Welcome to the June 2020 edition of our nbmtLINK
Welcome to Summer. We hope you are all doing well. Stay safe.

Trauma Responses to the Pandemic and Cancer:
When Should I Seek Help?

By Jennifer Gillette, LMSW, nbmtLINK

For those who want to save yourself a few minutes of reading, here is a spoiler. If you think you are not coping well, get some extra help. Early intervention usually leads to better outcomes with any condition. Your insurance company, employee assistance program, or your healthcare center can lead to covered/qualified providers. But for those who want to hear more on this, read on.

About 8% of us on average will experience a form of post traumatic disorder in our lifetime.  About 30% of first responders experience depression and/or post traumatic syndrome, which is about 10% above non-responders according to a SAMHSA 2018 report.  This number is of course based on what they can measure.  This number was also created before we had a world pandemic in which we had our front liners begin serving in this war on COVID 19 without gear to even protect themselves.  We also need to consider that many people suffer in silence as they are afraid to be seen as weak to their peers or due to other concerns of stigma. In addition to this, cancer patient’s trauma has increased during this time.  As if a life-altering illness does not bring enough anxiety, many have been facing intense fears of how this virus could affect them if they catch it with an extra vulnerable immune system.  

Researchers from Malaysia and Boston recruited 469 patients,18 years or older, who had various cancer types and concluded that about 21.7 percent of the participants had PTSD at the six-month follow-up assessment. (On a positive note, at the four-year follow-up, rates dropped to 6.1 percent). Stress disorders will be rising as front liners and cancer patients alike as they have faced higher levels of trauma.  Therefore, we will be seeing major rises in Post-Traumatic Stress Disorder, (PTSD), as well.

Look at anxiety on a spectrum. Some fear is healthy. Those diagnosed with cancer will probably have a heightened sense of awareness from their concerns that may help them be more in tune with changes in their body that require screening. As well, they are more apt to stay motivated, practice compliance regarding treatment, and take better care of themselves. However, there is anxiety/fears that do not motivate and rather disable. Discovering where you are on the spectrum has more to do with how disabling the fear is to your normal function, how long it lasts, and the intensity of the emotion. Normal responses to trauma are shock, anger, anxiety, fear and guilt. Responses that interfere with relationships, work, getting out of bed, create haunting feelings or last longer than a month are telling you it might be time to get some help.

So, how do we know if we're dealing with PTSD or another form of an anxiety disorder? Unfortunately, we are not like cars that can be hooked up to a scanning tool for easy diagnostics. I remember in college learning about diagnosing. My classmates joked about feeling they could each self-diagnose five or more mental disorders. Working in healthcare for more than twenty years, I’ve seen the subjectivity that occurs when one seeks out more than one opinion. Although we have resources such as the DSM V, a diagnostic tool published by the American Psychiatric Association that provide specific criteria for diagnosing, there still is a reliance on perception. Although I'm not a fan of labels or over pathologizing, we do try to effectively treat what we perceive as the issue. What matters is how your experience is affecting the quality of your life. Has this event lowered your ability to function, to experience joy, or interfered with relationships? 

The following are signs of PTSD:
  • Nightmares and flashbacks
  • Avoiding places, events, people, or things that bring back bad memories
  • Strong feelings of guilt, hopelessness, or shame
  • Trouble sleeping or concentrating
  • Continuous feelings of fear or anger
  • Loss of interest in activities and relationships that used to be enjoyable
  • Self-destructive behavior, such as drug or alcohol abuse
  • Frightening or unwanted thoughts
  • Difficulty feeling emotions
  • PTSD symptoms are different for each person and can come and go. The symptoms usually develop within three months of a traumatic event. But they can also occur several months or even years later. If you have any of these symptoms and they last more than a month, talk with your health care team.

So, what will happen if you think you have PTSD? The most common ways to treat Post Traumatic Stress is through therapy, support groups, and sometimes medication. Medications that treat depression and anxiety can make it easier to benefit from counseling as your chemistry can be thrown off by extreme stress and trauma. Support groups can help you feel less isolated with your experience, can encourage you, and participants can get feedback from those that are more likely to understand their experience. Therapy techniques helpful to the treatment of PTSD are Cognitive Behavioral Therapy, Dialectical Behavioral Therapy, Exposure Therapy, EMDR, and stress management techniques. In time, symptoms can range from disappearing to being significantly minimized to make them easier to manage moving forward.
Therefore, do not fear seeking treatment if you needed. You are not weak because you are capable of being affected by things that are chaotic and horrific. It takes more strength to try to fix it. We’re all doing our best in this life.

For more information about PTSD, here are a few links: 

You can always reach out to your health care team and I can also be reached at  jennifergillette@nbmtlink.org .

Lunch & Learn
June 17
(Please adjust your time zone.)

  Living and Thriving with Acute Myeloid Leukemia (AML)
This program will cover the recent approvals of novel, targeted agents for Acute Myeloid Leukemia (AML). We will discuss less intensive regimens incorporating targeted therapies that may be
used to achieve remissions, even if intensive chemotherapy has failed. Older AML patients
are receiving these effective regimens as initial treatment, and may then become eligible for a curative transplant. Finally, post-transplant AML patients are taking these oral agents in an effort
to reduce further the risk of disease relapse. Dr. Harry P. Erba, MD, PhD of Duke University Medical Center will present on this important subject. His patient, Debbie Beavers, now in remission, will also share her recent AML experience. There will also be plenty of time for questions.
To register for this Lunch & Learn, please click below on the link. If you have any technical issues related to registering, please contact peggyburkhard@nbmtlink.org or call (248) 770-5172.The call in information is contained in the form you use to register. Note: YOU call in to participate.
Special FREE Program This Saturday
FREE Virtual Town Hall Meeting this Saturday, June 6 from 1-3 pm EST re: Adult Leukemia Care in the Time of COVID 19 for Patients, Families and Health Care Providers
We’re partnering with Total Health Conferencing to bring you the latest in adult leukemia care!

Register here:  https://bit.ly/3cJXs3g

Do you Have an Upcoming
Birthday or
Transplant Anniversary/
Second Birthday?
(If you would like to receive a fun Second Birthday card, please email cindyburke@nbmtlink.org. We will be happy to add you to our list.)

Want to support our efforts to help other patients and caregivers navigate this journey?

  COVID-19 Emergency Food Assistance Program,  designed to keep immunocompromised patients safe during the COVID-19 Pandemic.

This comprehensive program brings together the unique offerings of Team Rubicon, a nonprofit organization that serves communities by mobilizing veterans to respond to natural disasters and humanitarian crises, and Patient Advocate Foundation (PAF), a national nonprofit organization that provides case management services and financial aid to patients with chronic, life-threatening and debilitating illnesses to provide access to food for patients with a current cancer diagnosis, multiple sclerosis or rheumatoid arthritis who experience difficulty accessing food due to COVID-19. 
The program will provide an online platform designed to identify the need and location of immunocompromised patients in communities across the United States, and mobilize and match one of Team Rubicon’s 120,000 primarily veteran volunteers, known as Greyshirts, to deliver food and other critical supplies to those patients. The online platform will also allow  patients with an identified financial need to apply for a one-time grant of $500 to help pay for food and nutritional needs. Please note that there are eligibility criteria for the grant and all patients may not qualify.

More information, including application instructions can be found at  https://teamrubiconusa.org/applynow .
Our mission to provide you with free online resources remains strong.
As we comply and integrate social distancing, we invite you to check out the following resources.

We are a phone call away for patients and their loved ones. From one on one peer support to scheduled call series and webinars, we are ready to ease your burden.
Patients, caregivers and health care professionals are amongst those we aim to help through our valued resource books, programs and one on one calls.
We simply cannot do it without the support of corporations, foundations and individuals willing to make a difference in the lives of others.
How We Help Others!
We Invite You to Become an nbmtLINK Partner!
Link Partners include cancer centers and allied partners who annually support our mission of providing psychosocial support to patients, caregivers, their families and health care professionals dedicated to helping people navigate a bone marrow transplant. If you would like to learn more about the many benefits (books, programs, hyperlink on our website, bookmark inclusion) to being a Link Partner, please do not hesitate to contact us at (248) 358-1886. Want a free bookmark which lists our many Link Partners? Let us know and we will send you one!

We acknowledge and thank the following Link Partners for their ongoing support

American Society for Transplantation and Cellular Therapy (ASTCT)
Barbara Ann Karmanos Cancer Institute
Blood and Marrow Transplant Program at Northside Hospital
Blood & Marrow Transplant Program, The Sidney Kimmel Cancer Center at Thomas Jefferson University Hospitals
Center for International Blood and Marrow Transplant Research (CIBMTR)
City of Hope
Dana-Farber/Brigham and Women’s Cancer Center
Duke Adult Blood and Marrow Transplant Program
Froedtert & the Medical College of Wisconsin Cancer Network
Henry Ford Cancer Institute
Incyte Corporation
Memorial Sloan Kettering Cancer Center
Meredith A. Cowden Foundation
Nebraska Medicine
Oregon Health & Science University Knight Cancer Center
Roswell Park Comprehensive Cancer Center
Seattle Cancer Care Alliance
Siteman Cancer Center at Barnes-Jewish Hospital/Washington University
School of Medicine
Spectrum Health Cancer Center
Stem Cell Transplantation and Cellular Therapy Program, John Theurer Cancer Center at Hackensack University Medical Center
The Leukemia & Lymphoma Society
University Hospitals Seidman Cancer Center
UPMC Hillman Cancer Center
Vanderbilt Ingram Cancer Center
Thank your for being a friend of the nbmtLINK. We simply could not do this without you. If you can support our efforts at this time, we thank you in advance. Every dollar helps..

Peggy Burkhard
Peggy Burkhard
Executive Director
(248) 358-1886
National Bone Marrow Transplant Link