Latest News

Hodgkin's International
  • Home
  • Latest News
  • Survivor Stories
  • Resources
    • What are Late Effects? >
      • Cardiovascular Late Effects
      • Subsequent Cancers
      • Psychosocial Effects
    • Articles and Papers
    • Survivorship Care Plan
    • Survivorship Clinics
    • History of Hodgkin Lymphoma
    • Videos
  • Newsletters
  • Blog
  • About
  • Contact
  • Donate

I’m a ‘syringe half-full’ kinda girl

12/13/2022

0 Comments

 
Picture
Meet Sheilagh Foley, a Hodgkin's survivor with a familiar tale to tell, and she does it so beautifully. She perfectly describes the fear, the struggles and the frustration in being misunderstood by medical providers.
Sheilagh's story appeared n the Irish Times earlier this week. Hodgkin's International was mentioned as a resource, and we are thrilled to have the "shout out!"

READ FULL ARTICLE HERE
0 Comments

Up To Date:  "Overview of Cancer Survivorship Care for Primary Care and Oncology Providers"

10/11/2022

0 Comments

 
Picture
This is a "must read" paper (by Raymond Chan, RN,PhD, Larissa Nekhlyudov, MD, MPH, Patricia Ganz, MD) for survivors and medical providers. It is EXACTLY what is needed in the world of cancer survivorship- a comprehensive template for insuring that survivors get the care that they need.

​Download it, pass it on, place it in the hands of your doctors and caretakers. It's key.

Read full article here
0 Comments

Cardiovascular care of pediatric cancer survivors: Mitigating a lifelong risk

4/21/2022

2 Comments

 
Picture
Cardiovascular screening is critical for Hodgkin Lymphoma survivors.  Anthracyclines and radiation put childhood cancer survivors at higher risk for heart failure and heart disease.   Here is a recent article published in HemOnc Today discussing the reasons for cardiac follow-up surveillence. 

Read Full Article Here
2 Comments

The Rise of the Expert Patient in Cancer: From Backseat Passenger to Co-navigator

3/30/2022

0 Comments

 
Picture
Long-term survivors have been using the internet to understand their Late Effects for years.  The value of self-advocacy is highlighted in this article, published in the American Society of Clinical Oncology Journal.
​
"Patients who have cancer have leveraged the Internet to gain a better understanding of their disease and connect across geographic boundaries with others facing the same challenges. Online cancer communities have developed into resources that highlight new research and evolving care pathways. Combined with increasing health literacy and social media, they have enabled some patients to become experts in their cancer. This combination of empowerment and expertise describes the new “e-patients.”"

read full article here
0 Comments

A Conversation with Childhood Cancer Survivor & Musician Ryan Hamner

2/18/2022

0 Comments

 
Picture
Ryan Hamner is a four-time Hodgkin's survivor, musician, and author of "This is Remission: A Four-Time Cancer Survivor's Memories of Treatment, Struggle, and Life." (Available on Amazon). He is a regular contributor to Curetoday.com. As a musician, he wrote and recorded, "Where Hope Lives" for the American Cancer Society and "Survivors Survive" for the 2015 #WorldCancerDay. Like many of us, Ryan has experienced some of the Late Effects of his treatment, including cardiac problems.  Read the full interview with Ryan in Coping With Cancer Magazine.

Read full article here
0 Comments

Life after cancer: More survivors live longer, face new health challenges

1/8/2022

0 Comments

 
Picture
​More cancer patients live longer. Few get the help they need to stay healthy.
50-year Hodgkin Lymphoma survivor, Susan Leigh, describes the challenges of long-term cancer survivors in this USA Today article.

​

Read Full Article Here
0 Comments

"As the War on Cancer Turns 50, Earlier Diagnoses and Treatments Are Saving Lives"- a recent article in AARP, by Sari Harrar

11/4/2021

0 Comments

 
Picture
A wonderful history of the "War on Cancer" and includes several quotes from Dr. Vincent DeVita- one of our Hodgkin lymphoma heroes! Dr. DeVita had an instrumental role in developing the MOPP chemotherapy protocol- the treatment that ultimately made Hodgkin's a curable disease. Also mentioned in the article is our "own" Susie Leigh, fellow long-term Hodgkin lymphoma survivor (FIFTY YEARS NOW!). Susie had a pivotal role in the foundation of the National Coalition for Cancer Survivorship and in the cancer survivorship movement. This is a great story, and one that we are ALL a part of.
Read full article here
0 Comments

Hodgkin's International Receives $10,000 Grant

7/14/2021

0 Comments

 
Picture
Hodgkin’s International is grateful for the Movement Condo Team and being chosen to be this year’s GraceWorks recipient.
Our hearts are full knowing that this gift will help drive our mission to connect survivors with one another and to provide them with essential information about the Late Effects they may face as a result of earlier treatments.

Martha's Vinyard Times reporter, Lucas Thors, interviewed Erin for the occasion. 

Read Full Article Here
0 Comments

Hodgkin Lymphoma Survivors: We Need to Do Better - Tara O Henderson, MD, MPH, Kevin C Oeffinger, MD

12/22/2020

1 Comment

 
Picture
Survivorship care is indeed more complex than simply a physical exam  focused on the lymph nodes and a friendly catch-up on life.
In this issue of the Journal, de Vries and colleagues (1) examined the cause-specific late mortality among a multi-center Dutch cohort of Hodgkin lymphoma survivors. Although this study examines a population that has been extensively examined, and we know Hodgkin lymphoma carries a high risk of chronic health conditions, subsequent malignant neoplasms, and premature mortality, the breadth and details included in this analysis further inform care of Hodgkin lymphoma survivors and support the need for the development of novel approaches to treat patients with newly diagnosed Hodgkin lymphoma.

Read Full Article Here
1 Comment

Lymphoma – Hodgkin: Late Effects of Treatment

7/1/2020

0 Comments

 
Picture

Recent article on “Cancer.net” describing some of the long-term effects of treatments for HL, including second cancers, fertility complications, thyroid problems, heart and lung damage, and emotional distress. These findings highlight the need for careful follow up for HL patients.

Read Full Article Here
0 Comments

“The Cost of Surviving Cancer” by Michael Eisenstein

11/14/2018

0 Comments

 
Picture

Treatments for Hodgkin Lymphoma can inflict a toll on the body that is
felt for decades to comeThis is a fascinating, timely article on the MANY costs of surviving cancer, and in particular for Hodgkin Lymphoma survivors. Eisenstein gives a comprehensive and all-too familiar view of the post-diagnosis life of those who thought their battle was over. The article includes an interview with Kevin Oeffinger, MD, formerly of Memorial Sloan-Kettering Cancer Center in NYC and now a family physician at Duke Cancer Institute in Durham, North Carolina, as well as with other researches in the field of cancer survivorship.

Read Full Article Here
0 Comments

Late Effects of Treatment for Hodgkin LYMPHOMA Survivors: The Basics

5/1/2018

0 Comments

 
Picture
While we have previously posted this information on our website, it’s always worth repeating…
First of all, many of the late effects listed below may NOT apply to more recently diagnosed Hodgkin Lymphoma (HL) survivors. Treatment for Hodgkin Lymphoma has changed dramatically in the last forty years, and even in the last couple of decades. We now know that earlier forms of radiation and chemotherapy can have significant, sometimes deadly consequences for those who were diagnosed “way back when” (1960-1990’s, roughly). The good news is that those effects have been recognized, studied, and have informed the way HL is currently treated. More good news-
We now know what to be aware of and how important it is to remain vigilant, well after we are pronounced “cured”.

LONG-TERM SURVIVORS OF HL CAN SUFFER THE FOLLOWING LATE EFFECTS:
​
Heart Disease
Lung Disease
Thyroid Disease
Secondary Cancers
 such as Breast Cancer, Lung Cancer, Leukemia, Non-Hodgkin Lymphoma, Thyroid Cancer, Esophageal Cancer, Skin Cancer, and others
Radiation Fibrosis– where normally healthy tissue becomes “sclerotic,” or hard and stiff
Debilitating Fatigue
Compromised immune system
Infertility
Depression

These are just a few of the possible late effects of earlier treatment. Older forms of radiation, such as cobalt radiation, may have particularly toxic repercussions. Think of the part of your body that received radiation, such as your chest, neck, abdomen, pelvis, etc, as being “in the line of fire”. Yes, the treatment may have cured the cancer, but it may have also left a path of destruction in its wake. Vital organs, like the heart and lungs, could be significantly compromised. Women who received radiation to the chest could be at risk for breast cancer.
Many long-survivors of HL feel well for years after they end treatment. Some seem to have by-passed late effects all together. Others have been bombarded by so many health issues that they’ve literally lost count. While it is clear that more research needs to be done in this area, there is also an abundance of evidence that long-term survivors of Hodgkin Lymphoma are at risk. We owe it to ourselves to be aware, to be informed, and to be pro-active about our health.
WHAT CAN YOU DO?
Get educated!
Hodgkin’s International has included several articles about late effects on this website, including the article below, as well as a video on “Radiation Fibrosis Syndrome”. We’ve added blogs and stories from long-term survivors. There are several institutions and support groups who have published extensively on the subject of late effects in HL survivors. They include:
  • The American Cancer Society
  • The Leukemia and Lymphoma Society
  • ​The National Coalition For Cancer Survivorship

Create a “Survivorship Plan”There are several examples of these and they can be found on all of the above sites. Some are more detailed than others. All include a medical history for each survivor- the more detailed the better. For those of us who were treated decades ago, this might be difficult, as earlier medical records may not be readily available. Find out as much as you can. Don’t wait until you become symptomatic. Discuss your Survivorship Plan with your General Practitioner, Oncologist, and other sub-specialists and make sure that it’s included in your medical record.
1.  Explore Survivorship Clinics in your area
Find out where they are and whether or not you are an “eligible” client. Some clinics are only for adult survivors of childhood cancers, some request that you were previously treated there, etc. Explore whether or not your insurance plan covers a yearly visit to a Survivorship Clinic.
2.  Get the support you need….
In addition to all the cancer institutions, research centers and non-profits, there are several support groups especially geared toward long-term Hodgkin Lymphoma survivors. The American Cancer Society and the Leukemia and Lymphoma Society both have support networks. ACOR, or the “Association Of Cancer Online Resources” has an extensive support group for HL survivors. There are threads on that site for “Long Term Survivors”. Facebook also has more than a few sites devoted to HL survivors, including some that are exclusive to long-term survivors. They include:
  • Hodgkin’s International https://www.facebook.com/hodgkinsurvivors/
  • Living Life After Hodgkin’s Lymphoma https://www.facebook.com/groups/LLaHL/
  • Longterm Hodgkin’s Survivors https://www.facebook.com/groups/282165145293115/about/
  • Hodgkins Lymphoma/Disease Survival and Late Effects Late 1960’s- Early 2000’s https://www.facebook.com/groups/cameron933/
Hodgkin’s International will continue to update all of this information on a regular basis.
​
Let us know what we can do to help. And remember, you are NOT alone.

0 Comments

Late and Long-term Side Effects of Hodgkin Lymphoma Treatment

5/1/2018

0 Comments

 
Picture
Recent article in “American Cancer Society” describing some of the long-term effects of earlier treatments for Hodgkin Lymphoma (HL), including second cancers, fertility complications, infections, thyroid problems, heart disease, stroke, and lung damage. These findings highlight the need for careful follow up for HL patients

Read Full Article Here
0 Comments

Cancer Survivorship: A Need for International Collaboration - Dr. Vittorio Mattioli, MD, Susan Leigh, RN, BSN

5/1/2017

0 Comments

 
Picture
​“Cancer Survivorship: A Need for International Collaboration,” Editorial by Dr. Vittorio Mattioli, Interview with Susan Leigh, RN, BSN

Read Full Interview Here
0 Comments

HODGKIN LYMPHOMA SURVIVORS AT HIGH RISK OF SECOND CANCERS

3/13/2017

0 Comments

 
Picture
This article in “Science Daily” describes some of the long-term effects of earlier treatments for Hodgkin Lymphoma, including lung cancer, breast  cancer, leukemia, bowel cancers and some skin cancers. These findings highlight the need for careful follow up for Hodgkin Lymphoma patients.

Read Full Article Here
0 Comments

Radiation Fibrosis Syndrome – video of Dr. Michael Stubblefield

10/5/2011

0 Comments

 
Many long-term survivors of Hodgkin Lymphoma suffer from Radiation Fibrosis Syndrome, or RFS. Essentially, this is when tissue becomes “sclerotic,” or abnormally hard and stiff, and it can affect vital organs, including the heart and lungs. RFS is thought to be caused by radiation therapy, particularly the kind of radiation that was used decades ago. Dr. Michael Stubblefield of Memorial Sloan-Kettering Cancer Center has studied RFS extensively. We’ve included his YouTube video presentation  at the hospital from October, 2011,
We encourage Hodgkin Lymphoma survivors to discuss their risk for RFS with their physician.
0 Comments
    DONATE TODAY
Picture
Copyright ©2021 Hodgkin's International.
​All rights reserved.

Connect With Us

View Terms & Conditions / Disclaimer and Waiver
  • Home
  • Latest News
  • Survivor Stories
  • Resources
    • What are Late Effects? >
      • Cardiovascular Late Effects
      • Subsequent Cancers
      • Psychosocial Effects
    • Articles and Papers
    • Survivorship Care Plan
    • Survivorship Clinics
    • History of Hodgkin Lymphoma
    • Videos
  • Newsletters
  • Blog
  • About
  • Contact
  • Donate