| | Joined: Oct 2014 Posts: 23 Member | OP  Member
Joined: Oct 2014 Posts: 23 | Hello there- I just found this forum and have been engrossed in all the information available from everyone's experiences. We are relatively new to this journey. My husband was DX with HPV squamous cell carcinoma on the base of his tongue that metasitized to a lymph node. Surgery went well (except for the part when he started bleeding and had to have a second emergency surgery😁😁), he has healed well and has now started radiation. 3 down, 27 to go. So far so go. They are using tomoradiation and he is taking Gabapentin, which we have been told helps with the pain without the wooziness usually associated with pain meds. That's all I have for now. I look forward to using this resource as we continue this "adventure"!
Maura
Working caregiver of husband Don ,56yrs, non smoker, casual drinker
6/14 DX squamous cell carcinoma on base of tongue, HPV positive
8/28 Radical neck dissection w/ removal of 31 lymph nodes and partial pharyngectomy T2 w/ MET to lymph node
8/30 emergency surgery to cauterize bleeders in throat
10/1 Began 1st of 30 tomotherapy
11/14 end of radiation
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Welcome Maura - Sorry you have to be here, but so glad you found this forum, it is most definitely life giving. Everyone will be here walking beside you and Don thoughout your journey, adventure as you call it.
Wishing you both the best it could be under the circumstances, during this time.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome to OCF. You will find a lot of support and practical tips as you progress through treatment and recovery. This is one of the very few places on the Internet where you can actually rely on what you read as all content is carefully monitored; the parts of the site posted by OCF that is.
Good luck
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: May 2013 Posts: 187 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 187 Likes: 3 | Maura sorry you are here but you are where you need to be. Question the group and educate on recovery etc. We have all been through similar journeys.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | 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 | Maura welcome to OCF! Glad you have found our group to help both of you get thru the upcoming weeks of treatments. Stick with us and we will help guide you thru. Dont forget being a caregiver is a tough job, make time for you to thru all this.
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Maura - welcome to the family. You still have a ways to go with treatment and the symptoms MAY get worse throughout, but many of us have gone before you and come out the other end of the tunnel just fine, so you and husband will likely also.
Ask what you need, one thing we have in abundance here is answers. Realize none of us are doctors, all we can do is relay how it was for us. It may or may not be the same for you.
If possible get your husband involved with the forum. If he reads this stuff himself it will make him think of questions he wants answers too.
take care,
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
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