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, 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
So, it's been nearly a month on diflucan and the thrush is gone, severe pain remains. I can deal with the pain because I had a scan and check up with my MO and I have a clear CT and scope! I'm so relieved!
Thanks for all of your live and support. I'll keep you posted.
Love in OCF,
Kerri
Great news Kerri. I so hope the pain goes too and that you can manage this well.
Tammy
Just a little more information as I also saw my Palliative Care Specialist today, as well.
My MO will check the final results of the CT when radiology reads it. She didn't see any evidence of residual thrush. I'm relieved. I will see her in 6 months with a CT of the neck and chest; also CBC for white blood count.
As far as the pain goes, I have been followed by Palliative Care Specialists at the Cancer Center since I was in treatment. We have been trying to reduce the narcotics and she wants me to take ibuprofen 600 mg, 3x/day for 2 weeks. This will hopefully break the inflammation cycle.
She also said that at this point, the narcotics might be working against me in that my nerves have gone into overdrive. She thinks that I have residual inflammation from the infection, even though it's cleared.
My MO said that I have a lot of scar tissue where the pain is; it's where the tongue (partial glossectomy site) is tethered to the floor of my mouth. She said since scar tissue doesn't heal up like the normal surrounding tissue and the radiation damage just makes things worse. Of course, scar tissue doesn't stretch or have blood supply.
So, the plan is to gradually decrease the narcotics again, as I had begun just prior to the onset of the infection. It will likely be a slow process due to the extended length of time that I have been taking them, but I know that I am in good hands with my team at the MGH Cancer Center.
Thanks, all!
Love in OCF,
Kerri
Glad to hear your thrush has finally been eliminated. Hopefully you will begin to feel better soon.
(((HUGS)))
Thank you, Christine and to all of you who have supported me on this thread.
((Hugs))
Kerri
Hi, friends.
I am adding to this old thread because I'm not sure if it's related or not, but here goes.
I explained earlier in this thread that my oral pain has been much worse following a fungal infection this past Spring.
Now, I am experiencing a different kind of phenomenon in addition to the pain. The surface of my tongue is extremely sensitive to any spices (even salt), toothpaste, gentle/non-alcoholic mouthwash, any carbonated drinks (which I could previously & occasionally enjoy), and certain textures are intolerable.
I am wondering if these are typical changes due to radiation that come later post-treatment. My last radiation treatment was 10/31/12.
My next scan was supposed to take place in October (to include the chest), but my SO ordered an MRI for this weekend. He wants to cover all bases due to the persistent pain and hypersensitivity. He said that he doesn't expect to find anything worrisome, but I have proven to be the exception to the norm.
I am getting a bit ramped up with anxiety because as I type this, I camped in my 6 y.o. daughter's hospital room. She has been very, very sick and wasn't getting better. She was admitted for IV fluids. Her stool culture showed that she has contracted salmonella. She'll be starting on some heavy duty abx and continued hydration. We will be taking things one day at a time. All of this brings me back to my first signs of cancer in early 2011. She was admitted at that time due to dehydration and a UTI. I can remember that my tongue was really bothering me and I knew deep down that something was wrong. I know that this situation doesn't predict an outcome for me, but it's just like bad deja vu. I am worried about her. It's awful to see your child suffer so much.
I would appreciate any feedback or shared experience that anyone might have.
Love, hope, and strength in OCF,
Kerri
That's really hard, Kerri. I hope by now that your daughter is a bit better. I know exactly what you mean about hypersensitivity. Most of my oral tongue has gone but there's a bit on join that hates toothpaste or anything spicy. I used to have total sensitivity back in the days when I had thrush a lot plus lichen planus. Do you find that milky things work best?
I know that it's the worry of what lies beneath that is the worst thing about this. The fact that the doctor thinks it is nothing worrisome is a relief, even if the d�j� vu of your daughter's illness in combination with your feelings about your own health make you very uneasy. My mind goes along those lines too. Sometimes I've been very wrong and a few times I've been right. I feel and hope that you will be okay. It leaves you with a sore tongue but you can work around that, painful as it is, if you are basically healthy.
I had radiation a year ago and don't have any worsening of the membranes in mouth ... It's just my teeth that are taking the rap.
Best of luck to you and your daughter.
Maureen
I have the same sort of problems with mouth/tongue pain. It has never gone away and my cancer was 2001. Soda, toothpaste, mouthwash, fruit, alcohol all hurt. I never know if something will be painful until I taste a bit and my mouth seems as though it is on fire. There seems to be no help that I can find for this. I carry Anbesol Maximum liquid and q tips in my purse, have it in my nightstand, and in the bathroom. It's the only thing that helps, even though it is very temporary and I have to reapply often. I have never heard of anyone else having this problem. Good luck to you.