| | Joined: Mar 2007 Posts: 55 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | Hi everyone,
I'm coming up on my 4 year mark. Had a clear scan in January. Started having PAIN big time that has been getting steadily worse over the past couple of weeks. I've been taking 800 mgs ibuprofen every four hours around the clock for said pain - even waking up with the pain and taking meds at 4:00. It HURTS!!!
I went to my surgeon today, they fit me in. He couldn't see anything obvious, prescribed neurontin and a medrol dose pack. He then said that if the pain didn't resolve with those meds, he'd put me under anesthesia to go looking for a possible recurrence. I have trismus, so I know it probably isn't easy to look at my mouth. After I left, I wondered what he meant by putting me under anesthesia to look. Has anyone else had that experience?! Is that just because he needs to have me out to manipulate my jaw to open wider? What does that mean?!
Lisa
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | 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 | Lisa, sorry but I cant second guess what your doc meant. Who did you see, your oral surgeon? How about going to your oncologist? Who you go to for regular check ups? What about an ENT? That much pain is not a normal thing, you need to get checked. Of course it could be any number of different problems. A bad infection could cause swelling and pain. If it were me, I would call my ENT (thats who I see most often and who oversees my care) and tell them whats happening. Ask for an immediate appointment. If they try to make you wait for several weeks, speak up and tell them you are a cancer patient and are concerned that your problem is a recurrence. Good luck!
Remember its NOT cancer til a biopsy says it is!
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: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | Hi Christine,
I see my head and neck oncologist/surgeon at MD Anderson - I'm in good hands. He listens to me, and stays on top of things. I didn't think to ask him what the heck he meant by putting me under anesthesia to go look for a cause of the pain/recurrence. I'm an RN, so sometimes I think he thinks I know exactly what he's saying....I was more focused on the new drugs (neurontin and medrol pack) in the hopes that would fix my pain issue, but then didn't shift gears fast enough to ask for clarification on the putting me under anesthesia part. The good news is that I go back on 3/22 or sooner if the new meds don't take the pain away.
Lisa
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | 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 | Hope the meds help you. I take liquid neurontin, I have for a year and a half. I like that medicine, it works on the muscles. When I take it for my bad shoulder, it helps any other little aches and pains I have which definitely works for me!
I hope your problem resolves itself. I wouldnt like having an exploratory surgery either. Oh yeah, almost forgot about the trismus. I have that too and my docs told me that dont worry, when they put me out that they are able to stretch my mouth open wider than I can when Im awake. Not sure how and I dont think I want the details but when I wake up I normally dont hurt in my jaw area.
Good luck with everything!
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: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | Hi Christine,
That is very good news to hear - I was wondering how sore my jaw would be if I had to have that done! Did the neurontin take a little time to start working, or was it right away?
Lisa
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | 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 | Neurontin starts to work about 20 minutes after you take it.
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: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | Hmmmm.....then it isn't working very well for me then! Rats!
Lisa
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | Joined: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | My pain has intensified. I haven't been able to eat all day. I had tears pouring out trying to just tolerate soup at lunch... While the pain seemed diffuse a few days ago (all over the left side of my mouth - original site of the tumor), now everything points to great pain under my tongue where the tongue meets the floor of my mouth. I don't feel anything rough, can't see anything because of where it is. Neurontin doesn't do squat. Taking 800 mg of ibuprofen every 4 hours which is now causing big time stomach upset - so added Prevacid. I'm calling the doc tomorrow morning. Sadly, he's only in the office to see patients on Tuesdays and Thursdays...
Grrrrrrrrrrrrrrrrrr. Not a happy camper.
Lisa
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
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