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Responses to the #COVID-19 outbreak from Oncologists, Cancer Societies and the NCI: Important information for cancer patients

Curator: Stephen J. Williams, Ph.D.

UPDATED 3/20/2020

Among the people who are identified at risk of coronovirus 2019 infection and complications of the virus include cancer patients undergoing chemotherapy, who in general, can be immunosuppressed, especially while patients are undergoing their treatment.  This has created anxiety among many cancer patients as well as their care givers and prompted many oncologist professional groups, cancer societies, and cancer centers to formulate some sort of guidelines for both the cancer patients and the oncology professional with respect to limiting the risk of infection to coronavirus (COVID19). 

 

This information will be periodically updated and we are working to get a Live Twitter Feed to bring oncologist and cancer patient advocacy groups together so up to date information can be communicated rapidly.  Please see this page regularly for updates as new information is curated.

IN ADDITION, I will curate a listing of drugs with adverse events of immunosuppression for people who might wonder if the medications they are taking are raising their risk of infections.

Please also see @pharma_BI for updates as well.

Please also see our Coronavirus Portal at https://pharmaceuticalintelligence.com/coronavirus-portal/

For ease of reading information for patients are BOLDED and in RED

ASCO’s Response to COVID-19

From the Cancer Letter: The following is a guest editorial by American Society of Clinical Oncology (ASCO) Executive Vice President and Chief Medical Officer Richard L. Schilsky MD, FACP, FSCT, FASCO. This story is part of The Cancer Letter’s ongoing coverage of COVID-19’s impact on oncology. A full list of our coverage, as well as the latest meeting cancellations, is available here.

 

The worldwide spread of the coronavirus (COVID-19) presents unprecedented challenges to the cancer care delivery system.

Our patients are already dealing with a life-threatening illness and are particularly vulnerable to this viral infection, which can be even more deadly for them. Further, as restrictions in daily movement and social distancing take hold, vulnerable patients may be disconnected from friends, family or other support they need as they manage their cancer.

As providers, we rely on evidence and experience when treating patients but now we face uncertainty. There are limited data to guide us in the specific management of cancer patients confronting COVID-19 and, at present, we have no population-level guidance regarding acceptable or appropriate adjustments of treatment and practice operations that both ensure the best outcome for our patients and protect the safety of our colleagues and staff.

As normal life is dramatically changed, we are all feeling anxious about the extreme economic challenges we face, but these issues are perhaps even more difficult for our patients, many of whom are now facing interruption

As we confront this extraordinary situation, the health and safety of members, staff, and individuals with cancer—in fact, the entire cancer community—is ASCO’s highest priority.

ASCO has been actively monitoring and responding to the pandemic to ensure that accurate information is readily available to clinicians and their patients. Recognizing that this is a rapidly evolving situation and that limited oncology-specific, evidence-based information is available, we are committed to sharing what is known and acknowledging what is unknown so that the most informed decisions can be made.

To help guide oncology professionals as they deal with the impact of coronavirus on both their patients and staff, ASCO has collated questions from its members, posted responses at asco.org and assembled a compendium of additional resources we hope will be helpful as the virus spreads and the disease unfolds. We continue to receive additional questions regarding clinical care and we are updating our FAQs on a regular basis.

We hope this information is helpful even when it merely confirms that there are no certain answers to many questions. Our answers are based on the best available information we identify in the literature, guidance from public health authorities, and input received from oncology and infectious disease experts.

For patients, we have posted a blog by Dr. Merry Jennifer Markham, chair of ASCO’s Cancer Communications Committee. This can be found on Cancer.Net, ASCO’s patient information website, and it provides practical guidance to help patients reduce their risk of exposure, better understand COVID-19 symptoms, and locate additional information.

This blog is available both in English and Spanish. Additional blog posts addressing patient questions will be posted as new questions are received and new information becomes available.

Find below a Tweet from Dr.Markham which includes links to her article on COVID-19 for cancer patients

https://twitter.com/DrMarkham/status/1237797251038220289?s=20

NCCN’s Response to COVID-19 and COVID-19 Resources

JNCCN: How to Manage Cancer Care during COVID-19 Pandemic

Experts from the Seattle Cancer Care Alliance (SCCA)—a Member Institution of the National Comprehensive Cancer Network® (NCCN®)—are sharing insights and advice on how to continue providing optimal cancer care during the novel coronavirus (COVID-19) pandemic. SCCA includes the Fred Hutchinson Cancer Research Center and the University of Washington, which are located in the epicenter of the COVID-19 outbreak in the United States. The peer-reviewed article sharing best practices is available for free online-ahead-of-print via open access at JNCCN.org.

Coronavirus disease 2019 (COVID-19) Resources for the Cancer Care Community

NCCN recognizes the rapidly changing medical information relating to COVID-19 in the oncology ecosystem, but understands that a forum for sharing best practices and specific institutional responses may be helpful to others.  Therefore, we are expeditiously providing documents and recommendations developed by NCCN Member Institutions or Guideline Panels as resources for oncology care providers. These resources have not been developed or reviewed by the standard NCCN processes, and are provided for information purposes only. We will post more resources as they become available so check back for additional updates.

Documents

Links

National Cancer Institute Response to COVID-19

More information at https://www.cancer.gov/contact/emergency-preparedness/coronavirus

What people with cancer should know: https://www.cancer.gov/coronavirus

Get the latest public health information from CDC: https://www.coronavirus.gov

Get the latest research information from NIH: https://www.nih.gov/coronavirus

 

Coronavirus: What People with Cancer Should Know

ON THIS PAGE

Both the resources at cancer.gov (NCI) as well as the resources from ASCO are updated as new information is evaluated and more guidelines are formulated by members of the oncologist and cancer care community and are excellent resources for those living with cancer, and also those who either care for cancer patients or their family and relatives.

Related Resources for Patients (please click on links)

 

 

 

Some resources and information for cancer patients from Twitter

Twitter feeds which may be useful sources of discussion and for cancer patients include:

 

@OncLive OncLive.com includes healthcare information for patients and includes videos and newsletters

 

 

@DrMarkham Dr. Markham is Chief of Heme-Onc & gyn med onc @UF | AD Med Affairs @UFHealthCancer and has collected very good information for patients concerning #Covid19 

 

 

@DrMaurieMarkman Dr. Maurie Markman is President of Medicine and Science (Cancer Centers of America, Philadelphia) @CancerCenter #TreatThePerson #Oncology #Genomics #PrecisionMedicine and hosts a great online live Tweet feed discussing current topics in cancer treatment and care for patients called #TreatThePerson Chat

UPDATED 3/20/2020 INFORMATION FROM NCI DESIGNATED CANCER CENTERS FOR PATIENTS/PROVIDERS

The following is a listing with links of NCI Designated Comprehensive Cancer Centers and some select designated Cancer Centers* which have information on infectious risk guidance for cancer patients as well as their physicians and caregivers.   There are 51 NCI Comprehensive Cancer Centers and as more cancer centers formulate guidance this list will be updated. 

 

Cancer Center State Link to COVID19 guidance
City of Hope CA Advice for cancer patients, survivors and caregivers
Jonsson Cancer Center at UCLA CA Cancer and COVID19
UCSF Hellen Diller Family Comprehensive Cancer CA COVID-19 Links for Patients and Providers
Lee Moffit FL Protecting against Coronavirus 19
University of Kansas Cancer Center* KS COVID19 Info for patients
Barbara & Karmanos Cancer Institute (Wayne State) MI COVID19 Resources
Rogel Cancer Center (Univ of Michigan) MI COVID19 Patient Specific Guidelines
Alvin J. Siteman Cancer Center (MO) Coronavirus
Fred & Pamela Buffet CC* NE Resources for Patients and Providers
Rutgers Cancer Institute of NJ NJ What patients should know about COVID19
Memorial Sloan Kettering NY What COVID19 means for cancer patients
Herbert Irving CC (Columbia University) NY Coronavirus Resource Center
MD Anderson Cancer  TX Planning for Patients, Providers
Hunstman Cancer Center UT COVID19 What you need to know
Fred Hutchinson WA COVID19 What patients need to know

 

 

Please also see related information on Coronavirus 2019 and Cancer and Immunotherapy at the following links on the Open Access Online Journal:

Volume Two: Cancer Therapies: Metabolic, Genomics, Interventional, Immunotherapy and Nanotechnology in Therapy Delivery 

at

https://pharmaceuticalintelligence.com/biomed-e-books/series-c-e-books-on-cancer-oncology/volume-two-immunotherapy-in-cancer-radiation-oncology/

AND

Coronavirus Portal

 

 

 

 

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Ethics Behind Genetic Testing in Breast Cancer: A Webinar by Laura Carfang of survivingbreastcancer.org

Reporter: Stephen J. Williams, PhD

The following are Notes from a Webinar sponsored by survivingbreastcancer.org  on March 12,2020.

The webinar started with a brief introduction of attendees , most who are breast cancer survivors.  Survivingbreastcancer.org is an organization committed to supplying women affected with breast cancer up to date information, including podcasts, webinars, and information for treatment, care, and finding support and support groups.

Some of the comments of survivors:

  • being strong
  • making sure to not feel overwhelmed on initial diagnosis
  • get good information
  • sometimes patients have to know to ask for genetic testing as physicians may not offer it

Laura Carfang discussed her study results presented at  a bioethics conference in Clearwater, FL   on issues driving breast cancer patient’s  as well as at-risk women’s decision making process for genetic testing.  The study was a phenomenological study in order to determine, through personal lived experiences, what are pivotal choices to make genetic testing decisions in order to improve clinical practice.

The research involved in depth interviews with 6 breast cancer patients (all women) who had undergone breast cancer genetic testing.

Main themes coming from the interviews

  • information informing decisions before diagnosis:  they did not have an in depth knowledge of cancer or genetics or their inherent risk before the diagnosis.
  • these are my genes and I should own it: another common theme among women who were just diagnosed and contemplating whether or not to have genetic testing
  • information contributing to decision making after diagnosis: women wanted the option, and they wanted to know if they carry certain genetic mutations and how it would guide their own personal decision to choose the therapy they are most comfortable with and gives them the best chance to treat their cancer (the decision and choice is very personal)
  • communicating to family members and children was difficult for the individual affected;  women found that there were so many ramifications about talking with family members (how do I tell children, do family members really empathize with what I am going through).  Once women were tested they felt a great strain because they now were more concerned with who in their family (daughters) were at risk versus when they first get the diagnosis the bigger concern was obtaining information.
  • Decision making to undergo genetic testing not always linear but a nonlinear process where women went from wanting to get tested for the information to not wanting to get tested for reasons surrounding negative concerns surrounding knowing results (discrimination based on results, fear of telling family members)
  • Complex decision making involves a shift or alteration in emotion
  • The Mayo Clinic has come out with full support of genetic testing and offer to any patient.

Additional resources discussed was a book by Leslie Ferris Yerger “Probably Benign” which discusses misdiagnoses especially when a test comes back as “probably benign” and how she found it was not.

 

for more information on further Podcasts and to sign up for newsletters please go to https://www.survivingbreastcancer.org/

and @SBC_org

More articles on this Online Open Access Journal on Cancer and Bioethics Include:

Ethical Concerns in Personalized Medicine: BRCA1/2 Testing in Minors and Communication of Breast Cancer Risk

Tweets and Re-Tweets by @Pharma_BI ‏and @AVIVA1950 at 2019 Petrie-Flom Center Annual Conference: Consuming Genetics: Ethical and Legal Considerations of New Technologies, Friday, May 17, 2019 from 8:00 AM to 5:00 PM EDT @Harvard_Law

Genomics & Ethics: DNA Fragments are Products of Nature or Patentable Genes?

Study Finds that Both Women and their Primary Care Physicians Confusion over Ovarian Cancer Symptoms May Lead to Misdiagnosis

 

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Reporter: Gail S. Thornton

This article appeared on the web site of Harley Street Concierge, one of the U.K.’s leading independent providers of clinical, practical and emotion support for cancer patients. 

Cancer at Work: An Interview With Barbara Wilson

Whether you’re supporting an employee through cancer at work. Or you’re a cancer patient struggling to get the support you need. Either way, this Q and A with Barbara Wilson will help you out. Read on for a glimpse into Barbara’s personal experience with breast cancer. Find out where companies are falling short of supporting employees. Discover what you need to do if you’re feeling unsupported at work. And learn what’s unacceptable for Barbara in a modern and civilised society.

In a 2013 interview about cancer at work, you expressed amazement at “the lack of understanding there is about cancer. And what the impact is on individuals”. How would you say this has improved in the last 4 years? And what do you feel still needs to change?

There’s greater awareness and understanding about cancer at work. More organisations are aware of the difficulties people face. But many organisations don’t appreciate that recovery isn’t straightforward or quick. They also tend to rely on generic return to work policies. And these are inappropriate when it comes to supporting people recovering from cancer. A lot still depends on how far the local line manager is prepared to support an employee. And whether they’ll bend rules if need be about leave or sick pay.

You were diagnosed with breast cancer in 2005 and given the all clear in 2010. What did you learn about yourself through treatment and recovery?

 

I learned that I wasn’t immortal or superhuman! And also that life is precious and so it’s important to make the best of it. That doesn’t actually mean counting off things on your bucket list. Or living each day as if it’s your last. It’s about appreciating what you have, family, friends and the sheer joy of being alive.

“Life is precious. It’s about appreciating what you have, family, friends and the sheer joy of being alive.”

It’s a common misperception that people in remission want more family time or to travel the world. What reasons do your clients share with you for wanting to get back to work?

Yes. Before I had cancer, I remember asking a terminally ill employee why she still wanted to work. And she worked until a fortnight before her death. The simple answer is that it’s about feeling normal. Using your brain. Being with friends and colleagues rather than on your own. And losing yourself in your work. There are also financial reasons. But typically – and I can say this based on my own experience – it’s about being ‘you’ again rather than a cancer patient.

“I remember asking a terminally ill employee why she still wanted to work. And she worked until a fortnight before her death. Typically – and I can say this based on my own experience – it’s about being ‘you’ again rather than a cancer patient.”

You share tips for employers and HR professionals in this article for Macmillan. And you set out how to support a colleague during and after cancer treatment. What would you say to an employee who isn’t feeling supported by their employer or colleagues in this way?

In my experience there are two main reasons why people often aren’t supported.

1. Bosses and colleagues don’t understand the full impact of cancer treatment. They won’t understand what fatigue is or chemo brain or peripheral neuropathy. So they often expect people to get ‘back to normal’ work after 6 to 8 weeks. But recovery can take many months. This isn’t helped by the person often looking fit and well.

2. People don’t like talking about cancer at work. They feel awkward. And as a result often decide to say nothing. We advise people to be open from the outset. To understand their right to reasonable adjustments. And their responsibility to update their employer about their recovery and support needs. Employees recovering from cancer often have to take the lead. They have to guide their colleagues about the specific help they need. You can’t expect others to do it for you. It sounds wrong but that’s how it is.

“Bosses and colleagues often expect people to get ‘back to normal’ work after 6 to 8 weeks. But recovery can take many months. “

More than 100,000 people had to wait more than 2 weeks to see a cancer specialist in the UK last year. 25,153 had to wait more than 62 days to start treatment. What’s your reaction to these statistics?

It’s shocking. The worry for patients and their families during this period is totally debilitating. And on top of this it means that the cancer is growing unchecked. Where the cancer is aggressive, the delay may threaten lives. And it will certainly add to the overall costs of care. We really have to address this. It’s just not acceptable in a modern and civilised society.

“The worry for patients and their families during this period is totally debilitating. We really have to address this.”

Finally, can you tell us more about Working With Cancer?

Working With Cancer is a social enterprise and was established in June 2014. We support people affected by cancer to lead fulfilling and rewarding working lives. That means helping people to successfully return to work or remain in work. Or sometimes it’s about helping people to find work – depending on their personal needs. We work with corporate, charities and other third sector organisations to support people throughout the UK.

We coach people diagnosed with cancer to re-establish their working lives. And we train employers to understand how to manage work and cancer. We’ll advise teams about how to support a colleague affected by cancer. And we help carers juggle work whilst supporting their loved ones. Working With Cancer also helps organisations to update or improve their policies.

Barbara Wilson - Cancer at Work

About Barbara Wilson

Barbara Wilson is a senior HR professional with almost 40 years’ experience.  Roles include Group Head of Strategic HR at Catlin Group Ltd. Deputy Head of HR at Schroders Investment Management. And Chief of Staff to the Group HR Director at Barclays. After a breast cancer diagnosis, Barbara launched Working With Cancer. It’s a Social Enterprise providing coaching, training and consultancy to employers, employees, carers and health professionals.

 

For more information about Working With Cancer, click here to visit the websiteFollow this link to connect with Barbara on Twitter. Email admin@workingwithcancer.co.uk. Or call 07508 232257 or 07919 147784.

 

SOURCE

https://harleystreetconcierge.com/cancer-at-work/

Other posts on the JP Morgan 2019 Healthcare Conference on this Open Access Journal include:

2018

Top 10 Cancer Research Priorities

https://pharmaceuticalintelligence.com/2018/12/24/top-10-cancer-research-priorities/

Innovation + Technology = Good Patient Experience

https://pharmaceuticalintelligence.com/2018/12/24/innovation-technology-good-patient-experience/

2017

Inspiring Book for ALL Cancer Survivors, ALL Cancer Patients and ALL Cardiac Patients – The VOICES of Patients, Hospitals CEOs, Health Care Providers, Caregivers and Families: Personal Experience with Critical Care and Invasive Medical Procedures

https://pharmaceuticalintelligence.com/2017/10/24/inspiring-book-for-all-cancer-survivors-all-cancer-patients-and-all-cardiac-patients-the-voices-of-patients-hospitals-ceos-health-care-providers-caregivers-and-families-personal-experience-with/

2016

Funding Opportunities for Cancer Research

https://pharmaceuticalintelligence.com/2016/12/08/funding-opportunities-for-cancer-research/

2012

The Incentive for “Imaging based cancer patient’ management”

https://pharmaceuticalintelligence.com/2012/08/27/the-incentive-for-imaging-based-cancer-patient-management/

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Role of Informatics in Precision Medicine: Notes from Boston Healthcare Webinar: Can It Drive the Next Cost Efficiencies in Oncology Care?

Reporter: Stephen J. Williams, Ph.D.

 

Boston Healthcare sponsored a Webinar recently entitled ” Role of Informatics in Precision Medicine: Implications for Innovators”.  The webinar focused on the different informatic needs along the Oncology Care value chain from drug discovery through clinicians, C-suite executives and payers. The presentation, by Joseph Ferrara and Mark Girardi, discussed the specific informatics needs and deficiencies experienced by all players in oncology care and how innovators in this space could create value. The final part of the webinar discussed artificial intelligence and the role in cancer informatics.

 

Below is the mp4 video and audio for this webinar.  Notes on each of the slides with a few representative slides are also given below:

Please click below for the mp4 of the webinar:

 

 


  • worldwide oncology related care to increase by 40% in 2020
  • big movement to participatory care: moving decision making to the patient. Need for information
  • cost components focused on clinical action
  • use informatics before clinical stage might add value to cost chain

 

 

 

 

Key unmet needs from perspectives of different players in oncology care where informatics may help in decision making

 

 

 

  1.   Needs of Clinicians

– informatic needs for clinical enrollment

– informatic needs for obtaining drug access/newer therapies

2.  Needs of C-suite/health system executives

– informatic needs to help focus of quality of care

– informatic needs to determine health outcomes/metrics

3.  Needs of Payers

– informatic needs to determine quality metrics and managing costs

– informatics needs to form guidelines

– informatics needs to determine if biomarkers are used consistently and properly

– population level data analytics

 

 

 

 

 

 

 

 

 

 

 

 

What are the kind of value innovations that tech entrepreneurs need to create in this space? Two areas/problems need to be solved.

  • innovations in data depth and breadth
  • need to aggregate information to inform intervention

Different players in value chains have different data needs

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Data Depth: Cumulative Understanding of disease

Data Depth: Cumulative number of oncology transactions

  • technology innovators rely on LEGACY businesses (those that already have technology) and these LEGACY businesses either have data breath or data depth BUT NOT BOTH; (IS THIS WHERE THE GREATEST VALUE CAN BE INNOVATED?)
  • NEED to provide ACTIONABLE as well as PHENOTYPIC/GENOTYPIC DATA
  • data depth more important in clinical setting as it drives solutions and cost effective interventions.  For example Foundation Medicine, who supplies genotypic/phenotypic data for patient samples supplies high data depth
  • technologies are moving to data support
  • evidence will need to be tied to umbrella value propositions
  • Informatic solutions will have to prove outcome benefit

 

 

 

 

 

How will Machine Learning be involved in the healthcare value chain?

  • increased emphasis on real time datasets – CONSTANT UPDATES NEED TO OCCUR. THIS IS NOT HAPPENING BUT VALUED BY MANY PLAYERS IN THIS SPACE
  • Interoperability of DATABASES Important!  Many Players in this space don’t understand the complexities integrating these datasets

Other Articles on this topic of healthcare informatics, value based oncology, and healthcare IT on this OPEN ACCESS JOURNAL include:

Centers for Medicare & Medicaid Services announced that the federal healthcare program will cover the costs of cancer gene tests that have been approved by the Food and Drug Administration

Broad Institute launches Merkin Institute for Transformative Technologies in Healthcare

HealthCare focused AI Startups from the 100 Companies Leading the Way in A.I. Globally

Paradoxical Findings in HealthCare Delivery and Outcomes: Economics in MEDICINE – Original Research by Anupam “Bapu” Jena, the Ruth L. Newhouse Associate Professor of Health Care Policy at HMS

Google & Digital Healthcare Technology

Can Blockchain Technology and Artificial Intelligence Cure What Ails Biomedical Research and Healthcare

The Future of Precision Cancer Medicine, Inaugural Symposium, MIT Center for Precision Cancer Medicine, December 13, 2018, 8AM-6PM, 50 Memorial Drive, Cambridge, MA

Live Conference Coverage @Medcity Converge 2018 Philadelphia: Oncology Value Based Care and Patient Management

2016 BioIT World: Track 5 – April 5 – 7, 2016 Bioinformatics Computational Resources and Tools to Turn Big Data into Smart Data

The Need for an Informatics Solution in Translational Medicine

 

 

 

 

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Live Conference Coverage @Medcity Converge 2018 Philadelphia: Oncology Value Based Care and Patient Management

Reporter: Stephen J. Williams, Ph.D.

3:15 – 4:00 PM Breakout: What’s A Good Model for Value-Based Care in Oncology?

How do you implement a value-based care model in oncology? Medicare has created a bundled payment model in oncology and there are lessons to be learned from that and other programs. Listen to two presentations from experts in the field.

Moderator: Mahek Shah, M.D., Senior Researcher, Harvard Business School @Mahek_MD
Speakers:
Charles Saunders M.D., CEO, Integra Connect
Mari Vandenburgh, Director of Value-Based Reimbursement Operations, Highmark @Highmark

 

Mari: Building strategic partnerships with partners focused on population based health and evidence based outcomes. they provide data analytics and consultative services.  Incorporate risk based systems.  also looking at ancillary segments because they see cost savings.  True Performance is their flagship performance program and 11% lower ED (saving $18 million) rates and 16% lower readmissions ($200 million cost savings).  Also launched the Highmark Cancer care Program with Johns Hopkins.  They monitor the adherence pathways and if clinician shows good adherence they give reimbursements.

Charles:  Integra is a cloud based care platform focused on oncology and urology and allow clinicians to practice value based care. Providers must now focus on total cost including ER visits, end of life and therapies (which is half of total cost in US).  The actionable ways to reduce costs is by reducing ER visits.  What is working? Data on reimbursements models is very accurate so practices can dig into data and find effieciencies.  However most practices do not have the analytics to do this.

  • care navigation
  • care path based treatment choices
  • enhanced patient access and experience

What is not working

  • data not structured so someone has to do manual curation of records
  • flawed logic based on plurality of visits but physician doesn’t know who else they saw
  • target pricing not taking into account high prices of new therapies
  • lack of timely reporting either by patient or physician
  • insufficient reimbursements
  • technology limitations

 

4:10- 4:55 Breakout: What Patients Want and Need On Their Journey

Cancer patients are living with an existential threat every day. A panel of patients and experts in oncology care management will discuss what’s needed to make the journey for oncology patients a bit more bearable.

sponsored by CEO Council for Growth

Moderator: Amanda Woodworth, M.D., Director of Breast Health, Drexel University College of Medicine
Speakers:
Kezia Fitzgerald, Chief Innovation Officer & Co-Founder, CareAline® Products, LLC
Sara Hayes, Senior Director of Community Development, Health Union @SaraHayes_HU
Katrece Nolen, Cancer Survivor and Founder, Find Cancer Help @KatreceNolen
John Simpkins, Administrative DirectorService Line Director of the Cancer Center, Children’s Hospital of Philadelphia @ChildrensPhila

 

Kezia: was a cancer patient as well as her child getting treated at two different places and tough part was coordinating everything including treatments and schedules, working schedules

Katrece: had problem scheduling with oncologists because misdiagnosis and her imaging records were on CD and surgeon could not use the CD

John:  the above are a common frustration among patients at a time when they don’t need the confusion. He feels cancer centers need to coordinate these services better

Sara:  trying to assist people with this type of coordination is very tough even with all the resources

Kazia:  she needed to do all the research on her own because big dichotomy being an adult and a pediatric patient where pediatrics get more information and patient centered care. She felt she felt burdening the physicians if she asked the same questions.  How can we get more interaction with primary care physicians and feel comfortable with their interaction?

John: there is this dichotomy especially on wait times for adults is usually longer.  We can also improve patient experience with counseling patients

Katrece: Just working with a patient navigator is not enough.  The patient needs to take charge of their disease.

Sara: Patient communities can help as sometimes patients learn from other patients.

Amanda:  in breast cancer , navigators are common but must take care they are not only people patients see after a while

John:  at CHOP they also have a financial navigator.  On the adult side there are on call financial navigators.  Recent change of the high deductible plans are a major problem.  Although new families are starting to become comfortable with the financial navigator

Katrece:  guiding your children through your experience is important.  It was also important for her to advocate for herself as she had three different sites of cancer care to coordinate and multiple teams to coordinate with each other

Amanda:  A common theme seems to be hard trying to find the resources you need.  Why is that?

Kazia:  Sometimes it is hard to talk about your disease because it can be emotionally draining comforting other people who you told about the disease and they are being empathetic.  Sometimes they want to keep their ‘journey’ to themselves

John:  A relative kept her disease secret because she didn’t want to burden others…. a common cancer patient concern

Sara: Moderation of a social group is necessary to keep it a safe space and prevent trollers (like in Facebook support groups).

Kazia:  most group members will get together and force those trollers out of the group

Katrece: alot of anxiety after treatment ends, patient feels like being dropped on the floor like they don’t get support after treatment.  If there were survivorship navigators might be helpful

Amanda: for breast cancer they do a Survivor Care Package but just a paper packet, patients do appreciate it but a human coordinator would be a great idea

 

 

 

 

Please follow on Twitter using the following #hashtags and @pharma_BI

#MCConverge

#cancertreatment

#healthIT

#innovation

#precisionmedicine

#healthcaremodels

#personalizedmedicine

#healthcaredata

And at the following handles:

@pharma_BI

@medcitynews

 

Please see related articles on Live Coverage of Previous Meetings on this Open Access Journal

LIVE – Real Time – 16th Annual Cancer Research Symposium, Koch Institute, Friday, June 16, 9AM – 5PM, Kresge Auditorium, MIT

Real Time Coverage and eProceedings of Presentations on 11/16 – 11/17, 2016, The 12th Annual Personalized Medicine Conference, HARVARD MEDICAL SCHOOL, Joseph B. Martin Conference Center, 77 Avenue Louis Pasteur, Boston

Tweets Impression Analytics, Re-Tweets, Tweets and Likes by @AVIVA1950 and @pharma_BI for 2018 BioIT, Boston, 5/15 – 5/17, 2018

BIO 2018! June 4-7, 2018 at Boston Convention & Exhibition Center

https://pharmaceuticalintelligence.com/press-coverage/

 

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Almudena’s Story:  A Life of Hope, Rejuvenation and Strength

Author: Gail S. Thornton, M.A.

Co-Editor: The VOICES of Patients, HealthCare Providers, Caregivers and Families: Personal Experience with Critical Care and Invasive Medical Procedures

Patient had ovarian clear cell adenocarcinomas (OCCAs) and underwent a complete hysterectomy at age 52. Interview was conducted 15 months’ post-surgery. Earlier in life, patient had thyroid cancer and removal of her thyroid gland and all the lymph nodes in her neck.

 

Almudena Seeder-Alonso, originally from Madrid, Spain, and now living in Amsterdam, The Netherlands, with her Dutch husband, René, is the eternal optimist, embracing life, reinventing herself, and looking for opportunity in every moment. She is an influential blogger of international relations issues, a career professional in human resources management in both corporate and consulting businesses in Legal, Accounting and Technology, and a lawyer and political scientist with an advanced degree in international relations who is also pursuing a Ph.D. in international relations and diplomacy. And she speaks four languages fluently – Spanish, Dutch, Portuguese and English.

Her story is one of hope, rejuvenation and strength that defines her effervescent personality. One year ago, a routine gynecology exam changed her outlook and perspective on life. She would have never thought that her diagnosis would be ovarian carcinoma of the clear cell, the most aggressive form of cancer.

 

Image SOURCE: Photographs courtesy of Almudena Seeder-Alonso. Top Left: Almudena’s parents, María and Angel, and sister, Cristina, and her husband. Top Right: Almudena during chemotherapy last summer (2015). Middle: Almudena attending a wedding in Asturias (northwest Spain – May 2016), Almudena and René in Comporta, Portugal (Summer 2014) and in New York (April 2014). Below left: Almudena in New York (April 2014). Below Right: Almudena’s sisters, María and Cristina with nephew, Jaime (May 2016). 

A Small Cyst Turns Into Diagnosis of Ovarian Cancer

In early 2015, Almudena visited her gynecologist in Amsterdam for a regular, yearly appointment.

“I was feeling fine. I had no physical complaints, except for my monthly periods which were heavy. I didn’t think much about it. During my examination, my doctor told me that she found a small cyst on my right ovary and we would just observe it to make sure it was not growing.”

Almudena went back to her gynecologist at the OLVG (Onze Lieve Vrouw Gasthuis https://www.olvg.nl/) in Amsterdam twice over the next month to monitor the cyst, only to find that the cyst was growing slightly. Her gynecologist recommended blood tests, an ultrasound, and a specimen of the cyst to be removed through a laparoscopy, a procedure requiring small incisions made below the navel using specialized tools.

“The pathology report said that the cyst was an aggressive cancer, called ovarian carcinoma of the clear cell. I remember sitting in my doctor’s office once she told me the results of the test, and I got very quiet. I could not believe that this was happening to me. While I was meeting with the doctor, I called my husband to let the doctor inform him about the situation. I was listening to this conversation but from far away. He immediately left his meeting with his client (he is one of two founding partners of SeederdeBoer, a Dutch Consulting & Technology firm), to come home. I left the doctor’s office, went home and cried in my husband’s arms.”

Almudena then called her parents, María and Angel, and her two sisters, María and Cristina who live in Madrid, to tell them the news.

“My Mother was very emotional when she heard about my diagnosis. My Father, who is a quiet man by nature, asked me, ‘How could this be happening to you again?’ I did not have an answer for him.”

Almudena’s father was referring to his daughter’s diagnosis of thyroid cancer in her late 20s.

Diagnosis of Thyroid Cancer As A Young Woman

When Almudena was 27 years old, she was diagnosed with follicular thyroid cancer, a slow-growing, highly treatable type of cancer that forms in follicular cells in the thyroid gland. After a 12-hour surgery to remove the gland through a procedure called a full thyroidectomy, she also needed radiation therapy. Many years later, she is feeling fine and continues to be on thyroid medication for the rest of her life.

“I was not aware at that young age of the scope of the diagnosis, but my life really changed. I was kind of a party animal at the end of the 1980s, and I did not have any amount of energy for that anymore. I needed several months to get back into shape as the scar from the surgery was a large one on the right side of my neck. I could not use my right arm and hand properly for months, even writing was complicated. The worst news came later when I could not get pregnant given the situation that many of my eggs were gone because of radiation. At that moment, egg freezing technology was not as advanced as it is today; it was not normal to freeze eggs for a later time. That was really painful, as I could not become a mother, even after four in vitro fertilization (IVF) cycles.”

According to the National Cancer Institute’s web site, thyroid cancer is a disease in which malignant cancer cells form in the tissues of the thyroid gland. The thyroid is a gland at the base of the throat near the trachea (windpipe). It is shaped like a butterfly, with a right lobe and a left lobe. The isthmus, a thin piece of tissue, connects the two lobes. A healthy thyroid is a little larger than a quarter coin. It usually cannot be felt through the skin. The thyroid uses iodine, a mineral found in some foods and in iodized salt, to help make several hormones. Thyroid hormones control heart rate, body temperature, and how quickly food is changed into energy (metabolism) as well as, it controls the amount of calcium in the blood.  http://www.cancer.gov/types/thyroid/patient/thyroid-treatment-pdq

Ovarian Cancer Diagnosis Continues

Almudena then spoke with her physicians in Madrid, as that is where she grew up, to get a second opinion about her ovarian carcinoma diagnosis. The physicians knew her history well and they told her that they did not believe that the follicular thyroid cancer was directly related to the ovarian cancer.

“My local gynecologist in Amsterdam then referred me to a specialist, Dr. J. van der Velden, a gynecologist/oncologist at the Amsterdam Medisch Centrum (AMC), http://www.cgoa.nl/page/view/name/34-wie-we-zijn, one of the top university hospitals in The Netherlands for this surgery and treatment. My husband, René, and I met with Dr. van der Velden, and he told us that my cancer was a fast-spreading condition and I needed to have it removed immediately. He answered our questions, calmed my fears and said he would do everything to help me.

“I have an open attitude towards people so it was easy to create a good connection with the doctors and medical personnel, which I consider very fundamental in such a process. I talked to them about my concerns or doubts and shared my worries about the process that I was going through. I have to say that all of them were wonderful in every aspect!”

Dr. van der Velden explained to Almudena that as clear cell is an aggressive form of ovarian cancer, it would need to be treated that way. One month later, Almudena underwent a procedure called open surgery, rather than laparoscopic surgery, requiring an incision large enough for the doctor to see the cyst and surrounding tissue.

“My incision from the surgery is a constant reminder of the struggle I went through. The cyst, which was 3cm, was a solid mass on my right ovary. It had adhered itself to the ovary and had to be broken to be removed, so some cells spilled out into my reproductive organs, namely, in my uterus and fallopian tubes. During this surgery, which was a complete hysterectomy, the doctor took additional tissue samples of my reproductive organs to be analyzed by pathology. Weeks later, he found no other metastases or extra cancer cells.”

http://www.mountsinai.org/patient-care/health-library/treatments-and-procedures/ovarian-cyst-removal-open-surgery

https://www.amc.nl/web/Het-AMC/Organisatie/Academisch-Medisch-Centrum.htm

The Process of Healing Begins

One month later, Almudena’s body was still recovering from the operation. Now, she had to start chemotherapy back at the OLVG.

“The doctor, Dr. W. Terpstra, hematologist/oncologist instructed me that I would be going through six full cycles of chemotherapy, which means full doses of carboplatin & paclitaxel every 21 days. At first, I felt reasonably good, then as each week progressed, I became more and more tired, nauseous, and just feeling terrible. I was not sleeping well and even lost the sensation of my fingers and toes as chemo attacks the nerves, too. Then, I started losing my eyelashes and hair so I shaved my long, flowing hair and wore a scarf wrapped around my head.”

Almudena would report to the hospital for her weekly chemotherapy session, starting at 9am and leaving at 6pm. The medical team would put her in a room with a full-size bed so she can relax during the infusion. Her husband, two sisters and some close friends would take turns accompanying her during this time, as she had a nurturing and caring support network.

“I could not have gone through this condition without my family and friends. It tests your relationships and shows you who your friends really are.”

The chemotherapy affected Almudena’s red blood cell count halfway through the process and she felt weak and tired.

“Anemia is normal during this time, but always being tired made me concentrate and focus on things less. I would watch a movie or read a book through the chemo session, and then I would fall asleep quickly.”

After Almudena finished the complete cycle of chemotherapy infusions, she had a follow-up appointment with her doctor, which included blood work, CT scan, and other diagnostic tests.

“My doctor said the tests results were very good. Now, I see him every three months for a routine visit. That was such a wonderful report to hear.

“During this process I learned to love myself, and pampered myself and my body. I learned to improve in terms of beauty, even in the worst circumstances. I wanted to feel beautiful and attractive for myself and for my close family. After three chemo cycles, I started even to think about how my new hair style would be in the moment that I finished chemo.”

Ovarian Carcinoma Pathophysiology Facts

According to published studies, ovarian clear cell adenocarcinomas (OCCAs) account for less than 5 percent of all ovarian malignancies, and 3.7–12.1 percent of all epithelial ovarian carcinomas. By contrast, early‐stage clear cell ovarian cancer carries a relatively good prognosis. When compared with their serous counterparts, a greater proportion of OCCA tumors present as early‐stage (I–II) tumors, are often associated with a large pelvic mass, which may account for their earlier diagnosis, and rarely occur bilaterally. Very little is known about the pathobiology of OCCA. Between 5 percent and 10 percent of ovarian cancers are associated with endometriotic lesions in which there is a predominance of clear and endometrioid cell subtypes, suggesting that both tumor types may arise in endometriosis. http://www.cancer.gov/types/ovarian/hp/ovarian-epithelial-treatment-pdq

The National Cancer Institute’s web site offers these statistics. In most families affected with the breast and ovarian cancer syndrome or site-specific ovarian cancer, genetic linkage has been found to the BRCA1 locus on chromosome 17q21. BRCA2, also responsible for some instances of inherited ovarian and breast cancer, has been mapped by genetic linkage to chromosome 13q12. The lifetime risk for developing ovarian cancer in patients harboring germline mutations in BRCA1 is substantially increased over that of the general population. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2001101/

Words Of Wisdom

“Throughout this journey, I found myself again in some way and found my strength as well. When it seemed I could not stand it anymore, either physically and mentally, I realized that I could.

“At the beginning of my diagnosis, I asked myself, ‘Why me?’, and I then changed it to, ‘Why not me?’ I discovered that I have the same opportunities as anyone who becomes ill. The important perspective to have is not whining and dwelling on my bad luck. The important thing is to heal, survive, and recover my life, which is very good!

“I learned the real value and importance of things: to differentiate and give real meaning and value to the care and support of my husband, René, who was always there for me, and my parents and sisters, who came to Amsterdam very often during the process. I also made sure that René was well-supported and accompanied by my family.  René was feeling terrible for me, but he never showed it — and I learned this fact after I was starting to be back on track.”

Almudena’s Life Today

“At a significant moment in my life during my cancer diagnosis and after a long professional life in many corporate and consulting business in several countries, I decided to re-invent myself and start a new career, this time, in the battle of the opinions. I always liked foreign affairs and diplomacy, so why not share my thoughts and write about current international issues.”

That’s when Almudena started a blog to discuss relevant international political issues with her background specialization in International Relations, International Politics, International Law and Governance.

“I consider myself politically liberal and have been influenced by J.S. Mill and A. Tocqueville’s tradition of thought, as well as their ethical conception of the defense of freedom. This is what I try to capture in my political approach and in this blog. http://almudenas.website/index.php/about-me/

“Regarding my profession, I have already reinvented myself, leaving the corporate life with all that is included regarding life’s standards, and do what really makes me happy, which I´m doing right now. It seems after all, looking back with perspective, I did the right thing.

“I am grateful for my life and never take anything for granted. I am the happiest when I am doing things that please me or give me the utmost satisfaction. I now have balance in my personal and professional life, something that I’ve never had before. My husband, René, likes it too and I have his full support.”

She recently ‘liked’ this saying on LinkedIn, the professional network site, ‘I never lose. I either win or learn,’ which was attributed to Nelson Mandela, the deceased South African anti-apartheid revolutionary, politician and philanthropist.

Almudena’s life continues on a path of balance, richness and thankfulness for the person she is and the many blessings she continues to have along the way.

Editor’s note:

We would like to thank Gabriela Contreras, a global communications consultant and patient advocate, for the tremendous help and support she provided in locating and scheduling time to talk with Almudena Seeder-Alonso.

Almudena Seeder-Alonso provided her permission to publish this interview on August 10, 2016.

REFERENCES/SOURCES

http://www.nytimes.com/2016/07/31/health/harnessing-the-immune-system-to-fight-cancer.html?_r=0

http://www.sharecancersupport.org/share-new/support/stories/linda_clear_cell_ovarian_cancer/

http://www.cancer.gov/types/thyroid/patient/thyroid-treatment-pdq

http://almudenas.website/index.php/about-me/

http://www.cancer.gov/types/ovarian/hp/ovarian-epithelial-treatment-pdq

http://www.cgoa.nl/page/view/name/34-wie-we-zijn

http://www.mountsinai.org/patient-care/health-library/treatments-and-procedures/ovarian-cyst-removal-open-surgery

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2001101/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2001101/

Other related articles on the link between Ovarian Cancer and Thyroid Cancer:

https://www.whatnext.com/questions/is-there-a-link-between-ovarian-and-thyroid-cancer

Other related articles/information:

https://www.olvg.nl/

https://www.amc.nl/web/Het-AMC/Organisatie/Academisch-Medisch-Centrum.htm

 

Other related articles on Ovarian Cancer and Thyroid Cancer were published in this Open Access Online Scientific Journal include the following: 

Ovarian Cancer (N = 285)

2015

A Curated History of the Science Behind the Ovarian Cancer β-Blocker Trial

Model mimicking clinical profile of patients with ovarian cancer @ Yale School of Medicine

https://pharmaceuticalintelligence.com/2015/09/26/model-mimicking-clinical-profile-of-patients-with-ovarian-cancer-yale-school-of-medicine/

2014

Preclinical study identifies ‘master’ proto-oncogene that regulates stress-induced ovarian cancer metastasis | MD Anderson Cancer Center

https://pharmaceuticalintelligence.com/2014/08/15/preclinical-study-identifies-master-proto-oncogene-that-regulates-stress-induced-ovarian-cancer-metastasis-md-anderson-cancer-center/

Good and Bad News Reported for Ovarian Cancer Therapy

https://pharmaceuticalintelligence.com/2014/07/01/good-and-bad-news-reported-for-ovarian-cancer-therapy-2/

Efficacy of Ovariectomy in Presence of BRCA1 vs BRCA2 and the Risk for Ovarian Cancer

https://pharmaceuticalintelligence.com/2014/02/25/efficacy-of-ovariectomy-in-presence-of-brca1-vs-brca2-and-the-risk-for-ovarian-cancer/

 

And 
 
Thyroid Cancer (N = 124)
2015
Experience with Thyroid Cancer

 

2012

Thyroid Cancer: The Evolution of Treatment Options

https://pharmaceuticalintelligence.com/2012/08/19/thyroid-cancer-the-evolution-of-treatment-options/

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April 28, 2016
 

Dr. Foti Recognized With Honorary Member Award from Oncology Nursing Society

Margaret Foti, PhD, MD (hc), chief executive officer (CEO) of the American Association for Cancer Research (AACR), was honored this morning during the opening ceremony of the 41st Annual Congress of the Oncology Nursing Society (ONS) in San Antonio, TX, with the Honorary Member Award for her unwavering dedication to improving cancer care and her commitment to the prevention and cure of all cancers.
The Honorary Member Award is awarded by the ONS to thank and honor an individual who is not otherwise eligible for ONS membership for his or her contributions to oncology nursing, support of the ONS, and conduct consistent with the ONS mission and core values.

 

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