Previous Thread
Next Thread
Print Thread
Joined: Aug 2018
Posts: 345
Likes: 8
ConnieT Offline OP
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Aug 2018
Posts: 345
Likes: 8
glad to see the crazy is gone from the board today. someone thought they were clever.

biopsy today ENT said it's probably 75% chance of cancer. the tumor board met and were quite concerned but he told me that it seemed more like necrosis from radiation and if i had him backed into a corner, that's what he felt he was seeing. He said it looked like cancer a few months ago but it wasn't so i'm holding my breath.

feeding tube was cleaned out and sutured. It had not healed and was spilling out food and even more painful. They put in staples that need to be removed. I said...gee, you had a c section but no baby! I've had 2 c sections so now he got to experience it. He said this is 3-5 times worse than the feeding tube while it was still in. And remember, he barely took pain meds during radiation. The feeding tube has been an issue since last August. No one in my area (2 counties have been called) carried Lortab (I believe) so he's taking the hydrocodone he never took during radiation and chemo. he had a full bottle.

So i will update on Monday. Long long day. 3 hours under to do both procedures and 8 hours at the hospital. I"m exhausted and he looks like he went through a war.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
Wow, that's a lot! I hope that feeding tube area finally heals up for him! And glad that he at least has some painkillers on hand to help him through it. No need to suffer when you don't have to; there's more than enough of that to go around.

((hugs))

Keep us posted on what they decide to do about the biopsied part ... I've been reading along and keeping y'all in my thoughts.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
I’m glad they have put stitches in to close the feeding tube site. I was told that stomach acid can flow out of the stoma and it can give the patient or caregivers bad burns. So, maybe your hubby isn’t exactly a wimp. Anyway, with stitches in he should now start to recover from that.


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: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Gloria is correct!!! The feeding tube site can become a big problem if its not healing. What comes out of the tube site causes painful burns on the patients sensitive abdominal skin. Its happened to me, boy does it hurt plus it seems to take forever to heal. When it happened to me it was 5 or 6 weeks for the burns to get better. Also all those abdominal muscles are used more than most of us realize which makes even the smallest movements very painful, even more so if there are burns around the tube site.

Best wishes on Monday. We're all hoping for good news.


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
Joined: Aug 2018
Posts: 345
Likes: 8
ConnieT Offline OP
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Aug 2018
Posts: 345
Likes: 8
no cancer. doc even said it today that it did not look like cancer even though he expected it to be cancerous. they were quick to call to tell him good news today!

he's moaning like crazy about that incision and i can't have a lot of sympathy. i had 2 c sections and babies to take care of and he will not take pain meds. he can moan all he wants but no sympathy here. I've been in extreme pain for 6 weeks with a pinched sciatic nerve so I'm hunched over and in screaming pain. So, if he wants to hurt, that's his choice! he won't take pain meds as they constipate him.

Last edited by ConnieT; 04-25-2019 06:26 PM.

Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Aug 2018
Posts: 345
Likes: 8
ConnieT Offline OP
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Aug 2018
Posts: 345
Likes: 8
i posted this yesterday figured it would get lost in the posts. i don't remember what the ENT called it but he was pretty sure it wasn't cancer once he saw the area he biopsied. So many ups and downs with this cancer stuff. Guess he gets to do it again in a few months. He went back to work today which surprised me.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Congrats!!! So happy to hear theres no cancer!!!


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
Joined: Nov 2022
Posts: 26
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Nov 2022
Posts: 26
Any updates?


Jdub

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5