pain advice - Fentanyl patch

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

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

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 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

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)