#92542 03-25-2009 12:41 PM | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | I had a bilateral ND on March 2. As far as I can tell I am healing well. I can turn my neck enough to drive. Getting around the house nicely. I even did a little yard and house work this week.
The problem is this. I am still swollen in my jawls area and because of that I can not chew. I simply can not get the top and bottom teeth together.
I have a PEG and I have been using it for months, but I would really like to eat something. Even if it is just an egg!
I don't have another appt. with any of my doctors for weeks. Should I call and make a sooner one? With who? Are there exercises to help me correct this? (Ice isn't helping)
Any suggestions. Please
Thanks
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You have to exercise your mouth movements. Practice openeng and closing. Try to open it as far as possible. It will lossen up. THey should have told you that Amy. Go kick butt so they remember next time.
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 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | When did your treatments end? I had the surgery first then radiation but I would think 3 weeks out that you'd be easing back into soft foods like Jell-o, apple sause, eggs, chicken noodle soup. Regarding your appointment, you might want to move it up a bit so your Dr. can take a look. Good luck.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Amy
I had my neck dissection a month ago today and my jaw split open mandibulectomy)spread out sideways ear to ear (jaws are hinged to go only up and down and left right, not ball and socket joints to rotate so it's painful). Yet I was able to put my bottom and top teeth together in the ICU despite massive swelling and five bloody drain bulbs. Something is not right here. I recommend calling your doctor asap and getting a prescription for physical therapy with a hospital that has a cancer center. There are lots of exercises to help with this problem but it is best to have a professional teach them to you so you don't inadvertently hurt yourself.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | Amy
Everyone is different cant be more true in these types of circumstances. While some of us are able to eat right away, others will take much longer. That should be discussed with your doctor who knows the depth of your surgery and how long your recovery should be. For some, they can swallow daily, for others it could do great harm and it could cause asphixation. Please ask your doctor.
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: Aug 2008 Posts: 113 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 113 | Amy....There are swallowing therapists who deal mostly with Oral Cancer Patients. That's where you want to go. Jim started with one but it didn't last too long as he had a recurrence (mouth tumors) so needless to say we had to stop our appointments. I must say though, if he didn't have the recurrence, I am sure he would be swallowing by now. Hang in there.........and keep us posted.........Claudia
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Thanks everyone. I am lucky enough to have a local Head and Neck Cancer support group that meets tomorrow evening. The head of the group just so happeneds to be a Speach Therapists! I will take to her tomorrow afternoon.
So far as my Dr and what he thinks. He told my husband at the hospital that he was putting no restictions on me, I can eat and do whatever I am able to do. Everytime I have tried to ask him a time frame type question. He throws it back in my lap and says it really depends on me and how fast I want to recover. I would think that since I try to get out of my house and go somewhere and do something everyday that that is a good sign that I would like to recover quickly. I try to push myself daily. I have never been one to lay around (except for durning my chemo/rads that was hell)
I'm just frustrated. Again thanks for your answers.
Amy
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: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Amy - Which hospital are you going to in Florida? My husband sees doctors at Shands in Gainesville and David went to Moffitt. Best wishes to you! JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Baptist in Pensacola it is a Moffitt affiliate.
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: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Thanks Amy - Let us know when you are able to start eating again, and keep us updated. Thinking of you....Jane
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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