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#91956 03-17-2009 07:00 AM
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Hi. John's treatments are going o.k. Things are starting to get rough with the "normal" side effects. John sees the Radiation Oncologist every Thursday and this Thursday he said he will be scoping him to see how everything is going. Is it to soon to see if the tumor is responding to the treatments? John is feeling pretty bad and I'm just afraid he will get discouraged if he doesn't hear positive news. Wanda

P.S. He has had 3 chemo (Cisplatin) treatments so far and today will be radiation treatment #14.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
slim #91959 03-17-2009 07:10 AM
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This is normal and it's as much about seeing what radiation damage may be occurring in his mouth as it is to see if there are visible changes to his tumor. He'll probably say something like " everything looks like I would expect them to look like at this stage" or something as non committal. You might want to clue the nurse in to tell the doc not to sound discouraging in front of John just in case.


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.
davidcpa #92019 03-17-2009 06:37 PM
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Your husband is almost 1/2 way finished with treatments. When I went thru it, my doc checked me weekly. I usually saw him a few more times per week in passing where he just kinda kept an eye on me. Treatments are difficult. Only time I was scoped was by my ENT and that has been more times than I care to remember.

If you think your husband is easily discouraged, maybe you can suggest anti-depressants. Many OC patients need them temporarily during treatment.


Christine
SCC 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 smile
ChristineB #92058 03-18-2009 07:20 AM
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They love to use those things. If they could I think they would carry them in their pockets and whip it out on the go. My record was 4 scopes in one day by 3 different docs at Moffitt. Fortunately all said about the same thing...."looks just about like I would expect it to."


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.
davidcpa #92072 03-18-2009 10:50 AM
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Scopes aren't bad at all and it gives them a lot of information they need. I have been getting them since the end of 1995 and Only 1 time had a reaction to the anesthetic. I have been sore in my esophagus from the biopsies they always take. Other than that, smooth sailing.


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
EzJim #92082 03-18-2009 02:37 PM
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Anesthetic for the scope?


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.
davidcpa #92096 03-18-2009 06:55 PM
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Yes david the out you in la la land. It is very uncomfortable. The 1st one I had was when I was wide awke, he couldn't stop me and the gag reflex. and when they take biopsies, thy take them all the way down from different locations,.. I don't thin you would want to handle it nor would I


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
davidcpa #92097 03-18-2009 06:58 PM
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My ENT usually gives me a blast with a nasal spray that is a local anesthetic and opens up the path. I've had it done with and with out the spray, can honestly say I prefer the blast of spray. It could all be in my head though...

I had 4 in one day too, by 4 diff Drs. Seemed like every Dr had an intern that needed the training that day.


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
Stoj #92109 03-18-2009 09:01 PM
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I get a blast of decongestant first and lidocane spray second. It does taste like Hell when it drips down into the back of your throat. My follow up doc, Bill Armstrong at UCI, uses about two miles of scope (it feels like) and looks even past my larynx, and that can be a chair arm grabber.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #92118 03-19-2009 06:12 AM
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I was never offered anything like that but my scopes were shallow compared to what you are describing as they "stopped" when they got to my BOT and tonsil area (I guess) and they never lasted more than 20, 30 seconds. I also didn't have any surgery and no swallowing problems which I assume all can make a big difference.


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.
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