Life Expectancy with cavitary MAC

Posted by mch (Marycarol) @mch, Dec 16, 2022

Just diagnosed with cavitary MAC (2 cavities at 1.6cm). Frantically educating myself. My pulmonologist agreed to let me “wait and see” for 6 months in response to my concerns about drug side effects, especially vision and hearing. But from what I’ve read so far, I’m now close to panic that delaying is a bad idea….that the meds are inevitable….and the potential for disease progression due to cavities is significant. I’m coming to terms with accepting the life impacts of the treatment and the realization this may be a life long battle due to high rates or recurrence. But I desperately want to know if my reality is I should take steps and plan for a much shorter life. I’m 66 now. Is this disease fatal? Does it reduce life expectancy? The only data point I have found so far says 5-year mortality is 25%! Never thought I’d wish for cancer as a better option. I’m afraid to know the answer, but l’m overwhelmed by fear at this point.

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Rick | @rstel7272 | Jul 29 8:18am

In reply to @talias "Did you do the treatment ? Was it tolerable dod you have cavaties" + (show)

40 months of the big 3, 2 years vfend for aspergillus, now treated for Pseudomonas

Sue, Volunteer Mentor | @sueinmn | Jul 29 2:52pm

In reply to @rstel7272 "40 months of the big 3, 2 years vfend for aspergillus, now treated for Pseudomonas" + (show)

Wow, Rick, that's a long time. Kudos for sticking with it.

cindywayne236 | @cindywayne236 | Jul 30 7:36am

My husband was diagnosed with mac at 60. He had so many problems with the meds. They took everything out of him. He lasted 7 hard years. It's a terrible disease. My prayers are with you.

tconz | @tconz | Jul 30 7:41am

In reply to @rstel7272 "40 months of the big 3, 2 years vfend for aspergillus, now treated for Pseudomonas" + (show)

2 years on Voriconazole is a long time. NJH told me I could only be on it for 6 months and I was so glad when that 6 months was up. It affected my skin, hair loss and eventually started getting Squamous cell skin cancer in multiple places. I read that long duration on Voriconazole could have these effects. You are one of the lucky ones to tolerate it for that long.

helenrivera | @helenrivera | Jul 30 10:52am

I had MAC and took all the meds + the new ones that are strong and do have side effects and like you I was on a mission to educate myself. The difference is I insisted on taking the meds they call the big 3 as I wanted to slow the progression. Unfortunately, due to a lot of other issues MAC actually started growing/spreading even after a year on the meds and lots of side effects. I had been sick/diagnosed with multiple issues since 2015 and MAC was the last. I eventually insisted with my pulmonologist and infection disease doctors I wanted a referral to a transplant doctor and finally after lots of testing I was listed and received my new lungs in 2024. It’s a process and journey and so filled with gratitude for my donor and doctors I am living life to the fullest🙏🏼. Also don’t pay too much attention to the reports on 5 years of a life span as I know transplant people who are 17+ years and doing great. Talk to your team and ask /insist on a referral as some doctors do not want to refer you. Good luck and God Bless as MAC is hard on us🙏🏼

debbie620 | @debbie620 | Jul 30 3:26pm

Mary Carol,
We are all so different. I am 62 years old and had my first NTM diagnosis in 2005, 6 mos in big 3 and NTM returned in 2017. I've been clear the last 8 years. I'm still living the lifestyle I had before NTM. I'm mountain biking three days a week and at the gym three days a week and my energy is good.
The big 3 DID zap every ounce of energy I had. My doctor opted to have me take them three days a week for a longer duration and that took care of it. We all respond differently. It would be nice to know what a shorter life expectancy means, but again it's different for everyone. I'm 20 years into this disease and feel blessed. Take a deep breathe, it's a journey. even without NTM there are no guarantees

Rick | @rstel7272 | Jul 30 4:04pm

In reply to @tconz "2 years on Voriconazole is a long time. NJH told me I could only be on..." + (show)

I had another bronchoscopy last month, culture detected Pseudomonas. Started new antibiotics, and I got referred to an ID next Monday. I have no idea if the Bronc detected aspergillus or not, not much info from the pulmonologist. SSD started pestering my pulmonologist office. Pretty frustrating but I am feeling better again. I did a few months of half vfend dose and side effects were greatly reduced. ~Rick

tconz | @tconz | Jul 30 4:43pm

In reply to @rstel7272 "I had another bronchoscopy last month, culture detected Pseudomonas. Started new antibiotics, and I got referred..." + (show)

I am glad you are feeling better. The bronchoscopy seems to pick up things the sputum sample doesn't detect.

Rick | @rstel7272 | Jul 31 7:45am

In reply to @tconz "I am glad you are feeling better. The bronchoscopy seems to pick up things the sputum..." + (show)

There is a new promising antifungal on the market, it's name is Olorofim. We'll see Monday?

westcottkm3040 | @westcottkm3040 | Jul 31 12:12pm

How do people deal with the side effects of the big 3?
I did them 10 years ago and then again 5. Now on my 4 th time and having more issues than did in the past. Feeling tired and nauseous all the time. Hard to function.