Long-Term Hodgkin's Survivors- Late Effects
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I’m also 40+ years and counting and also have some “Traction Bronchiectasis.” It was first discovered in 2021 but another scan last year showed it hasn’t progressed since then. I was dealing with a chronic cough and shortness of breath but last year discovered the late effects clinic at Vanderbilt and found a pulmonologist who understand what’s going on and treating me as if if it’s asthma, which seems to be working. I still have a bit of cough but shortness of breath is much better. How’s it going for you?
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Understood, thank you.
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Thanks so much! I haven’t logged into this site in 2 years and just started receiving email notifications. My hairdresser now tells me my hair is better now than before chemo! Came back in thick and is now super long like I was always used to!
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Sounds great. I actually had a similar experience, and I am gray haired and 71. Along with that gray hair I had a patch of white hair on the right side that made me look older. When it grew back after chemo, the white patch is gone. Must be hair cell regrowth. Now I look 71 rather than 90. 😁
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hi again. Last on here 2022 maybe. Not sure if u remember me. Hodgkins 1992 mantel radiation. No reoccurrence. Not too many docs are up on the long term effects of treatment. I hv radiation fibrosis, Bronchiectasis, heart issue. I hv done pretty well all these years except for shortness of breath. So was going to ask about the doc you see doctor n Nashville is it? I’m in Illinois. What does he for your late effect issues? Does he address all of your issues? I would definitely see him if he is more up on late effects than most doctors around here. I had a scare a year ago when I coughing up large amounts of blood out of the blue. They 1st said hematoma. Then a tear that clotted. Petrified it will happen again. Anyway hope you r doing well would love to hear from you as I think we hv been experiencing some of the same issues. Take care, Kathleen
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I will hv to check out Vanderbilt in Nashville
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The contact is Jillian Lapham at Vanderbilt Ingram Cancer Center in Belle Meade. She spends an hour with her patients and has gone through my experience system by system. Then she makes recommendations on specialists most familiar with your needs. Highly recommend.
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lol that is awesome!! See, something good came out of it all at least 😀
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Lots of familiar stories and experiences here! I head up a non-profit, Hodgkin's International, and I can tell you that ALL of these symptoms of late effects are experienced by long-term survivors, just to different degrees. Few of us have been unscathed by the treatments we received years, sometimes decades ago. My biggest concern is for survivors who have no idea about the risks that they face post-treatment. If you have a good survivorship clinic to go to, you are lucky. Most survivors don't have access to to that kind of care. Too many people are still being told, "You're fine. Your symptoms have nothing to do with your Hodgkin's history. That was too long ago." WRONG!
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yes! We moved to the Nashville area 3 years ago and I transferred to a Vanderbilt oncologist to finish my 5-year follow-up for stage 1 breast cancer (also a late effect). She directed me to the late effects clinic, and it is a God-send! I hadn’t exactly been told it my symptoms had nothing f to do with late effects but they weren’t ready to definitely agree that they were either. The first visit with the late effects but clinic verified that I am not crazy. The symptoms are real and they helped me develop a plan to manage them. I am grateful.
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I just signed up for your Hodgkins International newsletter. Would love to talk more with you about this outside of this forum.
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