Hello all this is my first posting on here, to cut a long story short, My Husband who's 53 was firstly diagnosed in 2008 with Acute myeloid Leukeamia (good risk) which was successfully treated and now been in remission for 7 yrs, but on his last cycle of chemo he developed a rarer well in UK anyway, invasive fungal infection called Zygomycetes, his consultants didn't think he would survive as it had spread to liver,spleen and bone, but he was treated with IV Ambisome and oral Posaconazole, treatment for 1 year in total, outcome: treatment successful and consultant thinks he even coughed up fungal ball in lung cavity as the cavity was clear on final CT, great life back to normal.
All has been fine until Sept last year when he developed a severe persistent cough, the worst cough I have ever heard!
Went to GP, who ordered an X Ray which they said did not look much different to last X Ray, cough still persisting, referred to respiratory Consultant said she would arrange a CT, explained we were about to go on holiday to Egypt , she said fine to go.
Whils there my husband had quite large hemoptosis so ended up in hospital,this resolved, on return home back to consultant, bronchoscope performed, non conclusive, 3 sputum samples were put in for cultures, they showed Aspergillus fumigatus ( scanty growth) but consultant was adamant no treatment necessary and his body would probably eradicate on its own, I was not happy with this especially due to his past history !
I was practically begging them to start some treatment but they stuck in saying none necessary, it all blew up in January when he had a large hemoptosis, and they had to have an embolisation of 3 vessels, it was only then and I feel after I had got his haematology consultant involved they decided to start some treatment.
They started itraconazole oral 200mg twice a day, he is well in himself and very fit.but on a recent sputum sample it showed moderate growth for Aspergillus whereas the month before it was showing light growth, his consultant feels there would be little benefit on changing the anti fun gals to another one, but I feel it must be worth trying, we are as now waiting to see what the micro biologist says.
My main concern is his life expectancy, and is there still chance after nearly 8 months of itraconazole it could still work, or anything else !!
I would be grateful for any help or advise
Try and get a referral to Manchester University lung centre of Excellence - Prof Denning . He is the top man and in UK you cannot get any better a person for fungal infections In the lungs - Push hard .
Thanks fcag2001 we live in Devon and Manchester is a long way for us I will wait and see what micro biologist says about changing the itraconazole and will probably be talking to his haematologist too.
As for now hubby is very well in himself with no obvious symptoms, working and keeping fit cycling and kayaking.
I got a referral to Manchester for my CPA. Only confirmed at my visit last Friday. I live on the tip of Pembrokeshire and it is at least a 6 hour drive for us. It is a long way a lot of petrol and one or two night's stay there but worth it. On average spend 3 hours there, consultation, blood tests physiotherapy and talking to the nurses. Now I have started my medication will need to go there every month for a while. I hope your hubby gets better help. He is lucky to have you to look out for him.
All the best
Sian
Xoxoxox