| | Joined: Apr 2014 Posts: 11 Member | OP  Member
Joined: Apr 2014 Posts: 11 | Hey guys,
Never posted here although I've used this site for information since dec/12, I felt it was time to make an account and post. Here goes.
Caregiver to Chris
Diagnosed with aggressive, poorly diff, SCC of the tonsil, stage IV T3N2bM0 HPV16/14+, former smoker, lifelong welder, age 47.
First symptoms 10/11
diagnoses of tonsil cancer 5/12
treatment discussed and scheduled 6/12
PEG placement, and 4 teeth removed 7/12
Rad 35x, 3x cisplatin started 8/12
finished treatment 10/12
PEG removal/PET showed no sign of cancer but extensive lung scarring from years of welding 11/12
follow-up PET scan showed node in left lung (sugar uptake of 5) 2/13
failed mode removal, told to follow-up with more scans 4/13
follow-up PET scan shows node in the left lung growing now has a sugar uptake of 28 6/13
left lobectomy, margins clean, no follow-up treatment 7/13 (Biopsy showed SCC unrelated to tonsil cancer)
followup CT scan clear 10/13
scare tissue causing excruciating nerve pain 11/13
Diagnosed with Osteoradionecrosis 12/13
CT scan clear Jan/14
His problem list would scare most people I'm sure, did not list it all. He got his treatment and gets his continuing care in Columbus OH.
I would just like to say thank you to some of the others members who share there experiences, they have helped us greatly when we were completely lost in the journey with Cancer and it's treatment.
~Trinity
Last edited by Trinity; 04-22-2014 05:07 PM.
CG to Chris
DX stage IV tonsil SCC HPV18/16+ T3N2bM0 5/12
PEG and 4 teeth out 7/12
RAD 35x, 3x cisplatin 8/12
treatment finish 10/12
PET clean and PEG removal 11/12
PET lung node 3/13
failed node removal 4/13
PET lung node 6/13
Lobectomy DX SCC lung new primary Stage I 7/13
CT clear 10/13
DX ORN 12/13
CT clear 1/14
Current list;
Dry mouth, dysphagia, nerve pain, ORN, spinal stenosis, dental caries, reflux, aspiration.
| | | | | 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 | Welcome to OCF, Trinity! Im glad to have another caregiver of a survivor aboard. Looks like your husband has been thru quite alot. Like many survivors here, the after effects they experience seem to be never ending. Congrats on the clear PET!!!
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Welcome to OCF!
Thanks for the sig details. Very yet disconcerting about the battles he's fought. Congrats that he is clear now. You know to post here anytime with any questions. There are quite a few having dealt with tough long term side effects as well as recurrence. Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Trinity - glad to hear we have two more cancer warriors out there. Yes, you qualify as a warrior too. In a lot of ways, I'm sure your battle has been as difficult as his.
Welcome to the family.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | 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 | Good timeline and let's hope you have no more entries!
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: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | So glad you are here... You have a great amount of info you could share to help others. So glad your hubby is doing well. I know he has a lot of issues but well is a relative term, right? Anyway welcome. and HUGS!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Apr 2014 Posts: 11 Member | | OP Member
Joined: Apr 2014 Posts: 11 | Thank You guys and gals for the warm welcome. I look forward to sharing experiences and trying to help others. I also look forward to being able to speak to others who have been in similar situations to get advice.
It has been a long road for my husband, through his treatment and recovery, most of which we were in the dark on the after effects of treatment. "Set backs" have just become a part of life we accept and deal with as they come, sad but we almost expect them now.
CG to Chris
DX stage IV tonsil SCC HPV18/16+ T3N2bM0 5/12
PEG and 4 teeth out 7/12
RAD 35x, 3x cisplatin 8/12
treatment finish 10/12
PET clean and PEG removal 11/12
PET lung node 3/13
failed node removal 4/13
PET lung node 6/13
Lobectomy DX SCC lung new primary Stage I 7/13
CT clear 10/13
DX ORN 12/13
CT clear 1/14
Current list;
Dry mouth, dysphagia, nerve pain, ORN, spinal stenosis, dental caries, reflux, aspiration.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Trinity,
I am impressed with your husbands will to survive, thats a pretty remarkable list of challenges, for him and you. I am glad that you are here to share with us.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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