SAVE THE DATE! Wednesday, September 15, 2021 from 1-3 pm EST (6-8 pm BST) when we welcome Dr. Michael Stubblefield for a special Zoom meeting on the subject of "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. Below is a link to a brief synopsis of Radiation Fibrosis Syndrome. We will have details about registration for this Zoom meeting later this summer.
Long-term Hodgkin's survivor, author, and world traveler, Shannon Ansbaugh has discovered the joys of living, in spite of numerous set-backs and health struggles. Her book, "The Bucket List Safari" is a fantastic, wonderful story of one woman's determination to make every day count.
Shannon shared her personal story with us last August, and we are featuring it here, along with her description of "The Bucket List Safari". There is a link below for those who would like to purchase Shannon's book. We are thrilled to announce that Shannon has offered to donate proceedings from "The Bucket List Safari" to Hodgkin's International.
THANK YOU SHANNON!!
Hi, I’m a 34-year Hodgkin’s Lymphoma survivor from Seattle. My diagnosis of Hodgkin’s Lymphoma was at age 14 when I went in for an annual physical to be on the high school swim team. Much of my adult healthcare has revolved around complications from the Mantel field radiation. I developed breast cancer at 32 and had a mastectomy and 6 months chemo. At 38, I had my first heart attack and stent due to coronary and valvular disease from scarring. Later in 2014, on blood thinners I developed a life-threatening hemorrhage with clots completely blocking my right main stem bronchus requiring emergent intubation. In 2015 I developed another breast cancer and had another mastectomy. In 2017, I had another MI and had open heart triple bypass surgery. Shortly thereafter we discovered that the graphs failed, and I developed heart failure. About 2 years later I had another stent and then a TAVR for aortic value replacement. Finally, in March of this year, while back on blood thinners, I had another lung hemorrhage with clots completely blocking my right main stem bronchus again (same location as the first) requiring multiple emergent intubations. I am working on regaining my stamina and confidence after this last event and staying very careful to avoid Covid exposure. I am grateful to be alive and for all the support that I’ve had along the way. I am so grateful to be connected with Hodgkin’s survivors through this amazing website!
On Monday, July 12, Hodgkin's International received a check for $10,000 from Sam Chazanow of Movement Mortgage Company and their foundation, GraceWorks. We owe Movement Mortgage a huge "THANK YOU!" This wonderful event would never have happened without the efforts of Gail Fewell, our fellow Hodgkin's survivor, and her sister, Karen Solis, who submitted the application on our behalf. We were thrilled, humbled, and deeply appreciative to accept this award.
We were also fortunate to have a local reporter present to document the event. You can read all about it by clicking the link below.
Shelley Fuld Nasso, CEO of the National Coalition For Cancer Survivorship, was recently featured in a podcast with Emil Ekvardt, founder of Great.com in the ongoing "Great.com Talks With...." program. In this episode, Shelley covered many of the issues that long-term Hodgkin's survivors deal with every single day. She also addresses the need for Survivorship Plans. NCCS has introduced a number of initiatives to support cancer survivors. Listen to the podcast, and check out their website. We owe them SO much!
Cancer survivors sometimes turn to herbal supplements as a compliment to their treatment therapy or ongoing health routine. Unfortunately, there are a number of companies who erroneously claim "miraculous cures" or "amazing benefits." In addition, some herbal treatments may actually interfere with certain medications. Be smart! Check with your physician before using herbal meds. Do your research about the herbal product- know who makes it, exactly what is in it, and whether or not here are any side effects or drug interactions. To get you started, here is an article recently published in Cancer.net, a publication of the American Society of Clinical Oncology, about herbal supplements.
Many long-term Hodgkin Lymphoma survivors will face a secondary cancer diagnosis, well after they have reached remission. Unfortunately, these same survivors may not have the full range of options that someone without a history of Hodgkin's would have. They may find themselves needing to consider a clinical trial.
The subject of clinical trials and who has access to clinical trials has been the focus of many research organizations as of late. It was one of the primary areas discussed at this year's American Association for Cancer Research annual meeting. We NEED these discussions. We know that clinical trials are often NOT offered to those who may need them the most.
Here are two articles on Clinical Trial Eligibility- The first, "How Are Eligibility Criteria for Clinical Trials Changing to Help People With Cancer?" by Patty Spears, a 20-year breast cancer survivor, gives a good overall explanation of what is involved in the clinical trial process.
The second piece, "Clinical Trial Diversity", is included on the website for the Food and Drug Administration (FDA) in the United States. It explains what clinical trials are and what the FDA is currently doing to address inequities in access to trials. There are links to clinical trials for a number health issues, including cancer. The information is available in multiple languages.
