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#158587 12-06-2012 06:59 AM
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Good morning everyone, and if I haven't said thank you for being here, "Thank you." I was up most of the night last night just waiting for the 4 hour mark to take pain medication that doesn't do much. The doc has me on liquid Lortab, 2 tsp every 4 hours as needed. It's like there was just a bit of pain when swallowing, and then, "Bam," super pain when swallowing. My neck is super swollen this morning, too. Please tell me what some of y'all took that was successful with minimizing this pain. I also have the magic mouthwash that doesn't do much either. Help!


Barbara/Babs/BJ
Oct.8,2012
SCC BOT WITH LEFT NECK LYMPHADENOPATHY
Mod rad neck dis,left, levels I through IV
partial gloss
microdirect laryngoscopy with biopsy
bronchoscopy
lingual tonsillectomy
HPV
rad-rapid arc imrt x35
cisplatin x3
barbara WHITEHERSE #158594 12-06-2012 10:54 AM
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Barbara - When my son took the Magic Mouthwash, it only worked for a little while. He then went to something over-the-counter that the pharmacist recommended and that worked pretty well but just for a short time. The good news is that when he went back to the Magic Mouthwash, it started working again! Maybe your doctor could recommend a substitute for the Magic Mouthwash? Also some people on this forum have used Manuka Honey #16 (available at a health foods store) and got some good relief, but it is very important that anything you take should be checked out with your doctor first. For more information on Manuka Honey, check out this link from the Oral Cancer in the News site:
http://oralcancernews.org/wp/?s=Manuka+Honey
Sure hope you get some relief soon!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



barbara WHITEHERSE #158597 12-06-2012 11:27 AM
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Most here eventually had to go to heavy duty pain meds, in particular, the Fentanyl patch in conjunction with meds for "breakthru pain". At one point, Bill was prescribed liquid morphine. So..like I say...heavy duty.

You should not be in this amount of pain so I would say consult with your physicians and get this under control.

Sorry..and hope you feel better soon,

Deb

Also, once on these drugs, you will need a period of ramping down to wean yourself off of them...do not do it cold turkey.



Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
barbara WHITEHERSE #158598 12-06-2012 12:10 PM
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Corticosteroids to reduce inflammation, like prednisone.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






barbara WHITEHERSE #158599 12-06-2012 12:29 PM
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Magic Mouthwash is a compound prescription that usually consists of 3 different medications � the medications can vary so some may be a �swish & spit� and others may be �swish & swallow�. Since the medications can vary, perhaps the one you have does not contain a pain medication. Check with your doctor on the components of your Magic Mouthwash.

I was also prescribed Lortab. My instructions were to take up to 15 ML every 4 hours as needed (I believe 15 ML is more like 3 tsp.) Check with your doctor to see if you can increase your dosage of Lortab.

Like many others I was also prescribed the Fentanyl patch for pain � started at 25 mcg, then 50 mcg, and my highest dose was 75 mcg. This and the combination of Lortab was what finally got my pain under control.

Being in pain doesn�t help with the healing, so check with your doctor to see if he will prescribe something else to help.

Like Paul, I was also prescribed prednisone for the inflammation.

As Deb pointed out, once on these drugs, you will need a period of ramping down to wean yourself off of them...do not do it cold turkey. This also applied to prednisone.

Be aware that one of the unpleasant side effects of pain medication is the little �c� � constipation. This can also cause you a lot of discomfort and pain. So make sure you drink a lot and perhaps add a stool softener (again, check with your doctor).

I hope you feel better soon!


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: 2013-2025 (ORN of lower jaw)
barbara WHITEHERSE #158600 12-06-2012 02:16 PM
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Barbara, so sorry to hear your pain has increased so much. Make sure you contact your doctor right away and ask for something stronger. I would suggest asking about the fentanyl patch. Its easy to use, just change it every 72 hours. You need to follow the directions exactly with no long hot showers or baths, never cut bend fold or tear the patch. Always put it on in a different spot. Fentanyl is the strongest pain medication out there. A good starter dose would be 25 then you can move up to 50 or 75. It will take 24 hours to kick in and you want to gradually increase the patch just like when you want to stop using it, step down. Magic mouthwash is ok for a short period of time to try to eat or drink but not for any long term relief.

If you get the patch today, you will feel better tomorrow. Also continue with the lortab for bad days when you still hurt even with using the patch. Its ok to use it from time to time when the pain is really bothering you. It does not help a patient to be in pain so please call the doc for meds and dont suffer.

Best wishes!!!


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
barbara WHITEHERSE #158609 12-06-2012 06:58 PM
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Sorry things are getting harder it's not a fun road to travel at all. Definitely push for different meds. Hugs! One step in fron of the other my dear! smile soon you'll b at the end...

Last edited by Cheryld; 12-06-2012 06:59 PM.

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

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