Chirley
Tue Mar 2, 2010, 04:44 AM
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.
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.