Long-Term Hodgkin's Survivors- Late Effects
I have been a member of this group for about 10 years. My user name should now be "50 years and counting!" I just want to reach out to my fellow long-term survivors to find out how you are doing. I'd like to know if you have had any of the "Late Effects" from the kind of radiation and chemotherapy that we received decades ago. Our organization, "Hodgkin's International," is working hard to make sure that we are educated about Late Effects and that we know what to be on the look-out for. It might be encouraging for you to know that, despite the health issues that many of us struggle with, many years after we were "cured," we are still hanging in there! Please stay in touch! It means a lot to know that we are not alone.
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I appreciate you making this post. For me I've now been in remission for 6 years, throughout the years I have had some side effects. During my treatment they had to give me steroids to help me eat since I had zero appetite. Because of this I developed AVN in my hip, which means part of my hip bone was deteriorating to a point that made it difficult to jump, run, and even walk. We tried multiple surgeries trying to postpone the need for a hip replacement but honestly none of the surgeries really helped. So now I'm in my mid-twenties with a new hip, with being so young still it does kind of take a toll mentally to think I have a fake hip already but I'm just grateful to still be here living life.
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I'm so glad you wrote! That's a LOT to go through. How old were you when you were diagnosed? What kind of treatment did you have? I think that the good news is that the treatment used for Hodgkin's now (and actually in the last 20 years) has gotten MUCH better in terms of long-term side effects. I do know that steroids can do a number on you. I had to take Prednisone as part of my chemo. What did you have? I'm so glad that you are doing well now, fake hip and all!! You have a GREAT attitude!! That will make a big difference, trust me! Please stay in touch and let me know how you're doing! Wishing you all the best, Erin
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I’m not there yet, but close!! Today was my 11th chemo out of 12 for Classic Hodgkins Stage 2. My last two scans were Deauville Scale 1 - Praise God. I have one more treatment left on the 29th and hopefully no radiation. I had 5 treatments of ABVD and the rest have been AVD due to a past history of smoking. They do give me 8mg dexamethasone the day of treatment and 3 days following. I have been blessed to have minimal side effects so far. I pray for complete remission for all of the people who have supported me through this since I started posting on here back in June (I think). Great to have support through others who have been through it and know!
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Glad things have been going so well for you, TN Girl
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hi 40 years and counting! I am 30 years and counting. So glad I found you! One of my late effects is the radiation induced pulmonary fibrosis. Sooo, apparently now the scarring is pulling on air way/ or blood vessels which is called “ Traction Bronchiectasis”. Have you had anything similar? How are your lungs? I received rad. In 1992. Would love to compare notes. Kathleen
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Wow! I’m praying I don’t have to have the radiation, but my next PET is not until February 24th. Gives me some anxiety, but I guess at that point we would discuss if there’s residual? Do you know what they mean when they say “residual”? I know that I still had tumors but all were no active and the doctor at Vanderbilt was very much against radiation. I guess with my history. So, far my lungs seem to have done well but I know the bleomycin and sure radiation have affect on your lungs. I finally did finish my last treatment on the 29th! Please keep in touch and I will be praying for you!
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Thank you, Max! I pray all is well for you and a happy and healthy new year!
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Hi all,had my radiotherapy six weeks ago, just waiting for results in February it was hard work lost so much weight, just starting to feel normal .Good luck to everyone out there WE ARE WARRIORS xxxxx
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Hope you get to feeling much better asap! Warriors, for sure! Prayers for you!
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TNgirl, Rosemaryanne, and others-
So great to know you are doing well! I think it's important to say that the radiation used decades ago, when I had it, is VERY different from the radiation that is used today. They have learned from us "old timers." They now know how to deliver a more precise, less damaging treatment. Same goes for chemotherapy. Chances are that those who are more recently diagnosed will NOT have to suffer from the same Late Effects that long-term survivors might. That said, it is always a good idea to keep track of your treatments, get copies of your medical records, know exactly what you were given, etc, so that you can create Survivorship Plan- a way to help anticipate risks that you could face in the future and get on top of them BEFORE they have an adverse effect.
We've put a lot of information about all this on our website, www.hodgkinsinternational.org, including a Survivorship Plan. We are always working to keep things updated. Our mission is to make sure Hodgkin's survivors are educated about Late Effects and know that we can support them and remind them that they are not alone. Please stay in touch everyone, and visit us on our Facebook site- @Hodgkinsurivors
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Thank you for the extra info! I am definitely on top of keeping up on my portal and keeping up with everything they do. Luckily, I know my oncologist through work as well so I have direct access and he knows my anxiety levels and is good about allowing me to reach out directly when I have any questions and not waiting on a visit or call from the nurse. I will have to let you all know about my next scan. Let me know how everyone is doing as well. It’s great to have these connections with others and it helps keep me going and educated. I hope and pray everyone will be healthy and any late side effects go away! 💜💚❤️
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It definitely helps to speak to people about this,I find it so inspirational reading about surviving stories, it gives all hope xx
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Random question. I finished my treatments December 29th. I never completely lost my hair on my head, but it is still shedding quite a bit a month post treatments. Does anyone know if this is normal or at what point it will stop shedding or if it does? I can only find information on regrowth. I lost the majority of my eyebrows, eyelashes, and arm hair. It is so odd how it affects everyone so differently. Thought I’d ask if anyone experienced anything like this or knows any info? Hope all is well with everyone!
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Just saw this comment. Thank you, GG! I hope you are doing well!! ❤️
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Thank you for this group. I see it hasn't been active in about three years, but I am learning to manage late effects and am glad to have found you all. I was diagnosed with HL in 1981 when I was 16. I'm now 60, so it's been 44 years for me. I was treated with full mantle chest radiation for four weeks, then abdominal radiation for four weeks. About three months later, the HL returned and I was treated with a 6-month regimen of MOPP chemo. I am very grateful to be in the very early group of HL survivors, but for the last ten years or so, I've begun to notice issues that I now understand are late effects. I was referred to the late effects clinic at Vanderbilt in Nashville, which has been a God-send to help me understand and manage the effects, and I think I am in a good place with the heart and lung issues. Right now, though, the most troubling late effect is radiation fibrosis that is causing chronic neck and back pain. I'm treating it with PT, massage, exercise, dry needling and trigger point injections, but these only provide temporary pain. I'm curious if any of you have also experienced this and what steps you may have taken to get longer-lasting relief. Thanks!
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Lovely that everyone is so positive, we are still here and carrying on with our lives, God bless us all ,my team Warriors 🙏 ❤
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I am 19 months in remission from Non-Hodgkins Lymphoma. I think most of the long-term side effects are from the chemotherapy, though I had some short-term side effects from radiation. You are right in that the chemo and radiation treatments now are different from decades ago. They now give effective premeds before chemo that help address for instance nausea and other immediate side effects. I never experienced the nausea. And they are now much more precise in regard to what level of radiation is needed and you are less likely to get a more powerful dose then needed. As for the chemo, it took over a year for my white blood cell counts to return to normal, however the only remaining long term side effect 19 months out is neuropathy in the feet. A low dose of gabapentin seems to be helping with that.
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That is completely normal with chemotherapy. The vast majority of us had hair loss. If it is at the shedding stage, most of us just go ahead and shave the scalp or have a barber or hairdresser give a buzz cut. The hair on the scalp usually goes first, then the eyebrows, eyelashes, and arm pit hair. Don't expect it to start growing back until after all the chemo sessions are done. It took at least a couple months for mine to grow back at that point.
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Tom, just curious what kind of chemo did you have? And when did you start to notice the neuropathy?
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