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Old Tue Mar 2, 2010, 05:44 AM
Chirley Chirley is offline
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Location: Logan City Australia
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anyone on prophalactic antifungal meds

Hi,

I just had my routine blood transfusion today and finally had a long chat with my doctor. My WCC is always low but this time my neuts were 0.4 and my lymphs were 0.2 Because I had oesophageal candida last year and because I've had numerous antibiotics over the last 6 months, the doctor wants me to take fluconazole because I've had some swallowing problems lately. I understand this but he gave me a prescription for 6 months of fluconazole. I think there must be an element of prophalaxis in this extended treatment.

Has anyone here ever had long term antifungals? Also, does anyone here have routine bone marrow biopsies yearly. He wants me to have yearly gastroscopies, colonoscopies, pill cam and BMB. I know that he thinks all my cell lines are trending down (including the platelets which are still in the normal range but getting lower on every test) but there hasn't been any dramatic changes (which I find comforting).

He says he's still reluctant to start chemo but oral Vidaza will soon be on the government subsidised list which is good news if he does decide to start me on it because it'll only cost about $33.00 a month. I'm getting desperate to stop the transfusions and would be very willng to try the Vidaza if it meant I would no longer be transfusion dependant.

I would love to go on a cruise around the pacific islands but the logistics of fitting in the cruise around the transfusion dates and then the worry that I get yet another infection makes it all just out of the question. This has been going on for 6 years now and I am grateful that I'm still reasonably well BUT I'm also getting very tired of living my life around an illness. I sound like I'm whingeing.

Sorry.
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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Old Tue Mar 2, 2010, 07:04 AM
squirrellypoo squirrellypoo is offline
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Yeah, I've been on antifungals both pre- and post-transplant, it's just part of the regime you're given to keep nasties at bay.

So far I've had:
* Intraconazole liquid oral (so absolutely disgusting that it made me depressed and caused dry heaves and retching so the doctors count me as "allergic" for it)
* Intraconazole pill (no side effects but not as effective as the liquid apparently)
* Posaconazole liquid oral (my favourite of the lot - pleasant creamy cherry taste but it's rather hard on your liver)
* Voriconazole pill (only on it for a short time as I think it affects your counts and liver?)
* Ambizome IV (I had a severe allergic reaction to this, which is apparently quite common to be allergic to)
* Caspofungin IV (no problems but I required this over one hour every day for months so it was a bit tedious and also very hard on your liver)

I'm currently on Posaconazole twice a day (along with an antibiotic and antiviral) but the doctors just said yesterday they might drop it entirely soon since my baby immune system is starting to take hold...
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)

Last edited by squirrellypoo : Tue Mar 2, 2010 at 07:06 AM. Reason: forgot the Voriconazole
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Old Tue Mar 2, 2010, 09:20 AM
Birgitta-A Birgitta-A is offline
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Fluconazole

Hi Chirley,
As far as I understand it should be OK to take fluconazole. The drug har not so much adverse effects as other similar drugs but it could be bad for the liver and for the WBCs (as almost all drugs) http://www.rxlist.com/diflucan-drug.htm
Kind regards
Birgitta-A
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