| | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Apr 2012 Posts: 60 | Hi everyone,
I just wanted to give an update. I have been told I can eat, but when I drink thin liquids I get pnemonia, so I am trying to talk my ENT to just let me eat soft foods and thicken my water. See her on the 4th. Also, started taken salogen for dry mouth. Day 4 and seems a bit better. They said it takes about 2 weeks to really see if it works or not. Can't hurt to try new things. You need a perscription to get it.
Thanks
Last edited by ChristineB; 08-27-2012 08:59 PM.
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Charm had a post about the fluids going into the lungs and causing pneumonia. I forget which forum it's in. I guess you have to be careful.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2012 Posts: 60 | You are right. I am just learning where to put my comments. I just want everyone to know that there is hope for us who cannot swallow and have a G-tube in place. Everyone says live with it and I guess even after 15 months I know and hope I will be eating by 25th wedding aniversary. It takes time and research. Yes I have learned the hard way to be careful. Thank you for listening.
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
| | | | | Joined: Apr 2012 Posts: 47 "OCF across the pond" Contributing Member (25+ posts) | | "OCF across the pond" Contributing Member (25+ posts)
Joined: Apr 2012 Posts: 47 | Hello Itsokaytoday
I am just a week out of tretment and you are confirming my next battle trying to learn how to eat again. I guess you dont know the importance chewing saliva and the mouth part of eating is to successful and happy mastication.
My old Dad used to say the Selkirk grace as noted by Robert Burns.
"Some hey meat and cannae eat,
and some hey none and want it,
But we hay meet and we can eat
so let the Lord be thank it."
Keep us informed if things get better and you and me are both looking forward to saying this grace and feeling what it means.
over and out CubanKeith.
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | It's okay. Have your tried acupuncture? Take care... And hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2012 Posts: 24 Member | | Member
Joined: Jun 2012 Posts: 24 | Words of encouragement: I had PEG tube inserted 5/9/11 before I started chemo/radiation. I kept water by my side every second to try to keep swallow reflex and muscles working. Unfortunately for me, after my RND everything I tried to eat or drink came out my nose (partially-some went down).
I got into therapy and learned some exercises to do to improve my swallowing. Nothing seemed to help. I got severely depressed and gave up trying. I relied 100% on tube and liquid nutrition. Eventually, with the help of meds, my depression lessened. I began trying to eat. I just COULD NOT swallow solids. My ENT examined me and told me my anatomy was fine and that my tongue muscles just couldn't remember how to get the food down.
I tried and tried, but couldn't get solids down without using copious amts of water to wash them down. I would get so full of water that I only ate a few bites-nowhere near enough to sustain me. Frustrated again, I went back to using tube exclusively and not trying solids. I truly believed I would have PEG forever.
HOWEVER, over time, and after much lecturing and encouragement from my supporters, I am happy - ECSTATIC - to say that I had my PEG removed (OUCH!!) last Monday. (I lost 90+ lbs overall). My husband got me a Magic Bullet and I pur�e most of my food (pancakes and scrambled eggs are favorites), but I try solids more often too and they are going down better with less water.
So........there truly is hope. Don't give up. With therapy, encouragement and lots of trial and error, you just might be eating real food again!!
Best of luck and keep your chin up. You can get thru this.
-Wendy
Wendy 48@dx
Dx 2/11 stgIVSCC BOT
Dx 3/11 stgI breast (3rd of 4 sisters dx'd)
4/11 dbl mastectomy; no further tx reqd
5/11 PEG placemt;
5/11-7/11 chemox7;IMRTx35;
MRND 9/11
11/12 Dx:papilledema;hydrocephalus;psuedotumor.
11/12 LumbarPeritoneal Shunt
12/12 PEG Out; 100 lbs lost
All scans clear
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Great news Wendy. Reclaiming some of our pre Tx life is soooo rewarding!
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.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Wendy, thanks for posting your update! Its so encouraging for other patients to see things like this. I bet the day you were able to get rid of the tube you were ecstatic! Congrats!!!
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  | | |
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