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Hodgkin’s International

Supporting Long-Term survivors through connection, education, and advocacy

Hodgkin’s International is a non-profit (501.C3) organization dedicated to supporting long-term survivors of Hodgkin Lymphoma.

Our vision is simple. it is-

“To improve the quality of life for long-term Hodgkin Lymphoma survivors, where ever they may be.”

Sophia Kustas Smith, Board Member, Hodgkin’s International- speaking at ASCO Annual Meeting 2018

Sophia Kustas Smith, Board Member, Hodgkin’s International- speaking at ASCO Annual Meeting 2018

Heidi Lynn Blatt-Poakeart, celebrating 29 years of survival!

Heidi Lynn Blatt-Poakeart, celebrating 29 years of survival!

Late effects of earlier treatment for Hodgkin’s- the basics

Long-term survivors of Hodgkin Lymphoma may face serious health issues as a consequence of earlier treatment modalities, particularly older forms of radiation and chemotherapy. Here are some of the late effects we need to be concerned with:

Heart Disease

Lung Disease

Thyroid Disease

Secondary Cancers: Breast Cancer, Lung Cancer, Leukemia, Non-Hodgkin’s Lymphoma, Thyroid Cancer, Esophageal Cancer, Skin Cancer, and others

Radiation Fibrosis (RF): where normally healthy tissue becomes “sclerotic,” or hard and stiff

Pelvic Radiation Disease (PRD): for those survivors who received radiation therapy to their pelvic region

Debilitating Fatigue

Compromised Immune System: especially for those without a spleen

Infertility

Depression

These are just a few of the possible late effects that survivors might expect. Older forms of radiation and chemotherapy are now known to have toxic, sometimes life-threatening consequences. Hodgkin’s International is committed to providing education and support to survivors who may be dealing with these problems. For more detailed information, including clinical research articles, blogs from fellow survivors, suggested reading materials and links to other support services, please navigate to the “Resources” page above.

Let us know what we can do to help YOU. Email us at erincummings@hodgkinsinternational.org.

Survivor Stories

Karla Guererri

Karla Guererri

on finding a new way to eat, and getting a new lease on life-

by Karla Guererri

(Disclaimer: The following is a narrative of the experience of an individual person and is not in any way intended as an endorsement, recommendation, or testimonial for any product or program mentioned herein)

“Come On And Let Me Know- Should I Stay Or Should I Go?” The Clash

“This is exactly how I was feeling about life three years ago. More than thirty years after radiation treatment- huge amounts of crudely aimed cobalt radiation to the mantle field- some serious late effects had come at me full force, one after another. My aortic valve was already under surveillance by the cardiac team when the breast cancer diagnosis came in. Over the next three and a half years, I underwent a double mastectomy, open heart surgery for a new aortic valve, and finally, a thyroidectomy. I was trying to hold my health together and stay afloat financially at the same time, performing contract work which barely paid for the health insurance and associated costs. I was sinking deeper into a bottomless hole.

Surprisingly, it was the thyroidectomy that nearly did me in. That operation was supposed to make me feel better by getting rid of a malfunctioning gland that had been taken over by a multi-nodular goiter and compensating for the function with a high tech, laboratory made pharmaceutical product. Instead, it sucked the life right out of me. Sleep became my default setting. In the morning, it took every iota of energy I could find to open my eyes. I would lie in bed, motionless, willing my eyes to open. First one, then the other. Could it have been like this for Lazarus? I would look at the clock. Sometimes it took an hour or so to get out of bed and another hour to get dressed and ready for two or three hours of tutoring students for the local school district. I wondered how I would ever survive, and I didn’t really care. I reasoned that I could credit myself with some satisfying accomplishments and I had a good life. My daughter was grown and my house was paid for. Maybe I would just grow weaker until I drifted away to whatever lies beyond. It seemed that it wasn’t even going to hurt. Should I stay or should I go? The scale was tipping in favor of GO.

Right around that time, I began communicating with the people in a closed Facebook group for HL survivors with late effects. Knowing that they were there gave me enough encouragement to make a conscious decision to hang onto life, even though I did not know how that would happen. The first step was to find a new endocrinologist. I knew that my most significant, fundamental problem was that I no longer had the gland that runs all the systems of the body. The replacement hormone prescription I was getting was not adequate, regardless of the numbers generated by my blood tests. I wanted to try “ArmousRThyroid, a non-synthetic product made with desiccated porcine thyroid, but my doctor refused, saying that the quality could be inconsistent. Feeling that I didn’t have much to lose, I set out to find a doctor who would listen to me. Ultimately, a referral from a friend got me an appointment with an endocrinologist who not only allowed me to try a new medication, but she listened to all of my symptoms and worked with me to find solutions. I started feeling more energetic and clear in my mind thinking within a month, but I was still bogged down with some extra weight that had begun accumulating after my thyroidectomy, and it was interfering with my mission to find my best health.

Again, my internet associates came to the rescue. Come to find out, many long term HL survivors have found better health through particular eating plans. Some swear by plant-based nutrition and others prefer the “Specific Carbohydrate Diet” or the “Whole 30 Diet”, among others. What made the difference for me was the “Fast Metabolism Diet” by Haylie Pomroy. (https://hayliepomoroy.com/products/the-fast-metabolism-diet) I bought the book and read it with interest, taking notes and planning my new life. I thought I had a clean diet before, but this was something else.

First the forbidden list: coffee, tea, alcohol, wheat, corn, sugar, any and all dairy, and sadly, potatoes. It was complicated, requiring different foods in particular combinations at strict intervals on different days. After a week of trying to keep track of everything, I got an app for my phone to organize it all. And I began to feel like a living person again. I no longer gasped for breath, even when carrying things. I could think clearly and quickly without fighting through the brain fog. No more need for naps. And the added bonus was that I was searching the recess of my closet for my old clothes- two sizes smaller than I had been previously wearing.

Now, with almost 41 years of post HL life, I am very much alive. Those of us who have been irradiation and lived to tell about it know that we will never be “all better,” but every setback doesn’t have to be permanent, and health can always improve.

I wish all of my HL sisters and brothers the best possible health in the New Year!”

 

“Climbing off the Cliff face of Ill health and fatigue”

By Tess Nowell

Tess Nowell

Tess Nowell

As we start a new year, I have been reflecting on the journey I have made over the past few years, which has taken me from struggling a great deal with health-related issues to being and feeling much healthier than I had imagined would ever be possible again. This is in the hope that some of what I have learned may be an encouragement and a help to others who are struggling with health issues.  We are all different and will find our own paths, but I have learned so much from others and adapted it to suit me. So how did it happen that I scrambled and struggled off that cliff face of difficulty, where I felt as if I was clinging on with my finger nails day by day, to the path which still goes up and down but is much easier to travel? I would like to share a few of the many things and people that helped me.

In 2013-14 I was constantly tired, working three days a week as a General Practitioner and doing the basics at home, but unable to do much else in life. I was quite often ill with chest infections. I also had nerve pain that affected my right arm and hand. I worked when I could, and sometimes when it would have been better to rest. Even so, I had to take a lot of time off in the early summer of 2013, which caused stress with my work colleagues and upset me a lot. As I approached fifty, I was wondering how much longer I could keep going with my job. I had no idea that so much of what I was going through was linked with the Hodgkin Lymphoma I had been treated for with mantle field radiation when I was just eighteen. I just felt rather sad and frustrated about the limitations.  At times I wanted to wrap myself in self pity and just give up, but that is not and never has been my nature. I kept going.

The first thing that helped was meeting a very supportive Occupational Health doctor who advised that my hours be reduced. As a result, not only was my working week more manageable, but I felt listened to and believed that I was having so many different health problems. The next very helpful thing, although it was scary, was finding out about ‘Late Effects” and realizing that that was my main difficulty. Luckily for me, I very soon discovered the Facebook support group ”Hodgkins Lymphoma/Disease Survival and Late Effects, 1960- early 2000’s” and realized that I was not alone. There were other people out there who kept getting sick and having problems affecting different systems of the body, and that made me feel both understood and again validated: I was not making this stuff up.

Through this very challenging time, I was blessed with amazing support not only from the Facebook “tribe,” but also from family and a number of good friends. They have taken the journey with me. It's hard to describe how valuable this has been. I’m very lucky indeed that my husband, whom I have known since before I had HL, has stuck by me and has tried his best to understand at every stage. Again, all these people knew that the problems were genuine, and several of them came with me to various hospital appointments and helped me to deal with the rollercoaster of reviews and tests.

I had so many medical appointments that I started counting them. Over the first three years I was averaging almost two appointments per week. It was a massive burden as I went through it (like having another part time job!), but it was worth it to get thoroughly checked out, and to understand where the issues lay and how to deal with them. Quite suddenly it seemed that I came through that time and now I would say my numbers of appointments are not at all excessive, sort of normal indeed!

My own determination to understand what was happening definitely stood me in good stead, and I have worked hard at physically rehabilitating myself. After the chest infections in 2013 I could only walk short distances, but gradually I built that up. I had a lot of physiotherapy, and I started Pilates on the recommendation of my physiotherapist and keep classes up to this day. I started to swim and even to enjoy it. Now I can walk as far as I want even if I am breathless on hills. I can cycle around town, and I can swim a mile even if it’s rather slow. I can also lift my head from the floor when lying on my back!

The psychological component of all this was huge. I had some help from a psychologist at the Oxford Maggie’s Centre (for people with effects of cancer), and worked through the past, present and future aspects of the Late Effects diagnosis. I learned "Mindfulness based" meditation.  I talked through things with my spiritual director and with trusted friends, finding them all to be compassionate, caring listeners. I learned about "Acceptance and Commitment Therapy (ACT)", and worked on understanding my values and how I could be true to them and live a meaningful and satisfying life, even if I was limited in what I could do.

There were other health care professionals who particularly contributed to my journey as well. I looked at fatigue management with an Occupational Therapist. With her guidance, I worked out some simple changes and strategies at work (where I had foolishly thought I could not make changes), and which massively reduced the fatigue. I was, after over two years, able to pick up my full work load again. I had not thought this would feel possible. I just spread it over three days instead of the two that my colleagues do. Work became enjoyable again instead of an exercise in somehow getting through it, and I am now planning to work until I am sixty unless circumstances change. 

I also had a Cardiologist who fully understood the possible damage from radiation and arranged for appropriate tests, explained the results, and was able to reassure me that the breathlessness was NOT heart related. I saw an Orthopedic surgeon who listened properly to me.  He went beyond simply using nerve function tests, and, against the advice of Neurology, performed an operation to transpose and de-tension my right ulnar nerve, and with very good results. Thanks to his sound clinical judgment, I now have more strength and less pain in my dominant arm and hand, giving me the ability to do so much more. My "Late Effects" oncologist is a clear thinking and compassionate man. His organized reviews and planning have been very beneficial. My own General Practitioner has been a tower of strength. She has calmly allowed me to discuss multiple problems at one sitting, offered support, understanding and encouragement, and been really good at treading that tricky path of being physician to a fellow physician. She and the oncologist between them have pulled the various threads of my medical story together and helped me to manage and to make sense of it all.

There have of course been many other special people along the way. Each of them felt like a foot- or hand-hold for me on the cliff face, and it felt as though my friends and family, including the online community, were like ropes holding me safe as I traversed the cliff face.

Now, at the start of 2019, I find myself in so much better shape than I believed I ever would be again.

The main message I want to share is one of hope- that things can change. We can learn to care for ourselves and to have meaningful and fulfilled lives. Accepting my situation, being prepared to try doing things differently, and then living to honour my values has been transformational. We need to pay attention to our physical, psychological and spiritual needs. Getting knowledge and using it to ensure that we have the best health we can manage is important. Most of all, perhaps, we need community- love and support from others, whether that be through our online “tribe” or from family and friends closer by. I’m so thankful for all who have helped me and still help me in this way.

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