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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@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.

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If you are unable to produce sputum for culture, you might need a bronchoscopy to see if MAC is still present.
Worth trying chest percussion with a physical/ respiratory therapist first though
How long have you been on treatment?

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@dulwich

If you are unable to produce sputum for culture, you might need a bronchoscopy to see if MAC is still present.
Worth trying chest percussion with a physical/ respiratory therapist first though
How long have you been on treatment?

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Thank you for your comment. Since April and I will ask my pulmonologist for chest percussion and discuss how to know what’s in my lungs. That was my thought as well.

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great news! Thanks for sharing. I also had a large cavity bigger than 3 cm. I took antibiotics for 12 months. I didn't have anything more than mild symptoms. My doc said my cavity had resolved and healed but it didn't go away. It. shrunk and the lining changed alot, and I think it is scar. But I have "no active infection". I do a lot of airway clearance even though I don't cough anything up, because I hear helps prevent infection from returning.

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@maureen2022

great news! Thanks for sharing. I also had a large cavity bigger than 3 cm. I took antibiotics for 12 months. I didn't have anything more than mild symptoms. My doc said my cavity had resolved and healed but it didn't go away. It. shrunk and the lining changed alot, and I think it is scar. But I have "no active infection". I do a lot of airway clearance even though I don't cough anything up, because I hear helps prevent infection from returning.

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Thanks for the information! That's just crazy. It just must be that antibiotics and the nebulizing works better on some people because I've only been doing the 6 months! Within 2 weeks of me starting the antibiotics they could see a remarkable difference. And then my last CT scan 3 months ago. It looked way better but the cavity was still there, and now everything's just kind of healed. Healed. It is great news. I'm so happy about this! Thanks for your message. I appreciate it!

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@maureen2022

great news! Thanks for sharing. I also had a large cavity bigger than 3 cm. I took antibiotics for 12 months. I didn't have anything more than mild symptoms. My doc said my cavity had resolved and healed but it didn't go away. It. shrunk and the lining changed alot, and I think it is scar. But I have "no active infection". I do a lot of airway clearance even though I don't cough anything up, because I hear helps prevent infection from returning.

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That is fantastic news, Maureen. Thank you for sharing the importance of doing airway clearance even when we don’t have anything to cough up. As Pamela McShane says from the University of Texas at Tyler, just as we floss our teeth when there’s nothing stuck between them, that’s how we should think of airway clearance. It’s about breaking up the biofilm. 💕Linda Esposito

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All these comments are great to hear. I thought I was overly positive about my recent CT showing no more infection in my lung. I never really had many signs of having MAC but azithromycin made me feel better and apparently got rid of the infection without the other 2 antibiotics. Of course I have also been taking all kinds of immune building supplements. I will continue the azithromycin to keep it away but looks like I have avoided having to tell the ID doctor that I wasn’t going to take the other 2 antibiotics anyway.
It is finally good to hear people on this chat that have gotten rid of the infection and that are doing good. Yeah!

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I completely agree! It's wonderful to know that other people have gotten rid of this. Honestly, I think it has something to do with your DNA or something because some people can nebulize and take a lot of antibiotics and just not have a lot of luck. And then some people have all the luck with the antibiotics and the nebulizing. I agree that we should definitely stay on the azithromycin, and do anything else we can do because Mac likes to hide! My doctor wants me to keep taking everything for another 6 months. Right up through a year. He said. If I don't have any reoccurrence then they'll probably slowly take me off things. But I'd like to stay on the azithromycin and I hope he'll have me do that. I'm really happy to hear that other people have had this clear up as well. I was a little scared because of how quickly mine was going from one lung to the next. They had me scheduled for a CT guided lung biopsy and I was terrified! I went into that room and I was nutcase, I was crying. I didn't know I was going to have to be awake for this. They did the first initial CT scan and it showed such improvement just 2 weeks after I started taking the antibiotics that they said I didn't have to have the guided lung biopsy. I was so happy. Things only got better from there. The reason why they wanted to do that is they always think that this could be cancer when you have a cavity like that. That's thick walled. I think back during the last 6-7 months with this Mac and it's been a rocky roller coaster, but I wouldn't trade my experience for the world because I can help other people because of my experience and so can all of us on here! ❤️

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@bellsina71

I completely agree! It's wonderful to know that other people have gotten rid of this. Honestly, I think it has something to do with your DNA or something because some people can nebulize and take a lot of antibiotics and just not have a lot of luck. And then some people have all the luck with the antibiotics and the nebulizing. I agree that we should definitely stay on the azithromycin, and do anything else we can do because Mac likes to hide! My doctor wants me to keep taking everything for another 6 months. Right up through a year. He said. If I don't have any reoccurrence then they'll probably slowly take me off things. But I'd like to stay on the azithromycin and I hope he'll have me do that. I'm really happy to hear that other people have had this clear up as well. I was a little scared because of how quickly mine was going from one lung to the next. They had me scheduled for a CT guided lung biopsy and I was terrified! I went into that room and I was nutcase, I was crying. I didn't know I was going to have to be awake for this. They did the first initial CT scan and it showed such improvement just 2 weeks after I started taking the antibiotics that they said I didn't have to have the guided lung biopsy. I was so happy. Things only got better from there. The reason why they wanted to do that is they always think that this could be cancer when you have a cavity like that. That's thick walled. I think back during the last 6-7 months with this Mac and it's been a rocky roller coaster, but I wouldn't trade my experience for the world because I can help other people because of my experience and so can all of us on here! ❤️

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The only place where I don't agree with your very encouraging post is when you say, "... But I'd like to stay on the azithromycin and I hope he'll have me do that..." That's a very bad idea for a couple of reasons.
First, even though we use it routinely with MAC, and people talk about using a Z-Pak all the time, it really is a "big gun" and needs to be reserved for when it is truly needed. If you stay on azithromycin alone at the end of your treatment, any MAC left in your lungs will become resistant to it. If you later have a bad flare, what will they give you?

Otherwise, please keep on sharing - it helps to hear success stories.
Sue

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@sueinmn

The only place where I don't agree with your very encouraging post is when you say, "... But I'd like to stay on the azithromycin and I hope he'll have me do that..." That's a very bad idea for a couple of reasons.
First, even though we use it routinely with MAC, and people talk about using a Z-Pak all the time, it really is a "big gun" and needs to be reserved for when it is truly needed. If you stay on azithromycin alone at the end of your treatment, any MAC left in your lungs will become resistant to it. If you later have a bad flare, what will they give you?

Otherwise, please keep on sharing - it helps to hear success stories.
Sue

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Yes you are totally right Sue! After you sent this to me I thought about it and abtibiotics should really only be used if you have a reason to use them. It's why we have so many problems now with antibiotics not working; it's because they've been overused and abused. I'm only thinking because I don't ever want this to return, but I know they're going to be watching me and doing periodic scans and the cultures. So if it does return it does and at least they'll catch it early. There is some doubt whether this actually ever even goes away completely. I think it just hides and when it gets an opportunity it grows. But you're completely right. I agree with you 100%!
Thanks for your mail and reminding all of us that we shouldn't be using these antibiotics if we don't need them.

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@bellsina71

Yes you are totally right Sue! After you sent this to me I thought about it and abtibiotics should really only be used if you have a reason to use them. It's why we have so many problems now with antibiotics not working; it's because they've been overused and abused. I'm only thinking because I don't ever want this to return, but I know they're going to be watching me and doing periodic scans and the cultures. So if it does return it does and at least they'll catch it early. There is some doubt whether this actually ever even goes away completely. I think it just hides and when it gets an opportunity it grows. But you're completely right. I agree with you 100%!
Thanks for your mail and reminding all of us that we shouldn't be using these antibiotics if we don't need them.

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No antibiotics here - my routine is airway clearance, keep my asthma controlled, healthy diet, exercise, stay away from sick people. Probably a healthy dose of good luck too.
Sue

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