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Joined: Dec 2012
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I had my rigid endoscopy procedure yesterday but have very little detail because the Dr did not stick around and talk to me. He spoke very briefly to my wife saying only that he was able to get through the stricture and dilate it and he was very happy with the outcome. I can swallow now in smaller amounts than previously, but I am elated with the progress. I drank two ten ounce soft drinks while in recovery. By the time I got home (6:00 PM) I was very tired and it became very painful to swallow so I am taking some pain meds and an antibiotic so that I can continue swallowing and keep the stricture open. The stricture is likely an accumulation of scar tissue from the radiation. I think the pain will subside in a few days and then it will get easier. Apparently the Dr had to use a little force to breach the stricture and that is the cause of the soreness. There was traces of blood in my saliva yesterday but gone today. He also told the nurse that I might need another dilation (maybe two). This is very common for esophageal strictures and he will likely turn me back over to the local gastroenterologist for these procedures and eventually the removal of my feeding tube. I have an appointment on April 9 with the Dr that performed the procedure to discuss this. There is some possibility that the stricture will close up some so I will be sipping on something all day long to exercise the swallowing muscles.

So far I have had only liquids, mostly clear, but will start on some creamy soups, Jell-O and pudding. My goal is to be able to consume enough calories orally so that the feeding tube can come out without losing any more weight. That might take a month or longer but I can easily deal with that.

As you might expect I am absolutely thrilled with this unexpected outcome and I want to thank you all for your support. I went from a total occlusion of the esophagus to sipping liquids rather normally with this single procedure. It has been over six months since I last was able to swallow and I am looking forward to some of my favorite dishes. Tonite it will be homemade potato soup.

Again I am thrilled and thanks again to all of you.

Mr Mike


WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
#163434 03-30-2013 06:43 PM
Joined: Dec 2012
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Three doc's recommended the tube before starting treatment..... they were right. By week three of treatment I had no swallowing function and this lasted 6 months. Fortunately I had my third endoscopy procedure yesterday to breach the stricture and it was successful and I was dilated. I can swallow now in smaller amounts than before treatment, but I am elated with the progress. I drank two ten ounce soft drinks while in recovery. By the time I got home (6:00 PM) I was very tired and it became very painful to swallow so I am taking some pain meds and an antibiotic so that I can continue swallowing and keep the stricture open. The stricture is likely an accumulation of scar tissue from the radiation. I think the pain will subside in a few days and then it will get easier. Apparently the Dr had to use a little force to breach the stricture and that is the cause of the soreness. There was traces of blood in my saliva yesterday but gone the following day. He also told the nurse that I might need another dilation (maybe two). This is very common for esophageal strictures and he will likely turn me back over to the local gastroenterologist for these procedures and eventually the removal of my feeding tube. I have an appointment on April 9 with the Dr that performed the procedure to discuss this. I cannot take big bites but small ones with a sip of water go down fine and I have not swallowed in six months.

As you might expect I am absolutely thrilled with this unexpected outcome. I went from a total occlusion of the esophagus to sipping liquids rather normally with this single procedure.

Me Mike


WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
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During my six months of disphagia I was totally on the tube. For a while I did some swallowing exercises hopefully to make it easier when and if I got my swallowing function back. I am not sure the exercises were any help. When the obstruction was finally breached on Mar 22 I had no real problems at all swallowing except the quantity I could swallow comfortably was much less than before the chemo/rad treatments. This will be work in progress. My goal is to be able to eat enough (probably 2300-3000 calories /day)without the tube. Right now I would have to have about 6 meals a day to consume that many calories, but I am down to 2-3 cans from 4-5 cansof formula per day so I am heading in the right direction. I will be asking the Dr about additional dilations, steroids and/or minimally invasive surgery to further open up my esophagus. Meanwhile, while I want this tube gone, just being able to drink and swallow again is a huge improvment. I am thankful and uncomplaining. What was interesting to me through this whole deal is when the obstruction was cleared, I did not have to re-learn to swallow. It just worked as before but I just can't get a lot of volume through....small bites, little sips, and Ensure type supplements may be my future.

Mr Mike


WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
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Mr. Mike,

One only need to have something compromised to gain an understanding of what that does to you. While I've not reached the point of not consuming anything by mouth, I've lived off of cream of wheat and broth. That first taste of solid food was glorious! I can imagine how wonderful it must be to be putting food back in your mouth!

Glad to see your swallow returned.

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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Well it is now three weeks since my procedure that opened my esophagus. I can eat many things but in small bites and a glass of water always at hand. Learning to eat slowly takes a little practice. Nothing tastes very good yet except maybe some good old chicken soup, but hopefully that will improve. I have to triple salt things to improve taste and decided that's not good for the blood pressure. I ate in a restuarant for the first time since last summer and did pretty well. No steak yet but a hamburger steak is doable. I didn't let them mess with my teeth at the outset and I really appreciate all the money I spent on dental care over the years because I really need the teeth now to eat. No more gulping things down.

My regular gastroenterologist called me today (ain't that something). Wanted to know how I was doing and since I have stopped using the feeding tube he will set up an appointment to see if another dilation will be helpful (I told him I could only take small bites). He will then assess me for tube removal. He does not want to be premature on removing it, but my goal is to be rid of it.

So, my story has been very good. I have 80% of my strength back and no complaints.

Note to CristineB.
Christine, I want to thank you for your contributions to this site and your enduring patience with all of us. I have reread your history a couple times and you have really been through the wringer and at such a young age. You have my best wishes for a long, healthy, and happy life.

Mr Mike


WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
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How about trying buffets. You can taste just a bite or two of many different foods. Be very cautious with chinese foods, the spices can burn. Chocolate milk helps soothe a mouth thats on fire from spicy food. Keep trying, it will get easier and things will taste a little better in time.


PS....Mike, thank you very much for our kind words! Im here to help others and give back as those gave to me when I needed help. Thats what this site is about, helping each other.


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
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Mike that's great. I'm 6 months post surgery, and still have to take smaller bites...actually I eat most things with a fork and knife, which is easier. It's worked out well in terms of keeping the extra pounds off. I don't think I realized how much I ate at one sitting before!

I still use a bit more salt and a bit more sugar in my coffee, but for the most part taste is normal now.

Keep up the good work!

Oh, and ditto to Christine...I was gobsmacked when I read the story as well, and felt like my issues were just a bump in the road - certainly helped me through!


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
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I am confused. If your barium swallow test showed no swallowing function, how are you swallowing. Just asking for my hubby who has failed the barium swallow test twice now.


1/16/12 - diagnosed with Stage IV BOT cancer with 2 nodes involved. HPV+
2/12 - 4/12 - 40 rads and 8 chemo
7/12 - PET clean
10/12 - cancer back at base of tongue
12/17/12 - partial glossectomy, neck dissection
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Chuckles, reread this entire thread. It shows Michaels surgeries that have enabled him to regain his swallowing. Not all patients are successful like Michael has been. Hope he continues to keep up the good work. Best wishes to your husband, Chuckles!


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: Mar 2008
Posts: 3,082
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Mike

Your story is amazing. What hospital and doctor did you use?
My three rounds of radiation have so fried my constrictor and esophagus and epiglottis that no one has mentioned surgery as a cure. I will follow up with my ENT. Thank you for sharing.
I dream of being able to have a cold sip of water. It has been four years since I have eaten one bite of food or had a sip of any thing. I failed 4 Barium swallow tests. This last round o radiation has put me over the limit and hospitalized me three times already this year due to radiation complications all connected to not being able to swallow.
Congratulations on your success. At this point, I would try any surgery but so far everyone tells me nothing will help.
Don't worry about the feeding tube, just focus on being able to swallow.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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