| Joined: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 73 | I am in so much pain. I can't swallow my own spit. My neck feels like it's on fire. I'm emotional. Now taking food through tube and meds. Does anyone have any suggestions for coughing and neck pain. I am coughing so hard.
T4,N2,MO SCC of the BOT hpv+ Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015 PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015 Clear 4.9.2015 PET/CT H&N. 11mm low SUV nodule RUL on lung PET/CT 2nd PET 8.25.15 10+ numerous nodules bi later lungs 9.9.15 Lung biopsy SCC Org BOT Avastin and Torisel clinical trial 11/15-3/16 MDA Home 5/23/16 Pet scan 50% growth & +SUV Opdivo 6/2016 Synthroid 100 mcr Scan tumors shrinking Teeth decay 9/2016
| | | | 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 | Larry Im sorry you are struggling! Try sleeping with a humidifier overnight. You may also want to try some over the counter cough meds. Many come in liquid form which can go right in the tube. Just always rinse after meds with at least 50cc of water. If you can rinse with 2 of the 60cc syringes after taking meds or doing a feeding thats an extra 4 oz every time which helps you meet your daily hydration goals.
If you havent already done so, talk everything over with your radiation or chemo oncologist. I think anxiety meds would help you to reduce the stress and hopefully make you feel a little better. Ask them for something that works quickly without weeks of taking it before you notice a difference. I think xanax is one that is good for occasional use so you can only take it on your bad days.
Im very sorry to be the one who is explaining this but radiation is cumulative. Most patients will feel progressively worse as their treatments continue. Even the first 2 or 3 weeks after you finish treatments rads still continue to work making most patients feel worse than they did while still doing treatments. But always remember... every patient is different. Not all patients will struggle, some sail right thru with little discomfort while others struggle from the beginning.
If your neck is hurting (like sunburn) pat some thick lotion on it and allow it to soak in. Reapply several times daily but never put it on a couple hours before you go for a radiation treatment. You dont want it to interfere. I used prescription beta-val cream and also silver sulfadine. Others have found over the counter Aqua-Phor to work for them. There are hundreds of others on the market too.
Hang in there! We are in your corner rooting you on.
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 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Larry, radiation can make it difficult to swallow. John was unable to swallow even a couple of sips of coffee after Week 4. You may need to use the PEG for the time being, so don't feel bad about having to do so. It helps you to keep up with your nutrition intake and hydration. However, you must do your swallowing exercises daily and do dry swallows to keep the muscles in shape. This is vital.
Do a saline soak three or four times a day where the skin in your neck has broken down. I followed our hospital's suggestion of putting the saline on a J cloth. I then covered it with a clean dish cloth. Remove the J cloth after ten, fifteen minutes, then put the skin cream (like Pro Shield Plus, which is a barrier cream or what Christine suggests) on your neck, cover it with a non-stick dressing and put some gauze over it. The saline dries up the sores and helps them to heal. Just don't put any cream on your neck prior to treatment because it will exacerbate the effect of burning. Is your coughing caused by the phlegm that has collected in your throat since you can't swallow your saliva? If so, rinsing your mouth with flat club soda to clear the phlegm will help, so will using a WaterPik on the lowest setting with a bit of magic mouthwash. John carried a bottle of water and a spit cup around with him for months. Keeping his mouth moist helped a bit with the phlegm. Sleeping with the humidifier on as Christine suggested helps too especially at night when the mouth gets dry.
It is a tough treatment and sometimes it feels like it's never going to end, but it will end. If you need to rant, we are here for you.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | 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 | You can also ask the doc for an open prescription to get hydrated a few times per week. This will help you to not only maintain adequate hydration but make you feel so much better.
Hang in there!!! 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: Mar 2014 Posts: 110 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | Larry,
I seem to have had as poor a reaction as anyone and was unable to swallow probably for a good 4-6 weeks. One thing that helped me was to take on a lot (and I mean a LOT) of fluids through my tube (especially Gatorade type things) and then rinse my mouth with seltzer water/ginger ale. Following that, I would brush my teeth with a mint toothpaste, rinse, and practice swallowing a few times -- just water. This did burn kind of crazily, but it helped me.
I know it sounds insane and maybe it was just my own little routine, but the extreme hydration through the tube combined with using the carbonation to thin the throat/mouth gunk seemed to make swallowing easier. Also, the mint in the toothpaste seemed to kind of numb my throat a bit.
I have no idea if this works for anyone else, but it helped me swallow a few times a day at least. I hope I'm not steering you wrong here.
Good luck and try to remember (from someone that really struggled as well) -- it never hurts as much in your memory as it seemed to at the time.
Hang tough!
The Hellion
Last edited by TheHellion; 12-05-2014 10:34 AM.
SCC Base of Tongue Diagnosed 3/5/2014 T2N2C PEG Installed 3/19/2014 Chemo/Rad 3/27/2014 1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy Chemo FINISHED 5/5/2014 Rads FINISHED PEG tube removed 10/08/14 Back to work 4 Aug full time 1/19/15 - diagnosed mets to lungs 7/17/15 began Pembrolizumab clinical trial demitted October 2015 1/14/16 began Tremi-MEDI trial -This far, no further! On ne passe pas!
**update** passed away 3/26/16 RIP, you will be missed by many
| | | | Joined: Nov 2014 Posts: 23 Member | Member Joined: Nov 2014 Posts: 23 | My husband is beginning to feel the burn in his neck and has lost all taste. It's more difficult to swallow, so he takes his liquid pain med (codeine) 45 before swallowing and the magic mouth rinse right before. I know it's hard for him too, but everyone can't stress enough how important it is to maintain nutrition and hydration. All of the advice on here really helps. I wonder if some sugar-free mints wouldn't help sooth your cough. Miaderm is the neck cream the Oncology nurse recommended.
CG of husband,50, history of smoking BOT HPV+ and one node diagnosed 11/14 8 chemo and 36 radiation treatments 2016 40 HBO dives, removal of two teeth one year scan clear | | | | Joined: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 73 | I am in hospital after vomiting several times. They found fuid in rt lung. Now getting antibiotic and pain meds in hospital. Had severe diareah. This sucks.
T4,N2,MO SCC of the BOT hpv+ Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015 PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015 Clear 4.9.2015 PET/CT H&N. 11mm low SUV nodule RUL on lung PET/CT 2nd PET 8.25.15 10+ numerous nodules bi later lungs 9.9.15 Lung biopsy SCC Org BOT Avastin and Torisel clinical trial 11/15-3/16 MDA Home 5/23/16 Pet scan 50% growth & +SUV Opdivo 6/2016 Synthroid 100 mcr Scan tumors shrinking Teeth decay 9/2016
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Larry
Its really a good thing that your in the hospital. You will get the pain meds and IV Fluids that you need . My mom was very sick and in a lot of pain from her treatments also. Her throat and mouth were burnt and on fire so When she started vomiting that was double torture . To the hospital we went and that was the best place she could be .
I hope you feel better soon Larry .
Take Care Heidi
Last edited by sweetpe1; 12-06-2014 06:52 AM.
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Larry, if you have both diarrhea and vomiting, the help you can get in hospital is the best. They will ensure you are adequately hydrated. Did the doctors mention that the fluid in your lungs is from aspiration, that when you swallowed, the fluid went down the wrong way? Can they arrange a swallowing test for you?
Really hoping that you will feel better soon.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 73 | I can't swallow at all anymore. Now I am in hospital they found fluid and are giving me antibiotics. I am on morphine and tolerated my 1st feed. How does one fit 7 feelings into one day? And then the chemo and radiation Drs visits and sleep?
T4,N2,MO SCC of the BOT hpv+ Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015 PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015 Clear 4.9.2015 PET/CT H&N. 11mm low SUV nodule RUL on lung PET/CT 2nd PET 8.25.15 10+ numerous nodules bi later lungs 9.9.15 Lung biopsy SCC Org BOT Avastin and Torisel clinical trial 11/15-3/16 MDA Home 5/23/16 Pet scan 50% growth & +SUV Opdivo 6/2016 Synthroid 100 mcr Scan tumors shrinking Teeth decay 9/2016
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