Need Surgery on Cancer & Just Found Out I Have MAC! Help!

Dee,
I am located in Wisconsin. Milwaukee area. Right now I am with aurora, I've been with them for everything for so long. I was actually thinking about switching to froedtert medical college but I am in the weeds right now so it's really hard to switch when I'm having a surgery and I just found out I have mac, and don't even know what kind. I did watch some videos though a couple of them on this website you recommended. They were really good, I'm going to watch more! I really appreciate you giving me that information. I could understand what these doctors were talking about too. Which is great! So I really appreciate it yes if you could check to see if there's any support zoom groups in my area it would be very good to know. Thanks for all of your help, it's so appreciated!

Hi Angela!
I will check on that group later today. Also, I attached a screenshot of upcoming educational series. I think you can register at
https://www.nationaljewish.org/2023ntmpatients.
Have a Blessed Day! Dee

Hi!
I take the Big 3 all at night b4 bed thrice a week,
Monday, Wednesday, Friday.
I found this routine kept side effects to a more tolerable level. I take all other meds in am plus probiotic daily. Hope that helps!
Dee

@busybeans

Thank you so much for your words of encouragement. I wanted to tell you that I was surprised to read you had your colon removed, because so did I and I also managed not to have a colostomy bag. I have a rare genetic disorder called Lynch syndrome. It's part of the cancer I have now on my intestine. I want to hang on to as much as that as possible because as you know that's all we have left. It sounds terrible that you were bleeding like that though! I know what you mean about those Staples because I remember that and waiting for all that to heal for 3 or 4 months.. I also became extremely anemic with this other cancer and that's how my lung doctor believes I acquired the Mac. I am not sure how long I was so anemic for. But by the time they found out they had to actually give me IV infusions of iron for almost 3 weeks. A normal number for iron is 50 to 170, mine was at 12. I had a CT scan done on Friday and it came back today and there is a cavity in my lawn, 3.2 CM by 2.1 cm. It's just unbelievable. I've heard of cavities before have to reading a lot on the site, but I don't think I've seen or read of any that are that big. What do they do about those? Do you know? I have an appointment on Tuesday with my infectious disease doctor. I'm hoping that they're going to go through with the surgery for the cancer since this is an aggressive cancer. So I'm hoping that infectious disease agrees. I wanted to let you know too that I don't have any symptoms of this Mac yet. I'm not sure why, I'm a little short on breath but I don't cough or have night sweats or I'm coughing anything up, I haven't lost any weight. So I'm finding all that strange. I'm not really sure about what all the lifestyle changes I'm going to have to make are. But I'm willing to do whatever it takes to try to get rid of this! I'm sure they're going to start me on the big three, probably waiting till after the surgery though. Again thank you so much for your kind words and by all means send me a prayer. The power of prayer works!
Angela

Thank you so much for responding to my comment! This is a very terrifying time for me. Not only doing with a cancer, and an aggressive cancer at that but then to find out I have this and today to find out I have a 3.2 CM cavity in my lung, with multiple new nodules found in the middle of my lung and the bottom. I didn't even know nodules could form this quickly?! I just had a CT scan done in January and the only nodules were around the mass that is now a hole in my lung, and the rest of the lung field was clear. What sort of lifestyle changes do people with this have to make? Can you give me some examples of things that you do to keep your lungs clean and clear?! I'm sure that's going to be very hard for me. Especially since I've owned a cleaning business for the last few years, but I don't think I'll be able to do that anymore. I will say that I don't have a lot of symptoms of this yet. I am short on brought sometimes, even with that hole in my lung you would think I'd be coughing because it's up high, in my right upper lobe. When I initially had the CT scan done in january, January 5th they asked if I was coughing all the time and I told them no. And I never really did cough except for when the pneumonia got pretty bad. And then I did call for about 3 weeks and once I got on the antibiotics it went away. But I haven't lost any weight or have sweats at night, I don't cough stuff up or spit stuff up generally, and no coughing yet. I really hope it stays this way, I don't know if some people stay asymptomatic but it would be nice! Again thank you so much for responding and if you can give me any advice or tell me about your lifestyle changes, or if you know anything about the cavities in the lung and what they do about those. It's really scary to me. But I'm so glad that there's so many supportive people on here and to read the stories and know that people do live with this and live fulfilling lives makes me feel great! Angela

Your plate is surely too full! I trust that your ID doctor will make the best decision about moving forward with the surgery. And no, my guess is that he/she won't start you on the big 3 until afterward. I, too, had almost no symptoms for many years, and even with the ones I have now (occasionally short of breath, a little more fatigued, still a non-productive cougher, a little more weight loss, AND a cavity in my left lung), I manage to live a fairly normal life (well, until the pandemic hit and I felt - and was advised by my doc at NJH that I needed to isolate as much as possible). Sometimes cavities less than 4 cm will heal on their own (or so I've read). Mine has not. Sometimes robotic surgery is done to remove that portion of the lung. But there are risks with that - none that I am willing to take at the present time. I am not on O2 and have never been. The surgery might mean that I would need to be. I remain active and don't want to lose the muscle tone I have or any more weight, so for me, at this moment, I have opted to live with the cavity and "wait and see" what the next CT shows in 3 months. All of my doctors (at NJH, and locally my pulmonologist and ID) have been willing to work with me and listen to what I want instead of following the protocol (even though one of my doctors developed it). I have learned that while I must be my own advocate. I also must be gentle with myself and know that whatever the situation is, it will be "blessed" or "blocked" as it should be. I do hope this is helpful, and I've added you to my prayer list.

Thank you so much Dee!!! I really appreciate your help. Have a wonderful day!

Thank you so much for putting me on your prayer list! It sounds like you're doing fairly well, and what's unbelievable to me is that I never thought I would meet anyone that had their entire colon removed like I have, a complete proctocolectomy, and then to meet someone else that had their whole corner move and have this awfully rare bacteria infection is really amazing to me. I have a couple questions what is 02? I'm not sure of a lot of the terminology used when describing some of these things. So I just have to ask! Also how big is the cavity in your lung? I hope that I don't develop any symptoms but I just don't seem to have much besides being short on breath sometimes. But it's not even all the time. The last couple days I've been breathing pretty good and feeling really good. It sounds like you have a great team of doctors and that makes all the difference in the world. The doctor I'm seeing for ID has really good reviews so I'm looking forward to seeing what he's going to tell me and I'm hoping that he still approves my surgery that's scheduled for next weekend and Saturday. I just want this cancer out of me because I believe it's part of the reason I got this infection to begin with. I really appreciate all your words of advice and encouragement and if you can tell me anymore I would greatly appreciate it. Also, I was going to ask if the medication makes you feel bad or if you're taking it and it makes you feel okay? I've heard different things. I hope you have a great day! I meant to get back to you yesterday but we had a huge ice storm in the Milwaukee area and I kept going outside to shovel my walkways so it didn't build up. Thank you so much!
Angela

Hi Angela!
I have attached a screenshot of the email you can reach out to for details on support groups in your area. Helga told me that they try to match you up with folks that are fairly close to you so you can share local docs, clinics, environment, etc.
But if for some reason they are not able to get you signed up right away… you are welcome to join my group. Just let me know!
Blessings,
Dee

I hope your ice is melting! I live in the southwest where it is usually in the 70s this time of year, but I've been whining about it being in the mid 50s and raining...guess I'll stop doing that!
To your questions, first O2 is oxygen. Some of the folks I know with NTM need O2 to breathe and are tethered to either a large or small device; I've never had to use it. I do use an oximeter at home to check my oxygen saturation. It's the same small device that is put on your finger at the doctor's office. I bought mine at a drugstore ($30-$40) and use it just to check in with myself and make sure my oxygen is good...especially if I'm feeling a little punky. Sometimes anxiety makes me feel breathless. That's a good time for me to use the oximeter and see that my oxygen is just fine and that I'm a little panicky over something else (pandemic/war/earthquakes/homeless folks, abandoned pets).

The cavity in my left lung is 7.4 mm x 6.5mm. It's relatively new and scared me a lot until I did further research. I'm praying that through exercise and good (as good as I can do it) airway clearance (along with a lot of prayer) will make it heal. I also have bronchiectasis in my right lung. It was suggested that be removed as well. I said not yet. I'm just not ready.

My colon surgery was a subtotal colectomy with the small intestines reattached to a small portion of the rectum, thus avoiding a colostomy. It has not been without a few issues, but I have a great GI doctor that I can turn to if concerns arise. I didn't have cancer. I just had a colon that stopped functioning - at all. After five years of total misery I finally consented to the surgery. I was terrified of a colostomy and remain grateful every day that that was not the outcome.

I tried the BIG 3 when first diagnosed in 2011...two years after my colon surgery. I couldn't tolerate the side effects of the drugs. My pulmonologist had me wait six weeks and re-introduce one at a time. I still couldn't tolerate the side effects. My ID doctor said that my body chemistry was not going to allow me to take the drugs. BUT, lots of folks do just fine. My dear, dear friend I roomed with at NJH took them plus had a port for another. She never missed a beat. They had no ill effects on her at all. As best you can, listen to YOUR body when/if the time comes to take them. It may take a little while to adjust to them or it may take very little time to learn that they aren't going to work for you. Either way, you will find a way to manage this disease.

I hear how important this upcoming surgery is to you and pray that it moves forward as you hope it does. I will happily answer any questions I can or just be here if you need a friendly ear. Like you, I've never known anyone that had their colon removed AND had NTM so I find this connection an unusual Godsend. My best to you, along with many prayers.