Cavitary MAC - what makes cavity shrink?
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.
Hi Helen-
Glad you are home after your NJH visit.
Regarding above reply to Rick, good attitude and thoughts.
Barbara
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?
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
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.
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.
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.
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.
@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.
@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?
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.