Newly Diagnosed Questions

Newly diagnosed with MAC and just saw my infectious disease doctor today. Although I have a 3.2 CM hole in my long, he said it's actually a mild case right now. He's put me on the big three, I start one every few days. He's hoping for a good outcome. I was wondering if anyone else has been requested to see an immunologist after getting this? He is curious to know how I would have gotten this, and doesn't believe that the cancer would have made my immune system compromised enough to have this. He believes that I've had it for at least a few years, but no one knows for sure. I was just curious if anyone else ever found out another reason why they may have gotten the Mac? Or went to an immunologist and they may not all just figured out what was wrong with them? I'm not sure what they actually even test for or do. If anyone has any good suggestions about the antibiotics let me know, I hope none of them make me sick! Thanks for all your help and support 🤗 Angela

Angela - If I remember correctly, you have surgery scheduled this week. If so, please call the surgeon about whether you should begin now or wait until after surgery. Starting this antibiotic regimen in the midst of a major surgery may be very difficult, especially not knowing how you will react to each drug, alone or in combination with any pain meds, blood thinners or antibiotics the surgeon may prescribe.

MAC grows very slowly, so the risk of waiting a few more weeks to begin treatment is very low.

I think you may be asking whether to see an infectious disease doctor. The answer is "It depends" - if you tolerate the antibiotics well, and the MAC begins to go away (can take up to 2 years), there may be no need. If, on the other hand, the infection does not respond to the antibiotics, or you do not tolerate them well, adding an ID doc to your team can be very helpful, especially if they work together with the lung doc.

Most of us have no idea when or where we acquired our MAC infection - it is in the soil, air and water - it is just a matter of having some disease or illness that makes our lungs susceptible, and it sets up a cozy colony. I had mine for at least 3 years, more likely 5, before it was accurately diagnosed. I may have gotten it in Texas or Florida or Alabama, or in my own garden in Minnesota.

Good luck with your surgery! I'll be thinking of you.
Sue

Thank you so much Sue! My surgery and all my doctors are through Aurora which is a major hospital in my area, they all communicate and work together as a team. While I was in my infectious disease doctor appointment today he was actually messaging with my surgeon. So they are going to start me on the medication starting today, and then they'll continue it while I'm in the hospital which I'll be in for about a week, maybe less depending on how fast my intestines start back up again. He's starting me on one drug every 5 days. So the next drug I start will be under the care of hospital staff. I think he's starting me on the easiest one first. I'm hoping they'll be no complications. I was a little surprised he didn't want to wait until after the surgery but he said that there would be no reason to wait. That they shouldn't affect anything with the surgery. My surgery has been changed to Thursday morning also so I we'll have only taken a couple doses by the time I'm admitted if they wanted me to stop something. My infectious disease doctor said he was going to come and see me while I was in the hospital after the surgery. I'm glad I am going to a place that the doctors all work together because everyone kind of needs to be on the same page with everything going on with me, and it's kind of nice to have all my doctors under one roof for me also because I can go on my app and look at any test from any one of my doctors, or email any one of them. Thank you for all your information and help!! You know so much about this!! 🤗

Angela

This morning is your surgery, I believe.
Sending healing thoughts and support your way — you will do GREAT and what a relief to know the cancer is out and you can just work on healing.
I know you are taking care of a grandchild — do you have a support system there to help you?
Keep us posted!

Edit —- oops just read the surgery is canceled til Thursday.

I actually had the surgery on Thursday, so I've been in recovery the last 2 days. They're doing another lung biopsy on Monday though because the CT scan is showing the consolidation moving so quickly and a bunch of new lung nodules from 2 months ago. This is nothing to do with the surgery but obviously they decided while I'm here they're just going to investigate more. It scares me.! I'm in a lot of pain!
I do have a good support system!! Thank you so much for your concern. I really appreciate it 😃

Sorry I got the dates wrong!
Aren’t they giving you any pain meds??!
It’s good you can get this all done now while you are already there. At least with the new lung biopsy you will know more what is going on instead of imagining about possible things like I do!

I'm on lots of pain meds with the pain is so overwhelming! They had me on an epidural and they put that in the wrong spot so my legs are getting numb instead of where the incision was. Ridiculous! They had to take it out. But yes I guess if they need to do another biopsy that's fine but this is the second one and it just scares me why they're doing it again! My palmologist did say he didn't think it was cancer he said it didn't look like cancer, but they have to know what they're treating. It's just all scary! Thank you so much though for your kind message 💖
Angela