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WendyG Offline OP
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He will be having chemo every 2 weeks from what we have been told and that each time he will stay overnight. He has 3 courses of chemo during his treatment. I feel sorry for the nurses having him overnight because he's not a sit down and be quiet kind of guy. He had never been in a hospital himself until his biopsy. Pretty good to reach 43 without any ops. He will be the patient from hell when he is forced to stay overnight, I'm sure.


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.
WendyG #98903 07-06-2009 08:54 PM
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Hi Friends. It's been a long time since I've posted. Just thought that I would let you all know that we've called in Hospice as things here have gotten worse. Jim can no longer stand or walk. Each day he is getting weaker. I've been by his side for a year and a half, hoping that treatment would work. But, it did not. All those treatments were in vain. I am so very very sad and tears cover my face all day and night. Looking at him suffer is more than I can handle. Where did my strong energetic husband go ? Where is he ?


Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
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WendyG Offline OP
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Oh Claudia, I feel so sad for you and Jim. I have no words that would even begin to make any difference to you. Just know that you and Jim are in my thoughts and prayers x


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.
WendyG #98931 07-07-2009 06:17 AM
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Claudia,

So so sorry.


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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Wendy,

I had 3 rounds of Cisplatin (I don't remember you saying what he will get but Cisplatin is pretty standard) and watch out for what they call "ringing in the ears" or if I were you tell him that if he notices ANYTHING funny in his ears tell his chemo doc straight away!! I ended up with permanent high frequency hearing loss because perhaps I didn't recognize this "ringing in the ears" soon enough.

My first chemo was pretty much a non event. Second round caused a lot of nausea but it was also after 15 rads so who knows. The third round was horrible re the nausea but I had also had all my rads so who knows again?


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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Claudia, I am so sorry to hear of Jims struggles. I will keep both of you in my prayers. Please remember we are here for you.


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
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Claudia I am so sorry to hear Jim has not responded to treatment and is now palliative. I do hope hospice is able to provide comfort and support for you both in this very difficult final stage of your lives together. May you find strength and courage to face each day. Know we are all here for you.


Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
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Hey clauadia

(((((HUUUUUUG))))))


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.
Cookey #98997 07-08-2009 03:48 AM
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WendyG Offline OP
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Thanks for the warning David. I'm not sure what he's having for chemo yet. They haven't told us but we will find out this time next week. Even though Steve doesn't get on this site he does listen to everything I tell him I've learnt from you guys. So I've passed on your warning about the ringing ears. Is hair loss associated with Cisplatin? The reason I ask this is that Steve has alot of hair and I think we should cut it really short before we start chemo but he doesn't want to. He's never really cared about his appearance (hence the long hair) but I'm really worried the actual event of losing his hair may upset him when/if the time comes. I've read some chemo's don't result in hair loss but wouldn't have a clue which ones. Also, what should we do about beards and radiation? The doctor said the hair will go but should he shave before having radiation. I was thinking maybe a couple of days before. He currently has a full beard.


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.
WendyG #99003 07-08-2009 06:24 AM
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No hair loss from Cisplatin but the rad will "blow" the hair off the back of his neck where the rad will exit. The rad will also most likely cause his whiskers to fall out like little grains of black sand. The hair on the back of his neck will slowly grow back and some of the whiskers may return. I lost all my whiskers and the hair on the back of my neck. Back of neck returned after almost 2 years; whiskers above my chin line came back but the ones below never did so I don't have to shave there except for the occasional rogue whisker or 2. Remember we all can turn out differently and always keep that in mind. Whatever happens to him will most likely be NORMAL for him.


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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