Wednesday, May 8, 2019

Supplements / Vitamins Are they helpful? May 8, 2019 Chat


We were pleased to have Stacy Kennedy MPH,RD (@stacykennedyrd) join us for this informative chat on vitamins and supplements.  You may find a complete transcript here and analytics here.
Definitions: 
Vitamins - a nutrient that the body needs in small amounts to function and stay healthy. 
Supplement - a substance taken to remedy the deficiencies in a person's diet. 

Here are a few sample responses to our questions:

T1: Can vitamins be helpful to a woman diagnosed with a cancer at each point in her cancer experience - before, during and after treatment? Are there vitamin studies related to gynecologic cancers specifically?

  • vitamins, from foods, are important for women diagnosed with cancer at each point in her experience
  • Amounts & levels needed from food, and in some cases supplements, vary by individual based on many factors
  • connecting to a nutrition expert in oncology is helpful and looking for reliable resources, like danafarber.org/nutrition
  • a plant-based well balanced diet, maintaining a healthy weight and regular exercise are shown to be helpful for many gyn cancers
  • ndividualize your vitamin and supplement use while being treated for cancer. What's right for one person may not be right for another.

T2: Are there vitamins and supplements a gynecologic cancer patient should avoid during treatment - surgery/chemo/radiation/immunotherapy? What about concerns that some vitamins and supplements help cancer grow?

  • yes, there are supplements to avoid during specific treatments. for example, high dose antioxidant supplements during radiation therapy
  • For surgery, many supplements can have blood thinning effects and should be avoided before and after for a period of time. Your MD can advise.
  • Just like with what TO take, what not to take is very individualized. Get help from your cancer pharmacy, gyn/onc, primary doc, nutritionists and/or others to be sure everything that you are taking works with your treatment.
  • It’s also important to avoid high dose antioxidant vitamins such as vitamin A C and E during chemo such as platinum.
  • talking to a pharmacist can insure your medications are not conflicting with your treatments.
  • also individualize what foods you eat. certain fruit like grapefruit can interfere with the metabolism of some drugs. ask!

T3: Which supplements are most helpful for cancer patients and are shown to boost the immune system? Where can reliable information about supplements be found?



T4: Studies have show than Vitamin D is beneficial for colon cancer patients. Is there potential to benefit gynecologic cancer patients as well?


T5: Are there foods patients can eat to get the vitamins they need in place of pills? What are some resources to learn more about nutrition after a cancer diagnosis?


Additional resources shared during the chat may be found below.

Note that there will be no #gyncsm chat in June.  Mark your calendar for our next chat on Wed July 10th at 9pmET. 

Thanks to everyone who has been tweeting using the #gyncsm hashtag.

See you in July!

Dee
#gyncsm Co-founder


RESOURCES

Dana Farber Nutritional Services - https://www.dana-farber.org/for-patients-and-families/care-and-treatment/support-services-and-amenities/nutrition-services/
What Are the Best Vitamins for Cancer Patients - https://blog.dana-farber.org/insight/2011/12/what-are-the-best-vitamins-for-cancer-patients/

Mobile Nutrition and Recipe App  https://www.cancernutrition.org/mobile-nutrition-and-recipe-app/

Conquer Magazine - What Should People With Cancer Eat https://conquer-magazine.com/issues/2019/vol-5-no-2-april-2019/948-what-should-people-with-cancer-eat

ChemoCare - Vitamins and Cancer ... http://chemocare.com/chemotherapy/health-wellness/vitamins-and-cancer.aspx

ASCO Post - Avoiding Antioxidant-Drug Interactions During Cancer Treatment - https://www.ascopost.com/issues/july-25-2014/avoiding-antioxidant-drug-interactions-during-cancer-treatment/

Cancerdotnet - Myths about Cancer and Food Explained  https://www.cancer.net/blog/2016-06/5-myths-about-cancer-and-food-explained-dietitians

American Institute for Cancer Research http://www.aicr.org/patients-survivors/healthy-or-harmful/supplements.html

American Cancer Society - Dietary Supplements - What is Safe? http://www.aicr.org/patients-survivors/healthy-or-harmful/supplements.html

NIH Dietary Supplements https://ods.od.nih.gov/

Sunday, May 5, 2019

May 8, 2019 Chat - Supplements / Vitamins Are they Helpful?


The #gyncsm Community spoke about nutrition in 2015. Since then there have been a number of questions about the helpfulness of vitamins and supplements during treatment and to reduce the risk for cancers and cancer recurrence. This month on May 8, 2019 at 9pm ET (8pm Central, 6pm Pacific) we will chat about Supplements / Vitamins - Are They Helpful? We'll discuss what has shown to be helpful, what to avoid, what helps your immune system, the benefits of vitamin D and pill-based vs. food-based.

Guiding our discussion will be the following Topic Questions (T#):
T1: Can vitamins be helpful to a woman diagnosed with a cancer at each point in her cancer experience - before, during and after treatment? Are there vitamin studies related to gynecologic cancers specifically?

T2: Are there vitamins and supplements a gynecologic cancer patient should avoid during treatment - surgery/chemo/radiation/immunotherapy? What about concerns that some vitamins and supplements help cancer grow?

T3: Which supplements are most helpful for cancer patients and are shown to boost the immune system? Where can reliable information about supplements be found?

T4: Studies have show than Vitamin D is beneficial for colon cancer patients. Is there potential to benefit gynecologic cancer patients as well?

T5: Are there foods patients can eat to get the vitamins they need in place of pills? What are some resources to learn more about nutrition after a cancer diagnosis?

In preparation for the chat, you may be interested in this podcast from Cancer.Net
5 Myths about Cancer and Food, Explained by Dietitians
https://www.cancer.net/blog/2016-06/5-myths-about-cancer-and-food-explained-dietitians

May 8th is also World Ovarian Cancer Day.

You may find more information about the day at https://ovariancancerday.org/

We hope you can join us! 

Dee
#gyncsm Co-founder

Wednesday, April 10, 2019

Origination of High Grade Serous Ovarian Cancer - April 10, 2019 Chat

We were very pleased to have as tonight's chat guest, Dr. Ronny Drapkin (@ronny_Drapkin), Director of the Penn Ovarian Cancer Research Center (OCRC). Dr. Drapkin joined us to discuss his research into the Origin of High Grade Serous Ovarian Cancer (HGSOC). As shared at the beginning of the chat "Of the 4 main OC types, most #ovariancancer (85-90%) falls into the Epithelial type. High-grade serous (HGSOC) is the most common subtype of ovarian cancer, making up ~75% of Epithelial ovarian cancer, which includes fallopian tube cancer and primary peritoneal cancer."

The complete transcript may be read here and the analytics please check here.
(Notes: FT = Fallopian Tube, HGSOC= High Grade Serous Ovarian Cancer, STIC serous tubal intraepithelial carcinoma, RRSOs = Risk-reducing salpingo-oophorectomy = high risk but not cancer yet removal of ovaries and fallopian tubes)

Here are Dr. Drapkin's responses to our questions:

T1. What makes HGSOC different from other sub-types in terms of the tumor itself, how it spreads, how it is treated, and its prognosis?

Point 1 (1/2):HGSOC is the most common subtype of ovarian cancer. Unfortunately, it tends to spread before detection. Once it is diagnosed, most patients get treated with surgery and chemotherapy.
Point 2 (2/2):Initially, the majority of patients will have a positive response to the treatment. Unfortunately, most will have their tumors come back.

T2. When did research start pointing to the fallopian tubes as the origin site of HGSOC? 

Point 1 (1/4):After the BRCA genes were cloned in the mid-1990s, we began offering women at risk prophylactic surgery. That included mastectomy for breast cancer and removal of the ovaries (and fallopian tubes) for ovarian cancer.
Point 2 (2/4):The removal of the FTs along with the ovaries was surgically convenient and most of the attention was placed on the ovary. As early as 2000, reports began to emerge that some of these prophylactic specimens had abnormal looking cells in the FT.
Point 3 (3/4):Around 2005-2006, Dr. Chris Crum (my clinical mentor during residency) @BrighamWomens developed the SEE-FIM (Sectioning and Extensively Examining the FIMbriated end of the fallopian tube) protocol to get a better understanding of what was happening there.
Point 4 (4/4):That is when we realized that most of these tumors were arising from the tube rather than the ovary. Subsequent use of SEE-FIM confirmed this in publications around the world.


T3: What characteristics did you study when you examined fallopian tube lesions versus lesions of the ovary? How are BRCA mutations involved?

Point 1 (1/6): Much of that data is based on histological studies. We wanted to see if we could definitively show that these tumors arise from precursor lesions in the FTs by using next generation sequencing and advanced bioinformatic tools.
Point 2 (2/6): We identified cases of HGSOC that had precursors identified in the FT by pathologists. We then used laser-capture microdissection to carefully isolate those cells and applied whole-exome sequencing to characterize the mutations and copy number changes.
Point 3 (3/6): These efforts revealed that mutations in p53 are among the earliest defects detectable. We also found that copy number alterations (amplifications or deletions in certain genes or chromosomal regions) are also frequent, early, and involve the BRCA genes.
Point 4 (4/6): As lesions become more complex they retain the early defects (p53 mutations and copy number changes) and acquire additional ones.
Point 5 (5/6): Using computational tools we were able to develop a molecular clock. This approach showed that there are 6-7 years between the development of a precursor lesion (called a STIC) and clinically evident 'ovarian' cancer.
Point 6 (6/6): However, once the tumor cells get to the ovary, there are only 1.9 years before they spread to the rest of the abdominal cavity. Hence, the window of opportunity to intervene is the 6-7 years before the cells get to the ovary.  

T4a: Are HGSOC cancer cells found in the fallopian tube different than those found in/on the ovary? How do they differ from Fallopian Tube Cancer cells?

While there have been many efforts to find early cancer cells in/on the ovary, no one has been able to reproducibly identify them. Since SEE-FIM, a number of systematic attempts have tried to find early precursors in the ovary but have failed.

T5: As we look to the future: How will knowledge of where a majority of ovarian cancers originate impact women at increased risk? How might this research help in the development of an early detection test? What is the impact for women diagnosed with ovarian cancer?

(1/4): Tremendous potential here! The most obvious areas will be in prevention and early detection.
(2/4): The significant morbidity associated with removal of the FTs and ovaries (surgical menopause) has led up to 30-40% of BRCA carriers to delay or refuse risk-reducing surgery.
(3/4): For these women, there are ongoing studies looking at the effect of removing the FTs first (interval salpingectomy) and later removing the ovaries (delayed oophorectomy). One example is the WISP study by @KarenLuMD
(4/4): For average risk women there is ‘opportunistic salpingectomy’ - for example, if you are having a hysterectomy for any reason, the rec is to remove the FTs

@temkins A5: For patients it's important to know that ovarian, fallopian tube and primary peritoneal high grade serous cancers are considered the same disease for the purpose of treatment

T6:How will knowledge of where a majority of ovca originate impact women at increased risk? How might this research help in the development of an early detection test? What is the impact for women diagnosed w/ ovca?

This is the most exciting part. How does the FT matter!?! Lots of activity in this area. We are actively working with a company (nVision Medical) that has developed a modified hysteroscope that can sample the cells in the FT. It is like a pap smear of the FT. We have a phase II clinical trial open at UPenn (and other place) looking at the utility of this device.
T6: the goal of such a device/method is to detect early FT cancers before they get to the ovary. We are currently testing it in women with pelvic masses but we are already planning to test it in BRCA mutation carriers.
T6: Another approach relates to the concept of 'tissue proximal sampling'. This means that if we can get closer to the source of the cancer, perhaps we can detect it earlier. Efforts from @HopkinsMedicine are resulting in exciting results with a PapSeek test. PapSeek uses a regular endocervical pap brush to collect cells and determine if they harbor molecular defects of ovarian cancer.


Save the Date! Join us on Wednesday, May 8th at 9pmET for our discussion on Supplements/Vitamins - Are they helpful?

See you next month, 

Dee
#gyncsm Co-founder 

RESOURCES

Sectioning and extensively examining the fimbriated end (SEE-FIM) of the fallopian tube in routine practices, is it worth the effort? https://www.ncbi.nlm.nih.gov/pubmed/30506766

Microscopic and Early-Stage Ovarian Cancers in BRCA1/2 Mutation Carriers: Building a Model for Early BRCA-Associated Tumorigenesis http://cancerpreventionresearch.aacrjournals.org/content/4/3/463

WISP - Women Choosing Surgical Prevention https://wisp.mdanderson.org/WISP_Mobile/index.html

Women’s cancers: how the discovery of BRCA genes is driving current concepts of cancer biology and therapeutics https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6411414/

High grade serous ovarian carcinomas originate in the fallopian tube Nature magazine https://www.nature.com/articles/s41467-017-00962-1

Thursday, April 4, 2019

April 10, 2019 Origination of High Grade Serous Ovarian Cancer


We are so pleased that this month's chat guest will be Dr. Ronny Drapkin (@ronny_drapkin). Dr. Drapkin is the Franklin Payne Associate Professor of Pathology in Obstetrics and Gynecology at the University of Pennsylvania's Perelman School of Medicine. His research focuses on understanding the genetic, molecular and physiological factors that drive the development of gynecologic cancers. 

April's chat will focus on the origination of high grade serous ovarian cancer. In 2017, Dr. Drapkin and colleagues published the paper High grade serous ovarian carcinomas originate in the fallopian tube in Nature communications. You may read the article here. An understanding of the precursors of ovarian cancer and gene alterations can lead to the development of an early detection test.

We will use the following topic questions to guide our discussion:

T1: What makes HGSOC different from other sub-types in terms of the tumor itself, how it spreads, how it is treated, and its prognosis?

T2: When did research start pointing to the fallopian tubes as the origin site of HGSOC? 

T3: What characteristics did you study when you examined fallopian tube lesions versus lesions of the ovary? How are BRCA mutations involved?

T4a: Are HGSOC cancer cells found in the fallopian tube different than those found in/on the ovary? How do they differ from Fallopian Tube Cancer cells?
T4b: Patients/survivors - Have your pathology reports shown cancer cells in your fallopian tubes?

T5: As we look to the future:
How will knowledge of where a majority of ovarian cancers originate impact women at increased risk?
How might this research help in the development of an early detection test?
What is the impact for women diagnosed with ovarian cancer?

In this video, Dr. Drapkin discusses how this research is giving high-risk women better choices: 





We hope you can join us on Wednesday, April 10, 2019 at 9:00pm ET (8pm CT, 6pm PT) to learn more about this important research topic.

Dee
#gyncsm co-moderator

PS: New to tweet chats? Tips for taking part may be found here

Friday, March 8, 2019

March 2019

Happy International Women's Day!

Just a short note that there will not be a #gyncsm chat this March. 


Save the Date! 
We hope you will join us on Wednesday, April 10th at 9:00pmET with guest @ronny_drapkin to discuss the origins of high grade serous ovarian cancer. 



While we are off, we invite you to check out these other great healthcare conversations happening each month on twitter: 

http://gyncsm.blogspot.com/2019/01/looking-for-cancersocialmedia-chat.html

Christina Lizaso
#gycnsm Co-Founder

Wednesday, February 13, 2019

Getting Into a Clinical Trial - February 13, 2019

This month's chat, Getting Into a Clinical Trial, allowed our participants to learn from experts and our community to share resources which help patients find and decide on a clinical trial.

In addition to our health care moderators Drs Temkin, Westin and Becker-Schutte, we were joined by Dr. Christina Annunziata (@CMAnnunziata), Clara Health (@aaronjun_@Clara_Health), Clearity Foundation (@ClearityFnd), Lilly Trials (@LillyTrials) and Smart Patients (@RobinSmrtPtient, @smart_patients). Twenty-seven participants created 1.4 million impressions during the hour chat. You may find more analytics here.

Below is a sampling of responses to our questions. A full transcript may be found here.

T1: Before looking for trials, what information do patients need? What is helpful to consider/decide ahead of time?
  • T1 it's important to know your medical history before looking for a #clinicaltrial. Type of cancer, stage, prior treatment.
  • Clinical trials can work for women at any point in their #ovariancancer experience and should be considered along with standard of care. Physicians may not always suggest a trial. It's important to speak up and ask questions. Find out more at: https://www.clearityfoundation.org/clinical-trials-can-help/
  • Before starting to look for trials, it can be helpful to read about the differences between standard care and receiving treatment as part of a trial. We wrote a guide highlighting the differences here! https://guides.clarahealth.com/preparing-for-your-clinical-trial/
  • Every trial protocol is different, so knowing what matters in your trial search before you get started can help you narrow down the options. For example, how far you're able to travel, if there is family who can help take you to visits, taking time off work etc.
  • at any point in decision making, patients need to know a much as they can about their disease state/progression, resources (financial, logistical, medical team, etc.), & approved treatment/therapy options. Without that info, it’s hard to make an informed choice. 
T2: Where can patients search for trials? What key words are helpful? Are there specific search sites for gyn cancers?
T3: What should patients look for in a trial? Where can patients get help on the terminology used in trial listings? What are eligibility criteria? 
  • @SGO_org has a clinical trial glossary to help understand the terms used https://www.sgo.org/patients-caregivers-survivors/clinical-trials/clinical-trials-glossary/
  • Each person has their own trial preferences, but if you ever feel like you’re being pressured to sign up for a trial without the time to make an informed decision, DO NOT CONSENT. It’s not informed consent if you don’t have time to be informed. 
  •  Whether the trial is open AND currently accepting patients is definitely important to figure out. Then you can start looking into if you qualify - some things may keep you out (exclusion criteria) and some will match (inclusion criteria)
  • @theNCI dictionary of cancer terms is helpful as your read through trial descriptions: https://www.cancer.gov/publications/dictionaries/cancer-terms
  • T3: When designing a study, the research team specifies guidelines about what kind of patients the treatment is meant to target, which are the "eligibility criteria" that specify who can participate.
  • @CISCRP has great resources on explaining what a clinical trial is & what eligibility criteria are.
  • We find that @ClearityFnd has really great, SPECIFIC resources that are super helpful for folks looking into gyn cancer trials.
  • Smart Patients has an integrated glossary and members who can explain terminology and inclusion/exclusion 
T4: When contacting the study team, what questions are important to ask? What factors need to be considered?
  • T4. Get exact contact name and send your materials directly using FedEx - must deliver to that exact person! Mail goes astray. 
  • T4: Tip: Prior to meeting with the research coordinator or doctor, write down possible questions to ask. You may find it helpful to bring a friend or relative with you as another set of ears to hear the responses to your questions.
  • T4: Prior to enrolling in a trial, specifically phase I studies, questions about the # of patients already treated, drug effectiveness & side effects are important to ask. Check out our list of helpful q's to ask when contacting the study team: https://www.clearityfoundation.org/trials-questions-to-ask/ 
  • You can ask them 1) what are your alternative options, 2) goals of the #clinicaltrial, 3) how long you will stay on the trial, 4) adverse events, 5) logistics/travel 
T5: How can patients best prepare for the onsite interview? What is a study protocol? What is informed consent? 
  • Have your records ready, read over the protocol (if you need help, https://clarahealth.com/ offers 24/7 live chat for all patients, just sayin). And remember you aren't bound to joining. Ask any question you have.
  • During informed consent, a member of the trial team will go over the trial in depth to make sure you understand all the details. Bringing a family/friend if possible to help take notes can reduce the information overload from the long informed consent process! 
  • Every clinical trial must have a study protocol approved by an Institutional Review Board and FDA. Key features of the study protocol are available to the public on websites like https://www.clinicaltrials.gov/ 
  • Bring a Caregiver/ friend . Two ears are better than one. Have some questions written out ahead of time, take notes. Don't be afraid to ask questions and for a tour of the treatment area.
  • T5: Study protocol: complete outline of study often looks intimidating. Ask about what you don't understand. Write down trial NUMBER
  • T5 Making sure you have had the opportunity to ask all of your questions. A copy of the consent with study team contact information should be provided. Take a day to think it over! 
T6: What advice do you have for patients who are choosing between trials when there are several options?
  • T6: Look for a trial that guarantees you the treatment you want (no undesirable treatment arms in the study)
  • T6: "Patients can check our website to see if the effectiveness and side effects of any of the trial drugs have already been reported. We show results for all standard chemotherapies and drugs in advanced clinical trials.” (1/2)
  • T6: "We want to make it easy to find these results so that women don't have to spend hours trying to find the right information to help them make informed choices about treatment options.” – Clearity’s Scientific Director, Dr. Deb Zajchowski (2/2)
  • T6: If possible, after speaking with the study teams, you may want to talk to your family, primary care physician, and an additional source for a second opinion before choosing which to enroll in. Everyone can bring a different (equally important) perspective!
  • T6: you can choose the right trial for you based on if it is selected for your tumor type vs. an "all comers" design. Other considerations are toxicity, logistics, and any known efficacy
  • T6: If you want to learn more about the investigational drug in the study, you can search for published information in peer-reviewed medical journals.
  • T6: consider the phase of the trial (1,2,3), whether it is randomized (some get experimental drug, some get standard care), and whether it is specifically designed for your particular type of cancer (biomarker, histology, gene mutation, etc)
These two comments are important for everyone to know:
  • Participating in a #clinicaltrial is voluntary
  • You *always* have the right to say no & leave a trial. 

In addition to those resources shared in the comments above, you may find additional resources below.

A special congratulations to #gyncsm health care moderator Dr Shannon Westin for being chosen for CURE Media Group 2019 Ovarian Cancer Heroes®.

We will not be holding a #gyncsm chat in March. Please save the date and join us on April 10, 2019 at 9pm ET as we discuss The Origination of High Grade Serous Ovarian Cancer with Dr Ronny Drapkin.

Remember to share information of interest to our community by using the #gyncsm tag.

See you in April!

Dee
#gyncsm Co-founder

ADDITIONAL RESOURCES

LillyTrial's TrialGuide Blog
https://blog.lillytrialguide.com/

Lilly 10 Things You Need to Know about a Clinical Trial
https://www.lillytrialguide.com/en-US/about-clinical-trials?twitterfocus=3#/tenthings?utm_source=twitter&utm_medium=organic&utm_campaign=ltg&utm_content=ltg_117

Clara Health's Step by Step Guide to Finding and Participating in Clinical Trials https://guides.clarahealth.com/how-to-find-and-participate-in-clinical-trials/

Understanding Gynecologic Clinical Trials - Video Produced by the Society of Gynecologic Oncology (SGO) and the Foundation for Women’s Cancer (FWC)
https://youtu.be/UFGb8nQkE8c

@CancerTodayMag Tomorrows Trials https://t.co/xpCxw99tZt

@cure_magazine Clinical Trial Exclusions https://t.co/t3dLp1lZOz

Friday, February 8, 2019

February 13, 2019 - Getting Into Clinical Trials Chat


During the past few years our community has talked about Clinical Trials a number of times. We talked about different types of clinical trials, how clinical trials have changed, new trial designs - such as basket trials and the @ASCO TAPUR trial - and the inclusion of Patient Reported Outcomes in clinical trials. A theme that kept repeating during these chats was the difficulty gyn cancer patients had in finding clinical trials they could enroll in. So this month #gyncsm will spend time talking about Getting Into a Clinical Trial. 

Prior to the chat, we encourage you to review these resources
Lilly's TrialGuide Blog
https://blog.lillytrialguide.com/
Clara Health's Step by Step Guide to Finding and Participating in Clinical Trials https://guides.clarahealth.com/how-to-find-and-participate-in-clinical-trials/
and watch this video from The Foundation for Women's Cancer

Understanding Clinical Trials

Guiding our discussion will be the following Topic Questions (T:)

T1: Before looking for trials, what information do patients need? What is helpful to consider/decide ahead of time?

T2: Where can patients search for trials? What key words are helpful? Are there specific search sites for gyn cancers?

T3: What should patients look for in a trial? Where can patients get help on the terminology used in trial listings? What are eligibility criteria?

T4: When contacting the study team, what questions are important to ask? What factors need to be considered?

T5: How can patients best prepare for the onsite interview? What is a study protocol? What is informed consent?

T6: What advice do you have for patients who are choosing between trials when there are several options?

Bonus Topic - time permitting: 
Outside of eligibility criteria, what kept you or a patient you know from enrolling in a trial? How are trials changing to reduce trial participation barriers?

Invite your friends and join us on February 13, 2019 at 9pm ET (8pm CT, 6pmPT) for an informative discussion. We will have a number of researchers and clinical trial experts joining us. 

See you then.

Dee 
#gyncsm Co-Founder