| | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Happy to hear you are going home Michele:)
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Any more updates? I can not believe I missed this. I am so glad you got to go home. How are you feeling now? I will be praying for you.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2010 Posts: 71 | I made it home...still have arches and wires with rubber bands on my mouth and the feeding tube. It all comes out on Monday. Mouth is SO dry, and he wants me to rinse with mouthwash with alcohol...making it worse. I can drink but it is difficult so I pretty much use the feeding tube to eat and just drink water through my teeth.
I go Monday to get this stuff out and meet with the radiation and chemo drs to see what the new plan will be. Either way they are trying to get me to a 3 month PET scan so they can see what cancer is left and maybe use the radiation knife to get what is left.
Just so uncomfortable I haven't been able to post. Still sleeping on the couch as I need to nearly sit up.
Michele in IL
Female - 53 no smoke/drink
tongue Biopsy 8/2010
Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear
Radiation started 11/2, ended 12/17
Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22.
passed away 1/12/12
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | So glad to hear from you, Michele - but sorry you have been so uncomfortable. Hope things get better Monday after the wires and stuff come out so that you will have an easier time with water and taking in some nutrition. Sending positive vibes your way for some better days ahead.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Glad you are home, Michele. Nice to see you posting. Please keep us updated on what is going on with you. Hope you are pain-free, find some comfort and feel better 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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I'm hoping everything goes smooth for you now.
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: Feb 2011 Posts: 117 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2011 Posts: 117 | Michele: Here's hoping you feel MUCH better just to get the hardware removed and you get some relief from the pain and can get some good rest (other than just in a chair). that will help you feel better also.
DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | | Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2010 Posts: 71 | I got the hardware removed...but now find I can't chew. I am ok drinking Ensure, etc. but I had hoped to be able to eat mashed potatoes, yogurt, etc. If there is any kind of lump it won't go down. Yesterday the Ensure went down fine...today it goes down my chin and down the bottle instead of in my mouth.
Still waiting on what kind of chemo I will get having/getting. Supposed to start asap but they have to get together and discuss it I guess.
Michele in iL
Female - 53 no smoke/drink
tongue Biopsy 8/2010
Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear
Radiation started 11/2, ended 12/17
Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22.
passed away 1/12/12
| | | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | I am sending you prayers and healing thoughts and all the positive vibes I can muster. -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
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