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update

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi everyone. My life is busy with school (finishing my MA, trying to graduate in three weeks!) and my computer died, so I have not been very active on the public boards. In addition with our friends not doing so well (hang in there Mike!) I have not wanted to clutter this space with my less critical recovery woes.

Thrush, as it turns out, has been the real problem. Mouth sores and mucus and thrush have me thinking this will never end. I went to the Dr last Thursday and he prescribed another round of diflucan. I also have been having acid refux and still cannot sleep through the night. I just had a woe is me session with Claire and she's great of course, but it's now 5 and a half weeks post treatment and I'm still suffering. I swallow only a bit of water a day to keep the reflex, everything else is through the tube.

I rinse religiously with salt/baking soda and keep the teeth clean but what else can I do to help the flora and fauna stay away?

Thanks to everyone. My thoughts are always with you all.

Best,

Mick

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

My Onco had me swish&spit with Nystatin, and I think that was to ward-off Thrush/the yeast thing. To be honest, I was bad about the salt/baking soda rinsing throughout all of my treatment. It was just MM during the treatment, and MM and Nystatin in post-treatment, along with Biotene, which I still use.

As I've stated, I returned to work a month after my last rad. And, I stopped using my PEG a couple weeks after my last rad. The only real mouth sore problem I had, post-treat, was on the sides of my tongue in the back- where gum bone was sticking out due to gum tissue loss. Yes, I had a lotta the burning sensitivity with anything put in the mouth, but the sores of treatment times didn't last much beyond those times. Do know that Thrush was a major concern the Onco had for me, so it is a hazzard most of us likely faces.

As for the teeth- Jim and I use Prevident. Mine was prescribed by my Periodontist, and told it would be for the long haul- for the teeth and gums.

Worst is over, Mick. Good to get the update from you.

kcass

Landranger25's picture
Landranger25
Posts: 208
Joined: Nov 2009

Mick, so sorry to hear of your mouth problems. Glad you are still working at sipping that water. I can't offer much help in getting rid of the thrush other than to say to keep the faith in your care givers. Whatever they are recomending you do, try to do it. I sure hope things turn for the better for you soon. Awesome that you have stuck with working on your MA. I can't imagine having done something like that while I was going through treatment. i couldn't even read the newspaper or watch a 1/2 hour TV show while doing chemo. Brain just too addled. Good luck and hang in there. You can do it.

Mike

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Mick. My situation sounds very similar to yours. I'm 4 weeks out of treamtments and my mouth was and is my primary issue. I agree also with your comment because I hate to complain here, just because my symptoms are nothing compared to what a lot of people are coping with. I still can't sip water, but I'm trying. Mucus build up and mouth sores not healing are my main issues now. Tried Dyfluken twice for thrush and it just kept coming back. Nysatin solved my issues with thrush in 2 or 3 days. Good luck and hang in there.
Greg

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,

Good to hear from you. Sorry about the mouth problems. Hope you get rid of it quickly. Just keep looking for your center.

Best Steve

P.S. Greg, I am 4 wks post from st 4 right tonsil primary. We are almost the exact time.
I had surgery 1/22/10.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Steve,

I pulled up your "about me" page. Sounds like we are twins. I had biopsy on 1/22/10 and surgery was 1/27/10. Last treatment was 4/12/10.

Had trouble the first couple weeks after treatment ended, but I seemed to have turned the corner. Feeling a lot better. In fact today was my first full day back at work. It was great being back.

Hope things are going well for you!
Greg

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

great to see you post. please let us know when you get that MA. that is so awesome. i have been following your progress thru claire's postings.

i am sorry about your mouth. they kept thinking i had thrush because of how bad my mouth looked, they gave me that diflucan, but it did not do anything. there was a little tube of something that i would put in my mouth that helped the sores in there a little bit. at least it was a tiny bit of relief. seemed to calm the angriest sores in my mouth. it was a perscription, i can ask him what it was when i go this friday. maybe you can ask your RO if it would be helpful for you.

i wish you more and more healing every day. wishing you only the best,

sweet

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

As you know I too am NPC and I had a lot of problems with taking both Dyfiukecan and Nysatin, I kept getting and infection in my nasal passage that would not go away. I kept asking the doc if some of my problems could be the medication and they told me no, so I read of on the stuff and one of the side affects to Dyfiukecan was that it could cause infection. Once I stopped taking the stuff a lot of my problems went away.

Ask you doc to let you try some thing different and see if it helps.

Take care Mick and keep posting

Fire34
Posts: 353
Joined: Feb 2010

I was wondering how you were doing. I missed this post of your as I asked later. My mouth sores I believe were form the 5FU. The diflucan helped wonders for me. The U of Chicago had us doing swallowing exercises from the start. It got harder and harder as treatment progressed but seemed to help a little. I used Biotene toothpaste thru out treatment just to help keep my teeth clean, didn't do much for the dry mouth for me anyway.
After treatment ended my better half forced me to eat LOL. Again the doctors could not emphasise the importance of those exercises. A second swallow test showed that I was able to get my PEG removed. Again good to hear from you.
Best Wishes & Prayers
Dave

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Hey, Mick. Have you tried fluconazole? I had thrush twice during treatment, and it knocked it out both times.

--Jim in Delaware

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hey Jim. Fluconazole = diflucan.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,
I don't think I got one thing that was written on my scrips. Every time I would look it up,I would get the same thing you just wrote. Only 2 are by name Fentanyl and hydro. All the others are generic. Keep Strong man.

Steve

j3rey
Posts: 56
Joined: Apr 2010

Have you tried taking a daily probiotic? Go to the health food store and get a good one that they keep in the fridge. It is a powder that is inside a capsule. You can open the capsule and put the powder in water or in whatever you are putting in your feeding tube. Sometimes nystatin will help thrush better than diflucan. (Am a past sufferer of ongoing yeast issues and thrush from dental work and antibiotics/unrelated to cancer) The probiotics keep me free from having yeast issues.
Worth a try for you. I know it is hard with nutrition when you cannot eat but sugar will make the thrush worse.
Jen

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Think it's about time we're all needing an Update on how things are going, Mick. Been awhile, and I know many more than I are concerned.

Believe

kcass

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

I am with Kent, I have big shoulders again now that I am gaining back a few lbs. I too am worried and would like to know how you are really doing my friend. Remember our gold is to help each other, this is the reason we are all survivor.

Take can my friend

pattyanny's picture
pattyanny
Posts: 532
Joined: Jul 2009

Hey Mick! Looking back, it seemed like I "sailed" through Chemo & Rad compared to the three months after the treatment. That was hell! Eating was difficult enough, without saliva and no taste buds. AND I had thrush 4X! The Nystatin was the best, and I kept it on hand, and would use it as soon as felt it coming on. Lots of water for mucus, and lots of spitting!
Biotine makes a mouth gel I would use on my gums at night, which helped with the dryness.
Sounds like you need a Prevacid like medicine (tums, rolaids). I would check with your doctor.
This was a rough road for me, and I am now eating everything. This too shall pass. If I did it - and I am a wimp - you can do this Mick! My prayers and good thoughts are with you!
Blessings for Claire, who is so supportive! Patty

friend of Bill
Posts: 87
Joined: Mar 2010

You are slowly climbing out of hell but it will get better gradually. Promise.

Am in awe of your earning a master's degree in the midst of this. Absolute awe.

Pity parties come to visit, just don't invite them to pull up a chair.

Vince

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

yeah Mick, stay on the thrush , I had 3 rounds of it Post treatment before it finally went away. Once your immune system comes back enough, youll be okay. And it WILL.

Godspeed,

GRAVEY

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Must tip mine to you, Mick. An MA while going thru treatment? That is something else, my friend. I do hope you don't experience what I am, with what the chemo may/may not be doing to my we-wittle brain. Have had a couple events that are most troubling, of recent, and would suggest the C-B might be with me. Stay on top of it. Hope all is well with you upstairs.

Again, to earn a degree while going thru this thing- bigtime feat, Mick.

kcass

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Yes indeed, doing an MA through the hell of treatment is impressive indeed. It took me the better part of the year to get rid of the chemo brain fog, and I don't know that I could have graduated from high school at that point, much less gotten my master's.
You're one tough dude, Mick.

--Jim in Delaware

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