-four #gyncsm community members chatted about What's New in Gyn Cancer Research.  Our discussion focused on research presented at the Society of Gynecologic Oncology Annual Meeting (#SGOmtg) held March 19-22 in San Diego, the American Association for Cancer Research Annual Meeting (#AACR16) held April 16-20 in New Orleans, and the American Society of Clinical Oncology Annual Meeting (#ASCO16) held June 3-7 in Chicago.

You may find the transcript here and the chat analytics here. 

We began our chat by remembering our friend and supporter of #gyncsm, Jody Schoger, #bcsm co-founder. She was an amazing advocate. 

Topic Questions / Sample Response Tweets: 

T1:Do you research new treatments and studies online? Do you follow scientific meetings like #SGOmtg, #AACR16 and #ASCO16? 

• I participate in twitter to inform patients and families of key findings from meetings using #SGOMtg #ASCO16 #AACR16
• A caution in keeping up with research is how long it can take for studies to lead to any change in practice guidelines
• Plus I want to be prepared with what options I will have if I recur again
• I find @ASCOPost emails useful.

T2:GOG 252 did not support a previous study which showed IP chemo benefit (tough treatment for many). How does this change things? 

• #ASCO16 session on GOG252 Walker: Median PFS all three arms GOG252 similar
• There is still a benefit for IP chemo - demonstrated in 3 large randomized trials We need to understand who benefits most
• Yes, Dr Gourley mentioned 3 Pos studies(GOG 104,114,172), 1 neg(252)
• I feel more confident telling patients that if they want the benefits of GOG172, we have to at least try the same regimen 
• #ASCO16 session on GOG252 Mackay-“unresolved issues” 

T3:In the hot topics of immunotherapy, precision medicine, and genetics, which #SGOmtg/ #AACR16/ #ASCO16 research excited you? 

• https://t.co/DfjMW5ZPwP adv endometrial cancer : everolimus, letrozole,metformin showed clinical benefit in ph 2study 
• I'm very excited about the interest & research on hereditary cancers and how to use this to guide targeted therapy-new options! 
• Pembrolizumab:well tolerated, showed antitumor activity pts w/ PD-L1+ adv cervical squamous cell cancer.https://t.co/P5KsDdtTUA
• Precision medicine for Gyn disease is finally taking root. It not only bevucizumab anymore
• Kurian: Genes mutations in #ovca article https://t.co/O1mgn5zqoc
•  Liquid biopsies (look for circulating tumor DNA in blood) https://t.co/PUROem0e7N 4 screening and during treatment talked about 
• There was a clear theme of trying to find out who are the responders to a given Rx - understanding the pts that benefit the most

T4: What studies reported at #ASCO16 in palliative care, survivorship, and psychosocial research could help gyn cancer survivors? 

• The data on early involvement of palliative care should be able to be extrapolated to gyn cancer patients and caregivers
• QOL may predict survival in recurrent #ovca @ASCOpost -https://t.co/te0NvFAkPJ 
• Real studies on improving chemo induced. Neuropathy with PT
• Qol: older long term #ovca survivors better QOL than younger https://t.co/OGKtr3t0oi
• It was great to see presentations beyond standard chemo treatment. ASCO. It's not just about chemo

T5: As "patient-centered" research becomes more accepted, what do you see as the role of the patient in future cancer research?

• Been great to see White House precision medicine efforts. workshop this week: Engaging participants as partners in research
• Let's start with adding quality of life components to all studies.
• Being more patient-centered means looking beyond overall survival endpoints. Also need patients in design of studies to reach.
• This from #SGOmtg patient-centered research: Accepting treatment w/ Side Effects change as Goals Change https://t.co/xhY9Wg1FRn
• Patients see so much in the practical side of clinical trials that trial designers don't think about.
• I would love to see advocates on irb. And involved in trial design

Our next #gyncsm chat is on  Wednesday  July13th  at 9pmET when we will discuss Spirituality and Quality of Life with guest @MeredithGould of #hlthsp. We hope you can join us. 

Remember patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/dFCf1Mcahw. 

See you next month!

Dee Sparacio

Co-founder #gyncsm Community and Chat

Resources:
@SGO_org Society of Gynecologic Oncology: #SGOmtg Abstracts and Late-breaking Abstracts https://t.co/vjzYlqOTC1

@AACR American Association for Cancer Research: #AACR16 Abstracts https://t.co/2sZ6G7QveL

@ASCO American Society of Clinical Oncology: #ASCO16 abstracts https://t.co/3vruaogIUV

"Roundup of #OvarianCancer Abstracts From #SGOmtg on Women’s Cancer" https://t.co/7z5UlcDx17 via @ascopost

@ocrfa statement on GOG 252 https://t.co/XTjyzfOpw9

key abstracts at #ASCO16 Gyn Onc at ASCO 2016: Ovarian Cancer https://t.co/t1krzp6ymx via @YouTube

Abstracts #ASCO16 Gyn Onc at ASCO 2016: Cervical Cancer https://t.co/780LCAOh72 via @YouTube

abstract review from #ASCO16 - Gyn Onc at ASCO 2016: Endometrial Cancer https://t.co/Dsh7AdyArv via @YouTube

exercise and neuropathy: https://t.co/LZwUSbWVAi

Engaging participants as partners in research - Workshop Storify https://t.co/RrRVpndnQd via @stanfordmedx

researchers going directly to metastatic breast cancer patients. https://t.co/iV2dnxfzIY?

What's New in Gyn Cancer Research - June 8th #gyncsm Chat

Join us on June 8, 2016 at 9pm ET (8pm CT/6pm PT) as the #gyncsm community discusses What's New in Gyn Cancer Research. 

Our chat will focus on research presented at the Society of Gynecologic Oncology Annual Meeting (#SGOmtg) held March 19-22 in San Diego, the American Association for Cancer Research Annual Meeting (#AACR16) held April 16-20 in New Orleans, and the American Society of Clinical Oncology Annual Meeting (#ASCO16) held June 3-7 in Chicago.

We hope you will join us as we answer these questions:

T1: Do you research new treatments and studies online? Do you follow scientific meetings like #SGOmtg, #AACR16 and #ASCO16? 

T2: GOG 252 did not support a previous study which showed IP chemo benefit (tough treatment for many). How does this change things? 

T3: In the hot topics of immunotherapy, precision medicine, and genetics, which #SGOmtg/ #AACR16/ #ASCO16 research excited you? 

T4: What studies reported at #ASCO16 in palliative care, survivorship, and psychosocial research could help gyn cancer survivors? 

T5: As "patient-centered" research becomes more accepted, what do you see as the role of the patient in future cancer research?

You can search abstracts and sessions from each meeting on these corresponding pages:

#SGOmtg Abstracts & Late-breaking Abstracts
 https://www.sgo.org/2016-annual-meeting-archives/

#AACR16 Abstracts
 http://www.abstractsonline.com/plan/start.aspx

#ASCO16 Abstracts
 http://abstracts.asco.org/176/CatView_176_B.html


Do you have a research topic you are interested in learning more about? Let us know by commenting below.

See you on the 8th.

Dee
Co-founder #gyncsm

April Chat: SGO Annual Meeting Recap and ASK the DOC

This month's #gyncsm chat ( 4/8/15, 9pm EST) will focus on news from the SGO Annual Meeting on Women's Cancer including a segment we call ASK the DOC. 

The SGO's  (Society of Gynecologic Oncology) Annual Meeting on Women's Cancer was held in Chicago on March 27th to the 31st. The SGO " is the premier medical specialty society for health care professionals trained in the comprehensive management of gynecologic cancers" and they encourage research and provide education for women's cancer care. The agenda included presentations and poster sessions on the prevention and screening of gyn cancers, novel approaches to the management of gyn cancers, translational research, improvements in patient outcomes as well as the implications of global research. 

We will begin our chat on Wednesday by discussing research results reported at this year's annual meeting. Some of the studies include:

FANG vaccine for ovarian cancer 

GOG 213 (a randomized trial comparing carboplatin and paclitaxel with or without bevacizumab in platinum sensitive relapsed ovarian cancer patients.)

Immunotherapy

Parp inhibitors including  Cediranib and Endometrial cancer

An HPV study on cervical cancer & the CTC (Circulating Tumor Cells)  / Bevacizumab (Avastin) study  

BRCA 1 & 2 mutations: One study showed that a  majority of BRCA carriers don’t have family a family history of breast or ovarian cancer while a second study showed that most ovarian cancer patients don’t know their BRCA status. 

Benefits to being treated at a high volume hospital

Join us as we discuss how studies such as these will impact surveillance, education and treatment.

You may read the abstracts from the meeting here. While videos from the meeting including "Meet the Professor" may be found here. Some tweets related to studies reported on at the annual meeting may be found on the blog posts SGO From a Distance and SGO From a Distance Part 2. 

OCNA has provided highlights from the meeting that are of particular interest to ovarian cancer survivors here. Additional highlights provided by Cancer Network (home of the Journal Oncology) may be found here. 

Included in this chat will be our ASK the DOC segment. All chat participants (patients, survivors, caregivers, advocates, etc.) will have the opportunity to ask our docs questions related to the research reported on at the meeting. Maybe there is a research area we had not covered that you are interested in learning more about. ASK the DOC is the perfect time to get your questions answered. 

We are pleased that this month our health care moderators (Dr. Don S. Dizon, Dr. Rick Boulay, Dr. Merry-Jennifer Markham, Dr. Ann Becker-Schutte) will be joined by Dr. William Winter III, a gynecologist oncologist and lead guitarist with NED The Band. Dr. Winter will be tweeting as @NEDthemovie. 

We look forward to you joining us as we talk about the latest research on gynecologic cancers. 


Dee
#gyncsm co-moderator