Osteoporosis following radiation

gardener
gardener Member Posts: 4
edited March 2014 in Head and Neck Cancer #1
I'm a 3 year throat/lymph gland cancer survivor. This fall, after rapidly increasing pain and decreasing joint mobility over the past year, I was given a bone scan, the results being severe osteoporosis. The numbers read like the skeleton of a 90+ year old woman. I'm 50, and have been very physically active my entire life. I'm a nurserywoman by trade with my own landscape design business on the side. I'm told I can no longer lift over 10 pounds or fall without danger of fracturing/shattering vertebrae or other joints or bones. At this point the doctors are doing tests ad nauseum to determine what is causing my body to simply sluff all incoming calcium rather than absorb any of it. So far, thyroid and parathyroid cancers (common side effects of neck radiation) have been ruled out. I cannot take Fosomax because of it's tendency to cause osteonecrosis of the jaw bone. Instead I'm scheduled to begin a series of shots of the Eli Lily drug Forteo. I'm researching it now before I go ahead with these shots. My question to the community is this: Has anyone else experienced severe bone loss as a result of radiation ( mine was maximum dose for the maximum time; can't recieve anymore in my lifetime), or other cancer treatments, and if so, how have you dealt with it? I also underwent chemo, both types of platinum therapy combined with constant flow of 5-FU. My peg tube was incorrectly placed so the insertion site became infected, ultimately requiring surgery to remove it and repair the stomach. So during the time I couldn't swallow, I became malnourished, literally as a result of starvation. Has anyone else out there had any experience with bone loss or the treatments for it? Also was turned down flat for SSI because I'm still working, therefore not destitute. Anyone had experience dealing with these beaurocrats? My spring season begins again in March, entailing much lifting and physical movement. I need to not be there! Help please!

Comments

  • TereB
    TereB Member Posts: 286 Member
    #2
    Hi Gardener,

    I am also a head/neck cancer survivor. Mine is rare and I've been having radiation treatments over the years as I have many metastases. There's been so much radiation, sometimes I think I glow in the dark.

    First radiation in head area damaged my pituitary so I had a very early menopause before I was 40 years old. This was around 1990 so I took hormones estr/proges for years trying to avoid osteoporosis. When the new study came out saying the hormones where not good for you, I stopped taking them and later I also had a bone density test. I have osteopenia which is the step before osteoporosis. I've been taking calcium tablets and Actonel for a while now. I feel fine but I am not supposed to run, jog or jump since there is a big chance my pelvis could break. This is because I have tumors on many bones plus scar tissue from the past radiation. I am not familiar with Forteo so I cannot tell you anything about it.

    I've had radiation several times and sometimes it's been a big dose; big enough to make me sick the first day. Until last year I used to walk a lot, that seems to help bones. Also changed my diet, ate lots of vegs. Usually when I cannot eat, I drink Boost which keeps me from becoming malnourished.

    I cannot tell you for sure that Actonel and calcium are working but I do have more strength and more energy than last year. I know that some people that had head/neck radiation and later osteoporosis take Zometa. My onc said it was not for me.

    I wish I could give you more information.

    All the best,
    TereB
  • jeanette7
    jeanette7 Member Posts: 18
    #3
    try praying and fasting,matthew17:verse21.
    ezekiel47: verse12. daniel chapter 1.
  • macswife
    macswife Member Posts: 4
    #4
    My husband who is a 19 year throat/lymph gland cancer survivor, a 3 year kidney cancer survivor and is just finishing treatment for advanced prostate cancer, is now diagnosis with osteonecrosis, or death of the bone from over radiation. Our ortho doc has just decided to retire and we are in a quandry. He is suffering insufficiency fractures and in a lot of pain. In fact, this entire last fight has felt like a Keystone Kops movie. Good luck to you.
  • Matty
    Matty Member Posts: 21
    #5
    Osteoporosis
    I am in the same position and have no idea what to do. Two years ago I had osteopenia thats now osteoporosis. The doctor doesn't want to order anything because I haven't reached
    menapause. I knew there was something he wasn't telling me, so I came across what you said.
    I thought Forteo would be a good option but doctors at Sloan Kettering in New York don't think so because of it's increase chanse of bone cancer. I am waiting for my first appeal
    for disability. I just lost coverage through cobra. When I lost my job I was able to get a government plan called "Healthy New York" but it does't cover my help I was getting at
    NYU and I don't have a drug plan. If you get any information about this please let me know.

    Matty

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