Osteoporosis treatment following radiation for throat cancer

Or0SCC
Or0SCC Member Posts: 3 Member
edited September 2022 in Head and Neck Cancer #1

I'm hoping that someone has some information, thoughts or suggestions for Osteoporosis treatment following radiation from base of skull to collar bones. 5 years ago I had squamous cell carcinoma of the oropharynx, was treated with cetuximab and 33 cycles of proton radiation.

Fast forward to now, and I've just been diagnosed with Osteoporosis. I've looked at the package inserts for the approved medications and noticed a risk of Jaw Osteonecrosis. Needless to say, having had radiation to my jaw, there's already an increased risk of Osteonecrosis and I'm afraid to take any medication that could increase that risk.

Has anyone dealt with this situation? Thank you so much in advance.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #2


    Hello Or0SCC and welcome to the H&N forum.


    I have never encountered this situation where a med may cause Osteonecrosis.

    I think many of us just take the meds we are given and don’t pay attention to the side effects list. No wonder they are so long and complicated. Kudos to you as they say for being vigilant and reading about the medications you are prescribed. My idea would be to see if there is another med they can prescribe without this side effect. As you most likely know Osteoradionecrosis is a very situation and taken to its worst scenario would lead you to a major operation and replacing a portion of your jawbone with bone from another part of your body. I personally think I would be more acceptable to the bone risk rather than the jaw risk but we are all different, your choice.

    I did find this site “Weighing the Risks”

    https://www.uab.edu/shp/toneyourbones/step-3-specialist-examination/bone-building-medications/osteonecrosis-of-the-jaw-weighing-your-risk



    And here is a site I always post when this subject comes up.

    https://oralcancerfoundation.org/complications/osteoradionecrosis/


    I hope this helps in some way.

    Take care-God Bless-Russ

  • Or0SCC
    Or0SCC Member Posts: 3 Member
    #3

    Thank you for the suggested readings.

  • Aboobubba
    Aboobubba Member Posts: 1 Member
    #4

    Hi, My wife, Toni, had stage 4, adenoid cystic carcinoma surgery 11 years ago. They had to remove her tongue (tumor was in the base of tongue in her throat so not readily visible during oral examinations), resulting in a drastically modified airway. Surgery was the only treatment for this type of cancer. They also found a few cancer cells in the lymph nodes in her neck (these lymph nodes were removed during her surgery) and followup radiation therapy for 6 weeks (30 treatments) was recommended because of this. She had osteoporosis since her 40s (she now 74), but not too bad. Five years ago she started taking Prolia every 6 months in an IV drip as her osteoporosis was much worse. One year after starting Prolia she developed osteoradio necrosis in her lower jawbone. Doctors said most probably due to the Prolia, but hard to tell for sure as this is a potential side effect of the radiation to her jaw. This required removal of the dead bone tissue and a bone transplant (bone taken from her thigh bone). She lost 1/2 of her lower teeth because of the surgery. Other than losing the teeth, the surgery was not disfiguring. You have to weigh the pros and cons. If she had it to do over again, for sure she would have not taken Prolia. Risk may be less with Fosamax. Get the best input from your cancer doctor, radiation oncologis, and rheumatologist and make your choice. Unfortunately, it's a crap shoot. We are blessed that she is with us this long.

  • Or0SCC
    Or0SCC Member Posts: 3 Member
    #5

    Aboobubba, thank you so much for sharing your wife's experience. I'm so sorry she's experienced all of this. Your input has definitely helped me make a decision. I'm going to try the natural route to address the Osteoporosis and not take the risk.

  • Nancy24
    Nancy24 Member Posts: 72 Member
    #6

    Just as an FYI....

    My husband was treated for HPV+ oropharyngeal cancer in 2016. He received 35 doses of proton radiation and 7 cisplatin (chemo). He recently developed osteopenia and his doctor wants to put him on Fosamax. Knowing the potential risk, he consulted with his oral surgeon (he had a molar extraction recently and a CT scan of his jaw). The oral surgeon advised him to never take Fosamax because he already has the beginning of osteoradionecrosis in his jaw. He actually mentioned Prolia as a possible option which someone else mentioned in another response. Now I'm thinking he shouldn't take anything.

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #7

    Hello Nancy24, glad to see you active and in the forefront here. Your recent advice to other folks on here should be very helpful. I like to think of medications as ones that we really need to have and then take them but limit your acceptance of new drugs with study and good thought. Simply because they all seem to come with a list of side effects so you have to be careful.

    I looked up both medications you speak of and found some info on them so I can learn because I don't know anything about them.


    For Fosamax I found--

    Bone health

    It can treat or prevent osteoporosis. It can also treat Paget's disease of the bone.

    Side effects are--

    What are the dangers of taking Fosamax?

    Abdominal pain, bone muscle or joint pain, dyspepsia, hair loss, itch, constipation, diarrhea, flatulence, dizziness, headache, vertigo, and swelling of the ankles or feet are the most common side effects.Feb 16, 2022

    But what I found most troubling about it was it was taken off the market for a while due to serious side effects--especially one anyone wants to avoid but especially H&N folk's Dead Jaw Syndrome.

    Why was Fosamax taken off the market?

    The U.S. Food and Drug Administration documented several of the drug's more serious side effects and subsequently distributed numerous warnings. Though rare, severe health problems associated with Fosamax can be crippling. These include femur fractures, Dead Jaw Syndrome, esophagus problems, and musculoskeletal pain.



    The other medication you spoke of Prolia seems to have the ability to help people who have or have had cancer--

    Bone health

    It can treat osteoporosis and hypercalcemia. It can also treat bone cancer and bone problems in patients who have cancer.

    But as with all medications it seems, it has its share of side effects--

    What is the downside of taking Prolia?

    Skin problems such as inflammation of your skin (dermatitis), rash, and eczema have been reported. Bone, joint, or muscle pain. Some people who take Prolia® develop severe bone, joint, or muscle pain.

    What is the most common side effect of Prolia?

    Bone pain. Pain, specifically musculoskeletal pain, is one of the most common side effects of Prolia.


    From what I am reading osteopenia is normal aging of the body that they can check with a bone density test and it is a condition of getting older. It says once you hit 35 years old bones begin to break down faster than they build up. Osteopenia is just the precursor to osteoporosis. How all this affects H&N or other cancer patients and whether we should be extremely concerned about it I would say is something people just need to decide for themselves after reading all the information they need and getting their doctor's input on the subject. I feel they have tests and screenings nowadays for everything and I feel we can overdo this stuff going down to evaluating on a micro level when all we need to do is look at things on a normal level.

    I did find this interesting though and if your husband gets extractions I would say do the HBOT dives if he can before the extraction, every little bit helps. I got the HBOT before my last extraction and I think it helped but when I did my follow-up HBOT of 10 dives I only got through 6 of them because it was having adverse effects on my and my vision which is a known side effect of HBOT.

    Here is a link for everybody about Osteopenia from Cleveland Clinic--

    https://my.clevelandclinic.org/health/diseases/21855-osteopenia


    And here is a link from the University of Alabama on "osteonecrosis of the jaw, weighing your risk".

    https://www.uab.edu/shp/toneyourbones/step-3-specialist-examination/bone-building-medications/osteonecrosis-of-the-jaw-weighing-your-risk


    Nancy, wishing you and your husband the best.

    Take Care God Bless-Russ

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