Monthly Newsletter- June 15, 2022

Tess Nowell and Kat Stevenson

Join Us Tomorrow!

There is still time to sign up for our Zoom Meeting this Wednesday, June 15 at 12 pm EST, 5 pm BST

This is an informal, purely social gathering. We will meet as an entire group and (hopefully!) use breakout rooms as well. Hope to see you there!
Zoom Link to Gathering on Wednesday June 15
"Meeting Cancer Survivors' Psychosocial Needs: A Conversation with Dr. Patricia Ganz"
by NCI (National Cancer Institute) staff, June 7 2022

The emotional health of long term survivors is one of our top concerns at Hodgkin's International. We are in the process of developing a piece for our website that will cover this subject in detail and will include interviews with professionals who have clinical experience in psychosocial health.  

The article below recently appeared in a publication of the National Cancer Institute (NCI). Dr. Patricia Ganz, well known for her work in the area of cancer survivorship, answers some of the more pressing questions on the challenges of meeting the mental health needs of survivors. 
Meeting Cancer Survivors' Psychosocial Needs

"Medical Breakthrough: Epic Plus Tissue Valve Gets FDA Approval"

By Adam Pick, Patient Advocate and Author

For Hodgkin's survivors who are facing valve replacement, this is HUGE news. We may not have the same choices that others will due to our past history- for example, those who have already had open heart surgery may not be eligible for a second one. Non-invasive procedures have become a life-saving second option for some. The beauty of the Epic Plus Tissue Valve, among other things, is that it does not require taking a blood thinner. Read more by clicking the button below.
FDA Approves Epic Plus Tissue Valve
"Solving a 30 Year Mystery-  Cured of Hodgkin lymphoma, I never expected the health problems I was having were late effects from my treatment"
by Carol Kuehnert in ASCO Post, March 1 2013

A note from Erin:
I came across this 9 year old article while researching Dropped Head Syndrome in Hodgkin lymphoma survivors. Ms. Kuehnert's story is so familiar. What struck me most was her comment at the end:

"Still, my experience has left me feeling on my own as I try to stay on top of my myriad health issues. I saw many doctors over the past 9 years because I was looking for answers and for someone to be on my side, and I wasn’t successful. I just keep thinking: I was able to find information that linked my physical problems to the radiation I had received. Why couldn’t my doctors?"

As Hodgkin's International just celebrated our sixth anniversary, I couldn't help think about why we came together in the first place. It was for EXACTLY this reason:  as survivors, we were not getting enough information from our doctors. We had to teach each other what we needed to know. We've been doing this for years now, in tandem with some of the earliest Facebook sites dedicated to Hodgkin's survivors, like Living Life After Hodgkin's Lymphoma and Hodgkins Lymphoma/Disease Survival & Late Effects 1960-early 2000's . 

The good news is that there are an increasing number of clinicians and researchers who are working hard on our behalf. There are a growing number of Survivorship Clinics as well as subspecialties in areas like Cardio-Oncology and Subsequent Cancers. We know, without a doubt, that Late Effects are real. Now we just need to make sure that every last Hodgkin's survivor knows this, knows what to do, and has the ability to get the help that they need and deserve.

Read Carol Kuehnert's article below to hear a familiar voice...
"Solving a 30 Year Mystery"- ASCO article from 22013
Dr. Michael Stubblefield- 'How Cancer Rehabilitation Can Help You Live Well"
in Coping Magazine, June 2 2022

Dr. Michael Stubblefield is the National Medical Director for the ReVital Cancer Rehabilitation Program and is an expert in the area of Radiation Fibrosis. He has written extensively on this subject, as well as on the topic of neurotoxic chemotherapy. The article below appears in a recent issue of Coping Magazine. It offers a good overview on the benefits of cancer rehabilitation for survivors.
Cancer Rehabilitation- Dr. Michael Stubblefield
"Moving Through Cancer" by Dr. Kathyrn Schmitz

Kathryn Schmitz, PhD, MPH is well known for her research in "exercise oncology"- the use of exercise in cancer prevention, control and survivorship. Her recent book, "Moving Through Cancer," is a "must read" for anyone who has been diagnosed with cancer. It includes helpful guidelines for developing an exercise program that is achievable for everyone.

Hodgkin's International was fortunate to receive an advanced copy of the book, and we were asked for our comments. What was most impressive was the copious amount of research on why exercise WORKS- at any stage of survivorship. Dr. Schmitz makes a valid argument for the many benefits of moving- even when you don't feel up to it, even just for 30 minutes, and throughout your cancer journey. 
Moving Through Cancer
Members of the MSK research team: Dr. Luis Diaz, Dr. Andrea Cercek, Jenna Sinopoli, clinical trials nurse, Jill Weiss, clinical research supervisor, Melissa Lumish, clinical fellow

"Rectal Cancer Disappears After Experimental Use of Immunotherapy"-
from Memorial Sloan Kettering Cancer Center

The news of this amazing breakthrough was announced at the recent conference of the American Society of Clinical Oncology (ASCO). The team at Memorial Sloan Kettering Cancer Center in NYC was able to achieve 100% success for all 14 patients in this trial. Unheard of! 

It is great news for many reasons. Colorectal cancer has been notoriously difficult to treat in the past. Hodgkin's survivors are at risk for colorectal cancer if they have received radiation to the abdominal and pelvic area. Lastly, whenever we hear about "100% success," it is always a time to celebrate! Read more about this fantastic achievement by clicking the button below.
Major Breakthrough in Treating Colorectal Cancer
"Colonoscopy After Positive FIT Test Cuts Risk of Colorectal Cancer Death"
by NCI (National Cancer Institute) staff May 5 2022

Colorectal and Gastrointestinal cancers are a risk for long-term Hodgkin lymphoma survivors, particularly if they have had radiation to the abdominal and pelvic area. The American Children's Oncology Group (COG) recommends that survivors who have received at least 30 Gray of abdominal therapy have routine colonoscopies starting 10 years after radiotherapy or at the age of 35 (whichever occurs last) and repeating every 5 years. 

Fecal Immunochemical Tests (FIT tests) are at-home tests that can detect the presence of blood in a stool sample. They are a helpful first step in possibly identifying colorectal cancers, but they do not replace a colonoscopy procedure.  A positive result should be followed with a colonoscopy. This article, from the National Cancer Institute (NCI), explains how important that is.
Colonoscopy After Positive FIT Test
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