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            Hodgkin's International Newsletter
                                                           June 15, 2021

        Lessons Learned.... speaking with Dr. Kevin Oeffinger

Hodgkin's International welcomed Dr. Kevin Oeffinger on June 8 for a conversation about Hodgkin Lymphoma survivors and the particular issues we face post treatment. Dr. Oeffinger has been treating Hodgkin's survivors for decades, and his research in the area of survivorship is extensive. We were lucky to have Dr. Oeffinger for over an hour, answering a number of questions and addressing several topics of concern for long-term survivors. Here are some of the main points that were covered:

1. Dr. Oeffinger is about to embark on a study (a grant from the National Cancer Institute) to see if mammograms and breast MRI's can predict the risk of breast cancer in women who were treated with radiation therapy at a young age (30 years or younger). Other organizations participating in the study include Memorial Sloan Kettering Cancer Center, Stanford University, St. Jude Hospital, and Princess Margaret Hospital in Canada.

2. Much of the research in cancer survivorship involves "trying to determine what will happen down the road." Dr. Oeffinger said the research focuses on deciding which factors are important to pay attention to and which ones are less crucial. He also acknowledged the difficulty in managing all the unknowns in cancer survivorship. It is clear that there will be repercussions from earlier treatments, but when and how they will occur is still a bit of an unknown. Dr. Oeffinger likened the problem to a frequent complaint from his patients that they are often "waiting for the next shoe to drop."

3. Dr. Oeffinger's work at Duke includes getting information out to primary care providers about the particular health challenges Hodgkin's survivors face. He also expressed a willingness to consult with providers who have specific questions or concerns for their Hodgkin's patients.

4. Regarding "paying the bills"- Dr. Oeffinger acknowledged that this is something that many of his patients worry about. He suggested that patients contact the financial office of the institution where they are being seen and talk to them about payment schedules, etc. (We have included a link to funding sources below).

5. On the subject of breast cancer: Dr. Oeffinger recommended yearly mammograms AND MRI's for Hodgkin's survivors who were treated with mantle radiation before the age of 30. These procedures can be done at the same time or alternatively every six months. He noted that, in most cases, the insurance codes will accept these recommendations due to the risk factor for Hodgkin's survivors being greater than 20%. Dr. Oeffinger added that there are now alternative screening procedures for women who can not have a mammogram or MRI because they have a pacemaker, or for other reasons.

6. On the risk of heart disease: Dr. Oeffinger discussed at length some of the causes of heart problems and heart failure in Hodgkin's survivors, having to do with both radiation AND certain chemotherapy drugs. Survivors who were treated with mantle or whole body radiation are at risk for cardiovascular disease because of the way radiation causes scarring or Radiation Fibrosis. There are also some chemotherapy drugs that are known to have adverse effects on the heart. 
      Dr. Oeffinger's suggestions for better heart health:
      Exercise!! Just 30 minutes of moderate activity five days a week makes a huge difference!
      Diet: The "Five Alive" Diet: a minimum of five servings of fruits and vegetables a day. He also recommended the "Mediterranean Diet".
      Keep your LDL below 100
      Regarding the use of statins: side effects are minimal for over 97% of patients, and they really can save lives. That said, the issue becomes yet 
another "risk/ benefit " dilemma for survivors who DO have side effects.

7. On colon cancer: Colon cancer is a risk for survivors who had whole body or peri-aortic radiation. Dr. Oeffinger noted that many survivors 
may not remember whether or not they had whole body (or anterior and posterior) radiation and may need to check with the institution that treated them. He added that, while many hospitals might not have records that date back to 20 or 30 years ago, many Radiation Oncology Departments DO keep these records a bit longer, so it is suggested that survivors might want to contact that department directly. In addition, survivors who were treated with either MOPP or CHOPP chemotherapy may also be at risk. This is because of the drug called "Procarbazine" that was included in those treatments. Procarbazine may cause serrated polyps to develop in the colon which can appear in number and need to be removed.
        Dr. Oeffinger's recommendations for colon cancer screening:
        Colonoscopy-  8 years after radiation or if older than 30 years of age, every 5 years, possibly sooner if other risk factors (hereditary, etc) involved.
        "FIT" testing- Fecal Immunochemical Test: can be done at home, not expensive, sufficient for many survivors who don't have other risk factors.

8. Regular colon cancer and breast cancer surveillance will go a long way in reducing two of the biggest health concerns for survivors. 
Dr. Oeffinger reminded us that, due to our earlier treatment history, the more we can reduce the burden that additional treatment would cause, the better off we will be.

9. On Neck Drop Syndrome:
Dr. Oeffinger talked about using preventative measures to reduce the chances of developing this problem- beginning early on after cancer treatment ends. There are rehabilitation therapists who work with survivors to improve this condition. He referred us to Dr. Michael Stubblefield, who has studied Radiation Fibrosis and has developed a rehabilitation program to address these issues. Dr. Oeffnger has seen some success in survivors who participate in rehab and who take up regular exercise programs that include walking, yoga, swimming, water aerobics, working with light weights, etc. 

10. On Swallowing Issues:
We learned that swallowing issues often develop after radiation to the neck and lower jaw area due to a lack of saliva production as well as nerve damage to the muscles and tissue in the throat and esophagus. Dr. Oeffinger suggested drinking room temperature water before meals, chewing slowly, and not talking while eating. He also said that there are swallowing techniques that can be taught by trained therapists to help with this.

11. On Learning to Live with Uncertainty:
Dr. Oeffinger readily acknowledged how difficult it is for survivors to have the fear of the unknown as a constant companion over the years. He emphasized the need to find a balance on the "bell shaped curve of the world" - a place somewhere between living in fear and living in a state of denial. He told us that, "There is no such thing as a hypochondriac cancer survivor." He suggested that we know our bodies best, and that we pay attention and listen to our bodies so that we can recognize when something isn't right. 

As he said more than once during our talk, Dr. Oeffinger encouraged us to be our own best advocate when it comes to our health care. He added that, if things were not working out with a particular provider or clinician and we felt we weren't being understood, that we should "Vote with our feet..." 

We have included some links to the studies that Dr. Oefffinger mentioned in his talk as well as some information on funding sources for cancer treatment and follow up care. We will also be adding these links to our website.
The Childhood Cancer Survivor Study Breast Cancer Probability Calculator
The Childhood Cancer Survivor Study Cardiovascular Risk Calculator
Resources for finding financial aid-
                          Models of Care in the US and Abroad

In our discussion with Dr. Oeffinger this past week, we posed a question about Models of Care for cancer survivors. We were curious to know whether or not there is an essential standard of care or protocol that is followed by caregivers. Dr. Oeffnger replied "No" to this question, with the explanation that Models of Care for long term survivors are dependent on a number of variables, including locale and available resources.

We decided to look into this a bit further. We found two articles that address Models of Care here in the US and around the globe. 

The first article (American Cancer Society) gives a rich overview of the years of research that went into developing recommendations for follow up care. The second article (Journal of Clinical Oncology) is a fascinating look at the way different countries approach survivorship. Both papers are well worth the read. Enjoy!
American Cancer Society Article on Models of Care
Journal of Clinical Oncology Article on Models of Care Across the Globe
The European Code of Cancer Practice -  June, 2021

We didn't even know there WAS such a thing! Here are the "Highlights" of this report, as stated in a recent article in Science Direct, June 2021." This paper is absolutely worth reading in its entirety. It will get you thinking....we guarantee it!


The Code is a citizen and patient-centred accessible statement of the core requirements for good clinical cancer practice.

The Code has 10 key overarching Rights of what a patient should expect from their healthcare system, supported by a plain language explanation.

The Code has been co-produced to bridge the gap between clinical guidelines, healthcare policies and patients’ everyday experience.

The Code is robustly evidence-based and supported by a comprehensive review of the medical literature and evidence.

The Code is strongly endorsed by Europe’s professional and patient cancer organisations and the European Commission."

Link to The European Code of Cancer Practice/ Document
How to Become "Digitally Empowered" In Managing Your Health Care

If there's one thing we've learned in the past year, it's that we need to be computer savvy. We've Zoomed, we've Face-timed, we've explored Netflix and Hulu, and we've even turned to the computer to meet with our doctors. It hasn't always been easy. In fact, it has been extremely frustrating and foreign for many survivors. 

While nothing can replace the benefits of meeting in person, the fact is that tele medicine may be here to stay.  

Here's the good news! The Patient Empowerment Network has created a free course, "Become Digitally Empowered". It includes subjects such as, "How to Use Telemedicine," " The Benefits of Your Patient Portal," and "Identifying Credible Resources and Websites." The course is available in English as well as Spanish. You can pick and choose which subjects to learn about without having to access the entire course.

This is a terrific tool. Thank you to The Patient Empowerment Network!
Becoming Digitally Empowered
During the pandemic we managed our time and lives in various ways. Some incorporated exercise, a few wrote books and most incorporated Tele Med visits.

Our Hodgkin's international Co-Founder, Board Co-Chair, Newsletter Contributor and Editor, Erin Cummings, MSW, LCSW was inspirational during the big "P".  She tirelessly worked to further HI's mission.  In addition to coordinating HI's educational and supportive Zoom events she also collaborated with Pfizer on their "Get it Done" campaign. "Get It Done is a call-to-action and our commitment to the cancer community during the unprecedented challenge of COVID-19 and beyond." 

Read Pfizer's article to learn more about Erin as well as Pfizer's campaign.  You will be inspired.
This is Living With Cancer
Copyright © 2021 Hodgkin's International, Inc., All rights reserved.

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