#79441 08-26-2008 06:26 PM | Joined: Aug 2008 Posts: 1 Member | OP Member Joined: Aug 2008 Posts: 1 | Hi, my name is Shane. I just wanted to introduce my self and brief you on where I am at. I found a lump in in my neck and my ENT diagnosed it as a Brachial Cleft cyst. Upon removal and Biopsy they found SCC cancer. The primary was located in my left tonsil which was removed. I am now in my second week of Radiation (no Chemo). Food has already started to taste horrible and the thought of eating makes me what to vomit. I have been drinking ensure but now that stuff is starting to make me gag. I have lost ten pounds since july 29th, down from 145.
Thanks, Shane
| | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | Hi Shane, Welcome. Has anyone suggested a feeding aka PEG tube. I know there are alot of opinions on the subject. My husband has had his for almost a year now and it has saved his life. Any reason they are not doing chemo?
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | A lot of folks fight having the PEG, perhaps because it is just about the only thing we have a choice about in this, but I have had two of them and find them to be a good thing (As long as one works on keeping the jaw opening and swallowing liquids every so often to keep it all working).
There's a lot less nausea involved with the PEG because it isn't affecting smell or taste, unless you try to force it too fast and your gut can't handle it.
Consider using higher calorie food like Nutrena 2.0 (500 cal/can) or Carnation VHC (560 cal/can) so that the number of cans per day is reduced to hit the same calorie level. Losing weight right now is not a good thing and it's going to get worse before it gets better.
Get your Doc or Nurse to prescribe some anti-nausea meds.
My second PEG, following my free flap procedure, wasn't a choice -- My mouth and throat were so swollen that it would have been impossible to swallow -- Of course, there is always the alternative of a Naso-Gastric Tube (NGT) with a pump to push food through your nose...
Last edited by Pete D; 08-26-2008 06:56 PM.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Pete,
I really wasn't given a choice on the PEG. And its a good thing too! My instinct was to refuse the second one, after the first one had to be removed, but the docs were right. There's no way I could be getting in my calories now with my mouth in the shape its in. My docs were truly saving me from myself!
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Shane, Your weight is frightening. It seems you must not have a PEG.
Are you being treated at a Cancer Center by a multidisciplinary team?
I have had weekly appointments with Dietitians since surgery and their job was to fatten me up and get me ready for using the PEG and formula.
Post surgery, I was immediately gaining weight.
This is likely to only get a lot worse and at your weight you really need to get pro-active with your medical team.
I would ask them if you might still be able to get a PEG and if so do it this week. You will regret getting PEG for a few days, but after that really be glad you did.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | 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 | Shane,
I question why they did not recommend any chemo especially since you had a positive node.
I did not opt for a Peg and believe me it was rough going but it did force me to continue swallowing and I have not not any post Tx swallowing problems. If you do decide to get the Peg you need to tell your doctors ASAP as they usually won't installed it if your too weak or your WBC drops which can happen as your Tx progresses.
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: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Shane, I echo David's staement above. I also went thru this without a PEG, is was hard! I am surprized that you didnot recive Chemo as my case was also in the left tonsil. Good luck in your WAR. Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | 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 | Hi Shane.
Welcome to OCF. You will find lots of support and answers to your questions here. Has your doctor said anything about your weight? Do you see a dietitian? My doc and dietitian both had a fit when I dropped 15 pounds in one week when I was starting radiation.
As several people here mentioned, a PEG tube is a very wise decision. If you are starting to struggle already, then it will become a necessity very quickly. Talk to your doc asap about it.
Without proper nutrition and hydration you will end up being hospitalized. Ive been there twice for malnutrition and dehydration and that was with a peg tube. Without it I would have probably been admitted for the whole duration of treatment. Make sure you are getting a minimum of 48 oz of water daily.
I wish you the best of luck with your treatments. Please keep posting as questions arise. You have found a great place that will support you thru this journey.
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: Oct 2008 Posts: 2 Member | Member Joined: Oct 2008 Posts: 2 | hi shane my husband never could stand ensure he has had a lot of luck with walgreens nutritional drink plus 350 calories a can mixed with milk for the last two years good luck to you | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I had a neck dissection and partial tongue removed. I practiced swallowing using my imagination while they were feeding me thru atube. About the 3rd day I told the nurse i could awallow so don't crush the meds but put them n my mouth. She edid and I did. LOL She couldn't believe I could swallow. I lost 70 lbs in short order but I tried to keep up the flow of liquids to my stomache. Gradually it is packing back on my frame. Go for the Carnation VHC, that;s what kept me going. Good luck and fight hard. Had a lot of other things done to me too.But yiu know what?? I am alive and kickin, just not too high or hard.
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | Don't believe him those kicks hurt!!!!! I didn't have the rads or other tx either and also had a neck dissection and bottom of my mouth removed and a free flap implanted...I didn't give the medical team a chance to take out feeding tube I pulled it out in my sleep...and same story with the pills they are awful tasting when crushed up...I found that one spot way in the back that had no surgery done and put the pills way back there and swallowed same reaction jim...total shock...I am having the other problem actually gaining weight...I have never seen a doctor smile so big to hear that news...anyway Shane long and short just find your nitch and use it some of it is trial and error and some is really good advice from the kind people here...when I first joined this site I was a mess and now have found a new family with a common bond....
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | |
Forums23 Topics18,199 Posts197,006 Members13,186 | Most Online614 Jul 29th, 2024 | | | |