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#98728 07-04-2009 02:55 AM
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WendyG Offline OP
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Hi everyone. I'm after some advise on fentanyl. My partner was subscribed this but as yet hasn't taken it. Up until recently I couldn't even get him to take panadol although now he has progressed to panadiene. Tonight though it's just not working and we think it's time he went on to the fentanyl. I just want to know if anyone has any advise on this drug or if anyone had any side effects I should watch for. The chemist gave me a big print out on this drug and the possible side effects are very scary. Also it says they can take up to 24 hours to work. Did anyone find any pain relief straight away as we need it now, not in 24 hours. He was prescribed the 12mg patch.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
WendyG #98731 07-04-2009 04:47 AM
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Hi Wendy. The fentanyl patch will take up to 24 hours to work. The dosage is very low. If necessary it will gradually be increase. Several very important things abotu the patch. Do not rip or tear it. Makes sure when you throw it away its in a trash can where a pet or child wouldnt get to it. Avoid very hot showers or baths as it will cause this to release too much medication. Change the patch every 72 hours.

Ask the doc for soemthing for breakthru pain. There may be times when he is in pain that the patch wont be strong enough or like now with your post, waiting for the patch to kick in.

He will feel better once the patch starts working.


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
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Your doctor should also prescribe a short term, fast acting, narcotic such as morphine for breakthrough pain. That will also help while his therapeutic dose is built up with the patch. After the patches are started enough narcotic will be left in the blood that the pain relief will be continuous when changing patches. Fentanyl is very effective and one of the best long term pain meds out there.

There is also a transdermal morphine patch but Fentanyl is stronger.

Some doctors recommend changing the patches every 48 hours but, as Christine said, typically it is every 72 hours. Clean the skin with 99% alcohol before applying the patch - make sure that the skin is clean and dry as well.

Use caution showering with a patch on - try not to hit it directly with hot water. When applying a patch, never use the same spot and shave the hair first where it is going to be placed. The best place to place them are the shoulders or biceps.

Fentanyl is a very powerful and effective drug but can be dangerous if not used correctly. Read carefully the instructions for use.

12 mcg is a low dose, I didn't even know that they made a 12 mcg patch. Typically, in the US, patients are started on a 25 mcg patch and then the dose can be increased in 25 mcg increments until as much as 500 mcg, although that high a dose rate in not common for H&N cancer. The highest dose rate I have seen here is 250 mcg but , more typically 150-175 mcg (at the peak of pain). Never increase the dose rate unless instructed by your doctor.

Also NEVER stop Fentanyl abruptly! Work out a phase out plan with your doctor when it's time to quit.

Some instructions indicate flushing used patches down the toilet and also wearing gloves if the caregiver is applying them.

There has been multiple FDA warnings about Fentanyl and perhaps the doctors are being more conservative with their dose rates these days.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #98767 07-04-2009 04:20 PM
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I always took a shower with it on, but it was ineffective and made no difference, The last one was on for a week because I for about it. The rest are in my drawer in the box. But of course you only get 5 at a time.


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
WendyG #98790 07-05-2009 06:59 AM
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short answer is that the patch will NOT provide any relief until at least 24 hours. 12mcg hardly seems worth it. The insert and warnings all seemed unnecessarily scary to me as this is my second go around and never a problem. the instructions do make it clear that you can shower etc, just don't sit in a sauna or steambath as that increases the rate it is released. I just put on a patch every 48 hours and then toss the old one in the trash,
Once the patch is working, it is a relief not to have to keep timing the pills etc, Finally, be sure to have oxycodone or at least percocet on hand for breakthrough pain. Obviously from EZJim's postings, the patches do not work for everyone but I would ask for at least 25 mcg to start off. good luck


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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It is important to understand how the transdermal drug delivery system works. The skin contact side of the patch has a membrane that has very tiny, microscopic, holes in it that allow a metered amount of the narcotic to pass through it and through the skin. Heating the patch or applying pressure to the top of it can increase the amount of narcotic transferred through the skin. Hot water can also compromise the adhesive and cause less drugs to be transferred after the shower or whatever.

The reason why I mention the instructions are that, several years ago, a well meaning member suggested cutting a patch in half as part of the tapering off process. This could release all of the contents at once and cause an instantaneous overdose.
As i have previously stated Fentanyl is safe and effective if used as directed. Misused, it can kill you.

The patches must be applied meticulously to dry, hairless skin to work effectively. The skin should be cleaned with alcohol and allowed to dry before application. Be careful not to touch the adhesive side of the patch - the body oil in your fingers can compromise the adhesion and transference.

The narcotic inside should be substantially depleted at the end of 72 hours, so leaving it on longer isn't going to improve its effectiveness.

I agree that the instructions can be confusing and daunting, especially since the FDA requirement is that EVERY adverse effect be listed - proven or not! Your pharmacist should be able to tell you the real risks and appropriate instructions for use.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #98900 07-06-2009 08:04 PM
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WendyG Offline OP
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Boy I find these drugs a bit scary but you have all helped. But don't worry we will be careful. He's on oxycodone at the moment for the dental work he had yesterday so we took the opportunity, after checking with nurses that they mix ok, to start him on the fentanyl patches today. Tiny little buggers aren't they. I think the doctor gave him a very low dose as Steve seems to have a higher pain threshold than other people plus he wasn't even taking panadol at the time the doc gave us the script. So our doc thought start him with the lowest dose and see how we go. So for the next 24 hours I will be watching him closely for any side effects. Probably give him a complex because I will be watching him constantly from the corner of my eye.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
WendyG #98905 07-06-2009 09:55 PM
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Wendy,

You should still find this drug scary, as somebody struggling to ween off of this drug now, I'll tell you it's no picnic and nothing to take lightly. It is as described the best form of long term pain management in my humble opinion however this sh!t is deadly, 100x stronger then heroin and everybit as addictive.

Of course as said previously, 12mcg/hr is a small dose relatively speaking, however the dose has nothing to do with becoming physically dependant on the drug...use it as needed just know that the longer being on the drug, the harder it is coming off of it.

I was pushing 200mcg/hr at one point during post op w/break through oxy at 60mg every 4 hours...I don't remember the pain, just the need for more pain meds. Right now my physician and I are weening me off of the patch system slowly and I'm down to 75mcg/hr now and feeling horrible, having to up my dose of oxy to function and even then I have my sick days where I refuse to take oxy and can only lay in bed. I guess what I'm trying to say is be careful with that drug, looking back I don't know if I'd use it knowing I'd have such a hard time coming off of it...but then again there is no other form of pain management that compares to it...so it is what it is.

There is no point in being in pain and it hinders the healing process, just know that you have to come off of that stuff and for some, like me, it's no picnic.

Be well,

Eric


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.
EricS #98926 07-07-2009 05:48 AM
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I guess I was fortunate because either the pain meds didn't work, in fact causing constant nausea or my docs didn't keep trying until they found some that did without the nausea but I eventually stopped all my pain meds and just dealt with the pain. Looking back I don't remember the pain part but I will never forget dealing with that constant nausea which did ease up after I went off the pain meds.


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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On the other hand, Bill was able to wean off of of all the pain meds (fentanyl, liquid morphine, and hydrocodone) within two weeks of end of treatment. He had about three restless nights...had trouble going to sleep but after that he was fine.

Just shows how everyone reacts diffently to the assaults of this disease.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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WendyG Offline OP
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Well we've decided to try it and I can say from my point of view it is worth it. He is more relaxed and doesn't look to be in near as much pain as before. We've actually had a couple of nice days together since we started the patch. But don't worry, we didn't take it lightly and will be very careful with it. Currently he's on the lowest dose possible and is going well with it.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
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