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Joined: Jan 2009
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Hi Wendy. My husband is 12 weeks out of treatments today. He had 35 IMRT treatments and 7 weeks (1 x a week) of Cisplatin. He had a thick head of grey hair and a beard before treatments started. The Cisplatin caused permanent hearing loss in both ears. The hearing loss did not show up until after he was done treatments. He didn't loose all his hair but it really thinned out a lot, very noticeable. He lost all his facial hair from the radiation but it is slowly.....growing back. The hair on the back of his neck just started growing back last week - baby fuzz. Best wishes to you and your husband. Wanda


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 #99146 07-09-2009 10:39 PM
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Posts: 155
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Wendy just droppin in to say I am so glad you are here. There is no better place to be. Please share whatever you feel you need to share not only the technical stuff but the O my why do I feel this way? stuff too!! It has gotten me through some tough caregiver hurdles and kept me sane!
haha on the giving you the finger...Bob had surgery last Thursday and a very caring friend asked " what were the last words you said before he went in" Well they were "bite me" he was busting on me about the surgical waiting room at the hospital becasue he had to wait there for me (minor outpatient thing) so he was teasing and I said Bite Me the orderly was taken aback but it made him laugh as he was wheeled away.
We also had some very baaad dark humor jokes that got us through his cancer treatment five years ago ..when repeated my friends exclaimed O thats awful but it was our thing and any humor is better than no humor !! Please remember you have lots of friends here that understand.


Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
deni #99181 07-10-2009 06:06 AM
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Posts: 8,311
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My wife can be pretty cruel at times. When we were waiting at Moffitt to see the Oral Surgeon (the first appt I had with Moffitt) we were given a pager and told we could wait out in the main lobby entrance of Moffitt. We knew the doctors name and it sounded like he was East Indian so every East Indian doctor that walked through the main lobby she would jab me and say "I wonder if that's him?". Well one really overweight such doctor walked by and of course she jabbed me but she added "I can just see it now, he's standing over you in the operating room with a knife in his hand and suddenly he has a heart attack and slumps over and stabs you in the neck!". He disappeared and a minute later our pager goes off and now I'm sitting in the exam room and guess who walks in and guess who jabbed me 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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David....that is a hilarious story


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: Jun 2009
Posts: 64
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Wendy,
Good luck with your appt. tomorrow. I didn't think that I could do this caregiver role either. I am not going to say that it's not easy but it is doable. Things fall into place when they need too and you just keep perging forward.
Pat


Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
Pat_451 #99630 07-17-2009 12:08 AM
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Posts: 1,940
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Keeep your chin up wendy.

good luck
liz


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 #99677 07-17-2009 05:48 PM
Joined: Jul 2009
Posts: 453
WendyG Offline OP
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Thanks everyone. Your support and advise makes this so much easier. Just wondering if anyone has any advise on how to get a man to take serious possible side effects. We have cream for his skin, mouth washes to help with any sores etc but do you think I can get him to use them regularly. I know he feels like crap but if he doesn't use this stuff he's going to feel a whole lot crappier. Any idea's on how to convince him to be vigilant with this stuff before he learns the hard way. Is it a man thing, not wanting to care for yourself. How do you get someone to step up and care about their own health. I know he's doing treatment which I am so grateful for but I'm really concerned about more pain from side effects, just wish I could get it across to Steve how important all of this stuff is.


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 #99684 07-17-2009 06:47 PM
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I had the same problems with Rex he would not use any of the tools that they gave him. It wasn't until he hit his bottom that he started to use the rinses etc. He wouldn'teven use the pain pill.s He is starting to use this stuff now, I think he knows that it helps me feel better.
I didn't ask for this job, but it has been given to me. I can only do what I can that's what Ihad to come to realize i can't force anyone to do anything. I had to put it in God's hands
Pat


Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
Pat_451 #99690 07-17-2009 06:59 PM
Joined: Jul 2009
Posts: 453
WendyG Offline OP
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Thanks Pat, your advise is very helpful. I think Steve will have to hit rock bottom before he realises as well. But he's a big boy and as much as I want to, I can't force him to do things. Nice to know others out there had the same issues as well.


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 #99695 07-17-2009 08:07 PM
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Posts: 10,507
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Wendy, some members here have printed out pages from OCF and given them to their patient to read. For the most stubborn patients, the caregivers have 'accidently' left printed pages lying in places that they would be read by the patient. That has helped several on here to get the important points across.


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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