Hello, friends.

Last week I developed a lot of painful red patches at my partial glossectomy surgical site. It worsened over a few days, so I was seen by my surgical oncologist. He said it looked like a fungal infection brewing under the surface of my tongue. He ordered a two week treatment of Diflucan and I am to see him in follow up in 3 weeks. It took me a few extra days to get started on the med because I have a history of QT interval prolongation and diflucan can make that worse, leading to cardiac issues. So, I had to have a baseline EKG before they would start me on the meds. During the time that I had to wait for the EKG (these things always happen later on a Friday or over the weekend, of course!), the fungal infection did indeed erupt with the white patches, etc.
I feel as though I should be getting somewhat better since beginning the med, but when Dan looks at it, he says he cannot see a difference/improvement and I am still in a lot of pain. I may have been to rough on my tongue with trying to eat somewhat regularly, but even eggs and soft vegetables cause more pain. I've been doing balanced protein smoothies for at least one of my meals, but I think I will need to keep it liquid so that my tongue can settle down.
This is my third infection since my treatment ended 10/31/12. Does anyone else have this problem?
I've been eating healthfully, avoiding complex cards (except for one serving of plain oatmeal with Greek yogurt & fruit in the AM).
I will say that even though I tote my water bottle with me at all times, i have awoken with such severe dry mouth that it seems like everything in my mouth is stuck together. We have a cool mist humidifier going constantly. I don't know if the excessive dry mouth was a contributing factor.
Getting back to my point, there is part of me that worries that this isn't a fungal infection, but worse. I can't help it. When my tonsils blew up 17 months after having tongue Cancer, it wasn't supposed to be Cancer... Just a fluke event that would require them to come out. My surgeon said that he didn't think it was Cancer. Then I woke up in my hospital room and found out lightning struck twice... Two totally different cancers, each with unknown etiology. I just don't want round 3!

Hi, Kerri
The combination of irradiated tissue, fungus and dry mouth is not a happy one. Have you asked the doctors if it would be ok for you to try one of the moisturing gels at night? Also - are you mouth breathing at night? Would one of those nasel strip things make if easier to breath through you nose?
Maria

Thrush, a fungal infection, is exacerbated by dry mouth, antibiotics. It feeds on sugar, yeast, alcohol and processed foods, so limiting those may help. Candida is normal, and needed throughout the body, but sometimes with a compromised immune system, illness, disease, it gets out of control, and the body is unable to keep the balance. It's easily treatable, but can get out of control otherwise. Sometimes the body develops a resistance to the medication, and needs to be swapped or need a higher dosage. I used 200mg or IV fungal medications, which I had too since it went systemic, including proper oral care, improving the immune system.

Good luck.

Thank you, Paul and Marie.

Marie, I agree and the doctor said that radiation damage plays a role in the whole thing.

Paul, I have been eating very healthfully and have been avoiding sugar and too many carbs. Thank you for noting that I could have a resistance to the Diflucan. I had an awful case of this last year and it also went systemic. I am currently taking 200 mg of Diflucan and I'm living on protein smoothies with almond milk, a little extra virgin olive oil, a little fruit, and my pre-biotic that I take for IBS.

Maria, yes, I think that I tend to mouth breathe sometimes and I have a cold on top of all of this, so I'm sure that doesn't help. I haven't been taking anything for the cold because I don't want to dry myself up any more than I already am. The breathe right strips are a good idea! Thanks!

Love in OCF,
Kerri

P.S. I'll keep you posted.

If they didn't do so or doesn't improve, they can take a culture. Sometimes it's difficult to differentiate between a fungal, viral or bacterial infection or can be a co-infection too with more than one type.

Hi Kerri, good advice above that I can't really add to.
Just want you to know I hear you. Thoughts around this disease and all the what ifs are never far away.
Trusting that this issue heals quickly,
Tammy

Oh, boy!

Paul, unfortunately you have been through way too much of this stuff, but that is what has made you so knowledgeable and such an asset to those on this forum. You are an inspiration.

I guess even when you try to do everything right, this stuff still happens! I'm hoping that this Diflucan will do its job soon!

Enjoy the remainder of the weekend!

Thank you.

Thank you, Tammy. You are always very supportive and sweet.

Paul, I will have been on the Diflucan 200 mg for 1 week, tomorrow.

I have a busy day tomorrow, but I will put a call in to my doc.

Thanks,
Kerri

Make calling your doctor a priority. You know you won't rest until you get a full diagnosis and have the right tests done.

Be your own advocate. Explain clearly to your physician about the pain and your fears. They will listen. Be proactive.

Hugs

Donna