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Joined: Oct 2016
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Hi everybody,
I have a lot to ask and I'm going to try to make this as short as possible giving as much information as I can...

About 4 months ago my mom had surgery on her eyes to lift her eyelids (handled by insurance but somewhat elective). She has battled problems with an exposed bone in he back of her mouth where after sugery she had a skin graph that didn't take very well and ever since she completed radiation she will develop an infection and she takes antibiotics and it will go away. About 2 1/2 months ago she had a PET scan that showed no cancer anywhere but the same spot where the bone is exposed lit up and the person that read the PET scan noted on the report that it was a recurrent tumor. Her doctor did not seem concerned and she went to see him about a month ago and felt in her mouth scoped her and everything and found nothing that seemed like a recurrent tumor.

After the eye surgery my mom says that an area on her jaw felt kind of numb and she has not gotten the feeling back. Then she started feeling what she thought was another infection on Sunday and she mentioned that her mouth was getting harder to open and today she says she can barely get one finger in her mouth. She has an appointment with her ENT tommorrow. I am inclined to think that she has had osteonecr... in the exposed bone area and that this most recent happening of trismus is caused by the dead bone (after reading up on some case studies this is what it sounds like) but I think what I really need is some input from you guys to help put my mind at ease. I know when she had the eye surgery they obviously had to cut through the skin and nerves etc...but up until she had this surgery she would get a minor infection in the exposed area and she would treat with antibiotics and she would be better in a few days.

Please let me know what you guys think?

Thank you,
Dani confused


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
Joined: Jan 2004
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Hi Dani,
I dont know enough about osteonecrosis to give you any sound advice. I just dont know if I would feel comfortable with the radiologist's reading of my pet scan. Did your mom see her ent yesterday. Please let us know how it went. Praying it is nothing serious to worry about.


SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
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My mom went to see an intern at the ENT's office on friday. I waited until today to post because we had a birthday party for my 3 year old daughter yesterday and today I can finally let myself cry. Her ENT was in surgery all day Thursday and Friday so he could not see her but the intern talked to him when she was checking my mom. Her findings were inconclusive so she scheduled a CT scan for Monday and we will get the results of that on Wednesday. She said that her concern is not the swelling but that the area is hard. I felt it and it is hard and its tender to the touch but that could just be from her putting popsicle sticks in her mouth to try to open it more. She is able to open it a little more each day. I am so scared right now and my mind keeps racing back and forth trying to convince myself that everything is ok. My fear is that she has had the maximum dose of radiation so what happens if the cancer is back? I don't know if she could endure more surgery after everything she has already been through. I am litterally sick to my stomach....

For those that knew me going through my mom's battle when she was diagnosed the first time I was 4 months pregnant with Keeley my mom's first grandchild and I kept saying...I just want Keeley to know her gramma because she is such an awesome person. Last Tuesday when I was putting Keeley to sleep she said, "I want my gramma" I said which gramma? and she said my big gramma. My mom is 5'8 and my husbands mom is 5'0 so I knew she was talking about my momma. I called her right away and let know what she said. She was sooo happy and this was before I knew there was anything going with her face. My mom spent last weekend with us everything was fine so I'm in shock that all of this just happened overnight...

I wish I had some reassurance that everything would be ok...

Thanks for listening.
Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
Joined: Apr 2005
Posts: 2,676
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Deep breaths-Dani-Deep breaths. Wednesday will get here and you should have some answers then. Meanwhile, play with Keeley. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Thank you Amy...your post means a lot...

Hugs,
Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
Joined: Aug 2003
Posts: 1,627
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Dani,
I'm saying a very special prayer for you and your mom tonight and will think of you guys alot from now until Wednesday. I'm sorry this fear is back in your life. I can only imagine how you and your mom feel, it turns everything upside down. BUT, for all we know this is NOTHING. For all we know your mom will be fine. I choose to believe that until someone else tells us different. Give her a hug for me.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Thank you Minnie you have always been such a great support for me and my mom. I am trying to remain calm and I know that she is too. I spoke to her 4 times yesterday and one of the times she broke down saying how scared she is and that she has a bad feeling...but then when a talked to her a few hours later she was much more positive. The unknown is so scarey but I have to keep myself together for my family.

Thank you again for the support.

Hugs,
Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
Joined: Oct 2016
Posts: 284
Gold Member (200+ posts)
OP Offline
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Joined: Oct 2016
Posts: 284
Well its Tuesday and we are meeting the ENT tommorrow at 11am to review the CT scan they did on Monday. I feel a little better because my mom says the swelling has gone down a bit so that makes me have hope that it is just another infection. I will post tommorrow when I have the results. For those that pray...please pray for her we need all the help we can get right now. Thank you!!!!!
Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
Joined: Oct 2016
Posts: 284
Gold Member (200+ posts)
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Joined: Oct 2016
Posts: 284
Well we saw her ENT today. He is at UCLA. He used to have an office in Santa Monica and now its at UCLA so its quite an episode to go there. My mom, sister and I had to laugh because we were there right about lunch time and they were setting up for a conference in the waiting room so they kept making us move all over the place and at one point they wanted us to stand out in the hall where we couldn't even hear if they were calling her name. When we finally got called into the room her ENT came in and started feeling around asking if it hurt here and there etc...then we asked about the scan and he said "did you already do it?" and so he went to check it out. Then he took us over to the computer and showed us her scan and described everything in detail. It was really interesting. He said that if he hadn't been her doctor for the past 6 years and he hadn't performed her surgery that from the scan it may appear to be a recurrant tumor but he does not think it is....(can I say I've never felt so relieved) My mom gave him a huge hug!

He showed us that where her swelling on her jaw is there is a muscle and the muscle is swollen therefore giving her the hard lump that is on the side of her face. I told him that he should let his residents know about the muscle. Had we known that it could have been the muscle and not a tumor we probably wouldn't have gotten so petrified. I made him promise that in the future he will not send her to residents when it is something so serious. He said that since the muscle is swollen it is causing her to have difficulty opening her mouth. He thought it was strange that she was having trismus over 2 years from completion of radiation but after going over her history of infections just about every 2 months he said it was very possible. Since my mom started her antibiotics a bit too far into the infection it is taking a bit longer to heal.
He finally confirmed that the bone is dead so he said that she might not want to hear it but that she could possibly need surgery. I would be a similar surgery to Minnie's (removing the dead jaw bone and replacing it with a bone from her leg) but in all honesty I know the short term would be difficult and he said he would not mention it if she wasn't so young but in the long term it will improve her quality of life. Although she has said in the past "no more surgery" she actually agreed to have it if necessary.

So here is what he is going to do. He is going to wait until next Wednesday to make sure the swelling has gone completely down and then he will determine if he feels the surgery is necessary. He said since she continues to get infections in the bone after a period of time the bone may eventually shatter and her jaw could break. He said there is no reason to biopsy because there is no area to biopsy. So we left there totally relieved.

Thank you for all your help and prayers. I will post more when I have the details next week.

Hugs,
Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
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Hi Dani,
I was so HAPPY when I read this from you!! I bet your mom slept well that night, such a scare for her.

Tell her for me that if she needs this surgery, she will be just fine. It's not something anyone wants to do but it is not the nightmare it sounds like it would be. And I can attest to the fact that the new jaw works great and looks great. Also, it sets her up for implants which are fantastic and no more infections in her future.

Again, so happy for you and your family. Let me know what they decide about her surgery. I'll talk you guys through it.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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