the five most important things to do as a long-term survivor of Hodgkin lymphoma

Or…..”A few humble suggestions from an old-timer…”

By Erin Geddis Cummings

(Disclaimer: the following piece represents the personal views of the author. It is not intended to express the opinion of the organization, Hodgkin’s International).
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  1. Know your history

    Most of us can remember almost every gruesome detail of our journey with Hodgkin’s- every surgical procedure, radiation or chemotherapy treatment, every infusion, needle prick, doctor’s visit, or hospital stay. As time goes on, however, even the most painful memories can be skewed by the mere struggle to get through the day-to-day business of surviving. It is also quite possible that your battle with Hodgkin’s may have been so long ago that it is just a blur at this point in your life.

    In either case, it is important to get as much information about your medical history as possible, and as early on in your journey as possible. Copies of medical records, office visits, and in particular treatment notes can be incredibly valuable, especially when dealing with “Late Effects.” For example, knowing EXACTLY what areas of your body received radiation, what kind, and how much could be a predictor of whether or not you are at risk for heart and lung issues, breast cancer, thyroid disease, infertility, and a host of other health problems.

    Try to get in the habit of requesting copies of treatment notes, procedures, in-patient stays, etc., every time you are seen by someone or are admitted to the hospital. Many hospitals and clinics offer this data electronically through an on-line patient portal. For those survivors who were treated years, even decades ago, this can be a bit tricky. (If you know what the term “microfiche” means, then you were probably treated a long, LONG time ago!) You may have to do some serious digging and/or jumping up and down to get the hospital that treated you to locate and release records. It is your right, however, to demand these records if available. While there may be a cost attached to making copies, it could make an enormous difference in your follow-up care to have that information.

2. Find a doctor or medical team that you trust

Easier said than done, that’s for sure. We’ve heard from far too many survivors who have gone from physician to physician, trying desperately to get someone to listen, to take their complaints seriously, to simply acknowledge that there IS such a thing as “Late Effects”. If you are lucky enough to be in the care of a doctor or medical team that is knowledgable about Late Effects and is pro-active about your health care, anticipating possible issues and acting on them BEFORE they become life threatening, all the better. If, however, you are wearing yourself out by getting the “run around” or worse, being ignored by your health care provider, it might be time to find someone else. Survivors need all the energy they can muster just to get through each day. Using that precious energy to fight to have someone believe you is exhausting and counterproductive.

Again, do your research. If you need to find a different provider, find out who has experience in cancer survivorship, not just oncology. If possible, try to speak with others who have had a similar diagnosis and who have found a place to go where they feel well cared for. Look into Survivorship Clinics in your area. If there are none, contact the closest Survivorship Clinic and ask who they might refer you to. Check the names of providers in the clinic and see if they might be affiliated with other hospitals or institutions that could help you.

3. Make a Survivorship Plan

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This is especially important for survivors who DON’T have access to a specialized Survivorship Clinic. A Survivorship Plan can go with you anywhere. Think of it as the scaffolding for your future as a survivor- an essential guideline for optimum health and a way to get ahead of the Late Effects you may be at risk for.

A Survivorship Plan will include your medical history, any surgeries and treatments, a record of vaccinations, prescriptions, etc, as well as a schedule for future tests and procedures, such as mammogram, colonoscopy, pulmonary function tests, echocardiogram, bone density test, etc. The number and frequency of those future tests will depend on your personal treatment history as well as other health issues you have dealt with in the past, such as diabetes, high/low blood pressure, cardiac issues, etc. Keep your Survivorship Plan up-to-date and make sure that all of your health care providers have a copy.

Hodgkin’s International is in the process of developing our own Survivorship Plan and will be making it available shortly. In the meantime, here are a few links to other Survivorship Plans.

https://www.cdc.gov/cancer/survivors/life-after-cancer/survivorship-care-plans.htm

https://oncolife.oncolink.org/form/oncolife_v11/

(For further information about Survivorship Plans, please go to the “Resources” Page on our website)

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4. Don’t go it alone

There’s just no reason to! You are NOT alone. There are thousands of other Hodgkin’s survivors out there, all over the world. Our “tribe” gets bigger every day. There are many, many people who share your history. You might be surprised to find that there are survivors who have had almost the EXACT same experience that you have. It’s uncanny when it happens, but it happens quite often. At the very least, there are others who will hear your story with a sympathetic, caring ear because they’ve “been there.”

Those of us who have been at this for a while can tell you that we have taught each other a great deal. We have shared ideas, solutions, and sometimes life-saving information. We have held each other up when needed and we have celebrated even the most minor victories, knowing that this can be a difficult, unpredictable road to travel.

There are a number of Facebook support groups for Hodgkin’s survivors. Here are a few:

“Hodgkins’s International”

'“Living Life after Hodgkin's Lymphoma”

“Hodgkins Lymphoma/Disease Survival & Late Effects 1960 - early 2000's”

“Late Side Effects Cancer Survivors”

“Long Term Hodgkin’s Survivors”

Most of these Facebook groups are “private” and require that you provide a brief medical history when you request admission into the group. This is done for the protection of all members, as the sharing of medical information can have consequences. Additionally, some of these sites are designed to focus on a particular stage of survivorship.

In addition to Facebook sites, there are other support groups available to survivors. The American Cancer Society, the Leukemia and Lymphoma Society, and the National Coalition of Cancer Survivorship all have links to support groups for Hodgkin’s survivors.

Hodgkin’s International has its own Facebook site which is open to all. If you are interested in further information about finding a support group or just speaking with another survivor, please don’t hesitate to contact us through this website. We are here to help!

5. Live your life NOW

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Start with today. You can’t change what happened yesterday, or twenty years ago for that matter, and you can’t really know for certain what tomorrow will bring. Today, this moment, is the “one true thing”.

Many of us are still in shock that we’ve made it this far. Most of us are (understandably) terrified of what happens next. We’ve seen too much, read too much, and know too much to remain blissfully naive. Our cancer diagnosis and the collateral damage that it has caused have changed us forever. We will never be the same.

Just for the record, you have every right to be angry about having had Hodgkin’s. You didn’t do anything wrong. You didn’t deserve to have cancer. No one does. But….getting stuck in a hole of resentment and remorse will chip away at your life as surely as any other Late Effect will. Find someone you can talk to who will listen without judgement- a good friend, a therapist, or another survivor and “vent” away. Find a path to acceptance, optimism, and hope.

Cancer survivors often feel that they don’t get to “choose.”- that too many decisions are out of their hands. Here’s one thing we CAN choose- we can make a choice to live each day to the fullest, in whatever capacity we can. For some that may mean getting as far as the end of the driveway. For others it may be finishing a full day of work at a job that we love. Whatever a new day brings, we CAN choose to be fully present and accounted for, living each day as if it was a precious gift. And no one knows more than we do that it IS a gift, and that we have earned it. Through sheer determination and courage, we have EARNED it.

Keep moving, keep laughing, keep loving. “Hang tough” as they say. You’re a Hodgkin’s survivor. You are as tough as they come.

Late Effects of Treatment for Hodgkin's Survivors: The "Basics"

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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’s 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’s 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’s 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?

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  1. 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

  2. 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.

  3. 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.

  4. 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’s 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/

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Hodgkin’s International will continue to update all of this information on a regular basis. We are also working to create a “Survivorship Plan” that is designed specifically for the needs of long- term Hodgkin’s survivors. It will be clear, concise, and applicable to survivors wherever they may be.

Let us know what we can do to help. And remember, you are NOT alone.

American Cancer Society, “Late and Long-term Side Effects of Treatment for Hodgkin Lymphoma”

https://www.cancer.org/cancer/hodgkin-lymphoma/after-treatment/lifestyle-changes.html

for hodgkin's survivors: TEN GREAT BOOKS ABOUT CANCER AND CANCER SURVIVORSHIP

Put down your romance novel and pick up a REALLY great book!

These books are not exactly what we would call "light reading," but they ARE books that we promise will inform, inspire, and maybe even change the way you think about survivorship. These are the stories of true warriors- those who have battled to survive and those who have fought to find a cure. 

They are all heroes "in our book."

 

 

1. "The Emperor of All Maladies: A Biography of Cancer" by Siddhartha Mukherjee

     The undisputed seminal work by Pulitzer Prize winning author Siddhartha Mukherjee, this is the "must read" bible for anyone diagnosed with cancer. It is a thoroughly engrossing book that will both fascinate and enlighten as it explores the history of cancer and the belief in its cure.

      

 

 

     

 

 

 

2. "The Death of Cancer: After Fifty Years On the Front Lines of Medicine, a Pioneering Oncologist Reveals Why the War on Cancer is Winnable and How We Can Get There" by Vincent T. DeVita, Jr., and Elizabeth DeVita-Raeburn

       Dr. Vincent T. DeVita Jr. is one of the most prominent researchers and physicians in Oncology and is known for developing the first successful chemotherapy treatment for Hodgkin's, "MOPP" chemotherapy.
        Co-written with his daughter, science writer Elizabeth DeVita-Raeburn, this book reads more like a good novel than anything else. It is an "inside look" at the world of Oncology, from the lab rooms at the National Cancer Institute, where competition in the field led to personal grudges as well as new cures, to the halls of Memorial Sloan-Kettering Cancer Center, where Dr. DeVita served as "Physician In Chief" and "Attending Physician" from 1989-1993.

        Dr. DeVita's tale is often heartbreaking as well as inspiring, and another "must read" for anyone who has ever heard the words, "You have Hodgkin Lymphoma."

 

 

 

  

 

 

Picture Your Life After Cancer
By The New York Times

3. "Picture Your Life After Cancer" by the New York Times, Karen Barrow, with a Forward by Tara Parker-Pope

       This is an award-winning photo documentary, with stunningly beautiful, compelling images and "real" stories to accompany them. This fantastic book is the response to the New York Times' question to its readers, "How is your life different after cancer?" It is an honest and compelling look at the "post cure" lives of cancer survivors- the good, the bad, and the ugly.

 

 

4. "Surviving Cancer: One Woman's Story and Her Inspiring Program for Anyone Facing a Cancer Diagnosis" by Margie Levine

      Diagnosed at age 43 with Mesothelioma and given just months to live, Margie Levine refused to give up. Instead, she created a "recipe" for survival that combined traditional medicine with her own holistic approach. Margie lived another 14 years, defying all odds and inspiring others with her unique healing regimen that included a specialized diet, meditation, and "seeking joy."

     Ms. Levine was trained as a social worker, an educator, and a therapist. Following the release of her book, "Surviving Cancer," she went on two national book tours and led numerous seminars for cancer patients. In a 1999 Boston Globe article, Margie was quoted to say, "I vowed that if I lived, I would dedicate the rest of my life to empowering other cancer patients who feel desperate to harness their coping skills." Her book does that, and more.

 

 

5. "Victor Not Victim: My Battle with Hodgkin's Lymphoma" by Dr. Mark Gugliotti, PT

          An inspirational story written by a medical practitioner who suddenly went from caretaker to patient when diagnosed with Hodgkin's. Dr. Gugliotti describes his journey with a good dollop of humor and the unique perspective of someone who knows the world of medicine "from the inside out."

 

 

 

 

 

 

 

 

 

 

6. "Keep Climbing: How I Beat Cancer and Reached the Top of the World" by Sean Swarner

           Guess you could say Sean Swarner is no slouch!  He is the first cancer survivor to successfully climb Mount Everest, and with only one fully functioning lung. Diagnosed with Hodgkin's at age 13, he was also later diagnosed with Askin's Sarcoma, and is believed to be the only person in the world to be diagnosed with both cancers.  Despite a frighteningly dismal prognosis, Sean's journey into survivor-hood has been filled with some of the most incredibly courageous feats imaginable. No surprise that Sean is now a highly coveted inspirational speaker around the world. His story is more than impressive- it is miraculous.

 

 

 

 

 

 

 

 

7. "Laughing in the Storm: Conquering Cancer With a Smile on Your Face" by Jen Cerminara

     At age 28, Jen Cerminara was diagnosed with Hodgkin Lymphoma. In telling her own story of the personal hell that is cancer, Jen shares a wonderfully unconventional. irreverent perspective on survivorship, filled with persistence, positive thinking, and the ability to laugh at oneself.  This is a book that is sure to help you see the "lighter" side of life after diagnosis.  

 

 

 

 

 

 

8. "There's No Place Like Hope: A Guide to Beating Cancer in Mind-Sized Bites" by Vickie Girard

      Vickie Girard was diagnosed with terminal Stage IV breast cancer and told she had six months to live. She decided to fight-  and not only the cancer, but the insurance company who refused to cover a bone marrow transplant, claiming it was "too experimental."

      Ms. Girard survived for another 16 years and devoted herself as a champion for patients' rights. She was a representative for The Cancer Treatment Centers of America and was a spokesperson for the American Cancer Society, taking her message of empowering cancer patients all the way to the United States Senate. 

      Vickie's story is one of determination, fearlessness, and purpose. 

      

 

9. "What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope" edited by Julie K. Silver, MD

      This is an award-winning book edited by breast cancer survivor Julie K. Silver. It offers practical advice from hundreds of cancer survivors, all over the world, who contribute their own hard-earned solutions to surviving a diagnosis of cancer, and includes the voices of noted celebrities like Scott Hamilton, Carly Simon, and Lance Armstrong.

      

 

 

 

 

 

 

10. "A Series of Catastrophes and Miracles: A True Story of Love, Science, and Cancer" by Mary Elizabeth Williams

Writer and commentator Mary Elizabeth Williams was diagnosed with malignant melanoma in 2010. At that time, she was recently separated, in her early 40's, and a mother to two young girls. A year after surgery to excise the melanoma, Mary thought she was "in the clear," only to find out that the cancer had not only returned, but had spread to her lungs and soft tissue. As Mary herself said in a 2016 CBS interview, her grim prognosis propelled her into "that scary place, planning for my family but not being there. But I also had to do the laundry and put dinner on the table."

This is yet another courageous story of survival, With the help of immunotherapy, Mary has not only survived but thrived, as a staff writer for the online magazine "Salon" and for several other publications, including "The New York Times" and "The Nation". More than sharing her own journey, Mary tells the story of her good friend who was diagnosed with another cancer at the same time, and, sadly, did not survive. But the bond that they shared will be recognizable to all and is a painful reminder that cancer's path is indiscriminate, insidious, and utterly unfair. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

         

 

 

FIVE best "perks" of being a long-term Hodgkin's survivor

                                 By Erin geddis cummings

Despite all the late effects, the constant struggles, the pure weariness of having had cancer, there are a few fringe benefits that come with being a long-term Hodgkin's survivor. Here are a few, in no particular order...

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1.  You are a mystery...

 

   Unlike some other cancers, you may never have an answer as to why you had Hodgkin Lymphoma. So.... make one up! Here's your chance to be enigmatic, mystifying, unconventional! When someone asks you, you can find a truly ingenious response, or choose from one of the following:

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      "An alien from outer space took over my body."

      "I got it from petting my Iguana."

      "I ate too many strawberry 'Twizzlers' when I was a kid."

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      "A wicked witch cast a spell on me, made me walk through a purple cloud, my hair turned green, and I ended up with Hodgkin's. Go figure."

 

2. Yes, you do, in fact, glow in the dark... 

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(Thank you to Paul Edelman for the reminder....)

     This perk comes in VERY handy. You are like a human night light. You can find your way to the bathroom without incident. You can impress your friends when looking for your car in a dark parking lot late at night. "Come on guys! Over here! Just follow me!"

When you go to a rock concert, you don't need your cell phone for the encore. You just stand up and sway back and forth.

 

 

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3. You lack underarm hair (if you're a woman)

     Just think of the amount of time you've been saving by not having to shave! Never mind the cost of razors, shaving cream or waxing at the salon! With all the money you've saved on personal hygiene, you are able to buy a second home, or a "mid-life-crisis" car, like a snappy little Mercedes convertible!

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4. You have a gorgeous, slender, elongated neck

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     No turkey "wattle" in YOUR future!  

Not only will you avoid having a fleshy, sagging throat as you get older, but you will be stretched so tight from your radiation treatment that you'll barely have wrinkles!  You don't have to bother covering up with multiple diamond chokers or a silk ascot-  you can just sail along like the swan that you are! If you are really lucky, your giraffe-like neck will give you a height advantage as well. While everyone else is beginning to stoop with old age, you can see for miles, head and shoulders above everyone else. It's like having a built-in telescope!

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       AND, as a long and slender neck is immediately recognizable in the world of glamour and fame, you are frequently mistaken for Audrey Hepburn if you are a woman, Matthew McConaughey if you're a man. Not too shabby.

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5. You are a member of a rather heroic "club"-

     Like those brave few who have climbed Mount Everest without an oxygen tank, you have surmounted all odds. You have persevered, even when every inch of you wanted to quit. You can forget all the times you weren't chosen for the baseball team, or the cheerleading squad, or that snooty country club. That's small stuff now. After decades of survivorship, you have achieved a "Guinness Book of World Records"-like status. 

    Cocktail parties in YOUR club are fascinating. You mix and mingle with fellow Hodgkin's survivors who share "zipper scars," radiation tattoos, and replacement parts like artificial valves, stents, and breast implants. You trade hard luck stories that make more conventional conversations seem like lullabies. While your "normal" friends are toasting each other's good fortune, you are thriving in the company of your fellow warriors, happy just to be alive.

"Your son is going to Yale? You're going on safari? Marvelous!" gets replaced with,

"Your pulmonary function tests are above 55%? You've only been to the doctor's office sixty-four times this month? Me too!"

 

Yes, my fellow Hodgkin's survivors, it's not all doom and gloom! There are things to celebrate, silver linings in just about everything. There are plenty of things we can't change, but there are still a few things that we can simply "reframe." Just hang on to your sense of humor, keep your head up (even if you need scaffolding to do it), and always remember that your "club," your "tribe," has your back. And your skinny neck. 

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Why we need Survivorship Clinics- a word from a survivor/physician who knows first hand

Marjorie Rosenthal is an associate professor of pediatrics at the Yale University School of Medicine in New Haven, Ct. She is also a cancer survivor, as well as a contributing writer to WBUR and CNN. This article is from 2016 and describes the author's personal experience as a "patient" in a survivorship clinic. 

Hodgkin's International is working hard to identify survivorship clinics around the world. We hope to begin to list them on our website in the very near future.

In the meantime, if any of you have specific thoughts, recommendations, or reactions to this post, please do not hesitate to contact us.

To read Marjorie's story, click on the link below-

http://www.wbur.org/commonhealth/2016/06/08/cancer-survivorship-clinics

 

THE DANGERS OF NOT HAVING A SPLEEN....

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Summer is just around the corner (FINALLY!), and we can all look forward to spending more time outside-  on the beach, going for a walk or a hike, or just lounging around in our own back yard. As wonderful as that may sound, what you may NOT know is that being outside poses a potential risk for Hodgkin's survivors who don't have a spleen, or who have had an irradiated spleen-  I'm talking about the dreaded tick. And no, not the kind of tick that causes Lyme disease, but the deer ticks that transmits "Babesia," or "piroplasm," which is a parasite similar to malaria and infects the red blood cell system. As with other diseases that cause infection and force our already compromised bodies to put up a good fight, Hodgkin's survivors who are lacking a functioning spleen may not have the ability to rise to the occasion.

It is imperative that Hodgkin's survivors who don't have spleens take immediate action when faced with infections...

particularly those infections caused by "encapsulated bacteria," or bacteria that have an extra coat of protection, making it much more difficult for our immune system to fight them off. People who are lacking a spleen are essentially defenseless when it comes to battling infections caused by encapsulated bacterias. In addition to Babesia, other examples include "Streptococcus pneumoniae," " Haemophilus influenzae", and "Neisseria meningitidis".

Symptoms of Babesiosis include high fever and chills, as well as fatigue, shortness of breath, headache, chest pain, sweats, and muscle ache.  Streptococcus pneumoniae and Haemophilus influenza are both common causes of upper respiratory infections. Their symptoms are actually similar to Babesiosis and may also include a cough and altered mental status/confusion. Neisseria meningititis  symptoms include all of the above as well as a stiff neck, nausea and vomiting.

In all of these cases, people who are lacking splenetic function are at great risk in that infection from encapsulated bacteria can lead to sepsis, which can be fatal. 

There is no way to be sure that a high fever is a result of these kinds of infections without a blood culture, and, unfortunately, the results of blood cultures can take anywhere from a few hours to a few days. For Hodgkin's survivors without spleens, time is of the essence. 

It is widely recommend that asplenic patients seek immediate attention if they have any of the symptoms described above. DO NOT WAIT. Tell your health care provider that you don't have a spleen. Give them a complete list of your symptoms. Insist on having a blood culture performed AND that you receive a strong antibiotic while waiting for results.

GET VACCINATED! Vaccines can dramatically reduce your chance of infection. It is recommended that survivors without splenetic function receive the pneumococcal, meningococcal, and HIB (Hameophilus influenzae type B) vaccines. It is also commonly recommended that we receive an annual flu shot as well. Talk to your physician about a vaccine schedule- which ones, how often, etc.

As for Babesia, prevention is similar to the recommendations for Lyme disease-  avoid wooded, brushy areas as well as overgrown grasses, dunes, etc. Walk on well-worn paths. Cover exposed skin with long pants, socks, and a long sleeved shirt. Do a "tick check" when you are back indoors-  a head to toe thorough look- and on your pets too!

Lastly, remember that not all health care providers are used to seeing people without spleens. Removing the spleen during the staging process for Hodgkin's is no longer routine. Like everything else, you may have to be proactive about this piece of your medical history. You can wear a medical ID bracelet that states that you are asplenic. You can also carry a medical ID card that lists your previous surgeries, treatment, prescriptions, etc. And, you can do both- just to be on the safe side.

Not having a spleen may be the most significant consequence of earlier diagnosis and treatment for Hodgkin's, and yet it is often overlooked, as it is the "absence" of something as opposed to something "new" - like cardiac disease or secondary cancers. It is relatively silent. But it could be relatively deadly. 

 

 

 

 

 

 

 

Hodgkin's International Launches Fundraising Campaign- December 14, 2017

Hodgkin's International is proud to announce our first fundraising effort. We have teamed with "I Fund Women" to launch a crowdsourcing campaign, with the goal of raising $10,000 by January 26, 2018.

With funds, our organization can hire staff to assist in our efforts to reach out to long-term survivors of Hodgkin Lymphoma all around the world. We can offer printed materials, participate in networking activities, advocate for the needs of survivors, and assist in research projects designed to better understand those who suffer from the long-term effects of treatment.

We are very grateful to "I Fund Women" for championing our cause. A special "shout out" to Dave Cobb, husband of Dolly Griffin, who has been our guardian angel from day one, and to Kelsey Henry, who has given us countless hours of her time (and her patience!) in getting our organization off the ground. 

Please support us in any way you can. Thanks SO much everyone! 

Dave Cobb, Kelsey Henry, Dolly Griffin, Erin Cummings, Rich Cummings

Dave Cobb, Kelsey Henry, Dolly Griffin, Erin Cummings, Rich Cummings

"Late Sequaelae in Hodgkin Lymphoma Survivors" by FE Leeuwen and AK Ng- as printed in "Hematological Oncology," June 2017

"Late Sequaelae in Hodgkin Lymphoma Survivors" by FE Leeuwen and AK Ng- as printed in "Hematological Oncology," June 2017

Excellent article on late effects, printed in "Hematological Oncology" in June, 2017. Written by Flora E VanLeeuwen and Andrea K. Ng. The authors present a frank discussion of risk factors as well as recommendations for follow up.