2021 Graft versus Disease
 Virtual Symposium Series 
This unique conference focuses on cutting edge research and new treatments. Our symposia have two tracks: one designed for physicians and other health care professionals, and one for bone marrow transplant (BMT) survivors, their families and their caregivers. Due to COVID19 restrictions, our in person meeting has been postponed to 2022. To support those with chronic graft versus host disease and those in the community, we continue our virtual symposia series with our second installment:

Friday, October 8th, 2021 at 10AM – 12PM EST
Dr. Robert Zeiser, MD
Medical Center University of Freiburg (MCUF)
“Novel Approaches to Address Chronic GVHD in Clinical Trials and Practice”
*Presentation followed by a patient-centered Q&A panel hosted by the GvHD planning committee.
We hope that you will join us for this exciting virtual event!

Nuances of a New Normal
By David Weinstein
(Fifth blog)

Seen above: The donor reads to the recipient

My bone marrow donor was my sister. She was not a perfect match, but when all of the factors were considered, including proximity and our known genetic connection, she was the appropriate choice. Matches may be found anywhere in the world. However, sometimes the issue of time is primary, especially if someone is severely ill. As it happened, my sister was working for the University of California, San Francisco (UCSF), just a few blocks from where I was an inpatient. For two consecutive days, she was attached to an apheresis machine while her blood circulated out of one arm, through the system and returned into her other arm as the machine collected stem cells. When the process was completed, she walked out of that facility with her arms hanging limp by her sides like an orangutan. 

Bone marrow transplant day came and went as described in the previous blog. We waited while my body responded and sometimes reacted. Graft Versus Host Disease (GVHD) was a part of that process; fortunately, only once it became life threatening for me.  

The symptoms generally appeared as skin rashes or severe dryness, eye dryness and some gastrointestinal issues. For the next year or two, symptoms either became predictable or disappeared after a period of intensity.

It is important to point out that as phenomenal as my treatment was, complete and clear proactive descriptions of GVHD and other lasting side effects from the protocol were insufficient. In fact, had I not become acquainted with the National Bone Marrow Transparent Link early on, I would have remained in the dark about these issues. 

My experiences since the five-year mark have continued to include rather severe peripheral neuropathy, chronic fatigue, some treatable eye issues and nutrition absorption challenges. The neuropathy is treated with certain medications, specific nutritional supplements and as much exercise as possible, albeit limited by my fatigue. I cannot emphasize enough the critical part exercise plays in this recipe. Endorphins are very real and hugely helpful. Fatigue has not changed since the end of the protocol but sleep is readily available and I do a lot of it. There are eye lubrication options that work best when combined with certain foods. That information is readily available, often from nutritionists rather than ophthalmologists.

A few weeks after transplant, my numbers started showing consistent improvement, indicating that an immune system was growing inside of me, which was becoming capable of providing the defense I needed. While the direction and inertia were present, the growth and acclimation processes were not finished. It was now time to plan a departure from what had been home on the 11th floor of UCSF.

Leaving a hospital after this kind of a lengthy experience requires a lot of planning. Since there will be months of rehab at home, everything needs to be set up in advance. Have the medications and required tools been ordered and delivered to my house? I will still have my three-pronged intravenous port in my chest and it will be used at home. Before I am released, has the rolling drip pole been ordered and delivered to my home? 
Someone will need to teach my caregivers and me how to clean the ports and administer the medications through these lines a few times a day. 

Once again, the magicians at UCSF showed up and basically ran a three-ring circus to make sure there were no hiccups. Even my nine-year-old son learned how to clean the port and connect various feeds. Dad had become a science project and he was happy to do it. 

On discharge day, I got into a car for the first time in almost six weeks and eventually walked into my house. Aside from immediate family, nobody else was supposed to come into the house for a while. In fact, we behaved in similar ways to how we do now during COVID. 

The second night home, my more severe GVHD effect happened occurred. I had been released from the Oncology Ward with a massive migraine headache, which the practitioners thought was caused by the titration from extended use of heavy pain medications. What they did not recognize was the double subdural hematoma that brought on a grand mal seizure on my bathroom floor. I was back to the E.R. again; this time, in an ambulance, and into the familiar tunnel of an MRI machine. The hematomas were actually delayed side effects from the chemotherapy. Though it was scary and rough, this was a one-time event. The hematomas reabsorbed on their own over several weeks; and though there were some discussions with the discharge doctors afterward, a new normal was establishing itself.

Next - Learning to thrive after BMT.

Editor’s Note: If you would like to reach out to David after reading this blog, you may contact him at Daweinstein@sbcglobal.net To view his ceramic work, please visit https://daweinstein60.wixsite.com/muddworks

Lunch & Learn
with the LINK

A Telephone Support Program for Patients,
Families/Caregivers/Loved Ones

Wednesday, Oct. 20, 2021
Noon EST (one hour)
(Please adjust your time zone accordingly.)

A donor doctor dad shares his incredible journey to save his young daughter with AML through a clinical trial, awareness and so much more.

Special thanks To Our Sponsors: 
The Leukemia & Lymphoma Society, Incyte Corporation, Pharmacyclics & Janssen
and Omeros Corporation 
We also thank our Esteemed Link Partners, listed at the end of this newsletter.

This month's telephone educational and support program will highlight the story of a donor dad who stopped at nothing to save his daughter, Kenza, diagnosed with acute myeloid leukemia(AML) at just nine months old. Dr. Omar Durani of Dallas, Texas will talk about Kenza’s life-saving clinical trial five years ago, his family today, the need to spread the word to create much needed awareness through DKMS, and his incredible haplo donor experience. Leah Szumita, MS, RN, CCRN, ACNS-BC, Director, Clinical Trial Support Center of The Leukemia & Lymphoma Society will join Dr. Durani and further emphasize the importance of clinical trials and how to better understand and navigate them. The nbmtLINK's licensed staff social worker, Jennifer Gillette, will facilitate the program. There will also be plenty of time for live questions.

This FREE program is intended to provide psychosocial and emotional support along with health information from national experts regarding critical topics surrounding cancer and treatments. This program is recorded and available on our website one week after airing live. (www.nbmtlink.org)

To register for this Lunch & Learn, please click above, to access the quick registration form.
The form contains the call in details needed.
If you have any technical issues related to registering, please contact peggyburkhard@nbmtlink.org or call (248) 770-5172. Note: YOU call in to participate.
(We do not call you.)

Save the Date

Our next webinar on cGVHD will take place on Wednesday, Oct. 27th starting at NOON EST.
Stay tuned for details soon.

Join the Celebration!

Survivors, let us help YOU celebrate your 2nd birthday—your second chance at life! The National Bone Marrow Transplant Link would love to send you a free, Celebrating 2nd Birthday Postcard annually, to be received in the month of your transplant to acknowledge your transplant anniversary! Sign up today by emailing your name and home address to cindyburke@nbmtlink.org. Wishing you many more healthy and happy birthdays to come!

How We Help Others!
We are a phone call or email away for patients and their loved ones.
Patients, caregivers and health care professionals are amongst those we aim to help.
We cannot do it without the support of corporations, foundations and individuals like you!

Special thanks to our Esteemed Link Partners, listed below, who make everything we do possible through their support.

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.

American Society for Transplantation and Cellular Therapy (ASTCT)
Barbara Ann Karmanos Cancer Institute
Blood and Marrow Transplant Program at Northside Hospital
Center for International Blood and Marrow Transplant Research (CIBMTR)
City of Hope
Dana-Farber/Brigham and Women’s Cancer Center
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
Vanderbilt-Ingram Cancer Center