Radiation

wjuran
wjuran Member Posts: 2
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
In 1977 I had radiation treatments for Hodgkins thru out my chest, shoulders and neck area. In January (06) I had open heart surgery to replace a valve that the doctors say that was damaged from the radiation treatments. I have also lost all muscle thru out my shoulders and neck. My neck is very weak and I am having trouble with severe vertigo. The doctors now want me to have a brain scan and other tests to see what might be causing it. Has anyone else had any problems such as these? I am 47 years old and it seems that all my heath issues go back to the treatments. I would sure appreciate any feed back. Thanks, Bill.

Comments

  • Waving
    Waving Member Posts: 43
    #2
    Bill hi - you could also search through the Hodgkin's Disease and Brain pages on the website www.cancergen.com for additional sources of information and support.
  • stepet
    stepet Member Posts: 69
    #3
    I finished just radiation treatment only three years ago and I am a little nervous after reading your post. I have been having strange pain in my neck and shoulders.(my source of radiation treatment as well) I lift small children for my job, so I was blamming that for the cause of my issues, maybe I should investigate it further.
  • wjuran
    wjuran Member Posts: 2
    #4
    stepet said:

    I finished just radiation treatment only three years ago and I am a little nervous after reading your post. I have been having strange pain in my neck and shoulders.(my source of radiation treatment as well) I lift small children for my job, so I was blamming that for the cause of my issues, maybe I should investigate it further.

    I apologize for making you a little nervous, when I had radiation 29 years ago it was a little more crude then it is today. They really had no way to regulate the radiation dose so they put me in a room on a strecher and covered my body with the exception of my chest, shoulders and neck area. They did this for 6 weeks, 5 days a week for 1 hour at a time. I have been told from my doctor here in Seattle that he's only heard of one other case like mine but had no other info. I would be happy to give you any information that I can that would help. Bill
  • janet21
    janet21 Member Posts: 3
    #5
    Hi there wjuran,

    My name is Janet. I was diagnosed with HD back in 1979-1980 at about 14 years old. I'm female. I have had several post radiation problems since then. I had full mantle radiation (chest) due to my tumor being centered in my chest. It was approx. as big as 2 grapefruits by the time it was caught. Had MOPP chemo and the radiation. Have been HD free since. Developed Breast Cancer at 35 years old. Had not known I was more suseptible to Breast Cancer due to Radiation and should've been having Mammograms since about 30 years old, but had one due to my Mom being diagnosed with Breast Cancer 4 months prior. My Breast Cancer could've been hereditary, but I think it may have been from the radiation. I had maximum amounts of radiation back in 1980. Anyway, I to have been told that my Aortic Valve is on its way out. I have an injection fraction of about 45%. This is believed to be from the radiation too. Would love to know how your open heart went. I was just told of this heart valve problem 6/05 and see a Cardiologist every six months. Did you wait to get the valve surgery until the injection fraction got real bad? Or, did you have the surgery immediately.

    You also said you feel you have muscle loss. I too feel like my neck is very week. I do not get vertigo, but I've suffered from migraines for years. I am having a spine MRI next week due to low back pain and sciatic problems???

    Will check periodically to see if you respond to my post. Have never really posted before.
  • nathalie
    nathalie Member Posts: 12
    #6
    janet21 said:

    Hi there wjuran,

    My name is Janet. I was diagnosed with HD back in 1979-1980 at about 14 years old. I'm female. I have had several post radiation problems since then. I had full mantle radiation (chest) due to my tumor being centered in my chest. It was approx. as big as 2 grapefruits by the time it was caught. Had MOPP chemo and the radiation. Have been HD free since. Developed Breast Cancer at 35 years old. Had not known I was more suseptible to Breast Cancer due to Radiation and should've been having Mammograms since about 30 years old, but had one due to my Mom being diagnosed with Breast Cancer 4 months prior. My Breast Cancer could've been hereditary, but I think it may have been from the radiation. I had maximum amounts of radiation back in 1980. Anyway, I to have been told that my Aortic Valve is on its way out. I have an injection fraction of about 45%. This is believed to be from the radiation too. Would love to know how your open heart went. I was just told of this heart valve problem 6/05 and see a Cardiologist every six months. Did you wait to get the valve surgery until the injection fraction got real bad? Or, did you have the surgery immediately.

    You also said you feel you have muscle loss. I too feel like my neck is very week. I do not get vertigo, but I've suffered from migraines for years. I am having a spine MRI next week due to low back pain and sciatic problems???

    Will check periodically to see if you respond to my post. Have never really posted before.

    HI, I was dx with Hd Stage 3B buly mass. I too had a large tumor on my chest but I forgot the size. it took a year and 8 mnths before they dx me. Because of the late dx and large tumors in the heart, I also had to do an emergency surgery because the tumors formed fluid in my heart. I also did Rad on my neck, shoulders and chest area. My neck sometimes get stiff but I do not have vertigo. Because of rad. and chemo, I had a shoulder cuff tear, unable to use my arms because of bone pain (muscles are weak), both knees are bad (had no rad. there so I do not know what happened),facial pain and headaches. It's been a year since my last treatment and I still suffer from these effects.
    The Doc. did tell me my chance of breast/lung cancer in the future. I just pray to God I do not ever get that! Good luck to you and hang in there. You too janet21 :)
  • janebuse
    janebuse Member Posts: 2
    #7
    Bill,
    I just discovered this discussion board. My husband, Brett, was diagonosed with Hodgkins when he was 15 years old. He is going to be 48 years old in March. It is eerie how similiar your situations are. About 5 years ago, Brett had his aortic valve replaced due his radiation treatments. He has had nothing but complications since...including fluid in the lungs, shortness of breath, atrial fibrillation etc. He also has very little muscle in his neck and shoulders. We have been to doctor after doctor, they all seem baffled. He is reluctant about this site as he fears hearing about others experiences and what may happen to him. I feel we may be able to learn from them. Do you have any other health concerns? I would love to hear from you. Jane
  • RNHF1986
    RNHF1986 Member Posts: 26
    #8
    janet21 said:

    Hi there wjuran,

    My name is Janet. I was diagnosed with HD back in 1979-1980 at about 14 years old. I'm female. I have had several post radiation problems since then. I had full mantle radiation (chest) due to my tumor being centered in my chest. It was approx. as big as 2 grapefruits by the time it was caught. Had MOPP chemo and the radiation. Have been HD free since. Developed Breast Cancer at 35 years old. Had not known I was more suseptible to Breast Cancer due to Radiation and should've been having Mammograms since about 30 years old, but had one due to my Mom being diagnosed with Breast Cancer 4 months prior. My Breast Cancer could've been hereditary, but I think it may have been from the radiation. I had maximum amounts of radiation back in 1980. Anyway, I to have been told that my Aortic Valve is on its way out. I have an injection fraction of about 45%. This is believed to be from the radiation too. Would love to know how your open heart went. I was just told of this heart valve problem 6/05 and see a Cardiologist every six months. Did you wait to get the valve surgery until the injection fraction got real bad? Or, did you have the surgery immediately.

    You also said you feel you have muscle loss. I too feel like my neck is very week. I do not get vertigo, but I've suffered from migraines for years. I am having a spine MRI next week due to low back pain and sciatic problems???

    Will check periodically to see if you respond to my post. Have never really posted before.

    Hi. I am brand-new to csn. I don't even have my profile done yet, but wanted to get into the discussions. I replied to janebuse's current message from 1/25/07 on adults with hd complications and saw this message while reading through back postings. I was diagnosed with Hodgkin's in 1983 at age 19. It was stage 3A nodular sclerosing cell type. I had full mantle and inverted Y because they couldn't determine whether there was any lymph node involvement below the chest area. I didn't receive chemo. I was diagnosed with breast cancer in 2005 and had a bilateral mastectomy and chemo. No one will really speculate whether radiation had to do with it. I found the lump in the uppper left breast where I had lots of radiation. I would love to hear more from you or others concerning this and am interested in the heart valve problems as well.
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator

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