| Joined: Oct 2012 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2012 Posts: 33 | I am 7 days into radiation therapy and have had 2 chemo treatments. I am developing sores on the surgery site of my tongue which I took tylenol for but it's not cutting it. I have Vicodin, Percocet and Codeine in my arsenal. Which one should I use? I know this is going to get worse. What should I ask my doctor to prescribe me? I've been using the rinses every 2 hours.
10/2/12 Surgery Dx Stage II SCC RLT 11/12/12 Further tongue resec and SND. 3 of 22 lymph + SCC Stage IVa 11/22/12 Hospitalized for infection incision at neck 12/5/13 PET scan tumor at BOT 12/26/12-2/27/13 RT and Cisplatin 4/1/13-5/17/13 3 rounds of Cisplatin, Taxotere and 5-FU 7/19/13 Pet Scan possible recurrence 8/23/13 2nd op at MSKCC, CT Scan 8/31/13 MRI. Both show sizeable mass 9/11/13 CT-guided needle BX + SCC 10/1/13 Erbitux, Cisplatin and Taxotere 2/14/14 Passed away
| | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | Katie, We found active pain management to be one of the most important keys to getting my husband through treatment. We found that when he got at all behind the pain curve, it affected everything, including eating. If you pain is above a 3/4 level, ask the doc to bump up your pain meds. There are many on this board more qualified than I to advise on specific meds, but I would think Oxycodone/Oxycontine would be the next step, and if/once that no longer works, Fentanyl patches.
Re: mouth sores, I assume the rinse you are talking about is the pink/magic mouthwash. For what it's worth, my husband was just using the pink mouthwash early on, started to get mouth sores, and got aggressive with his mouthwash routine. He started with a 3:1 (water to hydrogen peroxide) solution, followed by pink mouthwash, then Mugard (a thick coating, acted as a preventative), and used Caphasol (artificial salivia) throughout the day. As well, he used a cpap chin strap to keep his mouth closed and moist while he slept. After he started using this combination, his mouth sores were greatly reduced.
Hope this helps in some way, Ana
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | They usually ask what your pain level is from 1-10 or use the happy face sheet, and use a pain ladder in three steps to treat the pain accordingly. Use what the doctor prescribed to use, and if not working, tell them.
1. Pain..NSAIDS, ancetphotomine, antiinflmatory, non opioids... 2. Mild pain..weak opioids like Percocet, tramadol, codeine... 3. Moderate to severe pain...morphine, methadone, oxycodene, Fentynal....
Some meds in the ladders are cross used up the ladder, and other meds like antidepressants, antiseizure, tranquilizer may also be used. With strong opioids constipation is usually a side effect, so OTC meds are taken to help. There are break through pain meds too, like Fetynal lozenges. Also, there is not much concern with addiction with strong opioids when used for pain in the cancer setting, and doctors use a descending dosage to withdraw when stopping treatment. Sometimes they refer you to see a pain management doctor, and see mine next week.
Salted warm water, if it doesn't burn, with baking soda is a good general rinse, and magic mouthwash is a combination of meds like nyststin, lidocaine, and many other rinses.
Pain meds are to relieve pain, but do not treat the ulcers, which can be a bacterial, fungal or a viral infection, and each may need the appropriate medications to properly treat like antibiotics, anifungal or antiviral medications.
Hope this helps.
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
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Katie, I went right to Oxycodone and finally a fentanyl patch in the last few weeks. You might try escalating as Paul suggests (although to the best of my knowledge Percocet is just a combo of Oxy and acetominphen and is far stronger than Tramadol).
For mouth sores, and I had plenty, I swished viscous lidocaine around for a full 10 minutes before I tried to eat, that is drink, anything. I also used Caphosol and another saliva inducer whose name escapes me. But baking soda rinses are also very helpful.
Keep us informed about how it goes. You're doing great!
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Oct 2012 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2012 Posts: 33 | Every pain med has made my stomach turn. I'm only using the feeding tube and drinking a couple of Ensure shakes and some water. That's about all I can tolerate. No pain med has made the throat feel good so I'm not even bothering. It only hurts when I swallow, which is that awful constricted feeling more so than pain. Seriously, the nausea that accompanies Percocet, Vicodin, or Morphine is just not worth the little to no relief I get from the pain killer. I am diligently swishing with the rinse and I have a rinse for thrush.
I know I'm not the first to say this and I certainly will not be the last but this is pretty terrible. I'm known to curse so just know that there are many other words I'm leaving out from this post.
10/2/12 Surgery Dx Stage II SCC RLT 11/12/12 Further tongue resec and SND. 3 of 22 lymph + SCC Stage IVa 11/22/12 Hospitalized for infection incision at neck 12/5/13 PET scan tumor at BOT 12/26/12-2/27/13 RT and Cisplatin 4/1/13-5/17/13 3 rounds of Cisplatin, Taxotere and 5-FU 7/19/13 Pet Scan possible recurrence 8/23/13 2nd op at MSKCC, CT Scan 8/31/13 MRI. Both show sizeable mass 9/11/13 CT-guided needle BX + SCC 10/1/13 Erbitux, Cisplatin and Taxotere 2/14/14 Passed away
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Katie - curse on, we have all been there. We've all been there and done our share.
Yeah I know about the effects of pain meds on the stomach. There are only some that I can tolerate and I'm sorry they all do a number on you. Have you tried Dilaudid? Just a suggestion. But of course the Fentanyl patch might be an answer as you just wear it on the skin. I have no idea how it might affect the stomach though, could be worthwhile to ask your doc.
I too found that nothing helped the sores in my throat. This is something we just have to tough out. But it will get better.
Finally: Yes, this is pretty terrible. But you'll get through it. Keep posting!
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Sorry for your pain. As mentioned, try to see a pain or palliative care specialist. If you have thrush, you might need an antifungal prescription medication to treat it, which can be painful, go to the esophagus, stomach, elsewhere, if not treated properly or a have a co-infection requiring an antibiotic or antiviral med too. Diflucan and clotromozole, is better than some nyststin rinses, and clotromozole dissolvable tablets. Change the toothbrushes often to avoid reinfections.
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
| | | | 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 | There are many pain meds to try so dont rule them all out just yet. There are liquid ones that can go right in the tube. Liquid lortab or oxycodone may work for breakthru pain. Many of us have used the fentanyl patch successfully. Just follow the directions exactly and never bend, fold, rip or cut the patch. Its very simple to use, changing it every 3 days. If your pain increases ask to try one of these three medications, one of them may work for you.
Treatment stinks!!!! We have been there and know how horrible it can be. 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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I use the liquid oxycodone down my tube. My magic mouthwash is 1/3 viscus lidocane that can be swollowed. I'll do the max liquid oxy when the throat is bad for breakthrough pain followed by a swig of magic mouth wash which I try and let hang in the throat as long as I can. I also had the patch at one time (that helped some). Moraphine made me ill so I dropped that one.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Severe pain is never easy to manage and I am sure your oncology docs can refer you to a pain management team. In our hospital our pain management team mucked about with Alex's meds until everyone was happy.
For us it was Fentanyl patches (don't remember the dose but it was relatively high), Oxycodone long acting and oxycodone short acting. He took the first two come hell or high water and the oxycodone short acting if he had breakthrough pain. This took him all the way through radiation and few weeks beyond.
The one piece of advice I would give is to take your meds even if you think you will be ok. Once the pain starts it is so much more difficult to get it back under control. My macho Alex took quite a while to learn this.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | There are three types of pain medication you should have at your disposal:
- Long term pain relief such as MS Contin or Fentanyl patches which lasts up to 12 hours.
- Breakthrough pain medication such as Oxycodone, Tylenol etc. which you take every 4-6 hours accordingly
- Short lasting pain medication such as Lignocaine, Cocaine mouthwash etc. which provides short term pain relief which is used when you need to eat etc.
Making sure you keep on top of the above medication is absolutely critical as more pain you have equates to more of the body using nutrition & energy to fight the toxins released into the bloodstream caused by the pain which ultimately means that healing will be slower and more difficult.
On the flip side, you want to make sure you are only taking what is required without going overboard as you must remember a lot of the pain medication is opiate based meaning that you will have to cope with the addiction & withdrawal symptoms once you start to get better.
What I used to do with Jen was ask her every 4 hours what her pain level was between 1-10 and tried to keep it between a 3-4 through the medication.
Hope that helps.
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
| | | | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2012 Posts: 51 | Paul is on his 32 radiation treatment. He started with Vicodin, then added the Fentanyl patch beginning with 25. As the pain increased, he would increase the patch by 25. This usually increased every 72 hours when the patch had to be changed. As the pain increased, he also went to two Vicodin then the next strength Vicodin. After the Vicodin wasn't effective he changed to dilaudid (morphine) beginning with 2 mg. He is now on 4 mg with Fentanyl at 125. I guess my point is that you really have to mix and match until you find the right combo for you.
In my own pain experience and in helping Paul, we've found it's best to take your meds even if you think they won't be needed. Once the pain begins, it's much harder to get under control.
Diane-wife to Paul, age 55 DX 9/17/12 HPV/SCC/BOT Stage 4a Non-smoker/casual drinker Otherwise healthy 9/24/12 Cisplatin, Taxotere,5-FU - 3x 12/3/12 Rad x 35/Carboplatin x 3 1/15/13 DVT upper thigh Passed away 1/23/13
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Jay,
Did you folks try any 420 options? I am looking at the vaporizer options as an alternate to going with the heavy prescribed meds.
Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Katie B
If you only have pain when you swallow, then the "magic mouthwash" should help. It usually has lidocaine in it and you just swish it and spit it out and it numbs the throat. Personally, I could not handle it as it made me more nauseous but it works for a lot of people Charm 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
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