long-term effects of radiation

24

Comments

  • Bonebrake
    Bonebrake Member Posts: 7
    #22
    I was diagnosed with stage II Hodgkins Disease 31 years ago at the age of 10. Except for removal of my thyroid 16 years ago, I have not experienced any secondary cancers. Because I was treated with some chemo and high-dose radiation throughout the neck and chest, I take three daily doses of Sialor. The drug is manufactured in Canada and is used to treat dry mouth. It is an over-the-counter medication reported to reduce the propensity for lung cancer. I drink a lot of green tea and try to eat fresh fruits and vegetables (including broccoli).
    With recent treatment breakthroughs, survivors of Hodgkins disease will likely live a longer and higher quality life. Due to abnormal muscular/skeletal development, I do experience limited pain each day. I also celebrate each new day. I have been married for 17 years, have three healthy, natural children (I was also told I would not have children), and just finished law school after working 14 years as a city manager in three communities. I now work full-time operating two corporations I formed which manufacture and distribute a natural hemostatic bandage product which I invented and sell to the military and medical professionals. I may not live as long as non-cancer survivors, but I have strived to make sure that my life will make a long-term difference. Do the same and be thankful for your current health and modern medical technology.
  • blueroses
    blueroses Member Posts: 524
    #23
    heart problems as late effects
    I had nhl and had an autologus bone marrow transplant 18 years ago and have atrial fibrulation and now a pacemaker from the drug adriamycin. Doctors confirm that, not sure if other drugs during chemo would damage. I had total body radiation as well and suffer from early arthritis and cataracts from it for sure.
  • tldowen
    tldowen Member Posts: 2
    #24
    becca12056 said:

    Chris, I will try to put your mind at ease. I am 47 and had HD 27 years ago. I had radiation at the time (when they use to really zap it to you). I have had no recurrence and no problems from the radiation except for a few thyroid nodules and a rapid heart beat. I live a very normal, hectic life. After HD I had two kids, graduated from college, and have been teaching very active 5th graders for 15 years! My kids are involved in everything and I am too! The rad. does have side effects but I figure it saved my life. I am cautious and keep myself checked, but live a very normal, full life. Email me anytime you like.
    Becky

    Becky,
    You sound like
    Becky,
    You sound like someone I need to talk to. I had HD when I was 20 and that was 24 years ago. I am now 44. I had radiation at the time and then I had a reocurrance at 29, but it did not move into the radiated areas. This time I had Chemo. My radiation effects have been infertility (however I did adopt a daughter that I wouldn't trade for the world). That was the hardest side effect to swallow until she came along. I had DSIC in one breast and had a masectomy. That wasn't fun, but honestly I was so glad that it wasn't a worse form of breast cancer and I needed no treatments. It is interesting that you have a rapid heart rate because I do too. I developed that in 2000, but my cartiologist said it was not related to the treatments, but who knows. I am also a teacher and teach kindergarten. Over the years I have learned to deal with the fact that I had cancer with paranoia only in spurts, however lately I have been living in perpetual paranoia of the future and worrying about side effects. My daughter is 7 and it scares me to death that something will happen to me before she is grown up. I don't know how to get my mind out of this funk. Getting older is nice but when I get aches and pains I don't know what to contribute it to. I really need someone to help me gain a new perspective on everything and quit being consumed with fear of the future. You sound like you have a good attitude and need some of that!
    Tammy
  • mox2
    mox2 Member Posts: 2
    #25
    tldowen said:

    Becky,
    You sound like
    Becky,
    You sound like someone I need to talk to. I had HD when I was 20 and that was 24 years ago. I am now 44. I had radiation at the time and then I had a reocurrance at 29, but it did not move into the radiated areas. This time I had Chemo. My radiation effects have been infertility (however I did adopt a daughter that I wouldn't trade for the world). That was the hardest side effect to swallow until she came along. I had DSIC in one breast and had a masectomy. That wasn't fun, but honestly I was so glad that it wasn't a worse form of breast cancer and I needed no treatments. It is interesting that you have a rapid heart rate because I do too. I developed that in 2000, but my cartiologist said it was not related to the treatments, but who knows. I am also a teacher and teach kindergarten. Over the years I have learned to deal with the fact that I had cancer with paranoia only in spurts, however lately I have been living in perpetual paranoia of the future and worrying about side effects. My daughter is 7 and it scares me to death that something will happen to me before she is grown up. I don't know how to get my mind out of this funk. Getting older is nice but when I get aches and pains I don't know what to contribute it to. I really need someone to help me gain a new perspective on everything and quit being consumed with fear of the future. You sound like you have a good attitude and need some of that!
    Tammy

    fear
    Hi Tammy,

    I don't think a cancer survivor ever stops worrying. I had hodgkins at age 7 and had 2 years of treatment. I had a tumor removed on my thyroid that was benign at 20. 7 years ago at 34 I was told that I was in menapause and would never have children. That to me was the worst news I could have ever heard. I wanted a family so badly, but I too am a teacher and have 20 kids every year. Then 4 months after the menapause diagnosis I was diagnosed with a rectal tumor. Here went more surgeries and radiation and chemo. I can say that not having a family was put into prespective. I have had a lot to deal with and do worry a lot about every ache and pain, but I do feel lucky to be a survivor. I know that my family has been my best support system. I have been thinking of going to counseling now to help me deal with not having children. It is a big loss, but I have 2 beautiful nieces that I adore. I think the fear that you are experiencing is normal and my advice is to give your daughter a hug and believe that nothing more will happen and god forbid it does.....you can fight it:)

    Maureen
  • Unknown
    Unknown
    #26
    This comment has been removed by the Moderator
  • radeohed
    radeohed Member Posts: 5
    #27
    diagnosed with secondary primary cancer
    I am new to this site and I think I have waited too long for a support network. lol. I was diagnosed with HD June 6th 2008 with stage 3b disease. I am now 24 years old. I received 6 cycles of ABVD Chemotherapy with adverse effects to Bleomyacin after 1 cycle and was taken off. I then received 18 treatment of high dose radiation. I was officially in remission in March of 2009. The worst or at least the most annoying effect has been damage to my memory! I have just had a biopsy on my thyroid for a nudule that was present 7 months ago but was not told about. It has spread to lymph nodes as well. A full lymphodectomy will be done and they want to do radioactive iodine treatments as well. I really think i will opt out because radiation is what is causing my papillary carcinoma now , though I know it is nothing like external radiation. I also have questionable spots on my lung and liver as well. I dont really know what i am asking. any thought will be appreciated. i am afraid i am just going to keep getting cancer after cancer until one of them gets the best of me. sorry for the long post and thank you all. love alicia
  • radeohed
    radeohed Member Posts: 5
    #28
    chris9655 said:

    my god, i am just finishing up with abvd chemo, 16 treatments, and my doctor said there is a possibility of radiation when i'm done. i didnt know so many things can go wrong from radiation but i definitely will tell my doctor that i won't go through it. am i being rediculous?? can someone put my mind at ease please. i apologize, i am a little freaked out. i'm 24 and this has been a really long and arduous road for me. i'm sure you all understand.
    thanks
    chris

    i dont mean to freak you out
    i am a female of the same age and went through the same treatment. I did radiation without knowing the affects and now wish I hadnt. less than 7 months after remission I now have thyroid cancer, a nodule on my lung and liver. I will be having my entire thyroid removed as well as a neck disection. I am not trying to make you stray from the radiation, just do your research and decide if the risks are worth the trouble. The radiation did not work for me as well. my tumors were not shrunk at all just hardened. I hae tumors around my heart and lungs filling my chest that are dead but cause pain. I am on percocet 4 times a day for the rest of my life because of it. please feel free to ask anything, i have done a lot of research. love alicia
  • Unknown
    Unknown
    #29
    radeohed said:

    diagnosed with secondary primary cancer
    I am new to this site and I think I have waited too long for a support network. lol. I was diagnosed with HD June 6th 2008 with stage 3b disease. I am now 24 years old. I received 6 cycles of ABVD Chemotherapy with adverse effects to Bleomyacin after 1 cycle and was taken off. I then received 18 treatment of high dose radiation. I was officially in remission in March of 2009. The worst or at least the most annoying effect has been damage to my memory! I have just had a biopsy on my thyroid for a nudule that was present 7 months ago but was not told about. It has spread to lymph nodes as well. A full lymphodectomy will be done and they want to do radioactive iodine treatments as well. I really think i will opt out because radiation is what is causing my papillary carcinoma now , though I know it is nothing like external radiation. I also have questionable spots on my lung and liver as well. I dont really know what i am asking. any thought will be appreciated. i am afraid i am just going to keep getting cancer after cancer until one of them gets the best of me. sorry for the long post and thank you all. love alicia

    This comment has been removed by the Moderator
  • Ginger Snap
    Ginger Snap Member Posts: 3
    #30
    post radiation effects
    Hi Rory, Sorry to hear, also sorry to say I'm dealing with long term effects too! I find out more things every day. My mom actually gave me this site. I was diagnoses in 1984 with Hodgkins I was 13. Yeah lots of radiation stories.wow. I'm having many lung issues also . A gentleman stated that that there are hospitals that deal with long term affects, In which one is the Mayo Clinic. I have been there, but not for long-term-effects. I have been off of work now since june & have had all sorts of tests done in which I have come across all this damage that these dr's. are seeing.
    Sucks that we still are the guinea pigs, well this is why they call it "practicing medicine" right. My story is pretty lengthy & too tired to go into right now. maybe next time if you need any more specifics, I'll try to help you. tired now, have to rest.
  • Pandemonium Parrot
    Pandemonium Parrot Member Posts: 2
    #31
    Long Term / Heart
    I was diagnosed in 1976 with Hodgkins. 14 weeks, or 70 radiation treatments later I had a spleen go missing along with about 40 strapping pounds off a 20 year old. Not to mention the delight of radiation sickness.

    Fast forward to 2010 and the long term effects of all the radiation has necissitated a, or two heart valve replacements. I'm currently scheduled for a bone marrow biopsy for anemia, which other procedures have failed to identify the cause for the low blood count. Have they broiled my bones, as well as baked my heart ?

    As far as treatments or ramifications, I'm not in the know any longer. I'm curious however to speak with others who have experienced symptoms of long term effects of mantel radiation. Rarely do you hear anymore about such large doses of radiation being administered.

    I've only yesterday 12/12/10 joined the CSN community so my page or profile are a bit sparse. Certainly I'd appreciate chatting with anyone with simular stories.
  • cathyp
    cathyp Member Posts: 376 Member
    #32
    Pandemonium Parrot said:

    Long Term / Heart
    I was diagnosed in 1976 with Hodgkins. 14 weeks, or 70 radiation treatments later I had a spleen go missing along with about 40 strapping pounds off a 20 year old. Not to mention the delight of radiation sickness.

    Fast forward to 2010 and the long term effects of all the radiation has necissitated a, or two heart valve replacements. I'm currently scheduled for a bone marrow biopsy for anemia, which other procedures have failed to identify the cause for the low blood count. Have they broiled my bones, as well as baked my heart ?

    As far as treatments or ramifications, I'm not in the know any longer. I'm curious however to speak with others who have experienced symptoms of long term effects of mantel radiation. Rarely do you hear anymore about such large doses of radiation being administered.

    I've only yesterday 12/12/10 joined the CSN community so my page or profile are a bit sparse. Certainly I'd appreciate chatting with anyone with simular stories.

    HelloI too am a HD
    Hello
    I too am a HD survivor, 21 years, struggling w/late effects. Have you found the "Long Term Effects of Treatment" discussion board on this site? There you will find other survivors that have gone through the same things you are, cardiac and/or pulmonary issues, radiation fibrosis, secondary cancers, etc, etc.
    Wishing you the best on your BMB.
    Cathy
  • welagold
    welagold Member Posts: 3
    #33
    Help is here for long-term effects of radiation
    I am not a Doctor but I am a person that research and pray for answers and the holy spirit always gives me the answer. Well, my husband was diagnosed with Hodgkins Non Lymphoma in 1993 and under gone radiation and chemo treatments but have been in remission, in that time period we converted our home over to all natural products and taken the harsh chemical and toxins out, because it is fact that these household products are destroying our bodies, however in 2008 he started back with the night sweats,mood swings,feeling fatigue, so after going to the doctor, they noticed that he has another lump growing in the same area as before, so we prayed and asked the holy spirit to intervene, apparently the radiation and chemo treatments from the cancer before destroyed some of his good cells as well as the bad, which still left room for disease and infection to set up. So what I did I researched and got him on a natural vitamin supplement that is the best in North American with an absorption rate of 85% compared to GNC, Vitamin World, Centrum, One a day at 3-7% so his body is getting the highest rate to recover and restore the immune system which has turned his whole system back to normal, the doctor didn't know what to do, because the before MRI and scans showed one thing and after showed nothing, at first they wanted to put him on all of the prescription and I said no because one side effects will affect the body and then the doctor gives something else to combat that side effects and more your body become immune to free radicals which destroys your body and break down our system so that all of these diseases and inflamation of pain can take over our bodies, so we have boost his immune system and he is doing great.

    I have a friend that was recently diagnosed with throat cancer and they give him alot of prescriptions to take along with radiation and chemo, however, his wife got him the vitamin supplement that my husband is taking and a few days ago, the doctors took him off the radiation and chemo, he was suppose to have many more treatments but the doctor said his immune system was healing faster than normal and we can only thank God for the supplement line.

    I was diagnosed last year in September with Fibroids and they wanted me to have a hysterectomy but I started drinking alkaline water along with increasing my intake of my vitamin supplements and after about 3 months, went back and nothing was found, our bodies are like vehicles but we only have one body, our bodies will restore itself but there are certain things we must do to protect and provide nornishment for it to restore properly.

    We are claiming victory for a great outcome with the doctor. Help is here for you, so just reach out. If you need the name and information just email me at welagoldinfo@yahoo.com
  • Tuscany57
    Tuscany57 Member Posts: 4
    #34
    Hi,
    It's sometimes so overwhelming trying to orchestrate follow up care isnt it?
    I am a registered nurse and finally researched a way to do this since I was not happy with results of tests being overlooked and relaxed medical care, we have to be so on top of this. I sought out my cancer center in Boston and found they had a survivors clinic and it has been a big help.
    At age 16 I had Hodgkins, treated with mantle radiation and splenectomy, at age 37 I hadbreast cancer, mastectomy with reconstruction and 6 mos of chemo..CMF, at age 50 Renal cell cancer, treated with l kidney removal.Now being evaluated for a thyroid nodule..fine needle aspiration is inconclusive so trying to decide if it should be removed. Problem being? the mantle radiation from almost 40 years back makes it a risky surgery. I have been on synthroid then levothyrovine for 34 years. I have had 2 basal carcinomas removed from my back (radiation field).

    I would like to summarize from what I have researched,and learned at the survivors clinic what your highest risks are:
    Breast cancer - don't WAIT! or watch a lump, have it biopsied (mammography does NOT read everything)
    Lung Cancer- if you smoke, do what you can to stop!! Mantle radiation intensifies your lung cancer risk- get periodic CT scan (not too often due to it adds more radiation to you)
    Thyroid cancer- get a baseline ultrasound tomorrow!!! get lab work to determine if med needed and get follow up scans
    Cardiovascular disease- have annual lipid profile drawn and any abnormal values should be treated AGGRESSIVELY, more so than 'nornal' patients because we are all high risk for heart attack and stroke. Get echo cardiogram and stress tests every 5 years and do not ignore cardiac symptoms!
    Dermatology- have skin checked by a dermatologist every other year
    Pulmonary- get a set of PFT's done (pulmonary function tests and an annual chest XRay
    Infection- not all clinicians will be aggressive enough to give you antibiotics for a fever or potential bacteria infection- without a spleen or with radiation to a spleen you cannot fight infection as others do- insist or find another medical doctor if they do not treat you properly for fever etc- sepsis is a huge risk (get annual flu shot, and pneumonia and mengitis vaccine every 5 years)

    I know I probably left things out! But all the above things are very important to present to your medical provider.

    Here is a link to one article that may be helpful:
    http://www.cancersurvivorsproject.org/hd2008longtermeffectarticle.pdf

    Best to all of you out there and glad we have each other!

    Tuscany57 (not from there but wish I was lol)
  • justme2530
    justme2530 Member Posts: 3
    #35
    Long term effects from Hodgkins radiation treatment
    In 1985 a year after the birth of my 1st child, I was told I had Hodgkin's, I was 23 yrs old. After having my splean removed I began radiation treatment at Washington Adventist Hospital in Silver Springs MD. After 5 yrs cancer free was told I was in the clear the chance of it returning was very slim. I went on to have 3 more healthy children and been fairly healthy until aprox 2 yrs ago at the age of 48 started having shortness of breath and neropathy and A-fib. Now 2yrs later at age 50 I've been hospitalized more and I can count for recurrent pneumonia and told I now have the following medical issues Interstitial pulmonary fibrosis,Anemia,Hypoxia,Lung mass, hypertension,Pulmonary hypertension, low serum cortisol level, atrial flutter with rapid ventricular response,adrenal insufficiency,COPD exacerbation, Leucocytosis, A-fib, heart failure. I have a no luck with doctors, have been though many with no answers. I would love to hear from anyone with information or experiences. Thank you Susan
  • justme2530
    justme2530 Member Posts: 3
    #36
    Long term effects from Hodgkins radiation treatment
    In 1985 a year after the birth of my 1st child, I was told I had Hodgkin's, I was 23 yrs old. After having my splean removed I began radiation treatment at Washington Adventist Hospital in Silver Springs MD. After 5 yrs cancer free was told I was in the clear the chance of it returning was very slim. I went on to have 3 more healthy children and been fairly healthy until aprox 2 yrs ago at the age of 48 started having shortness of breath and neropathy and A-fib. Now 2yrs later at age 50 I've been hospitalized more and I can count for recurrent pneumonia and told I now have the following medical issues Interstitial pulmonary fibrosis,Anemia,Hypoxia,Lung mass, hypertension,Pulmonary hypertension, low serum cortisol level, atrial flutter with rapid ventricular response,adrenal insufficiency,COPD exacerbation, Leucocytosis, A-fib, heart failure. I have a no luck with doctors, have been through many with no answers. I would love to hear from anyone with information or experiences. Thank you Susan
  • justme2530
    justme2530 Member Posts: 3
    #37
    Long term effects from Hodgkins radiation treatment
    In 1985 a year after the birth of my 1st child, I was told I had Hodgkin's, I was 23 yrs old. After having my splean removed I began radiation treatment at Washington Adventist Hospital in Silver Springs MD. After 5 yrs cancer free was told I was in the clear the chance of it returning was very slim. I went on to have 3 more healthy children and been fairly healthy until aprox 2 yrs ago at the age of 48 started having shortness of breath and neropathy and A-fib. Now 2yrs later at age 50 I've been hospitalized more and I can count for recurrent pneumonia and told I now have the following medical issues Interstitial pulmonary fibrosis,Anemia,Hypoxia,Lung mass, hypertension,Pulmonary hypertension, low serum cortisol level, atrial flutter with rapid ventricular response,adrenal insufficiency,COPD exacerbation, Leucocytosis, A-fib, heart failure. I have a no luck with doctors, have been through many with no answers. I would love to hear from anyone with information or experiences. Thank you Susan
  • cathyp
    cathyp Member Posts: 376 Member
    #38
    justme2530 said:

    Long term effects from Hodgkins radiation treatment
    In 1985 a year after the birth of my 1st child, I was told I had Hodgkin's, I was 23 yrs old. After having my splean removed I began radiation treatment at Washington Adventist Hospital in Silver Springs MD. After 5 yrs cancer free was told I was in the clear the chance of it returning was very slim. I went on to have 3 more healthy children and been fairly healthy until aprox 2 yrs ago at the age of 48 started having shortness of breath and neropathy and A-fib. Now 2yrs later at age 50 I've been hospitalized more and I can count for recurrent pneumonia and told I now have the following medical issues Interstitial pulmonary fibrosis,Anemia,Hypoxia,Lung mass, hypertension,Pulmonary hypertension, low serum cortisol level, atrial flutter with rapid ventricular response,adrenal insufficiency,COPD exacerbation, Leucocytosis, A-fib, heart failure. I have a no luck with doctors, have been though many with no answers. I would love to hear from anyone with information or experiences. Thank you Susan

    I'm 22 yrs post treatment for HD
    So sorry that you have been dx'd with the after effects of our treatments. Are you being followed by a long term effect specialist or cardiac docs that are well versed in radiation and chemo effects to the heart and lungs? I have found the LT effect specialist vital to managing my health. If you need any further info, I could PM the links to Specialists and other info that would be helpful. Hopefully, you all ready have a specialist managing this for you.
    Best wishes,
    Cathy
    HD 1989 - RADS
    HD 1994 - ABVD
    IDC 2007 - DBL MX
  • 1Farmer
    1Farmer Member Posts: 1
    #39
    cathyp said:

    I'm 22 yrs post treatment for HD
    So sorry that you have been dx'd with the after effects of our treatments. Are you being followed by a long term effect specialist or cardiac docs that are well versed in radiation and chemo effects to the heart and lungs? I have found the LT effect specialist vital to managing my health. If you need any further info, I could PM the links to Specialists and other info that would be helpful. Hopefully, you all ready have a specialist managing this for you.
    Best wishes,
    Cathy
    HD 1989 - RADS
    HD 1994 - ABVD
    IDC 2007 - DBL MX

    No late effects yet
    I was 21 when I was diagnosed with stage 3a Hodgkins. I had 12 wks of ABVD and 30 radiation treatments to part of the chest and neck. I'm now at 15 years of no other major health problems. I have never had the full energy that I used to have. I'm just worried that something else might pop up.

    My tumors in my neck dissapeared within 24 hrs of my first chemo treatment. Has anyone else had that happen?

    I thought the doctor could have cut short the treatments but he put me through them all, and then the radiation! At least it never came back.


    I hope someone finds this encouraging.

    Best wishes to all as well!!!

    TR B
  • JK
    JK Member Posts: 1
    #40
    cathyp said:

    I'm 22 yrs post treatment for HD
    So sorry that you have been dx'd with the after effects of our treatments. Are you being followed by a long term effect specialist or cardiac docs that are well versed in radiation and chemo effects to the heart and lungs? I have found the LT effect specialist vital to managing my health. If you need any further info, I could PM the links to Specialists and other info that would be helpful. Hopefully, you all ready have a specialist managing this for you.
    Best wishes,
    Cathy
    HD 1989 - RADS
    HD 1994 - ABVD
    IDC 2007 - DBL MX

    long term effects
    WOW, I too am 22 years out of treatment for hodgkins. I just joined this site. Im looking for ideas/help with long term effects after chemo & radiation. My doctors, many as of late, have thrown their hands up with a diagnosis of cognitive disfunction, chemobrain, organic brain syndrome, (take your pick). My latest issues are memory loss, difficulty producing the right word when speaking, difficulty concentrating, multitasking and FATIGUE. I have seen a few neurologists, hematologist, cardiologist, primary care I may be forgetting some! I work as an engineer. In 2010 this team of doctors after testing & documenting my memory loss, energy loss (I nap nearly every afternoon to get thru the day with a night of sleep) decided I should go on long term disability. Not good! I did short term disability from work for 6 months hoping to recover. Thank God my job allows me to stay on part time. But it my cognitive issues and fatigue become more of an issue at work. I sure would appreciate any info to pursue to try to find answers if not help in this. Sorry for venting, I don't run across many people who can relate to what I deal with every day. Thank for posting & listening.
  • medsec
    medsec Member Posts: 25
    #41
    hawkl said:

    Hi
    My name is Gavin I have went through Hodgkins disease and the treatment aswell as all the after affects. I have never talked to anyone about what I was going through or am going through.
    I was 20 when I first was diagnosed and had just became a Father. I had decided to be a man and get through it on my own. I'm just now finding out that this was not a great idea. I have just turned thirty and went through something worse than Chemo or Radiotherapy. My wife and I just lost a child. I was told after my treatment that I would never be able to have children ever again.
    This was devastating to us as we love children and hoped to have a brother or sister for my daughter. To our surprise 9 years later my wife became pregnant. "Unbeleivable". I got myself checked out yet again and found out that I was now able to produce children. My count wasn't great but it was enough. We were delighted. My wife got to nine weeks then we lost the baby. Totaly devastated. I beleive it is due to the radio or chemo perhaps both.
    Have you ever felt useless,pathetic,and a total burden to the people you love? If you or anyone else out there has any advice for me on this matter I would welcome it extreemly. Take Care.

    long term effects of radiation
    Gavin, I feel hat way every day.....like my friend who has cancer of the tonsils said, they saved my life and made me a cripple... but we do have worth, it is just hard to feel it at times, like u said their are things worse than cancer and losing a child is certainly one of them...we just have to believe their are reasons for everything whether we understand those reasons or not.. take care....Vicki

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