| Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | I did look up the name of it but I'm not into impressing people with words! Anyway, husband had that done today, ate right afterward as they brought him some jello. ENT said he might have to have this done every 6-8 months for e-v-e-r. i stared at him. Is he kidding? Anyone else had this done?
Once again, every doctor saw how little he could open his mouth and evaluated how difficult this was going to be today. it went well, about a 10 min procedure though waiting for surgery and recovery total...about 4 hours. no joke. Doc was an hour late to this first appointment. Recovery was dreadfully long. I finally left for awhile as the building was freezing cold and i was getting in a bad mood about it. At least the cancer center and chemo had puzzles to build. This place had nothing to do and was freezing. Hours of sitting when I could have gone shopping but they said it would just be a few minutes repeatedly to me. Liars! Just tell me the truth!
I think he is going to do the PET scan in April now. He had said he wouldn't because the doctors just wanted more money (he despises the oncology doc for telling him to stop acting like a 2 yr old when he starved himself for 2 solid months).
Otherwise, his life is pretty much back to normal, working full time, eating anything and everything except spicy food. Difference between he and I....we go to Aldi and I get a basketfull of greens and healthy organic food. He gets boxed frozen meals and pies. I'm not perfect but it kind of shows the difference in how we treat our bodies. Today reminded me why I take care of my body...this hospital stuff is for the birds!
Last edited by ConnieT; 03-20-2019 05:41 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: 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 | John underwent esophageal dilatation five or six times over a six-month period so he could eat solid food. Each time it took a whole morning. Since the patient is heavily sedated, the recovery takes a rather long time. They also want to check for any bleeding post dilatation as that is a possibility. The whole time John needed dilatation, he had to keep his feeding tube in case the dilatation failed.
I’m surprised that your husband needs dilatation since from what you said, he was eating burgers and pies,etc. So, was he having swallowing problems previously but he didn’t tell you? Is he now working with a dietitian who makes suestions about what he can eat to boost his weight?
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) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | I know the throat stretching procedure has been discussed here many times so Im sure if you do a will get tons of posts to read thru. Just type a couple keywords into the search box thats up near the top right of any page. Im sure you will get tons of threads about this.
I do know quite a few people who have done the throat stretches. One of my close friends who lost her battle with OC after years of fighting and suffering. She actually had to have it done a second time soon after the first stretching procedures. The first time she didnt have much of a change but when she had it done the second time it definitely was helpful. She was also pretty sore for a couple days after doing the procedures.
Connie, I continue to be amazed at your husbands ability to bounce back so quickly! He is so VERY lucky!!! I wish he understood that his recoveries are much quicker and he seems to sail right thru every single thing thats put in front of him. Only about 5-10% of OC patients (those who went thru a similar treatment plan as your husband) are fortunate enough to avoid the horrendous side effects. Your husband isnt alone with how he buries his head in the sand, avoiding all OC info. Over the years we've had many spouses who joined OCF to help their patient go thru OC treatments and recovery. I dont know why but quite a few newly diagnosed patients do NOT want to know anything at all, they depend on their spouses for everything. 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 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | I think the ENT suggested the stretching so he could swallow better. He was eating normally but I guess they thought they could make it better.
Christine, I wish he recognized how fortunate he is rather than belly aching about how no one supported him through this journey. Not sure what else I could have done for him. I remind him often how lucky he is.
he told oldest son that he's not going to do tobacco anymore as he can't because it would burn. thank goodness he recognizes that....he doesn't seem too worried about getting cancer again.
No dietician involved anymore as he is back to regular food. He just sees the ENT people to work on therapy for his lipodema? and mouth movement. He could barely open his mouth before this and now it's a real big deal for the surgeons to get in to do biopsies, scopes, etc.
I will search for some older posts about the stretching. It's something I had heard of but knew nothing about it. He seemed to bounce back completely from the surgery immediately afterward.
Last edited by ConnieT; 03-21-2019 08:17 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: 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 | The mouth opening can be stretched using a Therabite. At one point there was a lot of discussion on the forum about it. However, from what I have read, it’s efficacy is limited. Apparently some people use a stack of tongue depressors, which is, of course, way cheaper. The problem with a very limited mouth opening is that if he ever needs to be intubated for any procedure, the doctors may have difficulty doing it. When John was in hospital and needed a nasal tube for feeding, the nurses couldn’t do it and he had to be booked into Interventional Radiology to be put under. It also means he cannot have some dental work done as the dentist won’t be able to get into his mouth. If at all possible, I would suggest you take this up with the doctor on the next recall.
Connie, I’m sure you don’t need any more aggravation. I would just like to mention this so that if problems do arise in the future, you know where they have come from.
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 | the last time they intubated him, he ended up with a fat lip. he does not want that to happen again. I don't really know the reason for it happening.
Every time the docs look at him, they remark how little he can open his mouth but that's been going on for years according to him. I never noticed it being different and wonder what would have caused it a long time ago. Radiation certainly isn't going to help it get better.
Good to know about the tongue depressors. I doubt he would be willing to do them but he will if the right people tell him to!
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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