| | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | So true....as I always say...the kindness of the people here amazes me. It honestly brings tears to my eyes that there is such kindness in the world.
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:)
| | | | | 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 ... How are you today? Hope your nasuea is under better control and you are able to get something to stay down. Im going to check you out on facebook for an update.
Jim and Suzanne, thank you very much for being so kind. I am fine, no reason for me to complain. Ive lived thru so much worse that this is nothing to complain about. We all suffer from after effects in one way or another, cant let them live our lives for us gotta move on.
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 | I figured that I should stay in this tread - I'm home from the hospital. Having IV antibiotics for the next 10 days at least. Had a CT and they found a big abscess from the dental work and the cut it open and it is draining now. I feel 200% better than I did on Thursday - according to my ENT I did what was right - we just had trouble identifying what was going on - all the swelling and hardness in my neck is in the same area as my where my flap comes up through my neck so it has been a tuff ID. When the poison stuff got in my stomach it made it a little easier. I'm going to lie down for a bit and will check in later on. The dentist is fired, because the docs say I did what I should have done with him too (this makes me feel a little less stupid for once), but he did not take some reasonable precautions based on my condition that he should have known to do - being a specialist and all. When I feel better I might me a little angry with him Thank you for all of your well wishes while I was away from home - I did not even feel good enough to worry about the lap top this time. Jim it is too early to plant - we are having a blizzard this weekend silly. Patty
Last edited by Good1; 04-05-2009 01:11 PM. Reason: numerous typos
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
Im so glad to see your post. I was worried when I read on facebook you were off to the hospital. Thought they might keep you for a week or so till you stabalized. Glad they fixed you up and found the problem. Hope you feel better very soon.
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 | Thanks Christine. Once we did the CT scan and found the abscess the rest has been not really easy, but at least we had a direction. What is amazing is that most of the symptoms started about 5 weeks ago after the 2nd dental appt but my ENT and I were not able to identify it as this.
I started PT because of the pain I was having in my neck, down in my right shoulder, elbow and arm. This is the same pain that was keeping me up at night. According to my ENT another 14 hours and I would not be talking to you. Guess I am lucky that the poinson in my stomach made me sick huh?
I still have some healing to accomplish especially since we had to cut a hole in the side of my face to drain this mess but I can't believe how much different I feel already.
Off to bed so I can get things back in order - I just lost another week of my life.
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: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Reading through these posts again I am surrounded by such a wonderful group of people. It is like having a family that understands what is going on in your life.
Thank you so very much.
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
You know we are here for you. Sure hope you start to feel better soon. I had been like you where it seemed like I couldnt get to a point where I felt good. That was last year, Ive worked very hard with lots of therapy, surgeries and HBO to get to the point where I feel mostly ok. Hang in there it will get better. You need rest and nutrition to heal.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You people are so special to each other and to all of us. I hope we all get to be together in the next world we go to. Now that really would be heaven....
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | We should all try to get together in this world first - I am sure that we will be in the next world Jim.
Thanks for the encourgement Christine - I feel lousy. I'm even drinking Ensure trying to keep my calories up. The good news is my throat is not constricted bt the abscess as much and I can now swallow.
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 2008 Posts: 51 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Jun 2008 Posts: 51 | Dear Patty, I am two years ex tx, and the pain in still here and finally I have given into my GP and Pain Manangement Specialist and am on a regular regime a Norspan patch 20mg (which I may have to ask to be upped a bit) MS Contin slow release 20mg Ordine 5mg/ml and Tramal and Mersyndol or Panadeing to be taken when needed. The patch lasts one week. My ENT has finally told me I may have pain for another year or two or three because of the amount of surgery and the damage caused by radiation therapy.
I thought for two years that I was a wooz, even though I normally have a really high pain tolerance level.
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
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