aspergilloma: Diagnosed 3 years ago... - Aspergillosis and...

Aspergillosis and Rare Fungal Infection Support

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aspergilloma

garyjames profile image
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Diagnosed 3 years ago.specialist have monitored but so far not recommended any treatment.

Ct & brochoscopy april 2015 Perth fiona stanley hospital.still wait results(although no cancer).

Initial report aspergilloma fungus ball in right lung.Option "take conservative approach"

Now in Thailand & lung specialist tells me 3 balls in right & 1 in left lung !!??

The only treatment is lung segmentation,in my case not an option (10% survival)

Thai Dr started course Itraconazole & crixan 500.Now 2 weeks later my cough reduced by 70%.

Now can cough up fungus phlegm with ease.

Surgery is the ONLY cure for those that can be operated on.

I commence cannabis oil treatment mid august.(vaporize ,ingest & pessaries)

Best wishes Gary

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garyjames
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freefaller profile image
freefaller

Thanks Gary that is really interesting. So, as long as (maybe) I have only the one small fungal ball it may be the best bet to have the resection done then. I thought so but when no one was going to start any treatment and I was just getting worse and worse I thought let's just get to the best place and get treatment or at least get the full picture. It wasn't until I finally got copies of all the letters from my private consultations - I only actually received one out of three even though I had asked them to copy all of them to me, that I heard mention that there were other nodules in my lungs - didn't mention what they could be only that they had showed up (presumably) on the PET Scan as they were only mentioned after that. I am interested in the mortality rate you have been quoted and why they state such a high number. I keep being told that this is because so many of these operations are done on elderly people who have lungs that are in a really bad state. I don't want to know how old you are but wonder if you had this explained to you like that or not?

Great to hear from you Gary and to know that your situation has improved somewhat thanks to the medication. I guess they won't start medication if they are going to do lung resection as it may make the fungal ball smaller and leave some of it in to grow again. The thing is that I was referred onto the lung USC pathway and was just being pushed through - now i know if I had lung cancer I would want to go through everything at breakneck speed with out researching too much along the way. However, I felt i was being railroaded through things too fast and didn't understand most of what I was being told. If I questioned anything it was come to the clinic on Wednesday - I went to every clinic for 3 weeks but still had lots of questions and was wasting their time and mine in a way. Still hoping i have made the right choice in going to Manchester - am sure I have as the consultant did offer it as an option. Just hate waiting even longer.

All th best GAry

Sian

xxx

garyjames profile image
garyjames in reply to freefaller

my chances are 10%,because of life long lung problems.there has not been much info or stats.i read about 28 people in 14 years,so not much to go on.section is a big decision for anyone,u will lose a % of lung function & i would seriously consider waiting.i will let u know how cannabis oil is working (or not haha) by end august.best wishes Gaza

ps i am 66 & do not take ANY medication until recently .once i commence oil i will stop the medication i am on now for aspergilloma.

freefaller profile image
freefaller in reply to garyjames

This is why I wanted to be referred to UHSM. I pretty much knew I had made the right decision but you can't help questioning things can you. Of course being ill for the last couple of weeks I keep thinking it is the aspergilloma but it is likely it isn't.

Thanks.

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