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Anyone have cavitary MAC?

MAC & Bronchiectasis | Last Active: Sep 12, 2023 | Replies (67)

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Hello Group,
I also refused Arikayce because of the potential hearing loss. I already have tinnitus so I just didn’t want to risk it. I was told by my Mayo doc that as long as there are cavities the Big 3 drugs will not be delivered to that area for lack of blood supply in the cavities. Seemed like a losing battle. I followed my gut and stopped nebulizing in November and in February the cavity had collapsed. Go figure. I wish us all the best of luck with this sneaky disease. It can be frustrating and disheartening, to say the least.

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Replies to "Hello Group, I also refused Arikayce because of the potential hearing loss. I already have tinnitus..."

Hi @bluesplashgirl, @melissa08, @maureen2022, @onana, @extracare808 and @colleenyoung

This is my first post after joining this forum last week. I am a 56 year old woman with a history of bronchiectasis. During descent on an international plane flight in early June, I had terrible chest pain and ended up in the ER. They found a 1.5 cm cavitary and sent me immediately back to US. Fortunately I live near Mayo Jax and my doctors are there. My questions for you guys are -- other than the cavity and the plane episode (which I think had to do the depressurization of the plane?) I have no symptoms: no cough, no sputum, no fatigue, weigh loss, shortness of breath, etc. I do have chest wall pain but I often get costochondritis when I have something wrong in my body. My first MAC test showed 17 colonies and my second one is pending. I am wondering does having a cavity mandate the Big 3 even though I have no other pulmonary symptoms? My Mayo doctor absolutely wants to put me on all 3 plus arikayce right off the bat if my second culture is also positive but based on some of the things I have read on this forum, it doesn't seem so clear cut to me. HAs anyone every had their cavity go away without the big 3 (I am doing 7% saline twice a day)? has anyone ever done any "watchful waiting" -- seeing if symptoms develop or getting CT scans to see if the cavity grows? Thanks for any input!!