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    • #32822
      Natalie Mondor
      Participant

      Hello All,

      My PT therapist suggested I might benefit from hyperbaric oxygen therapy because my fibrosis was caused by radiation to my chest about 40 years ago. Does anyone have any experience with this therapy or any knowledge of it ?

      Thanks

      Natalie

    • #32830
      Margaret
      Participant

      Hi Natalie,

      I know that hyperbaric oxygen therapy can help with radiation induced fibrosis in tissue and bone (such as in breast tissue necrosis or head and neck cancer) but have never heard of it being used to treat pulmonary fibrosis in humans.  I have PF from radiation for breast cancer but my breast tissue was not affected.  Studies have been done in mice that look promising, but my pulmonologist reminded me that mouse lungs are not human lungs when I asked about this.  Maybe this will become a treatment in the future.

      Margaret

       

      • #32831
        Natalie Mondor
        Participant

        Hi Margaret,

        Thanks for your reply. My PT therapist underwent the course of hyperbaric therapy after intestinal cancer and found it helpful for the swelling. I still have edema in my breast and arm and that would probably be reduced. So useful for some things but not for others!

        Be well,

        Natalie

    • #32832
      Margaret
      Participant

      Hi Natalie,

      Maybe you could get hyperbaric oxygen therapy for your edema and it would have the good side effect of helping your lungs.  I asked my pulmonologist (who only treats ILD at a large research hospital) if they would ever follow up on hyperbaric oxygen for radiation induced PF in human clinical trials.  He told me it was very unlikely since breast cancer radiation induced PF is a pretty rare subset of a rare disease.  Most of his patients have IPF, connective tissue disorders or environmentally caused ILD. Radiation injury is obviously much more common in lung cancer patients, but they are different in that the cancer is also in the lungs and they don’t have the expected survival time of most breast cancer patients.  It’s easy to cause PF with radiation in a lab, but not so easy to find mice with IPF or scleroderma.

      Good luck with following up on this!

      Margaret

      • #32846
        Natalie Mondor
        Participant

        Margaret,
        So much for being a rare case! For me, it’s an ongoing story in that the radiation for breast cancer in 1984 (when lumpectomy and radiation first became an option at Vanderbilt university hospital), led to lung cancer in 2009 before my recent diagnosis of  pf. In 2009 the docs wouldn’t say what caused the lung cancer (no risk factors), but fairly obvious since the tumor lined up with the radiation field from 1984. I don’t blame them at all, but I’ve done a lot of reading over the years and we’re not so rare as some might contend.
        Hope you are staying well and safe.
        Natalie

    • #32835
      Millie
      Participant

      I believe that medicare, if you are on it, only pays for HBOT for diabetic non-healing wounds. I had HBOT, off label, for nerve damage. I paid out of pocket for 2 treatments a day for 4 weeks.

      • #32845
        Natalie Mondor
        Participant

        Millie,

        Thanks for that very important information. Hope you are doing well.
        Natalie

    • #32836
      Kathleen Kaufman
      Participant

      I spent 60 hours over 30 days in a hyperbaric chamber after the surgeon who did my mastectomies (after breast cancer) cut the skin too thinly, & there wasn’t enough blood supply to keep the skin alive & suture it back together. I can tell you it wouldn’t be something I’d look forward to again! You have to only wear their garments, no make-up or hair products, no jewelry, & you cannot take anything in the chamber. Not even a hard copy book. It’s high pressure, high oxygen (very flammable), & they’re concerned about any spark that would blow the whole place up. The only thing you could do is watch a TV that was outside the chamber, & only the technologist could change the channel or volume. For me, it did nothing. It didn’t fix the skin not healing problem, nor did it make me feel any smarter (some say it’s good for the brain)! I ended up having to have a L-D flap of skin from my back brought under my arm to cover that “breast.” So that’s my experience, although it obviously didn’t have anything to do with PF. I just thought you might be interested in hearing what the experience is like.

      • #32843
        Natalie Mondor
        Participant

        Kathleen,

        Thanks for sharing this valuable information. It’s good to have a first-hand account, even if it wasn’t successful for you. It really fills in a lot of gaps in the information I have.
        Hope you are doing well.
        Natalie

    • #32837
      Jofac O’Handlin
      Participant

      Hi Natalie, and other thread contributors.
      I live in the Isle of Man, centre of the Irish Sea.
      Because of its central location it was an ideal site for a Hyperbaric Chamber. In the ‘good old days’ this was a government facility to provide urgent support to the maritme industry. When this was deemed unnecessary the local leisure industry, and medical authorities combined to retain the basic facility as a charity.
      The chamber was enhanced, with a larger chamber and waiting room etc. The medical aspects were developed, gas gangrene, m.s., sport injuries and other conditions were treated.
      I had multiple sessions in about 1989 / 90 (free of charge) for trigeminal neuralga, facial pain. Theory that an embolism on a micro blood vessel may put pressure on a nerve. By increasing oxygen in the blood would allow the blood vessel to recover shrinking back reducing the pressure. Didn’t work!
      Many years later 2010 / 15, my brother had cancer and also had many sessions over a few years, he believed in its therapeutic benefits. I admitted to being a bit doubtful. We talk about the importance of antioxidants? Red wine, dark chocolate Ho! Ho! .
      I now refer you to:-
      https://www.ncbi.nlm.nih.gov/books/NBK430743/#:~:text=Oxygen%20is%20vital%20to%20sustaining,oxygen%20toxicity%20or%20oxygen%20poisoning.
      This article, 19 pages long, is slightly confusing as it refers to both hyper and hypo-oxygen scenarios. However, in the first 3 pages it emphasises the risks of the toxic effects of hyperbaric oxygen. It appears a risk / reward situation, so who knows?
      Note: I am not medically trained, an elderly retired Electrical Engineer. So just my observations.
      In a few weeks I will have survived 9 years since the announcement of my IPF. Doubtful about making a full 10th Year, but fingers crossed!
      Regards to all,
      Joe

      • #32844
        Natalie Mondor
        Participant

        Thank you Joe for the information and link to the article on oxygen toxicity.  It seems like every medication and treatment involves a balance of risk and reward. Right now I’m stepping down off prednisone, and already the pain that was gone for 6 weeks is coming back. The only thing for me without a downside (so far) is exercise. Stay safe

        Cheers,

        Natalie

    • #32905
      Jofac O’Handlin
      Participant

      Hi Natalie, I agree about exercise. My feeling is to try (against the odds) to keep going. A couple of years ago I used to talk about walking up the local headland from the sea side promenade. NOW! I can do it in very short bits with several rest stops, even with my wife pushing, hand in the middle of my back! Result, we do not do the headland very often. The last few days I have felt off colour (heat and atmosphere?) and unwilling to do our evening walk. But, have said that we must keep going, and I have felt the better for it. It would be so easy to give it a miss, and a miss, …. becoming a couch potato! So, it is fight the good fight, as long as possible.
      Sorry to hear about the return of your pain having stopped taking prednisone.
      Regards, Joe.

      • #32906
        Natalie Mondor
        Participant

        Jofac

        Thanks so much for this thoughtful message. It has cheered me up today. I’m back on 10 mg of prednisone after having a very bad day at PT. It’s only been a few days but I feel better, although not as energetic as before stepping down. I am certainly going to stay with the exercise even if it’s difficult. I am hoping to go outside but my oxygen needs at the moment keep me pretty much inside.
        I’m so happy for your success and your continued progress. Thanks again for cheering me up.
        Natalie

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