| | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Aug 2018 Posts: 345 Likes: 8 | Husband is at Mayo today and in the morning, he will have a CT guided biopsy to the area that has not been reachable.
They were very positive and have seen this tumor situation on the carotid artery often. The doc said she has only lost 1 patient with this scenario and feel there is a 80-90% success rate possible.
She is awaiting to see how much radiation he was given the first time to determine course of action. The bottom line is, this area probably never received radiation the first time.
So here we are....sitting and waiting for a few days until they figure out a game plan.
He will be doing immunotherapy most likely as well. That can be done an hour from here and the radiation would be either 5 days or 6 weeks 4 hours north of us at Mayo.
Most positive thing I've heard in the past couple of weeks....been really dreary in my household lately.
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 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Aug 2018 Posts: 345 Likes: 8 | still waiting to hear a treatment plan.
but grrrrr...he's having a friend over and i said i hope you are not drinking. of course he is. he already has cancer so what does it matter?
I might as well stick around here as I feel this is going to be the rest of his life...back and forth.
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: 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 | Almost all OC patients who went thru rads have encountered major issues making eating and drinking very difficult. Between the painful mouth sores, swallowing challenges, and the very long road of recovery its surprising your husband is able to tolerate drinking alcohol. Most OC patients are unable to tolerate the intense burning sensation they get form even a tiny sip of alcohol. Unfortunately, OC patients who are habitual drinkers somehow overcome the hurdles and find a way to continue drinking regardless of the pain or consequences. Its only a matter of time before their actions eventually catch up to them. Im so sorry to read your husbands has continued his stubbornness and also still ignores his doctors advice to avoid drinking.
Being a caregiver is not an easy job, especially when caring for someone who has their own ideas about following their doctors orders. Wishing you all the very best with everything you have going on. Hang in there !!!
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: Aug 2019 Posts: 57 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2019 Posts: 57 | Yikes. I had a taste of red wine the other day and it tasted like I was drinking gasoline. I love(d) red wine before all of this. I think my body was telling me something.
Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
| | | | | 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 | After his radiation treatment, John found all kinds of red wine tasted metallic. It seems to happen to a lot of patients.
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: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Aug 2018 Posts: 345 Likes: 8 | his only issue is that sweets don't taste sweet. otherwise, food is pretty much the same as he remembered it and remember he didn't take any pain meds through treatment. Hard to believe, I know but he was so afraid of constipation, he refused to take pain meds.
It's just hard to have empathy for someone who has to pave his own way all the time.
thanks for all the words. i do appreciate them
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
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