| | Joined: Jun 2009 Posts: 64 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 64 | I had this idea that once we made it through treatment everything was going to be fine and we would go on with life like nothing had ever happened. Well that is not true. You live this everyday of your life. For some reason I feel that I am having more problems now then while going through treatment. I think the false expectations have set me up. I understand today that this will be with us for the rest of our life. I guess it's a big adjustment and I have to accept it for what it is. It is not the easiest thing to do
Thanks
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
| | | | | 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 | Was he ever tested for HPV?
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: Jun 2009 Posts: 64 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 64 | No they have not requested HPV test. Not sure why but it's never been an option for us. Is that something that insurance would cover? Do we need to push? ThankPat
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
| | | | | 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 | David, what relationship does after effects have with HPV?
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: Jun 2010 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2010 Posts: 58 | We are too, thinking this world of after treatment effects will never end. The docs said 6 wks after Tx should show improvements & feeling better. He is now at 5 wks and showing worse signs than ever: sleeping almost all day, sore sore sore throat, mucus aggravated coughing attacks. When does it end???
Bonnie
CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.
Lost the battle, but walking in Glory 9/7/11.
| | | | | Joined: May 2009 Posts: 14 Member | | Member
Joined: May 2009 Posts: 14 | It does get better, but everyone's recovery is different. Does he have a fever? You just want to make sure that he doesn't have thrush or get dehydrated... and make sure that the meds are controlling his symptoms-- hang in there!! Sleep is good..he's healing...
Spouse
Husband age 55
SCC BOT and 3 nodes HPV 16+ Diagnosed 2/13/09 Stage 4 T2N3M0
Neck Dissection 2/13/09, 6 chemo cysplatin/taxol, 35 rad TX completed 5/8/09, PEG removed 6/26/09, PET Scan 8/3, 2/3 Clear!
| | | | | Joined: Jun 2010 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2010 Posts: 58 | no fever. He's pretty good with pain control, usually between a 2-3 level. Just tiring for us both. He's such an active guy normally, and it's difficult enduring all this. Congrats to you and your husb on his all clear! We are hoping too for that result in Aug. at the 3 mo. checkup.
Bonnie
CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.
Lost the battle, but walking in Glory 9/7/11.
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Al of us have a new "NORMAL" after treatment and it is different for each of us, we just adapt and overcome to do the best we can!!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | hang in there. it WILL get better. i agree with Bob...yall will have a NEW "normal".
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
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