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Just got barium swallow results this morning. Husband is pretty much aspirating everything. So no more food or even water...they are putting him on an NG tube until he is strong enough for a Peg tube.

I guess a part of me is glad we didn't know all these issues were in our future. We were just happy that the treatment was a success as far as wiping out the cancer.

Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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Anita,

This is difficult to read....Yes, we are warned about treatment side effects, but when they surface, it is difficult to accept. So much energy is spent on getting through treatment and killing the cancer, then facing these serious side effects feels like post traumatic stress.

I see that your husband underwent recent prostatectomy. Coincidently, that was the case with my husband, one year prior to oral Ca diagnosis. He now faces HBOT (hyperbaric oxygen therapy) due to dental complications.

As you say, we are grateful for the good years. Aside from eating/swallowing is your husband stable?

Lottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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Sorry sorry sorry.

Did he have any swallowing problems before this or did this come all of a sudden?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Anita and Lottie,

It is difficult I know but please understand a couple of things. Without treatment death is imminent. With treatment these after effects are still only a possibility and many don't suffer from them.

Lottie, your comment about PTSD is right on! Very insightful of you. The recurring cycle of clearing the oxidative stress and having it resurface is one theory of how "this" all becomes chronic. I guarantee having things go along very smoothly and hitting a speed bump like osteoradionecrosis or dental issues or neuromuscular issues is exactly what makes the recovery seem like there never was one. Enjoy the good days especially because of this.

I am truly sorry for what you are dealing with and hoping and praying for many good times through it all. Never lose focus of the great intervals of life! Never give up.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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hello digtex,

I am only 4 years out and clear. But i do have a couple of things to add. I have developed pain in my neck due to fibrosis, it is 4 on 10 now but going in the wrong direction. I will go to a pain specialist at UCI in Southern CA in a few weeks and will post results. I also still aspirate food to my nose, not a significant amount, just a bit. The weight thing gives me a chuckle, let me explain. I lost about 45 lbs during treatment, I was very fit before. I wanted to get the weight back on. I call a a weightlifting supplement place. They turned me on to "Russian Bear 5000"
. 5000 cal a day! i used it for a while then switched to a product called metrex, it is about 1000 cal. Over the 4 years since TX I have not gained much weight and struggle to stay over 160 and I eat alot of food/cal per day

Steve


70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now

Just way glad to be seeing the green side up!




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Hello friends,
Ed was kind enough to send me a private message inquiring about my situation and after reading this thread again, I felt that I should respond here as well. First, after 12 years, I am still one of the lucky ones. I feel good and I still travel, work and play golf. I can still eat (ate steak in NYC last week as well as a lobster roll at a street food fair and pizza). I lost 10 pounds when I became ill last spring and cannot seem to regain it, but I look normal, just thinner than I used to be. The HBO treatments caused my eyesight to become terrible due to ripening of my cataracts. The good news: I got cataract surgery and have the best distance vision that I have had since childhood, and Medicare paid for it.
I still have exposed bone where my molar came out but the tissue around it is healthy. I still tend to aspirate thin liquids but mostly only drink water anyway.
The speech paths at MDACC want me to enroll in swallow boot camp but so far I have not done so. Eating has gotten a little more difficult for me but I can still do it if I have water to wash it down. Of course washing food down with water can lead to more aspiration. They recommended food thickener to be added to liquids. I do use it when I drink Boost but don't like it in water.
The dental onc. and H&N surgeon are doing a wait and see on my jaw, not wanting to subject me to a mandiblulectomy unless really necessary. So, bottom line: I am a little skinny, and far from perfect, but I can still eat out with others, etc. without it being obvious that I have difficulties. I am happy to be alive, feeling well and able to work and play, and to eat.
Ed, you have had it really rough. No need to feel badly for me who hasn't really had it so bad.
Good luck to all and thank you for your interest.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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Danny,

I have put 30-35 lbs back and look very normal, just a bit or a lot older and very thin. Sometimes it takes a lot of work to get back to your college weight. I just came at it throughout the back door, you might say. smile Finally at 150 and the waist is shrinking from the fat gained eating all those bad things that taste so good. Ribs, ribs, sausage, ribs, ribeye cheesesteaks, ribs, roasted pork, smoked pork, ribs...LOL

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Posts: 1,291
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[quote]I still have exposed bone where my molar came out but the tissue around it is healthy.[/quote]Hello, I am just 4 months post-tx and have had this condition too. It has been nearly six weeks and the dentist just says "looks good", come back in two weeks for a followup. The exposed part, maybe 5mm, seems to move a bit and tissue covers up the original exposed part. So, in a way improving but also moving so net zero.

He states the bone demineralizes and fades back which seems to be occurring but why does does new bone become exposed?

It causes a lot of pain up and down the side of my face and up into my skull. Do I just live with this or find a specialist cancer dentist?


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
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He has been choking on food for a few years - but this got suddenly very very bad right after the prostatectomy. In fact, we were driving home (6 hours) from prostatectomy surgery and he started going downhill - by the time we got home, I had to call an ambulance.

He has had 2 bouts of much more minor pneumonia in the last few months - too bad the doctors (and us) didn't pay more attention to the cause (aspiration) on those earlier occasions.

Hopital doctor told me last night that they see his issues, usually at 20 years out for H&N patients, not his 10 years out.


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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Donfoo,
I have found that ordinary dentists often are not very familiar with the effects of oral cancer treatments and all that it entails. I would suggest finding a dental oncologist at a CCC. I would assume that such a person is available in the Bay Area. I have been seeing my dental onc. at MDACC on a regular basis and he is monitoring the situation.
Good luck.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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