| Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Good luck Patty
I'm glad that you got the appointment so soon with the doctor, you shouldn't have to put up with all that pain. Not being able to sleep only makes matters worse. Most of us here know that.
Perhaps the physiotherapy has been too rough on your neck and jaw area so soon after your radiotherapy.
Thinking of you ((((hugs))))
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Hi Patty Hopefully you have now come back from the doctors with the pain medication. It has already been said but everyone has a different pain threshold. Have been told mine is fairly high but that does not stop me hanging on to my unused medication. I asked for a new script on Saturday after my recent operation even though I still had some from the previous one. I will get that script filled soon and keep these as a �just in case� backup. Hopefully your medication kicks in soon and you are pain free. Adding my {{{{{{{{{{{{{{{{{hugs}}}}}}}}}}to the others Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Ok I am back and wearing the patch. My ENT does not think it is the cancer returning, but an infection related to the crown replacement that the dentist did two weeks ago. It makes sense time wise from when I started to suffer.
Once my sense of humor returns I will find it funny that I had to go to 4 different CVS Pharmacies and meet my doctor in a parking lot to get her to sign my narcotics prescription on the back of some guy's car who was none to happy about it.
I have antibiotics, prendesone for the swelling and the patch along with my hydrochodone for any break through pain. I just hope that something starts working soon. My ENT did ask if the dentist put me on any antibiotics before starting treatment. Obviously not and I wonder why.
With this, the fact that he hurt me at the last appointment and did not stop when I said stop (I was off of my seat grabbing at him so he knew I wanted him to stop) and the attitude from the receptionist since I went on Medicaid he has probably just become my ex-dentist. I was planning to pay over $1000 in COBRA to get my teeth finished with him through my old insurance since he does not take Medicaid and I will not be hurt, allowed to get an infection and talked down to while I spend money.
I will go feed my poor starving dogs now and take it easy tonight. I am hoping for some sleep later, but I will check in after a little rest.
Thanks for all the well wishes guys. It really helped make me stronger.
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
| | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | Patti, I'm glad your feeling better. I think you should get ride of the dentist too. The dentist should not hurt! Also, Medicaid pays for dental work in Illinois? I am so jealous. I have to pay $2000 a month before anything gets covered! And no dental at all. At least my dentist takes payment. I hope you sleep well tonight. AmyK
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side. ND March 2, 2009 reoccurance dx'd Aug 19, 2009
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Oh Amy ouch!! Well replacing my teeth is considered medical. My spend down is less a lot less than yours - only about $375. I'm not feeling great. I did get some sleep - I woke up a few times, but I had myself doped up enough that I barely noticed.
My jaw feels like it is on fire. I also threw up my first feeding this morning before I started taking any meds. I just started over. I still really hurt and I cancelled swallow therapy for today. I'm just not up to it.
I am just about angry though. I specifically asked this prosthodontist about HBOT and he said "oh no you won't need all that" and went on to tell me how awful the treatments were etc. My sister has expressed concern about his sterilization practices, but she is always fighting germ warfare even in her own home. I just know that I would hate to think that I am feeling this way because I chose a dentist who really did not know what he was doing.
I am going to rest and then try a shower and some more meds. It amazes me that it can still feel like this with the patch on. At least now I know why I felt like I was not making progress but slipping backwards the past couple of weeks. Now we get well and move forward again.
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
| | | | 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 | Patty
First I want to say I hope you feel better. Sorry you are not doing so well right now. Hope tonight its easier for you and tomorrow is a better day.
Ive done 85 HBO and it is the easiest thing Ive done thru this whole ordeal. You lay in an oxygen tank for 2 hours and do nothing, no big deal. You can sleep or watch tv and wiggle around all you want. Its also something anyone who has had radiation for OC should be doing before having dental work done.
Might be a good idea for a second opinion about HBO. I would think if you even have the slightest feeling of uneasiness about your dentist then it would be a good idea for another opinion. Even people on here who have done HBO for dental work will tell you about it. You do not want to end up with far worse problems due to a short cut.
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 | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Christine
I really feel like a dumbass right now because I know that the HBO is something that we should do before dental work. Especially since I have had radiation twice. This guy was only going to remove and replace my crown before starting on my dental prosthetic, but he drilled out some decay he said. I remember him saying that it was a little deeper than he thought. I think I may have made a huge mistake by trusting him.
I keep throwing up today. I will be back later
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
| | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | What strength patch is that? Have you taken it before? I'm worried that you keep getting sick. Your not eating anything with pistachios in it are you? Double check. Any other symptoms? What about anitbiotics? You should not be sick on your stomack. Something is causing it we need to figure it out.
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side. ND March 2, 2009 reoccurance dx'd Aug 19, 2009
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | It is strange Amy. I was fine last night with the patch - it's only .25 and I had the patch before while I was having chemo and before surgery. I doubt that I have eaten any pistachios. I took two separate doses of the antibiotics (amoxxicillin) last night with my tube feeding (one early and one right before bed) and the Hydrochodone after taking it and the Xanax all day while I got the appointments over with. This morning I blamed the antibiotic and not having enough in my stomach. So I waited an hour and tried it again and seemed to be OK. But if I get up and move about I get sick.
My second feeding did not last. So now my plan is to not do any more Hydrochodone and try to get another can of food in before trying my antibiotics again. I am having break through pain but I will live with it if I can stop throwing up. I felt really good this morning when I got up. Very little pain, the swelling was going down and it has been a down hill kind of day.
I will call the doctor again in the morning if it doesn't straighten out or the Tele-nurse tonight if I keep throwing up. My doctor went on vacation today, but she told me she has her pager and they can get in touch with her. She may still be here in town, she is only going over to IA to visit her mom.
I'm trying to relax and lay around as much as I can, but now that I'm starting to hurt again that part is not easy either.
Thanks for the concern Amy and I will keep you posted as it gets better because it has to from here. LOL
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
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Patty,
So sorry to hear about your troubles and pain. It can be so frustrating!! I get mad when my pain isn't going away and I think it should be. I like that your doc signed your Rx in the parking lot...lol Too bad the guy got mad about his car....didn't he know you are a woman in pain?!?!? I really hope something helps for you soon. My doc gave me Ultram and it worked like a dream. It probably wouldn't be strong enough for you but everyone's body chemistry is so different it may help with the break through. It's not a narcotic so maybe it will help with the nausea. I'm thinking of you and cry whenever you want, that's what we're here you. We all care about you very much. xoxo
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
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