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Hang in there Jeanna. Their objective was to "cure him" so fingers crossed that's what they are still planning. Steve's doctor's never said that to us. They said chance of "cure" is minimal and they hope with treatment to prolong his life. This was 2 different doctor's in different states as well. But hang in there because these are statistics. One doctor said to us he's seen many people do the complete opposite of what they expect. Stay postive girl, you and Rod will get through this.


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.
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Posts: 8,311
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Jeanna,

It's not totally unusual for nodes to still be swollen but IMO they need to be checked out BEFORE the increase in size. Still unsure what they are saying about the primary tumor but your last post isn't as alarming as your others but I would still press your head cancer person for some clear answers and I wouldn't wait for their schedule.


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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Jeanna,

When my daughter was diagnosed with her second occurance and all the reading I did the first words I asked the RO was are the plans to work for a "cure" and their answer was yes. So that is encouraging and you should hold onto that. I am praying for you and Rod you will get through this.

God bless,
Bonnie


CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years

2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
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Thanks guys, appreciate your hope & support...will keep you informed, but hopefully not too much complaining for a litle while!

Hey Wenz...Tiges are on...GO TIGES...lol!!

David, do you have 'Buckleys and none' chances in the States? Well, Rod's footy team tonight is playing, and their changes of winning are 'Buckleys and none'...lol!!


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
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OK what is "Buckleys and none" and I assume a "footy" team is your football which is either our soccer or rugby? And Tiges are a name for what team? I'm confused.


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: Jul 2009
Posts: 453
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She's confused you with Aussie slang. Buckleys and none means no chance. Footy is definetly football but she's talking rugby league. Tiges is for Tigers which is one of the many footy teams. Hope this helps.


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: Aug 2009
Posts: 207
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Wendy...I am apalled....Tigers - Richmond - alike to Sydney Swans...I'm a Mexican...Aussie Rules girlfriend!! [actually I came here from New Zealand in 1986 - rugby union - hate rugby league, am now an Aussie, hate winter sport full stop but don't tell anyone]....oops...David, yes, sorry, 'buckleys or none' is no chance of winning Tiges is AUSSIE RULES football - Wendy!! They will be in the top eight next year for sure....all losing teams do something better the next year don't they??? US football is gridiron - no? yes? Should be on cable tv.....


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
Joined: Aug 2009
Posts: 207
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LOL!!!!!


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
Joined: Aug 2008
Posts: 100
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Hi Jeanna, it has been awhile since you posted so you may have already got a second opinion. One suggestion I had was to see if you could talk to your husbands Dr without your husband around. In my situation I have always been too afraid to come out and be blunt with my questions when my wife is around. After her main operation and neck dissection, we had to go to a training on taking care of her trache. Dummy me, kept asking questions about the care of it until my wife finally broke down crying. Since then I have always tried to tread lightly but from reading your posts, it sounds like you have the same questions everyone has in that position. Hope you have been able to get answers to your questions and your husband is doing well.


Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
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