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Kerri #179927 05-05-2014 07:48 PM
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Hi, friends.

Just an update.

Today was worse. I feel like I did when I was in the midst of radiation treatment. I can barely talk, swallow, and could not even have Ensure because it stung my tongue so badly. The Ensure also seemed too thick to swallow and seemed to be coming back up before it could go down. The only way I can swallow is to instantly chase something with a sip of water and clear my throat.

I called my surgical oncology fellow this morning. I told her what was happening and I thought I might need to be seen. She opted for the "wait and see" and continue to take the Augmentin. Well, I had to crush that horse pill and mix it with apple sauce this morning and I threw it back up within a half hour. I cannot eat enough for some of these meds so that they don't upset my stomach. She said that she would call in some magic mouthwash for me, but I think that she must have forgotten because it never was filled at the pharmacy and they had no record of any of their stores getting the order. Of course, it was after hours when my (awesomely supportive) hubby went to pick up the script and he found out that it was never faxed in.

Dan, (my hubby), got home with the kids around 6:15 and told me the bad news. He also said that he had to go back out to get me some Ensure because he was running out of time to get the kids from daycare/preschool. He made the kids a quick dinner and went back out to the store to get it. I tried it when he got home and I couldn't drink it...not 3 sips without nearly bursting into tears.

I decided that I could not wait until tomorrow to talk to the doctor again. I had the head of my medical oncology team paged. She was very nice (always is, but I never know whether to page her or her fellow). She agrees that it seems like thrush, but didn't think that I necessarily needed to come in just yet. Since my rapid strep came back negative, she told me to discontinue the Augmentin, especially since I couldn't tolerate it and it could possibly make my thrush worse, if that is indeed that correct diagnosis. I hope it is, because she said the the Nystatin should get me feeling somewhat better in a couple of days. She faxed in some liquid Nystatin and the Magic Mouthwash (which is no longer covered by most insurance plans because it contains some medicines that are OTC (gotta love insurance, but you've gotta have it). A seven day supply of the mouthwash cost $65! Still, I'd pay for it, but it seems a bit ridiculous.

I was able to dip some white bread with a bit of Smart Balance melted into it) into some water and slowly, but painfully chew and swallow. I wanted to have some food in my stomach before I took my nighttime meds (pain meds and a few others, plus the Nystatin). It certainly stung at first, but if it's going to do the trick, I'll push through it.

I just hope that this is the problem that can simply be solved. From what I learned about thrush, it can come about due to chronic drymouth, but also the hormonal changes with pregnancy.

As always, I am grateful for you help and welcome any feedback or shared experiences. I will certainly keep you posted.

xo,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #179931 05-05-2014 08:26 PM
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From what I recall, eating yogurt or taking over-the-counter acidophilus capsules can help with thrush. When I was going thru RT, the hospital gave me some recipes for smoothies. I still have a few a week and I will often add yogurt to it. Perhaps it will be easier to drink a smoothie as you can make it thinner and add things that won't burn your mouth or upset your stomach. One of my doctors had suggested olive oil to sooth my mouth.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Kerri #179933 05-05-2014 11:40 PM
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Kerri Offline OP
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Thanks, Susan.
I'm trying some soy milk right now because I had to get up to take the magic mouthwash.

It seems like dairy irritates things more, especially should not have gotten chocolate Ensure!


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #179938 05-06-2014 07:29 AM
Joined: Dec 2010
Posts: 5,260
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Okay call me crazy - if you want to try this - do. Nystatin didn't do anything for me post treatment when I told my RO i was coming down with thrush, so I went back to a tried and true treatment I'd been using through rads. Manuka honey.

It's about $20 a jar (try using 16-20 umf - organic). Take a spoonful. Let it melt in your mouth - swish for a few minutes (1-3) It works like hydrogen peroxide and is anti fungal. hopefully it will help.

Thrush sucks and can be quite painful.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Kerri #179950 05-06-2014 12:04 PM
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For mouth pain and sores, there are several things to try. Baking soda and salt mixed in warm water. Swish around for a minute then spit. I used a teaspoon of each in a glass of water. Mix well.

The magic mouthwash works but the main ingredients are Benadryl and lidocaine. Ask the doctor for liquid lidocaine and mix with some Benadryl. Swish around and this will ease the mouth pain. Check with doctor before you become a junior pharmacist though. :-)

The other thing I did was when I had serious open mouth sores was to just take raw salt and rub it on. Yep, it hurt but felt better after the initial treatment.

One other thing to try is high PH water. It is very soothing. Give it a try. Look for ph 9+

Last edited by donfoo; 05-06-2014 12:05 PM.

Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Kerri #179952 05-06-2014 02:59 PM
Joined: Nov 2013
Posts: 104
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It takes almost 7-10 days for the nystatin to really knock thrush that's why the scrip is 14 days... You will get a lot if relief in the first 2-3 though. I'm not sure on the manuka helping this aspect of your journey... You really want to cut down on sugars as yeast thrives on it. Unpasteurized yogurt is great, the baking soda and salt swish, and I also used a 1:10 ratio of hydrogen peroxide to water mix to swish/ and brush my tongue with, definitely don't swallow it tho.



Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
Kerri #179956 05-06-2014 03:59 PM
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Posts: 596
Kerri Offline OP
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Thanks for the advice, guys. I have missed 2 days of work and I'm guessing I won't be in on Friday. (I work part-time.) Considering, I am barely able to talk, swallow, etc. Believe me, it'd much rather be at work! This is awful!

I am going in for a check up with my medical oncology team tomorrow.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #179959 05-06-2014 07:56 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Sending you hugs and many positive thoughts Kerri.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Kerri #179974 05-07-2014 07:17 AM
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Hi - re manuka / sugar. It actually helps in wound healing same premise as oral ulcers and thrush. It may or may not work on an individual basis but I found, for me, that it worked way faster than the nystatin, (like 2-3 days) and as for sugar, it is sweet, but not a sugar sweet. The study actually said you could use it without concern for cavities etc, because it is also antibacterial. Therefore it actually worked against plaque which is what damages teeth. It's antiinflammatory/antibacterial/antifungal/and antibiotic in nature...

Just throwing it out there. That said it's an individual choice, some people swear by it - some don't just wanted to clarify fact wise what it's actual properties are.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Kerri #179988 05-07-2014 05:16 PM
Joined: Aug 2011
Posts: 596
Kerri Offline OP
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Hi, friends!

Here's an update for you all.

I went to the MGH cancer center today and was thoroughly evaluated by my fellow MO and an attending MO, not my primary MO, but I have seen him a few times over the past few years and have been quite impressed with him.

They scoped me and agreed that my problem is indeed thrush and that it has traveled down to my larynx and most likely down my esophagus (as I suspected since I felt like everything, including fluids, has been getting stuck before entering my stomach). All other structures seen through the scope looked "great", which is always assuring.

Since it has been very difficult getting in anything orally, they recommended that I stay a couple of hours for some IV fluids. They gave me a 2-week supply of diflucan, which should wipe out the thrush/candida systemically and I will no longer need the nystatin. I am also grateful that it will take care of the thrush that has extended into my esophagus and now beginning in the "lady parts" (please excuse me, guys).

I do have to have EKG monitoring due to Diflucan being a medication that can cause lengthening of the QTc interval and cause a potentially life-threatening arrhythmia. I normally take 2 other drugs that have the same potential, so I get periodic monitoring. Today's baseline was normal, but I have to be checked on Friday and Monday with repeat EKGs while I am on this drug. I'm glad that they are covering all of the bases.

I was scheduled to have my routine MRI next week, but they pushed it back a week in order to let things "cool down" in order to avoid any unnecessary areas lighting up with the contrast.

So, here's to speeding up this recovery and feeling better soon! I'll let you know how things are going. Thanks for all of your continued support!

xo,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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