#95908 05-22-2009 02:12 PM | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | My long-time boyfriend will be starting his radiation treatment next week, after having surgery to remove cancer from the right tonsillar region and three cervical lymph nodes. One hears (reads) so much about the mouth/throat pain. Do the docs prescribe much in the way of pain pills or patches (think patches would be better, not having to swallow them). Do the xylocaine/lidocaine washes work? Thanks for any input.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 | The mouth washes work for me. Not very pleasant, but they do the job. Good luck to the both of you. How many weeks of Rad?
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called cancer!
| | | | 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 | One thing that you will find as a common thread on this site is what works for one never works for all and how someone fares during Tx will be up to that individual as we all can be different so if you try something and it doesn't work, keep on trying different things. Unfortunately sometimes nothing works but the good news the bad part of this Tx usually only last 6 to 7 weeks.
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 2009 Posts: 104 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | Actually don't know for sure how many weeks! Rather little info; it is going to be 5 days/wk which seems to be the usual based on what I've seen posted here.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: Apr 2009 Posts: 10 Member | Member Joined: Apr 2009 Posts: 10 | David, my husband is sweating a lot. Is this common? IS it the meds? Glenda
dx 04/09 BOT Stage 4b, scc, met to leison 6th cervical spine, May 15th, 2009, 12 rounds rt to spine. no relief for pain, top of back and right arm. started 38 rounds of rt and Carboplatin and Erbitux June 2 once a week at least while receiving RT, RT daily. Port and peg.
| | | | Joined: Apr 2009 Posts: 10 Member | Member Joined: Apr 2009 Posts: 10 | My husband is sweating a lot throughout the day. Is is the meds or cancer. He is finished with radiation yesterday.
dx 04/09 BOT Stage 4b, scc, met to leison 6th cervical spine, May 15th, 2009, 12 rounds rt to spine. no relief for pain, top of back and right arm. started 38 rounds of rt and Carboplatin and Erbitux June 2 once a week at least while receiving RT, RT daily. Port and peg.
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | There are meds that can make you sweat, but I doubt he is on them yet. (Salagen, Exovac)
What is he taking?
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Gretchen: Doctors will provide all/any medication needs for pain. They do not want you to suffer, but they will scale it up as the pain increases.
So don't worry, they'll take care of you.
Sandy
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Gretchen: re lidocaine I am a big fan of viscous lidocaine. MInd you it only works locally and only for a short time. The local part it great the short time effect sucks! It does not replace a Oxycodone/Fentanyl etc ! but you can use it together with them. I used the lidocaine from week 5 one when I wanted to drink/eat or speak. It allowed me to reduce the other narcotics.
Best
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | 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 | Spouse,
Please start your own post when asking a question you want answered. That said, sweating can be caused by many things including his meds or his thyroid being damaged due to the radiation which is VERY common but usually takes months to show up. A simple blood test for his TSH levels will determine that and the solution to that is a simple once a day pill.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Gretchen Pain will delay and hinder both recovery and healing. The problem is not usually over prescription but misplaced fear of addiction. Patches are wonderful, but the are so strong that your boyfriend will have had to have been on the oxycodone pills for while to build up tolerance even to the lowest dose fentanyl patch. The earlier he starts on pain pills, the better he will be. Unfortunately the mouthwashes made me vomit but they have worked very well for others. Here is a link to a FDA page on fentanyl patches that has some "horror stories" . I stress that it is highly unlikely that your boyfriend will experience any problems with the patch and offer it only so well meaning but ill informed "friends" do not dissuade your boyfriend from getting the necessary pain relief. I LOVED my patches for the exact reason you noted: no swallowing. Proper Use of Fentanyl Pain Patches 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | You missed one David, maybe it is just too hot. Couldn't resist an open door. LOL
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: 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 | Sometimes I overlook the obvious. lol
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 2009 Posts: 104 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | Appreciate the input... To 'Charm2017': The RO office (the RN there) said they don't use fentanyl patches much, more usually liquid Lortab or morphine. So, we'll see. It seems that fentanyl, with its steadier blood levels, would be a good idea. The fact that it's transdermal is a big plus w/the swallowing issue but I guess other pain meds can go into the PEG tube, assuming there's one in place.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Yes meds can go into the peg tube,but fentanyl delivers a regular level of medication 24/7,keeping pain under control,and oral morphine is then added for breakthrough pain.i dont know why anyone would tell you they dont use fentanyl much any more,as it is and was a life saver for many many people here.why have to wait for the pain to get unbearable and then wait 20 mins for meds to kick in,when you can be comfortable most of the time?
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | I am very surprised to hear the response of the nurse concerning Fentanyl patches. I was treated at a CCC and that is their "gold standard" for pain control. It is not only very effective but also very convenient. Curious as to why your medical provider prefers liguid morphine. I suggest you ask them WHY? and still push for the patch when appropriate 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2008 Posts: 148 | I concur with Charm on the Fentanyl patches. My RO started me on those around the 3rd week or into tx stair stepping up dosage as pain increased and stair stepping down following end of tx. I never felt loopy but think it helped take the edge off along with magic mouth wash and oxicodine. Good luck to you.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Gretchen
I posted today before heading out to TX and did not expect to see my RO or else I would have waited. He was equally surprised about that nurses comment. Ironically, he then wrote me a prescription for TEN 50 Mg Fentanyl patches - instead of the 25 mg ones I used last time. He wanted me to have them on hand and stressed that they were the best way to keep the pain from interfering with my recovery. Plus he wrote a script for liquid percocet to save me from crushing them like I do now for the PEG. I did have to have them both filled at the Hospital pharmacy as the chain pharmacies in my area had already told me it would take a week on special order. Perhaps your nurse knows of issues getting them filled in your area and is trying to help, 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I thought fentanyl patches were worhless, They didn't even smile at the pain, I have some in the drawer LOL Just quit taking them. Went back to half a perc and MMWash
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 2009 Posts: 104 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | By these posts, it appears that different things work for different people...as with many things, I guess.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: Apr 2009 Posts: 10 Member | Member Joined: Apr 2009 Posts: 10 |
dx 04/09 BOT Stage 4b, scc, met to leison 6th cervical spine, May 15th, 2009, 12 rounds rt to spine. no relief for pain, top of back and right arm. started 38 rounds of rt and Carboplatin and Erbitux June 2 once a week at least while receiving RT, RT daily. Port and peg.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | I was shocked at the fentanyl comment as well. It's much stronger then morphine on a per mg basis and in a lot of cases stronger then most street heroin. It's not a drug to play with as it caused several deaths a few years ago when given to heroin addicts as heroin...to put it in perspective. I've been on it for over a year now and finally starting to dial down from it but for me it worked when nothing else did (hydro, oxy, morphine, you name it they had me on it). I agree with the others when they say it's the gold standard.
Jim...you're just a different guy...the man of steel! That's why it didn't work for you. I love ya big guy.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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