1. < MAC & Bronchiectasis

Cavitary MAC Resolved Completely on CT Scan?

Posted by bellsina71 @bellsina71, Sep 26, 2023

Hello everyone! I haven't been posting for a while because I've been so busy since I had my surgery in March. Everything's been going really great though. I think I told everyone they got all the cancer of the intestine, so I was just working on getting rid of the MAC!

I had a CT scan done about a week ago and the results came back and what it says is: complete resolution of right sided pulmonary cavitary lesion and also says that there are no nodules and no consolidation. There was quite a bit of consolidation when they started and tons of nodules. And I had a large cavity..3.5". I only started treatment in March for this. It seems crazy that this would resolve so quickly. I had been taking the Airikayce for the past couple months and prior to that was only on two of the three antibiotics because of a interaction with another medication. I was on the ethambutol and azithromycin. So I guess I'm one of those cases where I didn't need all three of those big antibiotics. My question is that I was told by my ID doctor that cavities don't go away. They can collapse, is that with this means? If it's completely resolved? I'm a little confused. I don't see my infectious disease doctor until November. I'm going to have to put a call into him. I guess. I did see my cancer doctor last week. He did look at the scan and he thought that it looked like my lung grew back. I told him that lungs don't grow back-obviously it's not his specialty! He did say it look like there was lung tissue there now where are the cavity had been. Who's He didn't have the right computer software to look at the CT scan like the radiologist can, but said that it looked a lot better than it did 3 months ago. Anyway, I was just wondering if anyone could give me some interpretation of what that could possibly mean? Does it sound like the cavity actually collapsed if it says complete resolution? Previous CT scans it would say that it was an abscess or it would say it was a cavity, I think it was a combination of both depending if it was infected or not...

Anyway, any advice anyone can give would be great. I hope everyone's doing really well on here! There's a couple people I've kept in contact with on here. In my lowest of low times this was the best site that I've ever been on for people to really be helpful and uplifting!! Thank you all!!!! Love and healing!!!!!!

Angela

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Sep 27, 2023

I also had a cavity that “collapsed” and I no longer needed surgery to remove.

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bellsina71 | @bellsina71 | Sep 27, 2023

Is that what this probably means? Is that it collapsed? I guess that's what I'm wondering. Does completely resolved means that it's gone? I've heard of collapses happening, I didn't think they were that common. I'm shocked if that's what happened with me. Because my cavity was so big. I'm really happy for you though.
Thank you!

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liangni1 | @liangni1 | Sep 27, 2023

Angela ,Thank you for your good news, and congratulations to you, wish you keep healthy. Your recovery is very encouraging.I also have a tons of nodules,I had being on big 3 antibiotics and started Arikayce 8 weeks ago. My sputum reduced compared with the time just starting Arikayce.My sputum sometimes contain red blood spots,not much,do anyone had same kind of symptoms? What it means?serious ？

REPLY
1 reply
bellsina71 | @bellsina71 | Sep 27, 2023
In reply to @liangni1 "Angela ,Thank you for your good news, and congratulations to you, wish you keep healthy. Your..." + (show)
@liangni1

Angela ,Thank you for your good news, and congratulations to you, wish you keep healthy. Your recovery is very encouraging.I also have a tons of nodules,I had being on big 3 antibiotics and started Arikayce 8 weeks ago. My sputum reduced compared with the time just starting Arikayce.My sputum sometimes contain red blood spots,not much,do anyone had same kind of symptoms? What it means?serious ？

Jump to this post

I never had a lot of coughing or sputum. When I started the Arikayce is when I was able to actually cough stuff up. I think it's a Good thing to be able to cough anything up. I honestly don't really think the blood is that uncommon because your lung is irritated. It could be irritation from the nebulizing treatments or from the infection itself. I coughed up a lot of blood one night, that's how I found out I had this infection. They saw a huge mass on the CT scan which was actually just an abscessed cavity, but initially everyone thought that was lung cancer. I was so scared.
I'm a little shocked as the how quickly the antibiotics worked for me, and then going on the nebulizer really push things over the edge. The Arikayce definitely works because 3 months ago I had this cavity and now it's resolved. I also had tons of nodules. They were actually really concerned because within a month I had formed dozens of new nodules and they said they never saw someone get that many new nodules and such a short period of time. They were a little bit scared. I was also starting to get the little nodules in my other lung. The nodules started to clear up with the antibiotics and that's about the time I went on the nebulizer. So, there's definitely hope! My cavity was large! 3.5"!! I never had any symptoms either, with a cavity that big in my lung you would think that I would be short on breath or something. But nothing!

Just keep taking the antibiotics everyday and nebulizing everyday. Keep doing what you're doing. And I also tried to take deep breaths throughout the day, especially if I was somewhere where it was fresh air, I would try to get that deep down in my lungs as much as possible. Not sure if it helped. But it sure did feel good. I didn't change a lot of other things in my life. However. I am really hoping that things stay cleared for a while now, like I said, I'm just going to continue taking all my antibiotics and nebulizing until I see my doctor. I'm sure that's what he will want me to do anyway for a while to make sure the next CT scanner too. Come back clear. You know how this Mac can hide!!! Haha

Just keep having a positive attitude! Things are going to get better.

Angela

REPLY
1 reply
suzyqueue | @suzyqueue | Sep 28, 2023

I believe the combination of the antibiotics and the Arikayce is why you had success. The special nurse that came to my house to demonstrate the Arikayce stated that there are many cases where people converted in a short amount of time with adding the Arikayce to the other treatment of antibiotics and success in the cavities collapsing. Great news! Hopefully your doctors will keep monitoring the mac since its so susceptible to return.

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lilianna | @lilianna | Sep 28, 2023

I do not have cavities but a lot of nodules on both lungs. I had a CTscan last week and the results show there is no change and things are stable and the mucus plugs are still there like last time. I understood that taking antibiotics should make some change for better. The doctor says it is good news but do the antibiotics even work? I do not cough up anything, sometimes a tiny bit of clear stuff so its never enough to send to the lab. I keep sterile cups at home just in case but there is nothing. So practically the doctors do not check if my MAC converted and i am very nervous about the situation. Has anybody experienced something similar. I am seeing my pulmonologist in two weeks.

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2 replies
Rick | @rstel7272 | Sep 28, 2023

If you catch the cavities before scar tissue forms on them you can have success in treatment. I am not that case, 5 years and counting.

REPLY
bellsina71 | @bellsina71 | Sep 28, 2023
In reply to @lilianna "I do not have cavities but a lot of nodules on both lungs. I had a..." + (show)
@lilianna

I do not have cavities but a lot of nodules on both lungs. I had a CTscan last week and the results show there is no change and things are stable and the mucus plugs are still there like last time. I understood that taking antibiotics should make some change for better. The doctor says it is good news but do the antibiotics even work? I do not cough up anything, sometimes a tiny bit of clear stuff so its never enough to send to the lab. I keep sterile cups at home just in case but there is nothing. So practically the doctors do not check if my MAC converted and i am very nervous about the situation. Has anybody experienced something similar. I am seeing my pulmonologist in two weeks.

Jump to this post

I also didn't cough very much and could not even give a sputum sample until I got on the Arikayce which really loosen things up, and I could actually cough stuff all the time. Are you on that yet? If you're not, you should ask your doctor about getting on that because it really helps!!!!

REPLY
1 reply
lilianna | @lilianna | Sep 28, 2023
In reply to @bellsina71 "I also didn't cough very much and could not even give a sputum sample until I..." + (show)
@bellsina71

I also didn't cough very much and could not even give a sputum sample until I got on the Arikayce which really loosen things up, and I could actually cough stuff all the time. Are you on that yet? If you're not, you should ask your doctor about getting on that because it really helps!!!!

Jump to this post

Thank you for your response; did you nabulize it? I was on Amikacin infussion for three months with a combination of other meds (rifabutin and azithromycin) - I still coughed a little but was not coughing up anything. I will definitely ask my ID about it.

REPLY
liangni1 | @liangni1 | Sep 29, 2023
In reply to @bellsina71 "I never had a lot of coughing or sputum. When I started the Arikayce is when..." + (show)
@bellsina71

I never had a lot of coughing or sputum. When I started the Arikayce is when I was able to actually cough stuff up. I think it's a Good thing to be able to cough anything up. I honestly don't really think the blood is that uncommon because your lung is irritated. It could be irritation from the nebulizing treatments or from the infection itself. I coughed up a lot of blood one night, that's how I found out I had this infection. They saw a huge mass on the CT scan which was actually just an abscessed cavity, but initially everyone thought that was lung cancer. I was so scared.
I'm a little shocked as the how quickly the antibiotics worked for me, and then going on the nebulizer really push things over the edge. The Arikayce definitely works because 3 months ago I had this cavity and now it's resolved. I also had tons of nodules. They were actually really concerned because within a month I had formed dozens of new nodules and they said they never saw someone get that many new nodules and such a short period of time. They were a little bit scared. I was also starting to get the little nodules in my other lung. The nodules started to clear up with the antibiotics and that's about the time I went on the nebulizer. So, there's definitely hope! My cavity was large! 3.5"!! I never had any symptoms either, with a cavity that big in my lung you would think that I would be short on breath or something. But nothing!

Just keep taking the antibiotics everyday and nebulizing everyday. Keep doing what you're doing. And I also tried to take deep breaths throughout the day, especially if I was somewhere where it was fresh air, I would try to get that deep down in my lungs as much as possible. Not sure if it helped. But it sure did feel good. I didn't change a lot of other things in my life. However. I am really hoping that things stay cleared for a while now, like I said, I'm just going to continue taking all my antibiotics and nebulizing until I see my doctor. I'm sure that's what he will want me to do anyway for a while to make sure the next CT scanner too. Come back clear. You know how this Mac can hide!!! Haha

Just keep having a positive attitude! Things are going to get better.

Angela

Jump to this post

Thank you Angela,you give me hope and courage!Wish you doing better and better, regaining health!

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