Friday, November 9, 2018

Novemeber 2018 Chat : Cancer and Careers


Over the past five years we have covered many different topics, but one area we have not touched upon is Cancer and Careers. We hope you will join the #gyncsm community on Wednesday, November 14, 2018 at 9pmET (8pmCT, 6pmPT) for this important topic.

We will cover areas such as:
  • State and federal disability laws when you can't work
  • How you overcame problems you experience if you worked during treatment 
  • Reasons why you didn't work during treatment
  • How you felt when you couldn't work and when you first returned to work
  • How you shared your diagnosis with your employer
  • Accommodations when you return to work or if you work during treatment
  • Applying for a job after a cancer diagnosis
The website Cancer and Careers includes helpful information on a number of these topics.

We look forward to having you join us on Wednesday November 14th!

See you then,

Dee and Christina

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?

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





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

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