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Monthly Newsletter- March 15, 2022

To our fellow survivors in Ukraine and the neighboring countries- We are thinking of you and sending you our prayers. We will do our best to provide whatever information we can about cancer care, beginning with the following bulletin from the American Society for Clinical Oncology (ASCO). ASCO has scheduled a one hour webinar this Thursday, March 18, at 9 am EST to "discuss the crisis in Ukraine as it related to the cancer community." The webinar is open to all and is free.

Most of all, we just want you to know that we stand with you! 
Information for Patients in Ukraine
Meet Chris Barbieri-
By Karla Guererri

Hodgkin's International Community Members introductions continues! This month, I interviewed Chris Barbieri, of San Antonio, Texas. Chris is originally from the New York metropolitan area and moved to Texas in 2018, where he lives a very active life with his wife and daughters. Here is what Chris told me: 
 
When and Where were you diagnosed and treated for Hodgkin's Lymphoma?
I was diagnosed with stage 3B/4B at the age of 23 in 1994 in Brooklyn NY by my GP,  Dr. Anthony Moretti who took the time and had the patience to ask me all of the right questions. He is no longer with us. And I was treated at the Sanford Nalitt Institute for Blood Related Diseases at the Staten Island University Hospital. 
 
What did your doctor say about possible late effects in 1994?
Not much. He recommended that I bank my sperm, but I didn’t do it. For me, it was two weeks from diagnosis to treatment and there were so many things to do. 
 
Did you know any other HL patients at that time? 
Yes, There was another young man my age with the same treatment dates at the hospital. But he relapsed the next year and he didn’t make it. I learned from the hospital grapevine that he passed away. 
 
At the time of diagnosis and treatment, Chris worked for UPS. When we spoke, he had the highest praise for the way that the company, and particularly the regional manager treated him. During ten months of treatment (MOPPABV), Chris was offered disability status, but he chose not to take it. He was in line for a promotion, so his manager pulled some strings to speed the process. That qualified Chris for more sick leave and a higher salary. After treatment, Chris remained with UPS for four more years. 
 
 Briefly, what is your life like now?
 I would quantify my life as "normal" right now. I am active and working. I am married and have two wonderful daughters from my wife's previous marriage who keep us busy. 
 
 Have you experienced late effects?
Yes. I have some issues that I am dealing with that are most likely a result of the chemo and radiation I have had. There are too many to list.
 
Among those late effects are electrical cardiac issues and leaky valves which are being monitored. When I asked Chris if there are any particular challenges for him, he spoke of what he suspects is chemo brain. He says that he sometimes forgets conversations and other times has to search for names and words. 
 
 Describe how you came to know about Hodgkin's International. What brought you to this group?  
I discovered HI on the Long Term Hodgkins Survivor Group on Facebook. I have always been curious about side effects of chemo and radiation and was wondering if I "was the only one" who thought the way I do.
 
 What have you learned or gained from your connections here at HI?  
The knowledge that people are out there like me who have questions and concerns regarding their health as it relates to lymphoma and its treatment. Its also good to know that there are groups like HI that are leading the way in advocacy. 
 
Lymphoma Coalition Europe (LCE):

Here is some fascinating and important information about the incidence and treatment of lymphoma, including Hodgkin Lymphoma, in the European countries. LCE's research has produced a wealth of data on everything from who is likely to be diagnosed with HL to the availability of radiation equipment in the different countries. As in the US, they are also focusing on the disparities in cancer care across Europe.

Here is their mission statement:
"LCE is an umbrella organization of lymphoma member organizations working across Europe, Turkey and Israel. LCE aims to ensure everyone affected by lymphoma in Europe has access to the best information, support, treatment and care, which is delivered in partnership with respected, valued, well-supported and professional patient organizations."

Click on the button below to read more about Hodgkin Lymphoma in Europe. You will need to go to "Subtype Reports" and choose "Hodgkin Lymphoma: European Subtype Series" to get specific information about HL. 
 
Lymphoma Coalition Europe
Meet Mike Armstrong- 
One of this month's stories in Coping Magazine

Mike Armstrong is a two-time cancer survivor- of leukemia and prostate cancer. He also happens to be the former Chief Executive Officer of Comcast, AT&T and Hughes Electronics. As a long-term cancer survivor, Mike has had his share of adversity. Click on the link below to read about the insights Mike has gained from his experience and his tips for how to maintain a sense of hope. 
"Finding a Path to Hope"- Mike Armstrong's story
NCCS presentation with Pam DeGuzman, PhD, RN-  March 23

The National Coalition for Cancer Survivorship, NCCS, will hold a special presentation on Wednesday, March 23 entitled, "A Nurse-Led Care Model to Improve Access to Rural Survivorship Care." The speaker will be Pam DeGuzman, PhD, RN and Associate Professor at University of Virginia School of Nursing. Pam will describe and discuss her work in reducing disparities in quality of life for rural cancer survivors. To read more about this event and/or register, click the button below.
 
Improving Access to Rural Survivorship Care- NCCS
Bicuspid Aortic Valves: What Should Patients Know About SAVR and TAVR?
by Adam Pick, in HeartValveSurgery.com

Heart disease after radiation therapy and chemotherapy is not uncommon. Valvular disorders, particularly in the aortic valve, are well known. The good news is that we now have several options for repairing or replacing the aortic valve. Here is a recent article that appears in HeartValveSurgery.com about two of the procedures that are used most often- Surgical Aortic Valve Replacement (SAVR) and Transcatheter Aortic Valve Replacement (TAVR). 
Bicuspid Aortic Valves: SAVR &TAVR
Your Rights and Responsibilities as a Cancer Survivor

Did you know that, as a cancer survivor, you have the right to negotiate workplace accommodations? that you may be able to work out a bill-paying agreement for rent? and that you are required to fully understand your insurance policy before signing? 

Here are two brief articles on cancer and employment and legal rights. The first is in Coping Magazine and centers on the US. The second is from MacMillan Cancer Support in the UK. 

The third link will connect you to a webinar that is being held next week- on Thursday, March 24, by the Cancer Research Foundation and Seagen, Inc. 
The webinar will focus on various legal issues that may arise from a cancer diagnosis.
"Your Legal Rights as a Cancer Survivor"- Coping Magazine
Cancer and Employment Rights- MacMillan, UK
Webinar on Legal Tips for People with Cancer
News About Pregnancy for Childhood Cancer Survivors-
A report from the National Cancer Institute (NCI)

The National Cancer Institute (NCI) in the US has announced the results of a recent study on pregnancy in childhood cancer survivors. Of note, it looks like childhood survivors are just "as likely to have healthy babies as those without a history of cancer..." On the other hand, the study also showed that "women who had been treated for cancer as children had higher risks of several severe complications during pregnancy, delivery, and the period after delivery." 

As with any other long-term risks, it is very important for survivors to have as much information as possible about the kind and the amount of treatment they received for their Hodgkin's diagnosis. Likewise, it is crucial that survivors talk to their health care providers about their fertility concerns, and as early as possible, even at the time of diagnosis.

Click the button below to read more about pregnancy for childhood cancer survivors.
 
Good News and Cautions About Pregnancy- NCI Report
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