Wednesday, October 10, 2018

Managing Cancer Pain - Oct 10, 2018 Chat


We were pleased to have Ishwaria Subbiah MD, MS (@IshwariaMD), a palliative care and medical oncology physician from MD Anderson, join #gyncsm for tonight's Managing Cancer Pain chat. 

Eighteen patients/survivors and physicians participated in the chat. Below is a sample of the responses to the questions we asked during the chat. You may find a complete transcript here. Resources may be found at the end of this post.


T1: What are some of the causes of pain in cancer patients? How is cancer-related pain diagnosed?
  • We tend to think of cancer pain as acute (new or rapidly worsening pain) or chronic (not new). Acute is often bc of cancer itself (organ involvement eg liver; fracture; bowel perforation) or treatment (mouth sores, esophagitis, enteritis...). Chronic is neuropathy...
  • Approximately 25% to 50% of people w/ cancer complain of pain at time of dx, and up to 75% of people with cancer complain of pain as the cancer progresses. It can be caused by stage of Ca, even the tx type
  • Cancer-related pain is complex. Causes can include direct involvement of nerves, blockage of the bowels or constipation.
  • Cancer pain can come from various sources. It can come from the tumor pressing on bone, nerves or organs and sometimes pain comes from the treatment.
  • treatments cause pain too - surgery, radiation therapy, chemo,hormone therapy

 T2: What pain medications are available for cancer patients? What is recommended?
  • Pain control can be achieved with narcotic meds, anti-inflammatory meds, anti-spasm meds, anti-seizure meds (for neuropathy)
  • After surgery, doctors are trying out pain management strategies using varying combinations of acetaminophen, ketorolac, gabapentin and other opioid alternatives.
  • NSAIDS, short acting opioids long acting Opiods and Methadone as per reading
  • Pain meds are opioids or non-opioids, which are muscle relaxants, NSAIDS, steroids, as well as antidepressants (SSRI/SNRIs/TCAs) and anticonvulsants both which help w nerve pain.
  • Combining pain medications can be synergistic - lower doses of multiple different types of drugs so that there are fewer side effects but improved pain control. Alternating NSAIDS with opioids for example.

 T3: In addition to medications, what are some other ways to manage pain?
  • acupuncture, cognitive behavioral therapy, exercise
  • acupuncture, mindfulness based stress reduction, and spiritual
  • I've been writing about C.A.T.S. for years; complimentary & alternative treatment strategies for pain management. We don't always have to throw drugs at a problem as the only strategy
  • Yes! Cognitive-behavioral therapy has strong data to support its use in cancer pain management. Here are 2 of the important papers: https://t.co/Ot6OkmJelc CBT in breast ca #bcsm https://t.co/B9kCJcM5y4 in all cancers.
  • @CancerdotNet has a very helpful booklet. https://t.co/A5uadf2FVh

T4: How has the legislation regarding opioid use impacted the care of patients with cancer? What alternatives and guidelines are in place?
  • Article | New Strategy Almost Halves Opioid Use in Surgical Cancer Patients https://t.co/mWlewpd52j
  • For Opioids prescribers for adults, it’s7 days for children it’s 5 days
  • as a soon to be RN I’m concerned that regulations are making it too hard for cancer patients to get pain meds.
  • An inadvertent consequence though is that we may try to use opioid alternatives in addition to or instead of narcotics to improve pain control and also involve supportive care with pain control early - these are both good things!
  • Many states have exceptions to opioid prescribing guideline for cancer patients.
  • The CDC has this fact sheet on opiods https://t.co/sVCD63IvcN
  • The #opioid shortage was a very real issue earlier this year (& still is to a lesser extent). @AP picked up on this & spoke w many of us around the US who care for people w severe pain. #gyncsm US hospitals grapple w prolonged injected opioid shortage https://t.co/nM1IKlyApG
  • Patients are so worried about becoming addicted - we try to hammer the fact that if you are taking #opiods appropriately for control of your pain- you will not become addicted! We don't want you to suffer
Bonus Topic: 
There is a pain scale used. Patients - do you find this an accurate way to describe your pain? Would you change anything about it?
  • grimacing
  • because we need more words and descriptions for pain levels. lol


  • The current one is OK for intensity but really doesn't describe the pain. #gyncsm is it Dull ache, stabbing, pins and needles etc
  • Absolutely - it is just one measure of a part of the pain and inadequate for all those additional details 

 And a closing thought from :
Effective pain management requires a comprehensive approach; no one size fits all. Have the conversation w/ your care team and let that team listen w/ E.A.R.S (empathy, attentiveness, respect, & support). 

You may continue the discussion on Smart Patients at https://buff.ly/2yzFai6. 

See you next month on Wednesday Nov 14, 2018 for our chat on Cancer and Careers. 

Dee #gyncsm co-founder 



RESOURCES
Meta-analysis of psychosocial interventions to reduce pain in patients with cancer https://www.ncbi.nlm.nih.gov/pubmed?holding=mdacclib&term=22253460

Efficacy of Mindfulness-based Cognitive Therapy on Late Post Treatment Pain in Women Treated for Primary Breast Cancer : A Randomized Controlled Trial https://www.ncbi.nlm.nih.gov/pubmed?holding=mdacclib&term=27325850

@CancerDotNet ASCO Answers Managing Cancer-related Pain   https://www.cancer.net/sites/cancer.net/files/managing_pain_booklet.pdf

New Strategy Almost Halves Opioid Use in Surgical Cancer Patients 
https://www.medscape.com/viewarticle/902402?src=rss

CDC Fact Sheet on Opiods https://www.cdc.gov/drugoverdose/pdf/AHA-Patient-Opioid-Factsheet-a.pdf

US Hospitals Grapple with Prolonged Injected Opiod Shortage  https://apnews.com/6af21607e6ba4d03937c4d67f3c8b1b7

 FDA’s Opioid Analgesic REMS Education Blueprint for Health Care Providers Involved in the Treatment and Monitoring of Patients with Pain
https://www.fda.gov/downloads/Drugs/DrugSafety/InformationbyDrugClass/UCM620249.pdf

MD Anderson Supportive Care Clinic visit assessment

PCORI Video   What are opiods?
https://vimeo.com/234867282?utm_source=Cycle+3+2018+opening%2C+Capitol+Hill+briefing+on+opioids&utm_campaign=10%2F2%2F18%3A+Cycle+3+2018+opens%2C+Capitol+hill+briefing+on+opioids&utm_medium=email

ACS managing cancer pain at home
https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/pain/pain.html

Cancer pain relief is possible - Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-pain/art-20045118





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Friday, October 5, 2018

Oct. 10, 2018 Managing Cancer Pain



At various points in time during a gynecologic cancer patient's diagnosis, treatment and survivorship they may experience pain. Join us on Wednesday October 10, 2018 at 9pm ET (8pmCT / 6pmPT) as we discuss how to manage cancer-related pain. We will also discuss the impact of the opioid epidemic on cancer patients.

We'll use the following Topic Questions (T#:) to guide our discussion:
T1: What are some of the causes of pain in cancer patients? How is cancer-related pain diagnosed?
T2: What pain medications are available for cancer patients? What is recommended?
T3: In addition to medications, what are some other ways to manage pain?
T4: How has the legislation regarding opioid use impacted the care of patients with cancer? What alternatives and guidelines are in place? 
T5: Is controlling cancer pain different than controlling other types of pain - both chronic and acute?
Bonus Topic: There is a pain scale used. Patients - do you find this an accurate way to describe your pain? Would you change anything about it?
To learn more about how to take part in Tweet chats please visit these pages. 

We look forward to having you join us. 

Dee
#gyncsm Co-founder
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Wednesday, September 12, 2018

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

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

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

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

Then we moved on to our Digital Health Fair.  

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

Cancer and Careers

Cancer Hope Network


Clearity Foundation


Elixir Fund 




FORCE

Helpsy



IamCervivor



OCRFA




Proactive Genes
SHARE



SBPOC



Smart Patients


Support Connection

 WhatNext 


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



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

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

 See you then, 

 Dee

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Saturday, September 8, 2018

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



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

To date the following groups will be joining us:

Cancer Hope Network

Imerman Angels

Smart Patients

SHARE

Cervivor

Helpsy Health

Elixir Fund

OCRFA

FORCE

         Cancer and Careers

What Next 

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

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



See you on the 12th!

Dee and Christina 
Co-founders #gyncsm 

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Wednesday, August 8, 2018

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


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

 You may find our transcript here and analytics here. 

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

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

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

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

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

 See you in September. 

 Dee
#gyncsm co-founder


RESOURCES

Taking vitamins/supplements:

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

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

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



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

Eating raw fruits and vegetables:



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

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

Eating soy: 

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

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

Having sexual relations during treatment:


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

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

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

Be around children who are recently vaccinated: 

Eating cake and sugary foods:

Miscellaneous:
The Chemotherapy Survival Guide Authors Judith McKay, RN, OCN and Tamera Schachen, RN, OCN, MSN
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Friday, August 3, 2018

August 8, 2018 What is OK during Treatment?


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

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

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

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

Dee
#gycnsm Co-Founder
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