Hodgkins disease survivor

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  • mozza127
    mozza127 Member Posts: 9
    #102
    cathyp said:

    Long Term Effect Specialists
    I currently see a LT Effect Specialist at MSKCC in NYC. I had HL in 1989 and 1994. Was dx'd with IDC in 2007, an effect from the radiation tx's. Keeping on top of all the other problems from the rads and chemo such as thyroid, lungs and cardiac. I'll send you a private message telling you about a web site that will have the resources you are looking for.

    Cathy

    back pain

    hi,my names ian iam a 47 was18 when first treated hodgkins lymphoma neck and chest had big dose of chemo and radium, ,,now having bad side effects ,,infections,bad chest ,tummy pain and back pain ,lots of mucus to and feeling under weather,how are you after treatment thanks ian

  • mozza127
    mozza127 Member Posts: 9
    #103
    berean said:

    35 year survivor
    This is the first time I have visited this site. I couldn't believe I found someone in my shoes! I was diagnosed in 12-76. I was 21 and a newlywed. I am now 56. I lived a relatively healthy life until 10 years ago. Now I seem to have health problems more often. I have had pleural effusion(fluid in the lining of the lung) 3 times. I currently am being treated for it. The dr's are stumped as to why this has occurred. Does anyone out there know of doctors who are familiar with long ago treatments and their long term side effect? How would I go about finding one?

    hi

    berean me having probs with lungs and back pain ,chest infections ,,30 year survivor ,feel like chatting.any time thanks ian

  • mozza127
    mozza127 Member Posts: 9
    #104
    Fran-HD said:

    Hodgkins in 1980
    I had hodgkins in 1980 at the age of 17 and a senior in high school. I now feel like I had cancer in the stone age compared with the new treatments available. I have been plagued with several long term effects of radiation. My chest to the top of my neck was radiated. I found out 5 years ago that I had pulmonary fibrosis from radiation leaving me with 75 % lung capacity. I have been able to manage that with asthma based medicines and breathing treatments. Over the past 3 years I have had to deal with acid reflux. Recently it has been worse and the GI doc recommended fundoplication surgery but come to find out they are saying due to radiation that the surgery is really not an option because the tissue is considered unhealthy/damaged due to radiation from 30 years ago. Has anyone else run across long term affects of radiation or know where I can find more information about these long term health issues associated with the radiation. Thanks

    hi fran =hd

    omg i the same 18 years old now 30 years on after massive dose of chemo and radium ,to neck and chest,,,realy bad chest and mucus,my back kills me with shooting pains down either side,,,feel sick,tummy ache and probs with skin ,is their more to come ,,any help is a big help

  • Highlander56
    Highlander56 Member Posts: 16
    #105
    lani4000 said:

    Hodgkins 1987

    Was diagnosed in 87 stage II,  44 upper radiation treatments, 44 lower.  25 years later diagnosed with breast cancer, they feel it was caused by the radiation.  I had a double mascectomy, no radiation or chemo.  Now I am told I have coronary disease and vascular disease probably due to the radiation.  I wouldn't be alive today if not for those first radiation treatments, but I would like people to be aware of the things that can occur if you had those radiation treatments.

    Late-effects

    in 1987, I was dx with Hodgkin's disease. I had radiation the same year which brought remission. I experienced reoccurrence in 1989. Chemotherapy brought remission. I had CLL (Chronic Lymphocyte Leukemia), 1991-1996. No traditional treatment available back then. I opted for non-traditional treatment in Mexico.

    Late-effects I've developed include heart and lung disease. December 10th, 2014, I had a severely diseased aortic heart valve replaced. Chronic illnesses directly or indirectly from treatment include: chronic kidney disease, hearing loss, tinnitus, chronic asthmatic bronchitis, chronic fatigue, sleep apnea, headaches. Chronic fatigue limits my daily activities.

    I'm grateful to communicate with other survivors.

    Take care, Glen 

     

     

     

     

     

     

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