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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Renee | @rchildress | Oct 2, 2023
In reply to @bellsina71 "I completely agree! It's wonderful to know that other people have gotten rid of this. Honestly,..." + (show)
@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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I agree with you too. What will be will be. I think I have the willpower to feel good for years. Someday it may get me but untill then I’ll be rolling along😃

REPLY
judi55 | @judi55 | Oct 5, 2023
In reply to @sueinmn "The only place where I don't agree with your very encouraging post is when you say,..." + (show)
@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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I've been going to a pulmonologist for three years now who requests 2 CT scans every six months and has a wait and see attitude. I'm getting to where I don't want repeated scans because that doesn't sound healthy, but I don't want to take a heavy course of antibiotics either. I eat well and exercise so this condition doesn't affect my life at this point but my concern is waiting until it does when something might have been done to prevent a worsened condition. Thoughts?

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2 replies
judi55 | @judi55 | Oct 5, 2023
In reply to @judi55 "I've been going to a pulmonologist for three years now who requests 2 CT scans every..." + (show)
@judi55

I've been going to a pulmonologist for three years now who requests 2 CT scans every six months and has a wait and see attitude. I'm getting to where I don't want repeated scans because that doesn't sound healthy, but I don't want to take a heavy course of antibiotics either. I eat well and exercise so this condition doesn't affect my life at this point but my concern is waiting until it does when something might have been done to prevent a worsened condition. Thoughts?

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1 CT scan every six months :):)

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 5, 2023
In reply to @judi55 "1 CT scan every six months :):)" + (show)
@judi55

1 CT scan every six months :):)

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Are you also having a sputum culture done at that appointment? That would be conclusive on whether your lungs are infected, or if the infection is staying at a low level.
Also, are you doing daily airway clearance to keep your lungs a mucus free as possible?
Sue

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judi55 | @judi55 | Oct 5, 2023

I do not have a sputum culture done. I usually only cough with some production after eating causing me to diagnose myself with GERD 🙂 I don't do daily airway clearance mainly because I knew nothing about that until reading these posts. My doctor sees me for about 5 min to tell me either something's less in size or he sees something new. His last question was: Were you ever exposed to asbestos? Growing up and teaching in the Florida school system definitely exposed me to asbestos. My thoughts after that visit was the need to check on finding another doctor.

The information from this site has been truly helpful and appreciated.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 5, 2023
In reply to @judi55 "I do not have a sputum culture done. I usually only cough with some production after..." + (show)
@judi55

I do not have a sputum culture done. I usually only cough with some production after eating causing me to diagnose myself with GERD 🙂 I don't do daily airway clearance mainly because I knew nothing about that until reading these posts. My doctor sees me for about 5 min to tell me either something's less in size or he sees something new. His last question was: Were you ever exposed to asbestos? Growing up and teaching in the Florida school system definitely exposed me to asbestos. My thoughts after that visit was the need to check on finding another doctor.

The information from this site has been truly helpful and appreciated.

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I am thinking perhaps your doctor is not really familiar with treating Bronchiectasis and MAC. Perhaps it is time to seek out another specialist in your area, or at the Mayo Clinic in Jacksonville if you are still in Florida.
Asbestos exposure is not typically linked to either Bronchiectasis or to MAC infections, so can you tell us what led to your diagnosis?
Sue

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1 reply
judi55 | @judi55 | Oct 5, 2023
In reply to @sueinmn "I am thinking perhaps your doctor is not really familiar with treating Bronchiectasis and MAC. Perhaps..." + (show)
@sueinmn

I am thinking perhaps your doctor is not really familiar with treating Bronchiectasis and MAC. Perhaps it is time to seek out another specialist in your area, or at the Mayo Clinic in Jacksonville if you are still in Florida.
Asbestos exposure is not typically linked to either Bronchiectasis or to MAC infections, so can you tell us what led to your diagnosis?
Sue

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The doctor diagnosed both MAC and a question of asbestos exposure to my CT scans. I do agree that I need to find someone else. I feel in the dark about this condition.

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 5, 2023
In reply to @judi55 "The doctor diagnosed both MAC and a question of asbestos exposure to my CT scans. I..." + (show)
@judi55

The doctor diagnosed both MAC and a question of asbestos exposure to my CT scans. I do agree that I need to find someone else. I feel in the dark about this condition.

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Can you tell us generally where you are located so we can help you find a well-versed doctor?
Sue

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Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 5, 2023
In reply to @judi55 "Volusia County and thank you" + (show)
@judi55

Volusia County and thank you

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Help?? Not sure where that is. If I said Anoka County or Hidalgo County, it probably wouldn't tell you where I live either. Nearby cities are better for helping pinpoint location.
Sue

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