What is it?: Ok I have a fungus in lungs. but... - CLL Support

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What is it?

greygirl profile image
9 Replies

Ok I have a fungus in lungs. but need do lung biopsy to see which one. Not thrilled because of pain. I can't even take deep breath. Then if is have take powerful medicine. So much for bone marrow biopsy! All because of zydelig!!

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greygirl
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

My guess it would be PJP, Pneumocystis jiroveci Pneumonia, formerly known as PCP, it is seen in patients on idelalisib, and patients are given prophylactic Septra...a combo antibiotic.

I would be careful about attributing it to idelalisib, it can occur in many other treatments as well, I have had it prior to any treatment... depends more on the state of your immune system.

I know.. its is a fungus but a combo antibiotic is used to treat it...nothing is black and white in CLL.

More on Pneumocystis jiroveci Pneumonia

emedicine.medscape.com/arti...

PCP.. aka PJP

cdc.gov/fungal/diseases/pne...

greygirl profile image
greygirl in reply to Cllcanada

Is there way test without biopsy? All this happened while on zydelig believe me!

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to greygirl

Were you on prophylactic antibiotics like Septra, along with Zydelig (idelalisib) ?

Have you had X-rays? Perhaps they were inconclusive...

~chris

greygirl profile image
greygirl in reply to Cllcanada

No PCP though!

sumok profile image
sumok

my husband had a fungal lung infection for many months but multiple biopsies were never successful at identifying the type. for months he was on IV ambisome which controlled it while on ibrutinib - you can't take an -azole anti-fungal with ibrutinib. then after stopping ibrutinib for transplant, took voriconazole then posaconazole. between them vori and New Guy (transplanted immune system) wiped it right out.

Margobleu profile image
Margobleu

My husband is currently on voriconazole because of aspergillus fungi in his system.

sumok profile image
sumok in reply to Margobleu

after about a year, voriconazole was suspected as a cause in my husband's motor and nerve neuropathy, so he was switched to posaconazole. and over the last year on posi, the neuropathy has steadily improved. just something to watch for - everyone is different. posi is much more expensive than vori :(

greygirl profile image
greygirl

Well, I believe I am in remission. If only I could get hold of blood work.believe white count at 6000. Hgl 7.5 RBC 2.6 three days ago.

greygirl profile image
greygirl in reply to greygirl

something happened to me but I don't remember something like coughing and breathing issue I was in hospital 2 weeks couldn`t find anything . I had a lung biopsy. Went to hematologist to look at incision and have stitches out. He said it looked good and my CLL was in remission. I said oh, I have CLL? He looked at me in disbelief. See what a little oxicodin can do for you?

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