| | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Wendys
The answer is "it depends". As you noted, some posters are eating very rapidly, others not. The best thing is to see a speech pathologist/therapist to get the basic exercises:
forceful swallow etc.and then a Modified Barium Swallow test.
Very very few people go as long as I have without being able to eat, but I had surgery on radiated tissue, then even more radiation afterwards. A lot depends on what part of your tongue the surgery involved. Mine was base of tongue which is very bad for relearning swallowing. I would have killed to be at the "can't eat very well" stage after only one month. I am still not there. Both the speech and the eating will get better within the year.
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
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Hello wendys and JojoFlores,
I had 40% of my tongue removed with no reconstruction. It is what it is. I began eating about two weeks after surgery then I started rad txs and basically was on a liquid diet for 5 or 6 months due to taste and swallowing issues.
I finished my tx 11-4-08 and I just got done eating pretzels dipped in peanut butter with nothing to drink, lol, it wasn't easy but it was very doable; although, I will be getting a tall glass of cold milk not because I have something to wash down but because it just seems logical to drink some milk after having peanut butter. I eat almost anything..always have and always will.
Practice, practice and practice and don't be afraid to try try and try again.
One more thing--it would be easier if you both create a signature (check mine out on the bottom of my response) and when you have a question start your own thread so your concerns and questions do not get lost. With your own thread you will get better undivided attention from a bunch of great people with great advice. And it alleviates someone else's thread from being hijacked.
stay strong
Last edited by Ray1971; 12-13-2009 05:48 PM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | A milkshake might be an easy start when relearning to eat. Yogurt and pudding are also easy. Here is a link to a list of easy food I posted a while back. Hope it helps. http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | I make myself a milkshake every day with Ensure, a bannana and a scoop of ice cream. I also throw a liquid vitamin in the mix and sometimes a couple of spoonfuls of Ovaltine. I found that mashed potatoes kind of stick to my teeth, so haven't had much luck with those. I also have tried thinly sliced chipped ham. It just takes me so long to eat ANYTHING!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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