What does "Ground Glass" in a MAC CT Scan mean?

Posted by healthybon @healthybon, Jul 21, 2023

Dr. Swenson said he saw ground glass...and it was concerning. I'm very scared........I'm scared to take the meds and I'm scared not to. What does ground glass mean?
I could get C Diff back from taking Azithromycin, (then I would have to take Vancomycin on top of the other two I'm taking). I could get oral thrush from these antibiotics, I could get severe nausea as I do with antibiotics, and if I don't take the medicine , he said eventually I could get cavities, or cough up blood (that is not happening now). then if that happens, it wouldn't be enough to just take azithromycin and ethambutol; which is all he wants me to take right now.
I need help, I feel like I'm going out of my mind with fear, indecision, and depression. I'm damned if I do, and damned if I don't.
I'm desperate for help.......I just want to curl up in my bed and stay there...FOREVER....it's too much to bear. He said if it makes you sick you'll stop...so then what...I'll get cavities and not be able to breathe?
Bon

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Sue, Volunteer Mentor | @sueinmn | Jul 21, 2023

Bon, Please go back and take a look at this discussion we all had about the subject last month.
Several people weighed in with their experiences.
Sue

healthybon | @healthybon | Jul 21, 2023

Yes I shall. Thk u!

irene5 Irene Estes | @irene5 | Jul 22, 2023

Bonnie, azithromycin and Ethambutol should be ok. The Rifampin has been found to be unnecessary. If you are unable to do the two three times a week see if you can get inhaled Arikayce. It works to kill MAC - don’t read the side effects and you will be ok. Like you I don’t like taking medication due to side effects that may or may not occur, but seriously Arikayce gave me no side effects except coughing when I did it on a daily. ( It is inhaled - goes right to your lungs). Most of us with nodular MAC have ground glass opacities on a scan.

irene5 Irene Estes | @irene5 | Jul 22, 2023

Bonnie GGO are common and are just a hazy thing that used to indicate early adinocarcinoma of the lung. Now they indicate inflammation and other things that are going on in the lung. I’ve had that for over ten years. MAC is a blessing really - now that you have a doctor you are comfortable with he will watch you and your lungs. I am so grateful for my MAC as lung cancer runs in my family so I am watched and no longer worry - hence a blessing. Listen to Sue and reread earlier posts. I’m so glad you found a doctor who seems to understand your plight.

Rick | @rstel7272 | Jul 23, 2023

Ground glass sounds scarier than it is. The term refers to the density of the nodule, so has some transparency and is a sign of an NTM infection. This should be better than a solid nodule which could be worse than than an infection. The shape and size is also very important. Round is good. 8 MM and less in diameter is good. The Dr also looks for fast growing nodules over a period of time.

maryecox | @maryecox | Jul 23, 2023

I have GGO as a result of international lung disease and am doing great. I feel fabulous! Take your meds, don’t worry and exercise! Walking is super important! The only medication I take is Cellcept, a steroid reducing drug.? Talk to your doctor if you are afraid. Good luck to you.

liz440 | @liz440 | Jul 23, 2023

I had that ground glass opacity when I had pneumonia. It does not necessarily mean MAC

oneofyou | @oneofyou | Jul 26, 2023

In reply to @irene5 "Bonnie, azithromycin and Ethambutol should be ok. The Rifampin has been found to be unnecessary. If..." + (show)

Hi Irene5, will you please enlighten me about the “Rifampin not necessary”?

irene5 Irene Estes | @irene5 | Jul 26, 2023

So apparently there are studies that show only two are necessary - the Rifampin is not tolerated well by many patients and didn’t make a difference apparently in success rates of getting rid of MAC. I’m pretty sure I found that out when I was starting the Arikayce and needed to take the Big 3 as well ( which I never tolerated well). My ID doctor told me that, and I read some articles on it. I’ll try to find them tonight and get back to you with that information . ( irene)

irene5 Irene Estes | @irene5 | Jul 27, 2023

I researched quite a bit and only found two studies that discuss taking only the two meds. One was from Stamford Medicine and the other from US National library of medicine. I know I have one printed out somewhere that talks about it as well. I do know my ID doctor (who is excellent) told me that as well. Sorry I didn’t get back to you last night. My “researching” took me longer than I expected. ( irene5)