| Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | They actually took the trach hardware out before I left the hospitalbut it was a while before the stoma started to close. I kept a pressure bandage on it and pressed it when I wanted to talk -- I was sure glad when the stoma finally closed over and I could speak without a hand on my throat.
I am swallowing liquids and occasional food (saw a doughnut in food store and have to have it! Took a while and a lot of water to soften it to the point where I could swallow it, but it was good!! Don' let your dad force it; when it's ready, he will know.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Aug 2008 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2008 Posts: 30 | Thanks Pete, that's good to know. It sounds like your recovery has been coming along steady. I hope you enjoyed the doughnut! My dad may get his trach out next week. That will be a big milestone. Have a great day. Rett
Rett Father 80 y/o with BOT Stage IV/ SCC, laser surgery to remove tumor 8/08, Hemi glossectomy, reconstructed tongue, right side neck dissection, RT began 10-8-08, chemo not recommended because of age, Peg tube, non smoker/drinker.
| | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2008 Posts: 113 | Jim has had a feeding tube since april, 08.....he still can't swallow anything...he tries sipping on some water, but he still can't swallow...i wonder if he'll ever be able to swallow. when i tell him to try to do his exercices, he gets mad at me . what is the longest that someone has had a feeding tube then was able to swallow. It's been 6 mos and i worry that if he doesn't start swallowing even a little water, that he won't ever be able to. Can someone help me out here ? Claudia
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Sep 2008 Posts: 250 | Claudia,
I ended up in the hospital this past March because my throat had closed up completely - over a year after treatment stopped. I couldn't get even water down, but I had been able to before. A gastroenterologist dilated my throat, and I've had it done twice more since then. He couldn't dilate all the way all in one shot so each time it was dilated to a larger level, and I'm done now unless I have trouble again. Dr said this can happen as much as 2 years after radiation.
The procedure is a breeze to go through. You go to sleep, and wake up being able to swallow much better. There is no pain and results are immediate.
I don't know if your father is having the same problem, but it's a thought.
Best of luck to you both,
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08 "A bend in the road is not the end of the road, unless you fail to make the turn" Passed away 12/14/08
| | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Sep 2008 Posts: 250 | Sorry Claudia, I meant your husband, not your father. Can I blame that on my brain blips, too? Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08 "A bend in the road is not the end of the road, unless you fail to make the turn" Passed away 12/14/08
| | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2008 Posts: 113 | Thanks Lani---When we were at the speech pathologist last month , I overheard the dr. talking to the nurse about a possible dialation at some point. I'll find out more next visit. Claudia I don't know what I'd do without this board. It's my comfort amidst this storm.
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2008 Posts: 113 | Rett. How's dad doing ? Let me know. I care. Claudia
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | Joined: Aug 2008 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2008 Posts: 30 | Hey Claudia, My dad is hanging in there. Unfortunately he's still not swallowing. He hasn't really tried to eat or drink anything and I'm really afraid if he doesn't he'll lose the ability altogether. He never did the swallow study because the day they wanted to do it, he was exhausted and nervous. He starts his radiation next week, which I think might make the swallowing situation even worse. My sister is trying to get a speech therapist to come to the house and evaluate him. We'll see what happens. I hope your husband has some good news in the next few weeks. I know what you're going through (and him). It's really hard to watch someone you love go through this. Rett
Rett Father 80 y/o with BOT Stage IV/ SCC, laser surgery to remove tumor 8/08, Hemi glossectomy, reconstructed tongue, right side neck dissection, RT began 10-8-08, chemo not recommended because of age, Peg tube, non smoker/drinker.
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | I know that following my first extensive surgery and treatments I found it really difficult to drink any water not only from a cup but also through a straw. Having so much of my tongue removed that plays such a major part of movings things around my mouth I know how frustrating it is and how deflated it made me feel. I tried to sip and drink all sorts of different things and I found that I can drink a milk shake easier than I can drink water.
I mentioned this to my speech therapist who told me that that would be because water is a 'loose fluid' and because things like milkshakes are thicker I have more control over them in my mouth. On reflection that made so much sense - water just goes all around my mouth, I can't taste it or hardly feel it therefore I have hardly any control over it where as things like shakes I can feel and can control so much more.
It can be a very long slow process, even now I still have the same result with water as I did all those months ago.
Hope this helps a little
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Sep 2008 Posts: 250 | My therapist gave me a can of Hormel Thick & Easy. It can be added to any food or drink (including water), hot or cold, to reach the thickness you find the easiest (or at least the least difficult). He said it's tasteless, though you couldn't tell by me since I couldn't taste much then, anyway. Also, I asked him why I could only swallow with my chin tucked. If I try to swallow with my head up, like from a water bottle, etc., it goes right down into my lungs and up into my nose. He explained about how the trachea & esophagus "sit" in the throat and how tucking you chin helps direct food & drink by changing the position. I don't really know how to explain it as well as he did, because he used his hands to demonstrate and you can't see my hands.  I'm sure someone else here can probably do it, though. Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08 "A bend in the road is not the end of the road, unless you fail to make the turn" Passed away 12/14/08
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