| Joined: Apr 2012 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 29 | My husband is half way through treatment tomorrow,rads 5 days a week and chemo(cisplaten)one day a week.On Tuesday due to swelling of tongue ,mucos,and very sore mouth which caused him not to be able to eat and he was also havind trouble with his fluid intake the team decided to admit him to hospital for a week.Last night the surgen came to see my husband and said since he was on Cisplatin he would not advise a tube feed as those on cisplatin do not heal well after and there can be some leakagefrom the site in the future.The surgen said he would talk to my husbands team and advise against it.Just off the phone from my husband and he can hardly talk and said his mouth is very sore they gave him morphine last night and a syringe without the needle to apply a cream/fluid which really helps.My husband is also on warfren and has been for a number of years and this my also complecate things..Do you think they will be able to feed him through the nose or will he have to just try and get as much fluid and calories through his mouth.
He has a great team and is in a great hospital and up to this point is very positive and confident but I am afraid that as each new side effect comes it will get him down.
I think this site is great and for the last mounth have been looking at it every day to plan ahead .Because of you he had his hearing Tested , a speech thERAPIST on board .We have ordered the THERAbITE AND have A NEW BED WHERE YOU CAN RAISE THE HEAD SO HE CAN SLEEP BETTER.aLSO CAN YOU TELL ME WHICH MODEL OF WATER PIK (SORRY CANT REMEMBER EXACT NAME) TO buy.
sorry for mess in note but not sure how to incress size of box so will leave as is or wount get this off to you.
age 50,dx march 2012,tx start 16th may,rads 34 imrt,chemo 7,no surgery.HPV ?.stg 4 BOT plus 1 sliva gland and toncil,casual drinker,smoked 19yrs ago but had odd cig.cycles approx 10ks 5 days wk.
| | | | 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 | As you can see I had Cis but it was administered in the "Big 3 Bag Method". I refused to have a PEG insurted from the beginning and I never heard from anyone about a warning re Cis but that was 6 years ago. You are also the first to mention this in the 6 years that I have been on this site. All that aside I can't believe they haven't considered the nasal tube vs the PEG. I did give in post Rad and let them put in a nasal tube and I had it for appx 2 weeks (all that I needed). It was quick, almost painless and it did the trick for my stubborn butt.
GET THE NASAL TUBE
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: Apr 2012 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 29 | Thank you,I will tell my Husband I am collecting him at 4 and he will be home for a few hours to help our daughter with maths as she has an exam tomorrow.As regards cis and the feeding tube its seems funny to me as they have most of the patients they are treating on same schedual(5days of rads and one day of cis for 7 weeks)and from the start they said at some stage andy would most likely have to have a FT ,anyway I know more soon,thats great that the tube down the nose works.The name of the gel the nurse gave him is "Instillagel" and it comes prepacked in a syringe which makes it handy for applying inside the mouth.
age 50,dx march 2012,tx start 16th may,rads 34 imrt,chemo 7,no surgery.HPV ?.stg 4 BOT plus 1 sliva gland and toncil,casual drinker,smoked 19yrs ago but had odd cig.cycles approx 10ks 5 days wk.
| | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | Seana, my husband has not started chemo yet, that's coming in July, but we're looking ahead. Have you found the bed with the raised head has helped your husband's sleeping? I've read from others that they've slept in recliners, never considered a bed with postions, sounds like it might be helpful
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Apr 2012 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 29 | AnaD We got the templer bed its form america ,there are lots of different types of mattresses but its the bas that is important you want the one which lets you adjust the head and legs like the ones in the hospital we only have it 3 weeks but my hisband thinks it great and I think it will come in mors useful as time goes on.we go the humifider too its only about 25$ as someone mentioned this helps with dry mouth when your sleeping ,I dont know if it helps much but we use it.Lastly I went to a bicycle shop and got a drink bottle like you se them use on the TV with an attached straw which is great as when he get thirsty at night all he has to do is put the straw in mouth and suck for water no spillage and nolookingaround for bottle.Hope these things help . seana
age 50,dx march 2012,tx start 16th may,rads 34 imrt,chemo 7,no surgery.HPV ?.stg 4 BOT plus 1 sliva gland and toncil,casual drinker,smoked 19yrs ago but had odd cig.cycles approx 10ks 5 days wk.
| | | | Joined: Apr 2012 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 29 | ANAD, ITS A TEMPER MATTRESS THE ONES THEY DEVELOPED FOR THE ASTRONOTS AND AS MY HUSBAND SAID HE IS GOING ON AN ADVENTURE AND WONT BE BACK FOR SOME TIME!i THINK HE WILL HAVE NO TROUBLE FITTING BACK INTO HIS WEDDING SUIT.
age 50,dx march 2012,tx start 16th may,rads 34 imrt,chemo 7,no surgery.HPV ?.stg 4 BOT plus 1 sliva gland and toncil,casual drinker,smoked 19yrs ago but had odd cig.cycles approx 10ks 5 days wk.
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Seana wrote:
"Lastly I went to a bicycle shop and got a drink bottle like you se them use on the TV with an attached straw which is great as when he get thirsty at night all he has to do is put the straw in mouth and suck for water no spillage and nolookingaround for bottle."
That's very clever - I think they call them camelbacks in the States! I slso like the idea of the Temper mattress with adjustable head and foot positions.
For those on a bugdet, one of those reading pillows with the side arms might also help. My husband used his big, ratty, overstuffed chair fairly often.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi Seana. My husband John had daily radiation (5 days a week) and weekly Cisplatin for 7 weeks. My husband had a PEG put in before treatments began and I don't know how he would have survived without it. Radiation keeps building and when treatments are over you still keep "ccoking". I have never heard of a conflict with Cisplatin and a feeding tube. A PEG is just another "tool" in this brutal fight. I bought John a pillow wedge and he would "try" to sleep semi-sitting/laying. Best wishes. Being a caregiver is hard work!
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi - I too have never heard of any contraindications with cisplatin and a peg... In fact just the opposite... I had no problem with it going in and or coming out.. And no leakage. Or any other issue though I would like to say I couldn't use it because the formulas didn't agree with me. Most drs push for a peg - very surprised to hear your drs. claim. a peg can be priceless. The only negative I've found with them is that if you don't continue to swallow it can lead to swallowing difficulties after treatment is over.
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: 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 | Camelbak is a hydration device that resembles a backpack with a tube for sucking water. I used this when I first started back riding but found it dangerous and useless. Anyway that's different from a water bottle with a straw.
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.
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