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#159754 01-06-2013 06:47 AM
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Katie B Offline OP
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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
Katie B #159757 01-06-2013 08:00 AM
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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
Katie B #159758 01-06-2013 08:04 AM
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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






Katie B #159777 01-06-2013 12:48 PM
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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 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
Katie B #159976 01-10-2013 06:18 PM
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Katie B Offline OP
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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
Katie B #159980 01-10-2013 07:01 PM
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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 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
Katie B #159988 01-10-2013 08:14 PM
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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






Katie B #159997 01-10-2013 09:44 PM
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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.


Christine
SCC 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 smile
Katie B #160000 01-11-2013 12:35 AM
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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
Katie B #160016 01-11-2013 04:03 AM
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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 smile
Still underweight
Katie B #160018 01-11-2013 05:27 AM
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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
Katie B #160382 01-16-2013 08:10 PM
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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
Jay Jeong #160445 01-17-2013 10:31 PM
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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
Jenkensmom #160457 01-18-2013 09:56 AM
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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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