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Cavitary MAC - what makes cavity shrink?

Posted by helen1000 @helen1000, Jan 1 6:41pm

Happy new year everyone,

I have been doing some research on Cavitary MAC - as I see some people's cavities shrink/close fast. I try to figure out what shrink a cavity. Is it based on drug sensitivity test? If you are sensitive to Arikayce, your cavity shrink fast? Or if your lung ventilation/air flow is better, the medicine can get into cavity quickly? Why some people's cavities are stubborn while some others' go away fast?

I checked with a few doctors and they all have different opinions. Some said cavity never goes away, some advise me to try arikayce. Some say that my cavity has a 50% chance to close. NJH says that a cavity less than 2cm has a better chance to close. Some patients have 3cm cavity ( thick walled) still close quickly. Some others have cavity for over 18 months and still there. So what is the deciding factor?

Any input will be appreciated. I wish everyone regain their health in 2025!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

blm1007blm1007 | @blm1007blm1007 | 5 days ago
In reply to @helen1000 "Yes Rick. It is chronic and progresses sometimes. That brings us fear, anger and uncertainty in..." + (show)
@helen1000

Yes Rick. It is chronic and progresses sometimes. That brings us fear, anger and uncertainty in life. It is also hard to stay positive among these emotions. But new medicine and technology are also on the way. There is always a hope. I also encourage myself that it is a battle, a very hard battle and it needs a lot of courage, hope, self-encouragement and team work. If we can't cure it, we slow down its progress, which is also a success. We gain time for us, and that gives an opportunity too.

Jump to this post

Hi Helen-
Glad you are home after your NJH visit.
Regarding above reply to Rick, good attitude and thoughts.
Barbara

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1 reply
helen1000 | @helen1000 | 5 days ago
In reply to @wolfplanetzero "I'm currently being treated for cavitary MAC with the big three antibiotics. Even though there was..." + (show)
@wolfplanetzero

I'm currently being treated for cavitary MAC with the big three antibiotics. Even though there was only one positive sputum test, because of a cavitary lesion and the severity of my symptoms, primarily extreme productive coughing, my doctors thought it was a good idea to start treatment right away. The fact that the cavity's walls had thickened since my last CT in 2022 was another factor. My ID doc wants to add arikayce to the regimen, but we are running into insurance problems. Best of luck to all members.

Jump to this post

Sorry for your insurance problem. Will you be able to try Amikacin inhaled?

My insurance will approve Arikayce this month, after I took antibiotics for six months.

My cavity is also thick walled. Does your pulmonologist have any comment on thick walled cavity? Is it harder to close?

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1 reply
dispatchpat | @dispatchpat | 5 days ago

Please forgive me for inserting a question about Phage therapy into this thread. I followed your earlier discussions to the point where you said you had a consultation invitation in April 2024. I searched for more from you after this date and I'm concerned to hear of your latest journey into the Big 3 +

If you would be so kind, and I do understand that you are in a whole other progression of concerns, but would you mind filling me in on what UZ Leuven has or doesn't have to offer us as far as hope for an alternative to the Big 3? As I write this, it occurs to me that perhaps one of the admission requirements might be "failed antibiotic treatment"... I am grateful for all that you have shared so far. And, I wish you continued strength, courage and hope in facing this Bx/NTM challenge

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1 reply
wolfplanetzero | @wolfplanetzero | 5 days ago
In reply to @helen1000 "Sorry for your insurance problem. Will you be able to try Amikacin inhaled? My insurance will..." + (show)
@helen1000

Sorry for your insurance problem. Will you be able to try Amikacin inhaled?

My insurance will approve Arikayce this month, after I took antibiotics for six months.

My cavity is also thick walled. Does your pulmonologist have any comment on thick walled cavity? Is it harder to close?

Jump to this post

Thanks, Helen1000. My ID doc is planning to submit an order for compounded amikacin for inhalation, but I don't know yet if my insurance will pay for it.
I'm going to ask my lung doc if thick-walled cavities are tougher to treat and to shrink, when I see her in February. In the South Korean study, a reduction in cavity size but not thinning of cavity walls had a higher association with microbiological cure, for what it's worth. Best of luck to you.

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1 reply
BlueSplashGirl/ Carolyn | @bluesplashgirl | 4 days ago

Hello Helen, I had a cavity about 2 years ago. Once it was diagnosed I stopped using the nebulizer and started only using dry salt inhaler with 99% pure sodium chloride and also an infra red concentration on my lungs with the wand. When I went to the Mayo in Rochester to begin preparation for an up coming VAT procedure to remove the cavity, the CT scan indicated that the cavity had collapsed and no surgery needed. I did share with my doctor what I had done but since it is outside of the framework of medicine he thought it was interesting but anecdotal. I have a minor degree in TCM and felt that inhaling cold, wet into my lungs was not the right thing for me and the cavity. That's why I changed tack. Here is a link to PUBMed about new research on MAC. It is very in-depth and full of medical speak. You may find it interesting. https://pmc.ncbi.nlm.nih.gov/articles/PMC7862709/#s7
The prevalence of MAC infection is growing world wide and the research continues. Hope this helps.

REPLY
1 reply
helen1000 | @helen1000 | 4 days ago
In reply to @wolfplanetzero "Thanks, Helen1000. My ID doc is planning to submit an order for compounded amikacin for inhalation,..." + (show)
@wolfplanetzero

Thanks, Helen1000. My ID doc is planning to submit an order for compounded amikacin for inhalation, but I don't know yet if my insurance will pay for it.
I'm going to ask my lung doc if thick-walled cavities are tougher to treat and to shrink, when I see her in February. In the South Korean study, a reduction in cavity size but not thinning of cavity walls had a higher association with microbiological cure, for what it's worth. Best of luck to you.

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wolfplanetzero,
Amikacin Inhaled is much cheaper than Arikayce, per my research, and probably you can afford it. Yes please keep me posted of your doctor's answer about thick walled cavity. I have heard stories about thick walled collapsed or not collapsed, different stories.
Are you sensitive to Amikacin? What is your drug test result? I am sensitive to arikayce inhaled but not sensitive to amikacin IV. If you can let me know your value, that will be helpful.

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1 reply
helen1000 | @helen1000 | 4 days ago
In reply to @blm1007blm1007 "Hi Helen- Glad you are home after your NJH visit. Regarding above reply to Rick, good..." + (show)
@blm1007blm1007

Hi Helen-
Glad you are home after your NJH visit.
Regarding above reply to Rick, good attitude and thoughts.
Barbara

Jump to this post

Yes blm1007, fear or anxiety do not help much. Research and attitude count more. Even if I can't be cured, life still has to be going on, the responsibilities are still there to take as we are taking different roles in life.

REPLY
helen1000 | @helen1000 | 4 days ago
In reply to @dispatchpat "Please forgive me for inserting a question about Phage therapy into this thread. I followed your..." + (show)
@dispatchpat

Please forgive me for inserting a question about Phage therapy into this thread. I followed your earlier discussions to the point where you said you had a consultation invitation in April 2024. I searched for more from you after this date and I'm concerned to hear of your latest journey into the Big 3 +

If you would be so kind, and I do understand that you are in a whole other progression of concerns, but would you mind filling me in on what UZ Leuven has or doesn't have to offer us as far as hope for an alternative to the Big 3? As I write this, it occurs to me that perhaps one of the admission requirements might be "failed antibiotic treatment"... I am grateful for all that you have shared so far. And, I wish you continued strength, courage and hope in facing this Bx/NTM challenge

Jump to this post

@dispatchpat, it is okay. we can discuss any topic as long as it is related to treatment. I am taking cl, et and az daily and inhaled amikacin three times a week, not big 3.
UZ Leuven gave me a televisit. They were very honest about the phage therapy. It is still at experiment stage and there is no evidence that it can help MAC patients. So I did not go there in person. But as I heard, NYU, Mayo Clinic, Sandiago University and Pittsburg University are all making research on it. Maybe after 5 years, there will be a breakthrough. Antibiotics is still the best treatment so far, and within 10 years, as advised by my pulmonologist in NYU.

REPLY
helen1000 | @helen1000 | 4 days ago
In reply to @bluesplashgirl "Hello Helen, I had a cavity about 2 years ago. Once it was diagnosed I stopped..." + (show)
@bluesplashgirl

Hello Helen, I had a cavity about 2 years ago. Once it was diagnosed I stopped using the nebulizer and started only using dry salt inhaler with 99% pure sodium chloride and also an infra red concentration on my lungs with the wand. When I went to the Mayo in Rochester to begin preparation for an up coming VAT procedure to remove the cavity, the CT scan indicated that the cavity had collapsed and no surgery needed. I did share with my doctor what I had done but since it is outside of the framework of medicine he thought it was interesting but anecdotal. I have a minor degree in TCM and felt that inhaling cold, wet into my lungs was not the right thing for me and the cavity. That's why I changed tack. Here is a link to PUBMed about new research on MAC. It is very in-depth and full of medical speak. You may find it interesting. https://pmc.ncbi.nlm.nih.gov/articles/PMC7862709/#s7
The prevalence of MAC infection is growing world wide and the research continues. Hope this helps.

Jump to this post

@bluesplashgirl, I am so happy to hear that your cavity collapsed. It looks like you are doing the right thing for yourself. It probably fits you and it is amazing. I am not very into TCM but I do have family member cured by Chinese herbal medicine by his college classmate. I will look into your article and thanks a lot for sharing.

May I ask you how long you tried Arikayce? Are you sensitive to this drug per your drug test?

REPLY
1 reply
BlueSplashGirl/ Carolyn | @bluesplashgirl | 4 days ago
In reply to @helen1000 "@bluesplashgirl, I am so happy to hear that your cavity collapsed. It looks like you are..." + (show)
@helen1000

@bluesplashgirl, I am so happy to hear that your cavity collapsed. It looks like you are doing the right thing for yourself. It probably fits you and it is amazing. I am not very into TCM but I do have family member cured by Chinese herbal medicine by his college classmate. I will look into your article and thanks a lot for sharing.

May I ask you how long you tried Arikayce? Are you sensitive to this drug per your drug test?

Jump to this post

I didn’t do Arikayce. The side effects were too off putting and I was tired of being sick from the “cures”. Good luck in your journey.

REPLY
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