20 Plus years after radiation

Alan61
Alan61 Member Posts: 3
edited March 2014 in Long-Term Effects of Treatment #1
In 1978 I was told I had Stage 1A Hodgkin's. I was told I would have to go thru radiation treatments using Colbalt 60. I was given over 7432 rads of radiation and now some 27 years later I'm still having side effects. I was wondering if they are any other "LONG TERM" Survivors of radiation?
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Comments

  • genenie
    genenie Member Posts: 3
    #2
    Yup. I also had radiation (and chemo) as a toddler over 25 years ago to treat a neuroblastoma. I continue to face the side-effects. Its like the gift that keeps on giving:) I am thankfully healthy, with no recurrance of the cancer. However, I too am interested to know if there are others out there who have found ways to address the long-lasting effects. My doctors haven't been able to be that helpful.
  • lindazame
    lindazame Member Posts: 46
    #3
    Hi Alan,
    Actually there are a lot of us long term survivors out here. I was treated for HD IIIE in 1971-72 and I'm still around to tell the story. I have some members of my long term suvivors group who were treated with high dose radiation as toddlers in the 1950's. Surviving this long does take some special help especially from physicians who know about late effects. If you'd like to meet and talke with other long term survivors visit www.acor.org click on mailing lists and then the LTsurvivors group to meet over 400 survivors.
    Linda Zame
  • dickl
    dickl Member Posts: 39
    #4
    my 17 year old son had a bone marrow transplant at age 8. No radiation but massive chemo that left a host of neurological issues. Unfotunately your other reply guy is right, docs are basically no help. There are long term survivors programs at most major cancer centers. We've found them to not be much but an in title.Long term survivor care is the latest talk from the cancer medical professionals.There is an excellent book written by Wende Hobbe at the survivors clinic at the Philadelphia Children's Hospital. I suggest all cancer patients and survivors read it. Life is different after diagnosis and you never can go back to before.

    web page name,
    dickl
  • mc2001
    mc2001 Member Posts: 343
    #5
    Hi gang!
    I can certainly say I have long term side effects. I was diagnosed 10 years ago with acute lymphoblastic leukemia. Had chemo, rads, surgery, etc. At first I thought it was all in my head... maybe even becoming a hypochondriac. However, my energy is still very low, short term memory is poor. I would like to know what some of you are experiencing late term. Take care. God bless.
    -Michael
  • blueyz53
    blueyz53 Member Posts: 7
    #6
    I had 25 radiation treatments following 2 surgeries for cervical cancer in '84. I have experienced back/leg/feet problems for the past few years. Tests show arthritis, degenerative disc disease. I'm wondering how much of this is related to the radiation. I've tried getting info on the long term effects of radiation, not much out there. I check this site once a year or so, was glad to see your message. I think my problems are related directly to the radiation. I'm grateful I survived these past 20 years, but would like to have a doctor verify the connection, none have so far.
  • aussiewife
    aussiewife Member Posts: 1
    #7
    hi alan61
    I suffer from the long term effects of radiation too. I had cancer of the larynx in 1995, was over radiated and 8 months later ended up with a trach. Since then I managed well until 2005 when I began having trouble with my voice and swallowing.
    Now I have to have a dilitation surgery every 4-5 months to open my esophagus so i can get food downn and the power of my voice has diminished. My doc calls it the 10 year radiation effect. It makes life very difficult although I manage to live a full life anyway. Thanks
  • Unknown
    Unknown
    #8
    This comment has been removed by the Moderator
  • birdgray
    birdgray Member Posts: 8 Member
    #9
    aussiewife said:

    hi alan61
    I suffer from the long term effects of radiation too. I had cancer of the larynx in 1995, was over radiated and 8 months later ended up with a trach. Since then I managed well until 2005 when I began having trouble with my voice and swallowing.
    Now I have to have a dilitation surgery every 4-5 months to open my esophagus so i can get food downn and the power of my voice has diminished. My doc calls it the 10 year radiation effect. It makes life very difficult although I manage to live a full life anyway. Thanks

    late effects of radiation
    http://www.leiomyosarcoma.info/raddiscuss.htm

    I dont know how I found this web site but it has everything about the late effects
  • browndog1
    browndog1 Member Posts: 2
    #10
    birdgray said:

    late effects of radiation
    http://www.leiomyosarcoma.info/raddiscuss.htm

    I dont know how I found this web site but it has everything about the late effects

    effects
    Had radiation for all in 1979. Feel pretty good except getting fat and lazy. Curious about what effects people have.
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    #11
    browndog1 said:

    effects
    Had radiation for all in 1979. Feel pretty good except getting fat and lazy. Curious about what effects people have.

    Late Effects
    Browndog,

    I don't want to go into details, mainly because it wouldn't be fair to you or anyone without having been looked at officially. What I can tell you, is that since your treatment days, doctors have now found how important follow-ups are, and newer preventative protocols to follow.

    There are two resources that I would like to give you. The first is a book by Nancy Keene, Childhood Cancer Survivors: A Practical Guide to Your Future (Childhood Cancer Guides). Yes, while it mentions childhood, I can tell you that it also applies to adults. Inside it mentions so many cancers and treatments, and what doctors now know to look for.

    The other, is a web site http://www.childrensoncologygroup.org/. There are so many resources through this site, including where to find doctors that specialize in following up late effects from cancer treatments. Wait, here is one more, the Cancer Survivor's Project at http://www.cancersurvivorsproject.org/index.html.

    I was rudely introduced last year to late effects, honestly after 19 good "healthy" (somewhat overweight and lazy). But then again, there had been no follow ups for me either in over a decade to catch anything earlier.

    My case is not unusual in the survivor world, just to the average doctors.

    Paul E (Hodgkoid2003)
  • RA
    RA Member Posts: 1
    #12
    Post radiation
    Hi, I'm 25 years post radiation for Hodgkins disease stage 11. I have been having some problems with upper abdominal pain and am concerned about a secondary cancer. I will have a follow up apt. next week and will post again. Hope you still checking the site.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #13
    RA said:

    Post radiation
    Hi, I'm 25 years post radiation for Hodgkins disease stage 11. I have been having some problems with upper abdominal pain and am concerned about a secondary cancer. I will have a follow up apt. next week and will post again. Hope you still checking the site.

    Hopefully
    Hopefully, some of these folks will respond, RA, but this particular board is not so active, in my personal experience.

    I am sorry to hear of your long existing pain, and am also sorry if you felt that the chatroom was not to your liking earlier this evening.

    With respect to the chatroom (and I do not visit as much as I used to) my own history with it includes being turned off by it when I first entered. I wanted them to be talking about cancer rather than food and whatever else they had going on. It took me awhile to realize that there is more to life than cancer, and that, in fact, talking to other survivors (and caregivers) about anything BUT cancer was actually therapeutic.

    Regarding your radiation and subsequent issues, it is fairly clear to me that the therapy (either chemo or rad) improves virtually daily and I cannot imagine what it must have been like 25 years ago: I am even now writing a blog entry that describes how, four years out of my head/neck cancer treatments, I feel basically out-dated in some respects.

    That is a good thing, that so much is changing, improving, and so dramatically. Not so good for you, perhaps, timing-wise, but a good thing nonetheless.

    I am hopeful that your appointment proves to have nothing to do with cancer, RA. My thoughts are with you.

    Take care,

    Joe
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    #14
    RA said:

    Post radiation
    Hi, I'm 25 years post radiation for Hodgkins disease stage 11. I have been having some problems with upper abdominal pain and am concerned about a secondary cancer. I will have a follow up apt. next week and will post again. Hope you still checking the site.

    Post Radiation
    RA,

    First off, congrats on making 25 years!

    I still lurk around here, so please let us know how you make out with your appointment.

    Paul E. (Hodgkoid2003)
  • macswife
    macswife Member Posts: 4
    #15
    hodgkoid2003 said:

    Post Radiation
    RA,

    First off, congrats on making 25 years!

    I still lurk around here, so please let us know how you make out with your appointment.

    Paul E. (Hodgkoid2003)

    late effects
    My husband's first cancer was 23 years ago--laryngeal. He lost half his voice box, his entire epiglottis and had throat reconstructed with chest muscles. He did pretty well until six years ago, despite three additional primary cancer diagnoses. Then the late effects started to bother him. While choking (no epiglottis) has always been a bit of an issue, it has become much worse. The doctors have called it late effects and say that the radiation is causing further changes to the tissue and it is not working as it should. He has great difficulty eating as much food goes down his windpipe. They want to give him a feeding tube but he says he would rather choke to death.

    He was also over-radiated several years ago for an aggressive prostate cancer. That caused bone breakage in his sacrum which required zometa. Pain is reduced considerably, but the scar tissue caused by a carcinoid tumor of the ileum surgery and the radiation has resulted in several abdominal surgeries which of course then cause more scar tissue. We are aware that currently increasing pain is caused by a bowel which is beginning to twist with more surgery in the future. His lungs have been so damaged that he is unlikely to survive another surgery. But of course they thought so the last time, also. He is a survivor.

    The only good news on our horizon is that we discovered that early work he did for the Department of Energy allowed him to enroll in a program which has provided some benefits for him. If you know anyone who worked around nuclear stuff in the 50's and 60's, have them contact the Department of Labor or Department of Energy--if they've survived this long. It's not widely advertised, but with four primaries, the oncologist commented one time that he had to have been exposed to something. I never even knew about this early work, but some research turned up the program I'm referring to.

    Good luck to all of you.
  • bluerose
    bluerose Member Posts: 1,104
    #16
    There are many of us
    I am a 22 year survivor of non hodgkins lymphoma and have many late effects from treatments but it has only been in the last 8 years I would say that I have had doctors actually validate that. I do believe that they probably didn't know what might lie ahead in late effects of some of the chemo drugs and radiation and they probably didnt realize how long we would in fact survivr as treatments became more effective.

    I had a bone marrow transplant on recurrance and on diagnosis had CHOP and localized radiation. During transplant I had total body rads too.

    Now I must say here that you have to remember that everyone is different in how they hanle treatments as they are all different people so let me say that first off. Not all experience the same as other survivors but there are lots who do, lots of similarities at times.

    My late effects include: heart damage due to adriamycin (chemo drug) - now have a pacemaker that had to be implanted on an emergency basis due to extreme arythmia from the damage, osteo arthritis (from the rads they feel), fibromyalgia (also no doubt related), chemo brain (cognitive issues and memory issues) - they now know that some chemo drugs do cross the blood/brain barrier where before they didn't feel they did. Then there is radiatioin damage to the brain that they feel may well cause the cognitive problems down the road (they don't call it 'damage to the brain' they say 'weakens the brain' rather - the rads that is. I also have periferal neuropathy from treatments they feel and am being tested further for more of that. I have elements of PTSD from trauma scenes during treatment, anxiety attacks (they seem to be getting worse), and of course the ever popular fatigue that keeps me down daily. I have dry eye syndrome that is constant and embarassing - tears falling out of my eyes most days and nothing other than more surgery for correction. I am on 12 different meds that will continue from here on in. 3 of those are vitamins that I have to take for linked issues.

    I am divorced from my husband and cancer was a big issue in the decision indeed, many unfortunately find that this happens to them as well. For the lucky ones this journey with cancer makes their relationships stronger - they are the lucky ones to be sure.

    I still see doctors and have tests on a continous basis for all of the above and many times I feel incredibly overwhelmed for all of these ongoing issues. Many of my continued testing is very invasive and I have become a total wuss, maxed out from all the interventions I have had through cancer. My calendar is a mess with appointments, even yet, and re scheduling often as health issues get in the way and I am unable to get out.

    The fun indeed never ends. lol

    On the flip side I was able to be there to raise my two children who were very small when I was diagnosed, one just got engaged yesterday and is finishing University and my son is now in the field of work he studied so hard to become a part of.

    Yup, there is a high price to pay for the cure for many of us, and yes there are many long term survivors out there - many have the same validating stories - we are not crazy, these long term effects exist and the specialists are now acknowledging that fact.
    Sites such s this are very important in order to bring us all together.

    Blessings, Bluerose
  • leolove
    leolove Member Posts: 3
    #17
    Late effects of radiation
    I had Medullary Thyroid Cancer 27 years ago at the age of 23. This is a very rare cancer. I had 3 operations and 6 weeks of broad spectrum radiation since I had lympth node involvement.I received my treatment at MD Anderson and they had only 40 cases when I became a patient. They just didn't know a lot about it then. I developed leukepenia (low white blood count especially my C4s or T cells) a few days after beginning treatment and still have it today. I was a teacher but was forced to retire several years ago due to chronic illness. I have sinus problems (lots of infections and dryness), problems with vocal cords, GERD, heat sensitivity, problems swallowing, numbness in my neck, pain and weakness in my upper body, dental problems and memory problems.I now suffer from severe migraines and must take depakote to function.My neck is extremely thin and scarred due to bilateral neck dissection. Sorry to run on this way but I just found this site and I'm so happy to finally have people who understand. It's hard for people to grasp the fact that the side effects go on forever. It's not that I'm not thankful to be cured. I thank God every day.I wouldn't be here today without the treatment.It's just something I have to deal with. Does anyone know of a support group in the Houston area for late effects of radiation?
  • 2manyrads
    2manyrads Member Posts: 16 Member
    #18
    blueyz53 said:

    I had 25 radiation treatments following 2 surgeries for cervical cancer in '84. I have experienced back/leg/feet problems for the past few years. Tests show arthritis, degenerative disc disease. I'm wondering how much of this is related to the radiation. I've tried getting info on the long term effects of radiation, not much out there. I check this site once a year or so, was glad to see your message. I think my problems are related directly to the radiation. I'm grateful I survived these past 20 years, but would like to have a doctor verify the connection, none have so far.

    Radiated as an Infant

    As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. This treatment was commonly used in major hospitals and even pediatricians’ offices across the country. Thousands of infants and children were given radiation treatments that would later result in many developing both cancer and radiation-induced heart disease. My mother—as no doubt many other mothers—held me on her lap, to make it easier for the radiologist to administer the x-rays. The cancer she developed from her own exposure to the radiation that passed through my 5 month old body to hers, was one of the causes of her death many years later. After surviving leukemia at age four, I spent the next thirty years in and out of hospitals for illnesses that seemed to have no identifiable cause. When my mother was diagnosed with a cancer the oncologist told her could only have come from exposure to large doses of radiation, she explained she had never been in that situation even as an emergency room nurse at Bellevue Hospital in Manhattan. After further questioning from the doctor she remembered our experience with x-ray treatments. The doctor said he’d studied in med school that erroneous diagnosis and x-ray treatment. He said, I assume your son died a long time ago since he received the bulk of the ionizing radiation. No, she told him. My son has had a lifetime of serious illnesses, including being placed at one time under hospice care for over four years. The doctor told her to call me and for me to get to an endocrinologist immediately because I most certainly had thyroid cancer. I did as told and the endocrinologist said he could see from across the room that I had an abnormal thyroid. It turned out to be Stage 3 metastasized thyroid cancer. After a thyroidectomy and radiation treatments (ironically to treat what had caused the disease in the first place) I slowly recovered. I take synthroid that is carefully monitored for correct dosage and the devastating symptoms caused by my thyroid cancer have been controlled. 

  • Janabeth
    Janabeth Member Posts: 5
    #19
    leolove said:

    Late effects of radiation
    I had Medullary Thyroid Cancer 27 years ago at the age of 23. This is a very rare cancer. I had 3 operations and 6 weeks of broad spectrum radiation since I had lympth node involvement.I received my treatment at MD Anderson and they had only 40 cases when I became a patient. They just didn't know a lot about it then. I developed leukepenia (low white blood count especially my C4s or T cells) a few days after beginning treatment and still have it today. I was a teacher but was forced to retire several years ago due to chronic illness. I have sinus problems (lots of infections and dryness), problems with vocal cords, GERD, heat sensitivity, problems swallowing, numbness in my neck, pain and weakness in my upper body, dental problems and memory problems.I now suffer from severe migraines and must take depakote to function.My neck is extremely thin and scarred due to bilateral neck dissection. Sorry to run on this way but I just found this site and I'm so happy to finally have people who understand. It's hard for people to grasp the fact that the side effects go on forever. It's not that I'm not thankful to be cured. I thank God every day.I wouldn't be here today without the treatment.It's just something I have to deal with. Does anyone know of a support group in the Houston area for late effects of radiation?

    radiation support group
    I think MD Anderson has support groups, and they have a followup clinic. PLEASE CHECK THEM OUT.
    Why don't you send your story to ASTRO.org and see if they can direct you to a support group, too?

    It's amazing to me how ASTRO's brochures talk about how well the body's healthy cells repair themselves after radiation! I wish people like you would start contacting ASTRO, ASCO, and the ACS. I read what they write about my cancer and send them regular things to correct.

    American Therapeutic Radiation Organization
    Amercian Society for Clinical Oncology
    American Cancer Society
  • brian50
    brian50 Member Posts: 27 Member
    #20
    Janabeth said:

    radiation support group
    I think MD Anderson has support groups, and they have a followup clinic. PLEASE CHECK THEM OUT.
    Why don't you send your story to ASTRO.org and see if they can direct you to a support group, too?

    It's amazing to me how ASTRO's brochures talk about how well the body's healthy cells repair themselves after radiation! I wish people like you would start contacting ASTRO, ASCO, and the ACS. I read what they write about my cancer and send them regular things to correct.

    American Therapeutic Radiation Organization
    Amercian Society for Clinical Oncology
    American Cancer Society

    25 Years + Bone Marrow Transplant Surviviors
    Hi,

    Any members have a transplant at least 25 years ago,if so i'd like to hear how you are and how life has been in general

    Kind Regards

    Brian.
  • bluerose
    bluerose Member Posts: 1,104
    #21
    brian50 said:

    25 Years + Bone Marrow Transplant Surviviors
    Hi,

    Any members have a transplant at least 25 years ago,if so i'd like to hear how you are and how life has been in general

    Kind Regards

    Brian.

    22 post transplant here
    I had initial diagnosis for NHL 23 years ago and treated with CHOP and localized rads to the abdomen and pelvis then about a year and a half after recurred and had an autologus bone marrow transplant and total body rads.

    Had battles with docs over the years as they wouldn't take my sypmtoms seriously but today it's a whole other ballgame. Apparently there are alot of us saying the same things to them,and have been for a long time, so today alot of the side effects are recognized. Still aways to go but better than after my transplant that's for sure.

    I have early arthritis, lower back disc denegeration with arthritis in the spine, firbromyalga(that's going to be seen as connected to treatment in years to come I predict), nerve damage, chemobrain, fatigue from hell, severe tearing, hair thinning in cycles (from trauma they think), looks like teeth damage is starting to show, heart damage from adriamycin (have a pacemaker now due to extreme afib), respiratory issues - have improved a bit over the years), chronic infections, flu-like symptoms that come and go, kidney stones have started up and cysts gynecologically that haven't been tied to transplant but we will see. I think thats it. So far. The fun never ends. Oh ya and my marriage broke down not only because of the condition I am in afterwards but it played a significant part. I read somewhere there is a high number of failed relationships when cancer comes calling and sticks around too long, or its side effects.

    Anywho that's my story. A price to pay for a cure. Was able to see my children grow up was the goal and that has been accomplished.

    Take care.

    Blessings,

    Bluerose

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