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            Hodgkin's International Newsletter
                                                          August 15, 2021

                 Hodgkin's Lymphoma Survivors and Covid-19
                      
Sorting through the facts and the fallacies.......

Let's face it- there are more opinions, suggestions, and words of wisdom about how to stay safe during this pandemic than we know what to do with. To make matters worse, what appears to be the best advice one day can be completely contradicted the next day. Is it safe to get the vaccine? Do I need a booster shot now? Should I be wearing a mask all the time? Is it OK to keep up with medical appointments, even if that means heading into the hospital, where EVERYONE seems to have Covid-19? These are the questions that we have been wrestling with for what seems like an eternity now. 

We will try to simplify things as best we can, with a cautionary asterisk on the word "simplify." NOTHING about this is simple. We can share current CDC and FDA recommendations, but, in the end, every single Hodgkin's survivor is unique. NONE of us have the exact same profile or history. We may have very similar journeys, but no two paths are exactly alike. 

For example, while we have always assumed that survivors who have had splenectomies would be significantly compromised, many survivors in this category have developed fairly robust immune systems over the years. In addition, not all Hodgkin's survivors suffer from the Late Effects of earlier treatments. We know that there are plenty of you out there who have had large doses of radiation and/ or MOPP and ABVD chemotherapy who are doing just fine- no heart disease, lung disease, secondary cancers, etc. 

For those reasons, it would be impossible to create a "one size fits all" list of recommendations for long-term Hodgkin's survivors. We really do need to look at our own medical histories-  previous treatments and surgeries, current medications, life style, etc. Those things count, and they count a heck of a lot more than what another survivor might choose to do. So when we hear a rallying cry for getting a third (booster) vaccine, we need to be sure that it's the right thing for US. That's why we always seem to be saying, "CHECK WITH YOUR DOCTOR". Get a professional opinion. Make sure that, whatever you do, it's the right thing for YOU.

Here is the "bottom line," according to the experts we consulted with. You should get the vaccine if you haven't already. Those around you should get the vaccine. You should be extra cautious, use masks, avoid crowded places, etc. Err on the side of being vigilant, not complacent.  Continue to check with the CDC for updates about booster shots, etc. (Our experts also take their cues from the CDC!) Above all, know that you are not alone. We are here to help in any way we can. Feel free to message us on Facebook or email us, and we will try to get back to you ASAP. 


You will find below an article with the latest recommendations from the Center for Disease Control in the US. We've also included an article specific to (current) cancer patients and cancer survivors, and finally, an article that appeared recently on the Boston University website that does a great job of explaining the myths about Covid-19 and vaccines. 
Latest Information from the CDC on Covid-19
Article on Cancer Survivors and Covid-19
Myths vs. Facts on Covid 19- A Publication from Boston University
                                    Dr. Michael Stubblefield

REGISTER NOW for our upcoming Zoom meeting on Wednesday, September 15, 2021, from 1-3 pm EST (6-8 pm BST) when we welcome Dr. Michael Stubblefield to discuss "Radiation Fibrosis Syndrome." Dr. Stubblefield is a leading expert on the subject. He has led extensive research programs on Radiation Fibrosis and has developed successful treatments to deal with this health issue, one that affects many Hodgkin's survivors. Click the link below to register. 
Registration for Zoom meeting on Radiation Fibrosis Syndrome
       News on Minimally-Invasive Multiple Heart Valve Surgery

Heart valve problems are one of the more concerning Late Effects of some earlier cancer treatments. They are also some of the more difficult ones to fix, especially for those who have had scarring to the chest area from radiation. Many of us who have already had open heart surgery are being told, "That's it- one and done. We can't do this again". 

The good news is that minimally-invasive heart valve procedures are becoming more sophisticated and more common. The new frontier appears to be "Minimally-Invasive Multiple Heart Valve Surgery". While not appropriate or possible for all Hodgkin's survivors, the fact that these techniques are being explored and are in trial gives us hope. Here is a recent article on the subject that appears in "Heart Valve Surgery.com"

BTW- if you have heart valve issues due to your previous history, this is a GREAT resource. Check it out! (Heartvalvesurgery.com)

 
Article on Minimally-Invasive Multiple Heart Valve Surgery
Meet Jamie Beamish
Actor and Hodgkin's Survivor
(Article in "Lymphoma Action," a UK- based organization dedicated to supporting those with lymphatic cancers)

We're pretty sure that we have some "Bridgerton" fans in our Hodgkin's family, but even the most ardent fan may not know that  Jamie Beamish, who played Nigel Berbrooke, is a fellow Hodgkin's survivor!!

Here is an interview with Jamie, published in Lymphoma Action- which, by the way, is a terrific resource for Hodgkin's survivors, and not just those who live in the UK. There is great information on their website as well as stories about survivors. Check it out!

 
Meet Jamie Beamish
Discover "Lymphoma Action"
Addressing Issues of Cancer Disparities- The American Society of Clinical Oncology


After decades of keeping this issue on the back burner, attention is finally being given to the subject of cancer disparities- the unequal burden that certain groups of the population experience in dealing with a cancer diagnosis.  Institutions like the American Society of Clinical Oncology (ASCO), the American Association for Cancer Research (AACR), and the National Cancer Institute (NCI) are increasing their efforts to study this problem and to make recommendations for how to create a more equitable and just "playing field" for ALL cancer survivors.  We know that cancer does not discriminate- it doesn't care who you are or where you came from. The real problem is that when it comes to being cared for as a cancer patient or survivor, not all things are created equal. In fact, it is more often true that the most vulnerable among us are the least likely to get good care, or even have access to care. Vulnerable populations have the worst outcomes from a cancer diagnosis. 

The sign in this photo says it all- "What lessens one of us lessens ALL of us". Hodgkin's International is committed to doing whatever we can to promote equality in cancer care for ALL survivors. We are including a recent article in "JCO Oncology Practice," a journal of the American Society of Clinical Oncology, below. It's short, to the point, and gives a good overview of what ASCO intends to do to change the disparity dynamic. We also include a statement made by the National Cancer Institute (NCI) on the definition of cancer disparities. 

This is a topic that is too important to ignore. It effects all of us, whether we realize it or not.

 
Definition of Cancer Disparities
ASCO Article on Cancer Disparities
"OUT: The National Cancer Survey"

"OUT" is a survey specifically for LGBTQ cancer survivors.  In conjunction with The Center for Black Equity and other national organizations, this survey was created to provide an opportunity for LGBTQ survivors to safely share their experiences in dealing with cancer. We hope that you will lend your voice to this effort. THANK YOU!
Take the Survey
Cora Fahey, Rep. Mark DeSaulnier, Erin Cummings

A Call To Action: The Cancer Care Planning and Communications Act (CCPCA)

In June of 2019, I had the honor of attending my first "CPAT (Cancer Policy and Advocacy Team)" meeting with the National Coalition for Cancer Survivorship (NCCS). It was a fantastic, jam-packed three days spent brain-storming with other survivors, hearing about efforts in cancer advocacy, and learning about policies that would impact all cancer survivors, from the newly diagnosed to the "old timers" like me. 

The highlight of the conference was the time we spent on Capitol Hill, meeting with our state Senators and Representatives in an effort to promote legislation-  like the "Cancer Care Planning and Communications Act (CCPCA), H.R. 4414, spearheaded by Representative Mark DeSaulnier (D- CA). This bill has been in the works for years and is about to be reintroduced to Congress in the coming months. 

In short, CCPCA would provide for the creation of a cancer care plan for survivors and the means to pay for it- through Medicare now, and (eventually, as history has shown) through private insurance companies who would follow Medicare's lead. 

CCPCA is a vital first step in making sure that cancer survivors know what to expect during their treatment AND when it ends. YOU CAN HELP!  WE NEED YOUR VOICE! Please read this statement from NCCS about the bill and learn how you can make a difference for ALL of us!
Learn about CCPCA and GET INVOLVED!
And finally....a quote for the day-

“Believe in yourself. You are braver than you think, more talented than you know, and capable of more than you imagine.” 
― Roy T. Bennett, The Light in the Heart
Copyright © 2021 Hodgkin's International, Inc., All rights reserved.


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