Pain is tolerable but, Fentanyl?

LiseA

I feel as if I could get by with extra strength Tylenol,  doc gave me Fentanyl patch, with no warnings. Was reading the old thread about do's and donts, and I'm scared to use it.  What are the usual side effects?  Will I walk around all groggy and out of it? I have several appts tomorrow as well as two "tanning sessions" as I call them, and would like to be coherent. 

wmc

It is okay Lisa.

It is ok to use Fentanyl, and it is stronger than morphine. There is a reason your doctor put you on it to control the pain you will have. 

My Son was in a very bad truck accident where someone did not tie down a 5 ton forklift and it bounced off the truck and hit him almost head on.It sliced hid door off and out he went bouncing down the highway at 55 miles an hour and slid 90 feet, per the CHP. They almost lost him there and again at the hospital. Shattered spleen, ruptured kidney and liver. Removed the spleen and sewed everything else. Broken hip and 5 breaks in his back. Yes, he is lucky to be alive. My point is, he has been on a fentanyl patch since 2007, and will be on it for life as they can't fix the breaks. He worked everyday, and some long hours up to 16+. You would never know he was on that. All it did was lower the pain so he could function. Now he did have a head injury and lost some memory, but he is just as sharp as always. He never had to study in school and did all his homework before school was out. Honor list every year and a 3.4gpa without trying. Without it, he can't get out of bed from the pain. With it, he still has pain, but he can tolerate it. No doctor is going to give you too much that you stay high and can't function. You most likely will never have any of the side effects, but they do have to say them. Just be very careful when touching them. He uses a large waterproof band-aid to cover them so it stays on better. You won't be on it all that long. The warnings are for people like me. Demerol increases pain for me.

Bill

Ladylacy

Fentanyl

The doctors wanted to use Fentanyl on my husband but due to the fact that he was so underweight they decided against it.  He used loratab and then when that wasn't strong enough he used oxy but not the time release because he was on a feeding tube and then they changed him to morphine which he didn't like at first but then when he found out it really helped him, he was okay. 

Ask the doctor why Fentanyl if you are uncomfortable using it and if you still don't want to use it, ask for another pain medication.  Don't use what you are unsure of -- ask questions.  We had read and heard alot about Fentanyl and weren't sure whether or not to use it if my husband could have used it.  He really didn't want to use any pain medication -- afraid he would get addicted to it.  But the doctors told him no he wouldn't get addicted if his body really needed it and it would help him heal faster.  He always lied about his pain level, and I would have to speak up and say he was in more pain than he said because I could see it on his face.

Sharon

phrannie51

Lise....if you can do it with

Tylonal, then do that and save the big stuff for later when Tylonal won't cut it.  I'm hearing on the Facebook group, more and more about using gabapetin in the beginning.  Rottiesmom's Dr. prescribed it for her....and there's a number of folks on FB who are using it. Ask your Dr. for it, and say you want to hold off on the Fentinyl until it's absolutely necessary. 

One thing I learned after being in this group for a while was asking our Drs. for things, and knowing it was ok to do it.  They don't think of everything, so my job was to help myself by helping them.  Never in a million years did I think I'd EVER ask a Dr...."what about this?"...."What about that?"...I got really good at it .  My Dr. never brought up Magic Mouthwash till I asked him (people here were getting it, why not me??)....same with liquid Oxy...I was crushing and soaking pills till I brought it up.  Bingo!  My Doc was like "your wish is my command". 

p

 

SusanUES

I agee with saving the patch for later

My oncologist was prescribing it for several people in my group but told me I was doing fine with minimum meds; I agreed and saved liquid Oxy for my post rads healing...never did do the patch. If you are feeling you can manage the pain, go minimal. Mailed you a package yesterday...NY to TX!

MrsBD

Fentanyl

If you can manage with Tylenol, that is wonderful. Before cancer, I only took a Tylenol once a year or so, but ended up taking liquid Hydrocodone and using the Fentanyl patches when the pain got too bad. Everyone tells me I didn't act goofy, but I was tired. Abuse of Fentanyl is the problem. If you find you need it, follow your doctor's directions and you should be fine.

LiseA

Susan, you are womderful.

Susan, you are womderful. Thank you!

I'll hold off on the Fentanyl.  I find that acupuncture really has helped with nausea and pain as well as dry mouth. My symptoms were worse in the beginning before my acupuncture sessions really kicked in. I'm still eating solids!  My mouth is a mess but I use the swish and swallow or the MuGuard and am able to eat slowly. Today I had two treatments. Was exhausted and slept a bit.  The new foam bandaging helps cool the burns and I'm not getting anything on them to cause irritations.  I can't believe that I have 3 days and 4 treatments to go!  Monday is a dou me also.  You all did say that it goes by fast but in the middle of it, seems like an eternity.  I

honestly learnt more here than from any doctor. They don't seem to give much info. Has anyone gotten their medical records from a big cancer hospital?  Recommend I do that or not necessary?

 

slk2015

Pain relief

I was not allowed the Magic Mouthwash due to open sores on my mouth.  I was given fentanyl and it was useless—I had them pull the patch off.  I am allergic to demoral.  Dilaudid was the only thing that helped.  However, when I had an abcess form 11 days after the second glossectomy, I begged for the tylenol and could have cared less about the dilauded.  You can only take extra-strength tylenol every six hours according to the hospital and it always wore out before the six hours.  Whatever works.  None of the narcotics make me high.  Dilaudid makes me dizzy but that was all.  You just have to try, unfortunately.  It can be quite frustrating.

 

As for records, most of the hospitals now have patient portals that allow you to access records over the internet.  When I needed my records for a dentist, I was told to have her ask because they didn't charge if the doctor asked.  I guess it depends on what you might need the records for.

LiseA

Dilaudid was awful when they

Dilaudid was awful when they tried me on it in the hospital. I had a terrible reaction.  I have to be careful wirh Tylenol because of abnormal liver function since surgery, so holding off as much as I can.  Haven't used the Fentanyl yet. Amazingly, I'm not allergic to it. Was used at hospital. Surgery was March 28th and by April 9th I was drug free.  Dealt with pain pretty well after that, plus my jaw and neck was so numb I couldn't feel much anyway. 

I have been going for acupuncture twice per week since rads and upped it to 3 times per week now. Maybe that's why im

 able to tolerate the pain and discomfort. It's never over 4 on most days.  Records for non MDA docs when im

done. Thanks. 

LiseA

Gave in to Fentanyl tonight.

Gave in to Fentanyl tonight. It's the lowest dose, whatever that means. My neck was on fire, the pain went from 4 to an 8, and my mouth was even more painful than yesterday.  They weren't kidding when they said that we continue cooking. Here is hoping I get some sleep tonight.  I take lukewarm showers. Is that okay with the patch? Do I need to wrap arm with clingwrap? They did not give me any info about what not to do when using patch. 

donfoo

Be careful.

 I take lukewarm showers. Is that okay with the patch?

Please do not get your patch wet with anything warm until you check with the doctors. My understanding is the patch dosing changes when subjected to hot water such as a hot bath. It would be better to not let the patch come in contact until you double check.

tommyodavey

Use It

I'm with you in regards to using it.  You want to get control of the pain before it starts or you'll be chasing it trying to calm it down.  Same with any pain meds.  Doc says to take beforehand so the pain doesn't hit you too bad.  Please heed what donfoo said about the hot showers.  Just read the instructions and be careful.  Most folks who use opiod pain medication can function quite normally once the body adjusts to it.  It is only the opiate naive who feel woosy.  We all went through it the first time we took them, then our bodies aclimated to it and now no one can tell if we take any or not. (I'm not on any)

Better to be prepared than to suffer later.  You may or may not have withdrawal symptoms.  Each person is different in that regard.  With me, it wasn't a big deal, even being on them for months.

Tom

slk2015

LiseA said:

Dilaudid was awful when they

Dilaudid was awful when they tried me on it in the hospital. I had a terrible reaction.  I have to be careful wirh Tylenol because of abnormal liver function since surgery, so holding off as much as I can.  Haven't used the Fentanyl yet. Amazingly, I'm not allergic to it. Was used at hospital. Surgery was March 28th and by April 9th I was drug free.  Dealt with pain pretty well after that, plus my jaw and neck was so numb I couldn't feel much anyway. 

I have been going for acupuncture twice per week since rads and upped it to 3 times per week now. Maybe that's why im

 able to tolerate the pain and discomfort. It's never over 4 on most days.  Records for non MDA docs when im

done. Thanks. 

dilaudid

I had the same problem with demerol.  Very bad reaction, but luckily I was in the emergency room at the time.  It could have been worse.  I hear you on the allergies--seems like there are so many allergies out there and some of us get a bunch.  My dentist is amazed I'm not allergic to latex.

 

Barbaraek

LiseA said:

Gave in to Fentanyl tonight.

Gave in to Fentanyl tonight. It's the lowest dose, whatever that means. My neck was on fire, the pain went from 4 to an 8, and my mouth was even more painful than yesterday.  They weren't kidding when they said that we continue cooking. Here is hoping I get some sleep tonight.  I take lukewarm showers. Is that okay with the patch? Do I need to wrap arm with clingwrap? They did not give me any info about what not to do when using patch. 

Donfoo is right

No hot showers with Fentanyl. No one warned us about that and my husband nearly passed out in the shower when he was wearing a patch. My understanding is the heat is a vasodialtor so you can get a surge of the meds and it can slow your heart rate. If I recall correctly, he did not have to cover it in the shower.

Barbara