| | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP  "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Great news today. Steve and I made it through today ok. Surgery took longer than expected and of course I was a mess, thinking the worse. But as I was going outside for fresh air I saw him being wheeled across the hospital. He clapped his hands to get my attention and then gave me the finger (nice to know he loves me). Gave me great faith that he was ok though and gave me and my lovely sister a great laugh, which was much needed. He was only half an hour out of surgery and completely alert. They didn't take all teeth, left the front top and bottom. He's got some oxycodone which is actually working wonderfully and for the first time in a long time I saw a pain free, relaxed expression on his face tonight. So far so good, it was a tough day but we made it. So we are finally over the preparation part and are on the countdown to beginning radiation and chemo.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | OP "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Yes Christine, I'd love some recipe ideas please. I've never been much for cooking so find it hard to come up with ideas for him. Need all of the help I can get.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | Joined: Jun 2009 Posts: 24 Member | | Member
Joined: Jun 2009 Posts: 24 | Hi, Wendy
Such great news that Steve came through the surgery and gave you the finger! I LOVE it! What a good sign. That really cracked me up. I like the guy already! Sounds to me that the two of you, like Diane and I, are blessed to have each other. Having a sense of humor in the face of all this will make things easier. We'll all get through this together!
Dana, Male, Age 52, DX 11/08
SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | That's great news and I love his spirit and he was saying how much he loves you BTW.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Gotta luv his spirit and yours. You two will do great. We all empathize with your comment about "how the hell did we get here". Many times I have felt like someone smacked me upside the head and I woke up to this and wonder....WHAT HAPPENED?? You will in time find your new normal.
Keep us posted.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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 | Wendy, glad to hear all went well. Its great to see a sense of humor still there are going thru the operation.
I will send you some food ideas by PM. There is already a list under food/menu ideas for soft foods. Its a completely differnt world when trying to eat without teeth, so that will be a different list.
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Thats brilliant news wendy.sounds like a man after my husbands heart lol.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | That is awesome Wendy!!! So glad to hear you even got some laughs in today. That is wonderful
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: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | OP "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Made me laugh and really lifted my spirits. It was his way of saying I love you because he was out of it slightly but still managed to find me in a crowd. Gotta love him and yes, have to find as much humour from this as we can. Hey I have a question. We've been told what to expect from radiation but not what to expect from chemo. Chemo starts next wednesday and he will be in overnight. Does anyone have any advise on this? All we know is we have to go there and they will do a blood test, then do his chemo. We don't even know what kind he is having although I will be asking on the day and writting it down. I'm really worried about it as I don't know what to expect at all.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | 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 | This is something that is important. Certain chemos can have permanent hearing loss side effects. Cisplatin is the one which causes hearing problems and is the most commonly used chemo for OC. I had it but did not have any hearing problems. Alot of patients, myself included got hearing tests before starting chemo. It can also cause kidney problems so make sure he drinks alot of water.
Chemo can cause him to feel pretty bad several days after it was given. Its very important to take the anti-nasuea meds even if he isnt ill. Once the nasuea sets in its too late to take something that he wont be able to keep down.
Is the chemo once every 3 weeks or is it weekly or daily?
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 | | |
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