| | Joined: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2011 Posts: 131 Likes: 5 | . I've already had to take 100ml liquid Oxy today because my mouth/tongue pain is so bad. That's on top of a 75micro fent patch last night. And...it still kills. The only thing that is helping is the BLM mouthwash which has the lytocaine? with pepto mix. I wish they had told me how much I was going to need this stuff. I would have used a lot less of it over the past 10 days and not left Mass for the weekend with such a small suopply of it. I don't want to take any more liquid Oxy/fent tonight because it already has me nodding off. (that is for the short amount of time while the mouthwash is working or until I put ANYTHING in my mouth). so my problem is that I'm almost out of it and I was wondering if anyone (who might be up) can recomend something that I might have lying around the house. Just even putting a small piece of chocolate on my tongue will burn soooo bad and wake me right up so I can wrtite this without nodding off. Thanks.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Hi Maine....sorry but you need to see your Doc for more pain relief. You cannot tolerate the pain and it needs to be controlled. It is one of the most important things....keeping pain under control.....
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hey will it's late now because it's morning but the burning might be thrush - I think I have a little too and i will show it to the dr. Today. They have meds to heal it, and yes get more of the magic mouthwash. I've had it from the beginning and just started using it yesterday. Take care - three more days!
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
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Call your Dr and ask for the mouth wash. I'm sure they will call in a refill. I get 2 refills each time they call in a script for it. It usually lasts about a week and a half before I refill. Remember, most Drs want you comfortable not miserable.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Since your current patch doesnt seem to be working then it would be a good idea to ask for an increase to the 100mg patch. For about a week at the very end I was on 150 mg patch. I used the 100 for about 6 weeks before and about 2 weeks after the 150 mg. The increase should control your pain enough that you will feel much better. Then you will still have the oxy for any breakthru pain. You will still need the magic mouthwash, make sure you get lots of refills.
Hope you get the pain under control. So far you have done an amazing job! How many rads do you have left?
ChristineSCC 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  | | |
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