Acute Myelogenous Leukemia (AML) Support Group

Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.

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coinlieutenant 07/31/2016

Hi everyone,

I can't believe how quiet the board has gotten since the "upgrade". I check all the time for updates from Tammy, EV, Andy, Tony and others. It is like a ghost town on there. Just summertime doldrums I hope? For those on the list above, please give updates! We continue to pray for you all daily. Would love to hear what you are up to.

For my question, I got sick for the first time yesterday. Spiked a fever, 102. Been up and down with motrin and tylenol. My worry is a fungal infection. I have raw sinuses, but not much real drainage. I am off immunosuppressants for over a month now. Counts all normal as of four weeks ago. Been doing hiking on dusty trails and such and the other day got on the roof and scraped off some moss. Didn't even think about it, just a chore, until I started feeling unwell, and now I am worried I put everything at risk foolishly and carelessly.

Anyone have a fungal infection after off immunosuppresants?

John

leapea1208 07/31/2016

John
If you already haven't, Get in and get a swab and ask about cultures or ct of sinuses just to be safe.
Also are you on prophylactic antifungals? Voriconozole or pozaconozole (Noxifin)? Call your SCT Dr, they will assess and prescribe prophylactics ASAP or get you in for a scan.
We didn't run into this but that's bc tony's not even allowed still to do many things outside (yard/repair) especially if they involve soil, mulch, molds & things like that
No using the leaf blower, mowing, walking in the woods when damp, or even using his new power washer on the driveway.

coinlieutenant 07/31/2016

Hi Lea, thanks for writing. How did Tony's marrow look? Cathy and I have been thinking and praying for great results.

I was taken off antifungals (fluconozole) at day 1oo. I am going in to Stanford tomorrow if the fever won't stay away without tylenol. I hope it is just a virus. :o

Noodle65 07/31/2016

Hi John,

I would listen to Lea, she's genius!!! Although chemo only, I avoided all things soil related to include all things lea discussed for one full year after treatment ended. In fact, my med team made me so fearful of grapes due to the mold I did let them into my home for two years.

I'm praying that the fever subsides.

Blessings
Julie

coinlieutenant 08/02/2016

Never thought I'd be so happy to hear I have a viral infection. Fever came back again yesterday, and on Saturday my doc said to come in if the fever persisted in spite of the z-pak antibiotics. So, I went in yesterday (day 3 of fever) for labs, blood cultures and a nasal swab. They took a chest x-ray which was clear, and said they'd do a chest CT to look for nodules indicative of fungal infection only if the cultures and viral panel were all negative. Luckily the swab came back positive for coronavirus, and the prescription is rest and hydration. So far today no fever, too! I slept close to 12 hours last night which I'm sure helped. Funny thing was my counts were low - WBC was 3.4 and ANC 1.4. The PA who saw me didn't seem surprised, as she said counts can be either high or low with an infection. Thought that was an interesting data point worth sharing with you all.
Anyway, I'm not completely out of the woods yet, but feeling better and much relieved that I don't seem to have a fungal infection. Thanks as always for the prayers and support.
John

leapea1208 08/02/2016

Glad you went in john and very glad it's not funga!!!!!!!
Hope you heal up quick

Noodle65 08/03/2016

Me too, John. I have heard of many whose counts go down with a virus. Stay away from all things moldy, soily , dirty, fungusy ect

Praying for you daily
Julie

everedy 08/15/2016

Sorry you got sick but glad to hear what it was! Hope you're past it all now.

Got a little frustrated with the new site but I'm looking to get back involved again now.

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