lung surgery against mac infection

This is all so interesting. Just to clarify did you have to clear the NTM with antibiotic treatment before having the resection? I am waiting on results from a recent CT scan and I am on watchful waiting - I have MAC and Abscessus. I have bronchiectasis too. I do daily airway clearance but could not tolerate the saline nebuliser. I had 14 months of treatment for NTM (3 antibiotics- rifampicin, ethambutamol and moxycycline) I had no appetite and had no quality of life. I kept going with the treatment. I was cured of it for a year then it returned. I could not cope with the side effects from the antibiotics again. I am like a skeleton of my former self. I keep going and work 3 days a week. I have to pace myself and get very fatigued. My BMI is 18 so not good. It was always around 22 so I have always been slim. Would love to hear more about the robotic lung resections from people!

This is all so interesting. Just to clarify did you have to clear the NTM with antibiotic treatment before having the resection? I am waiting on results from a recent CT scan and I am on watchful waiting - I have MAC and Abscessus. I have bronchiectasis too. I do daily airway clearance but could not tolerate the saline nebuliser. I had 14 months of treatment for NTM (3 antibiotics- rifampicin, ethambutamol and moxycycline) I had no appetite and had no quality of life. I kept going with the treatment. I was cured of it for a year then it returned. I could not cope with the side effects from the antibiotics again. I am like a skeleton of my former self. I keep going and work 3 days a week. I have to pace myself and get very fatigued. My BMI is 18 so not good. It was always around 22 so I have always been slim. Would love to hear more about the robotic lung resections from people!

@namd…do you have a Cavitary lesion ??,that is what can be removed .

I never said that my biopsy was negative ??,obviously they were positive for a bacteria that is classified in the MAC family ,but not a common one ).
The choice given to me was to take 2 years of multiple antibiotics ( which I couldn’t even do for even a week ) or if I refused treatment ,I would not have long to live .
I did a lot of research and found that surgery for cavitary masses was an option, and that the antibiotics would have never penetrated the wall of the Cavitary mass . Perhaps a last option for some ,but for me and my quality of the life ….the only one .
It was not a difficult surgery with new robotic lung resections .All of my 3 cm was removed along with surrounding nodes to prevent seeding …..my 3 moth CT was clear and I never had,and still don’t have symptoms.
I hope that clarifies everything!!!
,

@visions63
That clarifies a lot. Like you I really could not go back on that antibiotic treatment. Some people are fine with it but others are not. Thank you so much for replying so quickly.

@namd …anytime!!
Good luck and reach out anytime !!
If you are near NYC,and if needed ,Dr Robert Cerfolio ,NYU was my surgeon!

@visions63
I live in London! I have been to New York many times! You are much more advanced in the US with the treatment of NTM and bronchiectasis. It is great to hear about so many people's experiences. Thank you!

@namd ….not really ,it is not a very common disease here in the USA,more in Japan ,Korea ,maybe Hawaii……actually the bacteria that I I have is from UK ??NYU Langone is the only hospital that has a dedicated group for NTM in all of NYC.