| Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Hi all,
I am almost 2 weeks post treatment. I am just starting to see a little improvement. My big challange are calorie intake, water intake, and thick nasty saliva.
I also have a little flap problem. A little water and saliva sneaks down the wrong hole. This causes me to cough more than I should. This also makes it hard to drink liquids more than a spoon full at a time.
Today I have a swallow therapy doc appt. It is a new program where they get involved early. She was sick of seeing people one year out with full blown problems with little hope for improvement.
It still hurts to drink but it does feel like it is getting better.
I am 100% on the peg but I think my swollow doc is going to make me eat something today and give me lots of home work.
No taste yet but I really miss food.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2012 Posts: 118 | May I ask what you mean by a flap problem? I don't see where you had any reconstruction done in your signature. I ask because my husband will be having free flap reconstruction next week. Just want to be prepared if there could be problems.
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06) tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09) tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12) Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Bette, as Reg has had a laryngectomy aspirating/fluid going down the wrong hole will not be an issue for him. I know it's best to be prepared but luckily this is one issue you don't have worry about. Thinking of you, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | You are correct I did not have any surgery. Epiglotis is the flap. It just allows a little liquid down the wrong pipe when I drink.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | HD - know where you're coming from. I can remember furious bouts of coughing when tiny bits of water and such would go down the wrong pipe. And I doubtless had it easier than you since I went without a PEG and so was forcing myself to drink Ensure and water for months. I'm glad you're going to a swallow specialist. They are very helpful and will give you exercises to help strengthen your muscles and retrain them.
Keep us posted on your progress.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2012 Posts: 71 | I did have the same problem about water going down the wrong pipe. I did have improvement after I hacked up some gross phlegm and it looked like some type of skin/rubbery thing. My ENT said the throat is sheding the dead skin. After about 5 week post it seemed I could drink and eat somewhat.
Let me know what the swallow therapist says and what the therapy is.
large lymph node Left Neck around May 22 2012 ENT June 6, did needle Biopsy - Negative ENT CT scan July 9 - Negative Remove lymph node July 26, DX - SSC - T1N2aM0 PET Aug 7, BOT Aug 14, endoscopy, 1cm - clear margin HPV+ TX 33 IMRT - 6 Chemo - Taxol/Carboplatin TX chemo 09/04/12 RAD 09/05/12 | | | | 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 | Some members find drinking liquids that are thicker are easier for them to swallow. You definitely should have a swallow study done to be sure you can safely drink. You do not want fluids going into your lungs, it can cause aspiration. Ask the swallowing therapist about a thickening agent that is easily found in drug stores if that would be helpful in your situation.
Good luck!!! 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: Feb 2003 Posts: 5 Member | Member Joined: Feb 2003 Posts: 5 | I remeber where all I could to was keep the fluid down. Radiation was so bad that I went into the hopistal a couple of times to have iv treatment for dehydration. After treatment it took about two weeks then I was able to keep chicken broth down. After a month I was able to eat tomatoes, but they still caused blisters. It was another 6 months before that stopped. I am 11 years out and I have extream pleasure when it is mexican night, I can taste that. My son is my tester or else others will have to much spice when I test. That is the fun part when he is not around, and I see their faces.
Last edited by ChrisMassin; 12-13-2012 07:00 PM.
| | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Hi all
4 weeks 2 day post treatment update. I am now taking all cals by mouth. I am done with the peg. I hope to have it removed this week. Swallow doc was well worth it. I am eating a lot of different things: hot dog, meat loaf, hamburger patty, hard boiled eggs and mayo, cooked veggies anything but dough products.
The only pressing issues is sore throat. It reaaly hurts when I sneeze. I also can only taste salt. Mentally I am really tired of being sick and tired. I really want to taste something.
I also can't open my mouth reaaly wide at all. I am stretching everyday but it doesn't seem to get any better.
When will this lingering sore throat go away?
See the MO tomorrow should be last blood work. It has been good the past two weeks. I see the ENT the 20th. He is going to scope me ouch!. I am sick of giving blood.
Life has really improved over the past two weeks. But I still have a way to go. To all the rest of you BOT'er, hang on, things do get better. I don't think I could not have made it without the peg or extra fluids during "the tough 4 weeks". Last two in treatment and the first two post. Don't try to be a hero, if your not getting your cals in, get the peg. Also it took 6 days to get. So don't wait to long.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Radiation continues to work just as long as treatment lasted, 6 weeks, so things are still going on in there to kill the cancer. Healing takes longer, and everyone is different. Just continues maintaining your oral care, pain medications, adequate nutrition, and prescribed exercises, and it will come along, maybe not like before, but better than 4 weeks post treatment. I could not eat by mouth until 14 weeks. See you speech and swallow therapist about the trismus, which can interfere with oral care, eating, and speech, and may be more noticeable 3-6 months post treatment due to muscle fibrosis, so exercises everyday like you are doing have to be performed. They have adjustable gauges opening contraptions that can help with the mouth opening, but forget name.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
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