37 year survivor of Hodgkins with recent tongue fasciculations

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wetmittens
wetmittens Member Posts: 2
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I was diagnosed with Hodgkins Disease when I was 20.  Received a month of cobalt radiation and 6 months of MOPP chemotherapy.  Have had many adverse side effects from the radiation. When I was 38 I was diagnosed with Breast Cancer.  When I was 49 I needed an aortic valve replacement.  When I was 55 I was diagnosed with Kyphosis caused by radiation and needed titanium rods in my spine from C2 - L1.  Have been told all of these things were caused by the radiation I received for Hodgkins Disease.  Recently I developed tongue fasciculations, neck pain, trouble swallowing and difficulty with speech.  Have been to a GP, ENT, Neurologist.  I have had two MRI of my brain and one of my neck.  Had a spinal tap and a CT of my neck. Was tested for ALS - Negative.  All show nothing. Blood work is good. They are now telling me it is yet another side effect from the radiation.  Has anybody else had this happen to them and if you did what was your outcome?  It is driving me crazy and I am having a hard time accepting that radiation has caused this 37 years later.

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  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #2
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    Late-term

    Both radiation and chemo can (and often do) have very delayed side-effects. Adriamycin (Rubex), for instance, can cause congestive heart failure as long as ten years following chemo. Many writing here can say that they have not had long-term effects --yet. But no one knows what the future holds.

    I have not heard MOPP mentioned in a long time, but it was the Gold Standard for HL before ABVD was developed. I have known a few friends who went through MOPP -- tough stuff. 

    You remind me a lot of myself. When you go to a doctor, you've had so many serious diseases, and so many radical treatments, that they do not know what to think, or where to begin.  "Delayed effects" is an easy first guess.   

    I also find your mention of rods from C2 into your lumbar interesting. I have a severely warped spine from the neck to the lumbar region, with a fracture at T-9 and numerous completely collapsed disks and a kyphotic deformity, but I have always been told that my spine was totally inoperable, since they would "Have to brace me from the base of the skull to the lumbar."  But in your case, that is exactly what was done.  Not somethng I seek, but good to know.  I now at times have to grasp my head in my hands and "break it free" to turn, since C1 at the skull is sticking from arthritis. Ouch ! If you wish to say anythng more about whether the rods were worthwhile or not, please private email me here using the CNS email function.

    You have been very thoroughly checked out...very.  At times, doctors simply do not have answers. I'm glad that the neurodegenerative test (ALS) was negative, since that often begins in the neck. I also assume you have no symptoms of Parkinson's or Continuous Tremor, which are both brains stem abnormalities. All of these conditions cause swallowing difficulties.

    Regardless of all of the above, your tongue issues do not in any way sound like lymphoma. I suppose that much is good news.

    max

  • onlytoday
    onlytoday Member Posts: 609 Member
    #3
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    Radiation

    Radiation treatment was sure different 37 years ago than it is today.  My sister had Cobalt tx for Hodgkins disease in the 60's and I know they over radiated her.  She ended up getting breast cancer, bladder cancer and heart trouble.  So I do believe the radiation can catch up to you later, especially (unfortunately) with the older treatments.  The medical community just didn't know about safe levels etc.  back then.  I am very sorry you are going through this.  I know there are groups that have formed of folks that are experiencing later issues from radiation.  And if you check with large teaching hospitals you may find a doc that will take interest and try to make sense of your symptoms. You sure have a lot on your plate.

    I am on the forum because lightening struck twice in my family.  My sister had Hodkins as a teen and I have Non-Hodgkins as an adult.  NMZ Nhl stage IV, partial remission since 2012.

    Best of luck, hope you get answers and relief.

     

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