| | Joined: Feb 2013 Posts: 1 Member | OP  Member
Joined: Feb 2013 Posts: 1 | Hi everyone. My husband was diagnosed with stage 4(a) oral cancer in December 2012. It was caught early but because it had spread to a lymphnode on the right side of his neck (by the cancer on the base of his tongue) they said they would stage it at 3 or more closer to 4(a). His cancer is thought to have been caused by HPV because none of the other factors played a role - he has never smoked, used smokeless tobacco, or drank more than maybe a glass or 2 of wine at Christmas. He had surgey to remove his lymphnode on December 3rd. December 5th we were given the news about the cancer. He began radiation 5 days a week and chemo 1 day a week around December 11. This is his final week of treatments. I wish I had found this site earlier in his treatment. I have to admit that I didn't look into the type of cancer he had because I was in denial and felt I could deal with things better if I was ignorant(for awhile at least) but eventually I have to know what is going on. I have read a lot of posts on this site and can relate with many things the caregivers talk about. I really wish it had been me diagnosed with the cancer. I have lupus and fibromyalgia and am use to being in pain and probably could have taken it better. My husband has always been healthy and well. He was going to give up the radiation & chemo about midway through treatment because he couldn't take it anymore. That was the worst week of my life. I was so angry at him for just giving up like that. I finally got through to him by asking if the situation was reversed would he want me to give up radiation and chemo. He admited that he would not want that and began treatments up again that very day. I know this isn't over because I understand that his mouth will just get worst after his treatments are over for awhile. This has been our journey so far. I am so glad this site exists!
Phoenix0728
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Hi Phoenix, as a fellow caregiver, I completely understand. Sounds like you are doing a great job of helping him through. For what it's worth, I want to give you a heads up, the first couple of weeks after treatment are still going to be very tough as your husband's body will still be suffering the affects. For my husband, it was a tough as being in treatment. The one benefit was that he knew he didn't have to go back and get hit by treatment again. That said, the worst is almost behind you. Glad you found this site, it's a great place for information and support.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Oh Phoenix - How I can relate to your experiences! Midway through his Tx my son wanted to give up but I was able (with OCF's help) to convince him to keep going. Towards the end of Tx it got really bad for him but he was in survival mode by then and literally (with my help) he dragged himself to the last two treatments. After the last Tx, getting him back home, I thought we would both crumble on the driveway to the house as he leaned his weight on me for support! Just being DONE with the Rad gave us both the courage to get over the next difficult two weeks and know that there was a light at the end of this long dark tunnel! Being a caregiver is a "learn-on-the-job" effort and you have done an amazing job in responding to your husband's needs and knowing exactly what works to get him going! Stay with us and let us know how you both are doing. Remember to take breaks and do something nice for yourself, too!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome, and glad treatments will be over soon for both of you, and then it's recovery phase, which can be difficult the first two or three weeks, but gets better, slowly. I had no caregiver, support, and wished I had. Studies shows a better prognosis with those with caregivers, and support, especially over single men.
Last edited by PaulB; 02-26-2013 08:43 AM. Reason: spell
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Phoenix,
My husband finished his TX on January 8. The first few weeks post treatment were difficult but now I see improvement in him everyday. Hang in there, you have a circle of friends here who understand.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | 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 | Phoenix, welcome to OCF! Glad you have found the site now. Im sure it will help you both get thru the hardest days. It takes a very special person to be a caregiver! Dont forget to take a couple minutes once in a while just for you to clear your head.
Feel free to ask questions, we will help you.
Best wishes!!!
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there... So glad you are almost through the journey. It's scary as heck and I was glad that I was the one with it as I knew I could likely deal with the fall out. No one wants to watch another suffer either.
tell him a month or two down the road he will begin to climb out of his proverbial hole. hugs and best wishes.
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
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