pain advice - Fentanyl patch

LeeinLondon

Hello all;

Over the last few weeks I've been having more and more severe pain, typically in the area of my esophagus. It's a hard, burning kind of pain at about pain level 6. I was recently changed from oxycontin to a fentanyl patch (25 micrograms) because I was choking up the oxy tablets. Meeting with palliative care team tomorrow and they will likely increase it to 50 micrograms, but my worry is that my break-thru pain med (oxymorph codone) barely touches it, and the "down" I get from the breakthru is really unpleasant, so I don't like taking breakthru 3-4 times a day, so will 50 micrograms be enough? So far the fentanyl doesnt seem to have any side effects that I've noticed.

I'd like to hear your feedback about dosages, but more importantly, how do you deal with the pain psychologically? At times it truly feels like torture, and every day it chips away at you a little more. I'm finding it increasingly tough to stay positive, when it seems that every day all I have to look forward to is spending the day in pain. You just wanna scream.

- Lee

sangora

Oxycodone liquid
Lee, you may have already tried this, but my doc has me on Oxycodne liquid. I just put it down the tube and because it is liq. It kicks in fast. I may be miss remembering, but don't you have a j-tube? My doc tells me that in this day and age, pain control can be accomplished. Sam

LilChemoSmoker

Pain relief...
Lee,

Eric tried the fentanyl patch a couple of months ago. He received NO relief from it. It is my understanding that it depends on the person as to how much and if it is effective. As for dealing with the pain psychologically, Eric was placed on Xanax early on as a way to deal with anxiety. Quite by mistake we have found that it does wonders for 'nerve' pain and the psychological spectrum of pain. Without the Xanax, the pain in his back and upper chest is very present and also keeps him at about a 5-6. Who would have thought that an anti-anxiety med could do such wonders for the nerves themselves.

Best wishes to you and I will pray that you can achieve 0-1 soon!
-Michelle

Unknown

This comment has been removed by the Moderator

LeeinLondon

sangora said:

Oxycodone liquid
Lee, you may have already tried this, but my doc has me on Oxycodne liquid. I just put it down the tube and because it is liq. It kicks in fast. I may be miss remembering, but don't you have a j-tube? My doc tells me that in this day and age, pain control can be accomplished. Sam

thanks sam
thanks sam but im already using that for breakthru - I just squirt 1-3 mL into my tube, and I can feel it kick in in about 10 minutes. Love it!

mruble

Fentanyl
Fentanyl worked well for Chad. At his highest he was at 75 micrograms and many people are on higher doses. Once they had the proper dosing, he rarely had break-thru pain. Don't hesitate to have them keep bumping you up (as long as you aren't having bad side effects). The only problem Chad had with it was constipation but that was easily managed.

This may sound funny but the other thing Chad did for pain management was meditation. He swears by it and spends time each day in meditation. If you are interested, I'd be happy to share more information.

Mary

chemosmoker

PAIN is NOT acceptable. Period.
Lee,
If I DON'T take enough pain medication to almost KILL my pain (which at this point is STILL completely possible, and should be for you, too, as your dosages are SO low comparatively still) I am MISERABLE.

It makes eating, sleeping, wanting to even be here, travel, do anything at all, just not worth it. I thought so many bad things, and it was the PAIN thinking for me! I could NOT see through it. I could NOT see the forest for the trees.

I have had a BAD last three days. My pain was staying at a 5-6 at best, and at times was a 9-10. My life felt over. Trips we had planned for the upcoming weeks seems not possible, I knew I wouldn't make it. I felt like I was progressing with my cancer, not just in pain. I was convinced mentally that the end was nearing!
Little did I know it was ALL just the pain!

I had run out of Xanax, and didn't worry too much about it as I knew hospice would be out Wednesday and I would get it filled by weeks end. They help the nerve and muscle pain, in the shoulders and lower back, and especially the esophagus/stomach and intestinal areas I don't know WHY my Oxycodone and Oxycontin do such a great job of killing the "PAIN" pains, but can't touch the nerve and muscle pain.

What I DIDN'T realize is that I was withdrawing from the Xanax, as I had been taking it for a few months non-stop as prescribed. Due to a mix-up with hospice I was out for the first time in a while.

Well, yesterday the nurse came out, and when she found out I had been out since Monday, she hopped to it and was moving FAST and serious! More serious that I was taking it! She emphasized how important it was for the pain and to NOT run out.

Long story short, by last night Michelle had gone and picked up the fast refill they called in, I took my FULL dose of both of my oxy's and the Xanax, and OMG...I was at a ZERO for a few hours! First time in over a WEEK I didn't feel hopeless! It even kept me from posting and talking on the phone! I am not at ZERO a lot, but a 2 or 3 is great too compared to how you are feeling and how I was feeling!!!

I think your doses are WAY WAY WAY too low. I STARTED on a 75McG patch and that was nothing. I had TWO on at once in the end and then had to just go back to oxycodone as they just did not get to the pain like REAL pain pills. I realize swallowing is a real issue for you, but I have read that you can CRUSH up the OXY pills and put them into the tube. I would ask about that!

I know everyone is different, and I know some are immune to morphine and I may be immune to fyntanyl, but I think if you can swallow with the stretch now (I am unsure about pills-just Pepsi and juice!) I would want to see you try the Oxycontin Extended Release, at like 60-80 MG every 8 hours or so. Maybe 12 hour intervals but I was a "fast metabolizer" they said, so I had to have it more often THIS is a very person to person thing and MUST be decided by a doctor, NOT ME!

I am NOT a doctor, but I KNOW that when they FINALLY got me at a DECENT level of medication, I was pain free, not "high" or euphoric or sleepy like Morphine (Morphine was like a sleeping pill to me!!) and able to go back to LIVING. And I mean just like before the DX!
I feel normal today, and it is a blessing from God! And from the Pharmacy too! LOL

There are ways to manage your pain, and you MUST get a plan and dose that actually works for you, and that for me involved increasing and decreasing and changing and trying and trying an hour at a time and then a day at a time, until we/you got/get to this and had something in place that really works. YOU DESERVE NO LESS!!!
Just going home with a box of five patches and a bottle of oxy liquid and then being "stuck" with that until the next fight, where you seem to be now, is NOT a pain management approach in my opinion.

You need to get this team or your nurse or your pain people to sit down with you and try to find a dosage that is strong enough.

With all that you have been though, with Chemo, and the J-Tube and now the stint coming up and all, there is NO WAY I am in MORE pain than you, but you seem to be taking such a SMALL does of pain medication still.

I KNOW everyone has a very different tolerance. If Michelle took ONE of my immediate release pills she would pass out for a week. I am not saying try anything on your own or take a bunch, or anything of the sort. I just feel you are being TEASED with minimal doses of pain meds and you are pain for it in misery, suffering and pain. THAT makes me very mad!

That's my opinion. An observation from the last few months of reading and watching you.
I love you man. I want you to have relief, NOW.

Keep me posted. I will post more if I think of it.
-Eric

jim2011

pain
I read alot of good pain advice from you guys and I am going to print it out and save it for the future. Thanks.
Have you tried a heating pad. The one I have has a high-medium-low setting. I find the medium setting to be the best and I have used it for side, back and front pain. It kind of forces you to relax while its on you and warming up or you are laying on it. (either works). While you are trying to relax the break-thru meds are getting time to work and also try to occupy your mind by watching CNN or something.

Joel C

mruble said:

Fentanyl
Fentanyl worked well for Chad. At his highest he was at 75 micrograms and many people are on higher doses. Once they had the proper dosing, he rarely had break-thru pain. Don't hesitate to have them keep bumping you up (as long as you aren't having bad side effects). The only problem Chad had with it was constipation but that was easily managed.

This may sound funny but the other thing Chad did for pain management was meditation. He swears by it and spends time each day in meditation. If you are interested, I'd be happy to share more information.

Mary

Hello Lee,
I was on a fentanyl when I was in the hospital recovering from my MIE. I had an IV drip and a pain pump. I’m not sure what the dose was but I’m sure it was up there when I was hitting the pump every hour or so. Fentanyl definitely did a good job managing my pain but after a few days I ended up having terrible nightmares. It got to the point that I had to ask to get off the fentanyl. From there I went to Percocet, that was a big reduction in pain control but at least the nightmares were gone.

Good luck,
Joel

hobbssy

jim2011 said:

pain
I read alot of good pain advice from you guys and I am going to print it out and save it for the future. Thanks.
Have you tried a heating pad. The one I have has a high-medium-low setting. I find the medium setting to be the best and I have used it for side, back and front pain. It kind of forces you to relax while its on you and warming up or you are laying on it. (either works). While you are trying to relax the break-thru meds are getting time to work and also try to occupy your mind by watching CNN or something.

fentanyl
Hi Lee: Jim started on the 25 mcg patch of fentanyl, but was taking so much dilaudid for break-through that hospice upped the patch to 50 mcg. He continued taking break-through and the hospice Dr. would up the patch after 2-3 days until he reached 125 mcg and that's when the break-through doses decreased to 2-3 times per day. Jim also found ativan helped with his pain. He took 1 mg tabs 2-3 times a day. Also when swallowing became an issue he was started on dilaudid injectable. He had a lock in the sub cutaneous tissue of his arm, the visiting nurse would draw up several syringes of dilaudid every day and I gave them to him whenever needed. There is no reason for you to suffer any pain and I hope they get this under control quickly. There is always someone on call at hospice and they can advise over the phone. (I am in Ontario too and I called them several times and they were most helpful) Hope this helps, Patti

ritawaite13

hobbssy said:

fentanyl
Hi Lee: Jim started on the 25 mcg patch of fentanyl, but was taking so much dilaudid for break-through that hospice upped the patch to 50 mcg. He continued taking break-through and the hospice Dr. would up the patch after 2-3 days until he reached 125 mcg and that's when the break-through doses decreased to 2-3 times per day. Jim also found ativan helped with his pain. He took 1 mg tabs 2-3 times a day. Also when swallowing became an issue he was started on dilaudid injectable. He had a lock in the sub cutaneous tissue of his arm, the visiting nurse would draw up several syringes of dilaudid every day and I gave them to him whenever needed. There is no reason for you to suffer any pain and I hope they get this under control quickly. There is always someone on call at hospice and they can advise over the phone. (I am in Ontario too and I called them several times and they were most helpful) Hope this helps, Patti

Hi Lee
Just one quick comment here on pain management. My husband's doctor promised him he would not have pain that couldn't be controlled. There are lots of drug options out there. I guess the trick is finding what works for you. I hope you find your magic medicine soon!
Rita

LeeinLondon

Hi
Thanks everyone! We're meeting with palliative team today and they will likely switch me to 50mg of fentanyl. Noon yesterday I installed 2-25 mg patches and it hasn't seemed to make a bit of difference, but I'm hesitant to push for 75 after reading about the overdose risk.

Eric u mentioned your shoulders- I have had hot searing pain in my left arm/shoulder that seems to lock my arm in place if I'm immobile for a while then disappears one I get moving- I had presumed it was a simple muscle pull... How about you? Ive had a stiff sore neck for months.

Had a relatively great couple of days.. Because its been cool outside! Heat was walkways the trigger for my sweats/chills, so I'm thankful for a few rainy days!

Endocrinologist Monday, pain med update today, feeling quite positive, thank the Gods for a good day! We've also ordered an adjustable hospital bed in anticipation of the stent installation. Go big or go home

adube

chemosmoker said:

PAIN is NOT acceptable. Period.
Lee,
If I DON'T take enough pain medication to almost KILL my pain (which at this point is STILL completely possible, and should be for you, too, as your dosages are SO low comparatively still) I am MISERABLE.

It makes eating, sleeping, wanting to even be here, travel, do anything at all, just not worth it. I thought so many bad things, and it was the PAIN thinking for me! I could NOT see through it. I could NOT see the forest for the trees.

I have had a BAD last three days. My pain was staying at a 5-6 at best, and at times was a 9-10. My life felt over. Trips we had planned for the upcoming weeks seems not possible, I knew I wouldn't make it. I felt like I was progressing with my cancer, not just in pain. I was convinced mentally that the end was nearing!
Little did I know it was ALL just the pain!

I had run out of Xanax, and didn't worry too much about it as I knew hospice would be out Wednesday and I would get it filled by weeks end. They help the nerve and muscle pain, in the shoulders and lower back, and especially the esophagus/stomach and intestinal areas I don't know WHY my Oxycodone and Oxycontin do such a great job of killing the "PAIN" pains, but can't touch the nerve and muscle pain.

What I DIDN'T realize is that I was withdrawing from the Xanax, as I had been taking it for a few months non-stop as prescribed. Due to a mix-up with hospice I was out for the first time in a while.

Well, yesterday the nurse came out, and when she found out I had been out since Monday, she hopped to it and was moving FAST and serious! More serious that I was taking it! She emphasized how important it was for the pain and to NOT run out.

Long story short, by last night Michelle had gone and picked up the fast refill they called in, I took my FULL dose of both of my oxy's and the Xanax, and OMG...I was at a ZERO for a few hours! First time in over a WEEK I didn't feel hopeless! It even kept me from posting and talking on the phone! I am not at ZERO a lot, but a 2 or 3 is great too compared to how you are feeling and how I was feeling!!!

I think your doses are WAY WAY WAY too low. I STARTED on a 75McG patch and that was nothing. I had TWO on at once in the end and then had to just go back to oxycodone as they just did not get to the pain like REAL pain pills. I realize swallowing is a real issue for you, but I have read that you can CRUSH up the OXY pills and put them into the tube. I would ask about that!

I know everyone is different, and I know some are immune to morphine and I may be immune to fyntanyl, but I think if you can swallow with the stretch now (I am unsure about pills-just Pepsi and juice!) I would want to see you try the Oxycontin Extended Release, at like 60-80 MG every 8 hours or so. Maybe 12 hour intervals but I was a "fast metabolizer" they said, so I had to have it more often THIS is a very person to person thing and MUST be decided by a doctor, NOT ME!

I am NOT a doctor, but I KNOW that when they FINALLY got me at a DECENT level of medication, I was pain free, not "high" or euphoric or sleepy like Morphine (Morphine was like a sleeping pill to me!!) and able to go back to LIVING. And I mean just like before the DX!
I feel normal today, and it is a blessing from God! And from the Pharmacy too! LOL

There are ways to manage your pain, and you MUST get a plan and dose that actually works for you, and that for me involved increasing and decreasing and changing and trying and trying an hour at a time and then a day at a time, until we/you got/get to this and had something in place that really works. YOU DESERVE NO LESS!!!
Just going home with a box of five patches and a bottle of oxy liquid and then being "stuck" with that until the next fight, where you seem to be now, is NOT a pain management approach in my opinion.

You need to get this team or your nurse or your pain people to sit down with you and try to find a dosage that is strong enough.

With all that you have been though, with Chemo, and the J-Tube and now the stint coming up and all, there is NO WAY I am in MORE pain than you, but you seem to be taking such a SMALL does of pain medication still.

I KNOW everyone has a very different tolerance. If Michelle took ONE of my immediate release pills she would pass out for a week. I am not saying try anything on your own or take a bunch, or anything of the sort. I just feel you are being TEASED with minimal doses of pain meds and you are pain for it in misery, suffering and pain. THAT makes me very mad!

That's my opinion. An observation from the last few months of reading and watching you.
I love you man. I want you to have relief, NOW.

Keep me posted. I will post more if I think of it.
-Eric

Totally onboard
I'm so on board with this comment. I think you need to start putting your foot down and demanding a more effective pain plan. There's no reason you need to be suffering. Eff that.

-Alissa

(daughter of Mike, IV)