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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: 1 day ago | Replies (9354)Comment receiving replies
Re Clinical trials in MAC, I found this one that is being conducted by Principal Investigator Timothy Aksamit, M.D. at Mayo Clinic:
Study to Evaluate Efficacy of LAI When Added to Multi-drug Regimen Compared to Multi-drug Regimen Alone
http://www.mayo.edu/research/clinical-trials/cls-20147219
Upon further investigation, I discovered that the trial is being done in 86 locations in 13 different countries. If you`re interested in participating, there may be a center near you that is involved. https://clinicaltrials.gov/ct2/show/study/NCT02344004?show_locs=Y#locn
Replies to "Re Clinical trials in MAC, I found this one that is being conducted by Principal Investigator..."
Thank you SO much, Colleen, for thinking of us and providing this info!! Awesome.
I live in Milwaukee, WI and see that is one of the sites listed. Who do I contact to see if this would be a good study for ME? My pulmonologist is at the local teaching hospital in Milwaukee so I'd think that is the location of the trial here.
@Paula_MAC2007 I would start by talking to your pulmonologist about whether you fit the eligibility criteria. To learn more about the study and to see if it would be a good study for you, you or your pulmonologist can contact the study research staff person Dianne Nowicke by email at NTMStudy@hudsonglobal.com. When you email her, refer to this study by its ClinicalTrials.gov identifier: NCT02344004
She can tell you more about what it involves to help you decide if it's right for you.
If you decide to find out more, please let us know what you find out. I'm sure others in this thread would be interested to hear about your inquiries. Thanks
Thank you Colleen. I won't be able to contact my pulmonologist until the end of the month, but I definitely will follow up. I don't want to scare anybody, but after going thru some tests over the past few weeks, I learned that 1 or 2 new cavities of MAC have developed in my lungs, while some of my original MAC has shrunk (good new on this part!). I've been on the 3 drugs since 2007 - - but over the past 5 years only take every other day. I see my pumonologist again in August to talk about this and view my CT scans.
Paula, I'm sorry to hear about the new cavities. Please keep us posted on your progress .. I'm sending you LOTS of positive energy .. AND my health inducing Hugs! Katherine
Sorry to hear that Paula but great that your old MAC has deminished. Have you been on the same 3 antibiotics for the last 8 years or have they been changed? Hope your doc can gets this sorted asap for you.
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WOW! This is just WONDERFUL! MAYBE we are coming out from the shadows as a little known disease. Our Dr. Timothy Aksamit is one of our CHAMPIONS rooting for us! Getting us into a trial!! YEAH!! Who knows what the outcome might be .. but at least this is a trial .. and Dr. Aksamit is a part of it. I am delighted!! How "bout that?!!