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Posts (51)

Sun, Feb 24 6:23am · Aspergillus with MAC in MAC & Bronchiectasis

@windwalker – I second this — your positive attitude and knowledge and assistance have gotten me through my journey with my positive attitude in place — thank you!

Sun, Feb 17 10:52am · Looking for Specialist in Central Florida or NYC (Or anywhere really) in MAC & Bronchiectasis

@windwalker – I am a Pollyanna for sure. And it is stage 4. But CT scans this week show it is back to slowly shrinking! YAY.

Thu, Feb 14 9:53am · Looking for Specialist in Central Florida or NYC (Or anywhere really) in MAC & Bronchiectasis

@windwalker – non small cell lung cancer — Tagrisso will hopefully shrink it down, else IV chemo would be next! Thanks for all your help, Terri!!

Wed, Feb 13 10:23am · Looking for Specialist in Central Florida or NYC (Or anywhere really) in MAC & Bronchiectasis

@windwalker – been an interesting year– I continue to see Dr. Layish – he did GPS bronchoscope last April – found lung cancer in collapsed lower right lung. Not related to smoking, but a lung cancer that any age, any sex, any weight can get and they don't know why. He sent me to an excellent cancer doc – Dr. Tarek Mehkail in Orlando – I have been taking Tagrisso 80 mg since June 1st – with some shrinkage of the tumor. It is a chemo immunothreapy drug – a pill every day that tells my DNA to tell the tumor not to grow today. It is $18,000 a month but I do financial forms with AstraZeneca (AZ&ME) financial help program and they are paying for it all. Just got out of hospital again with double pneumonia and a lung infection. This time after hospital discharge, I went to a new rehab center, was the best thing I have done in a long time – I could drive when I got home!! Still doing outpatient PT. My MAC infection has not reappeared – stopped taking the big 3 August 30th per ID doc orders- bronchowash in hospital showed no MAC in January. Hey, I woke up alive this morning – happy as a lark!! Barbara Ann

Mon, Feb 11 10:37am · Looking for Specialist in Central Florida or NYC (Or anywhere really) in MAC & Bronchiectasis

@franciscoconde — I also see Dr. Layish as pulmonary specialist, too. Terri recommended him and I have been seeing him for about a year – very caring physician, another one that listens to you; Dr. Martinex, ID physician, for 3 months.

Mon, Feb 11 6:34am · Looking for Specialist in Central Florida or NYC (Or anywhere really) in MAC & Bronchiectasis

@franciscoconde – I see Dr. Javier Martinez, 685 Palm Springs Drive, Suite 2A, Altamonte Springs, FL 32701- 407 830 5577 – part of IDC (Infectious Disease Consultants-has another office in Orlando, too.). I just started seeing him – my ID doc from last few years decided to just be a hospitalist and closed his clinic office. Not sure if you have to have a referral – I just had to have all my records sent to him before I initially saw him — he listens, which means a lot to me. Hope this helps – Barb Schaper

Dec 25, 2018 · alternative methods to treat MAC in MAC & Bronchiectasis

ooo, I am about 45 minutes from Altamonte Mall — maybe meet there?

Dec 24, 2018 · alternative methods to treat MAC in MAC & Bronchiectasis

@janovr – let's meet up with @londonritt after the holidays! looks like it is about 27 miles from Leesburg to Clermont and about 26 miles from Orlando to Clermont. Clermont sounds good!