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

Great news, 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.