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margaret_in_ma #88382 01-18-2009 09:46 PM
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Geri Offline OP
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Hi again, The only problem Richard is having right now is Thrush. They put him on Diflucan. He started taking them on Friday for 10 days. I'm wondering if this will last through treatment or come and go. I've heard of Nystatin and oral gel clair. Is anyone familiar with these meds? Margaret, I'm glad to hear you were able to keep up with your routine and thanks for the feedback about Emend. Lori, thanks for your post. I'm pretty sure we will be dealing with one thing after another. Richard had such a violent reaction to the first chemo that it totally threw us. We were expecting problems, just not so soon. Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
Geri #88383 01-19-2009 01:28 AM
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Rob had thrush from day three and was on Nystatin throughout his treatment.It came in the form of a liquid and a dropper,which was quite easy to use.

Robs pain med schedule was

Fentanyl,Morpine,Soluble Paracetamol,Voltarol.Different types of meds are required for different types of pain surprisingly,so one size does not fit all.Large doses of fentanyl or morphine DO NOT necessarily eliminate all pain types,particularly nerve pain like trigeminal neuralgia.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #88386 01-19-2009 04:28 AM
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Thrush is something that is very sneaky. Ive had it 4 or 5 times sine OC. Be aware it can and does come back and it moves very quickly. Ive taken all those meds for it, they do work. My favorite is the lozenge that dissolves in your mouth, very easy.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #88399 01-19-2009 07:07 AM
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I think a lot of us have struggled with the thrush. I had it several times throughout my first round of IMRT. I had both the Diflucan and the Nystatin and had success with both like Christine.
I was usually able to tell I was developing thrush by an odd taste in my mouth. The white patches are one of the symptoms but with the IMRT I had those all the time and they weren't necessarily thrush. But every time, I developed an odd taste in my mouth. I can't describe it but it was a noticeable change.


Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
Steve J. #88443 01-19-2009 05:13 PM
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I also had thrush several times. My did not show up until 5-6 weeks into the action. I think where it bother me the most was after treatment. I was not feeling well, working some, putting off calling the Dr and did not pay attention to my body. Then I would need to call and get a script. I would have a funny taste and white patches.I responded well to Diflucan.


Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
Steve J. #88448 01-19-2009 06:00 PM
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They told me at the CCC, that I held the record for being on high dose Diflucan (400 mg/day) for the longest time (although AIDS patients have way higher maintnance doses) of any of their H&N patients. I read somwwhere that the maintenance dose for thrush is 50 mg/day but I would double check that with a pharmacist. I tried Nystatin too but that orange flavored crap left a gross taste in my mouth -almost as bad as Boost or Ensure.
It's hard on the liver (I have hep C) so I take Clotrimazole troches now instead.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #88551 01-20-2009 07:01 PM
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Posts: 126
Geri Offline OP
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Well, after a wonderful weekend, we are back to reality. Because of 2 mouth sores, Richard will drink his first ensure+ and try the peg tube tonight. This seems too soon to be having this problem, but I'm learning to expect the worst and be happy for any good times. The RO gave him some oral morphine to use on the sores, but it doesn't seem to be helping. We will see her tomorrow and see what else we can do. Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
Geri #88552 01-20-2009 07:11 PM
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Ask the doc for magic mouthwash. It has several names and combos. Mine was lydocaine, malox and benadryl. It helped so much. Just swish it around in your mouth a few seconds then spit it out. It will numb his mouth and give him some releif.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #88554 01-20-2009 07:34 PM
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Posts: 489
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Geri I had the same "magic mouthwash" that Christine had and it was a big help.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #88577 01-21-2009 06:25 AM
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Make sure he try's to swallow every day to keep those muscles in tone.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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