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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Boomer, what my husband's Oncologist has told us is that Imbruvica either works front end for a patient .. or it does not. Luckily for my husband it REALLY has .. he has now been on it for two years and doing very well. My understanding of it is that with single drug use has been the most safe .. the most problems have come with combination drug therapy. Luckily my husband's Oncologist was smart enough to go single drug and all has been well. .. and yes my husband was Stage 4. BUT due to this therapy.. I'm KEEPIN" that fella around! Katherine
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he's the perfect candidate for this type of treatment...and it's working w/no side effects...yay!
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@katemn sounds great, its such a small world isnt it. Together we can do this. I was also thinking there is no register(as far as im aware) for our disease so there isnt any information for doctors to go by, what may have worked for other doctors etc, they all need some sort of communication with each other all over the world to share experiences, what worked and what diddnt(then theres less trial and error, which is what seems to be happening now) We should all suggest it to our doctors/hospitals and see what they suggest. sorry its a bit long winded im great at knowing what I want to say but doing it the long confusing way. haha
. I am thinking that with the drugs we have at the moment (big 3),we need to stay on them,( unless we get a negitive sputum within 6 months of treatment,) to keep them at bay, not reproducing, until there is a treatment to cure this once and for all, relapses happen all too often, to so many ,and are doing damage, we need a kind of long term maintanence, maby at lower doses or month about or something. Sorry just wandered off topic, having one of THOSE days when my head is going to fast.