| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL that is OC not PC for sure. Sorry about that.
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: Nov 2009 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2009 Posts: 76 | no problem. thanks guys to both of you for your advice.
im guessing he wouldnt be getting seed inplants in his tongue because his issues are in his cheek/jaw not the tongue...
i'm going to advise them to be on the alert for ringing in the ears
*KATIE*
future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | | Joined: Nov 2009 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2009 Posts: 76 | hey everyone,
just thought i would send an update. i realize i now likely fall into the "in treatment" forum but it seems to make more sense to just continue the convo with those of you who have already responded to me along the way from when i first started posting in november.
future FIL is doing well. he is tired a lot, but i think its good for him to sleep. trach and peg are still in, he is in his third week of radiation and chemo. hes been getting chemo 1x per week and rad the other 5 days. i visited last weekend and he was in good spirits, just tired a lot. sometimes he falls asleep while you are talking to him. is this normal??? i know this is very tolling on the body so i would rather him sleep and recover. due to the surgery he has no movement on the one side of his face. it is very swollen, but has decreased significantly since the surgery. ive been told it wont go down any more until facial reconstruction.
our wedding is planned for september, i am hoping everything is going to go OK.
after the rad/chemo rounds end, how long does the team of dr's wait to do a PET scan?
*KATIE*
future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Some get the scan a few months out. My team is waiting for 5 months. They say they get too many false positives with early scans. My tumor area is visable with the naked eye (soft palet) so most of the early follow ups have been simple visual exams.
Kelly
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | andy is on IMRT 26 and he falls asleep while im talking to him...so i hope it is normal...maybe im just boring him lol.
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | 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 | This Tx is very taxing on our body, both physically and mentally and each of us can handle it differently so whatever is normal for him right now is just that. I know that starting about my 4th week things really went south and I spent most of my days laying in my bed watching TV and drifting off to sleep whenever I needed to. I don't ever remember falling asleep when someone was talking to me but whatever works. I will say it will probably continue to be more taxing on him especially the few weeks POST Tx so be prepared.
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: Nov 2009 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2009 Posts: 76 | thanks guys. its hard because i am in NJ and they are in upstate NY so im not there but i know theres much to prepare myself for.
*KATIE*
future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | | 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 | As far as the swelling is concerned, my docs told me after 6 months its pretty much what its going to look like. However it may go down a tiny bit more. It takes a year to heal from this type of operation. After the 1 year mark then the docs know what they will be working with and can do reconstruction surgery.
I cant wait for mine. Im tired of people staring at me. I stare every single one of them down too. If they want to speak to me, I would gladly tell them why Im so funny looking. I was told it may take liposuction to make my face more symetrical.
Best of luck to your father in law.
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: Nov 2009 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2009 Posts: 76 | im sorry for the cruel staring, christine. they just dont know how inspirational you are!
i know my future FIL is very self conscious about his appearance currently and does not want visitors, i am sure he feels the same way you do and have for a while.
i did not realize it takes a whole year until reconstruction- is that typical? looking at the timeline in my signature, is that what you would predict as well?
*KATIE*
future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | sorry ur FIL has to go thru this...and ur family as well.
people can be so cruel. mostly ignorant...
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | |
| Forums23 Topics18,249 Posts197,141 Members13,325 | | Most Online1,788
Jan 23rd, 2025 | | |
|
