Today, Richard started the Fentanyl 72hr 25mcg dosage. I know he's in pain if he agrees to start the patch. Neither one of us has ever needed medications for health issues so we are in uncharted territory. Of course, having cancer is a different world and the old ways are gone for the time being. I like the term "new normal." There is no reason to suffer and the motrin only took the edge off.
I'd love some feedback on pain relief from the patches. Please no horror stories because I'd be totally freaked out and paranoid. Cautionary advice would be fine and positive feedback about the patches would be great. Richard has a good appetite and I want to keep him eating as long as possible. It's just so painful and we are supplementing with protein drinks, ensure+, Peg tube and ice cream. You all give such good advice and I value all your opinions. Geri

I didn't have the patches but from other posts I know they had to be weaned off when the pain subsided.

David, What did you use for the pain? Richard reacted that first night to the chemo and has had one side effect after another since then. Now with the mouth sores starting in the third week, It seems as if he is going to need all the help he can get. The results of the first set of blood work after the chemo has come in and is perfectly normal. The numbers are all about the same as before treatment. This is good news, but that will probably change within the next few weeks. The only break we've had so far is an excellent prognosis. We need to cling to that info and have faith that this will pass. Geri

I am currently on Fentanyl patches, 100mcg every 3 days. They are wonderful. They work great, they're easy to apply, and they keep their 'stick' pretty well. The 100's are fairly large but if after 48 hrs or so one side starts to lose it's stick, I apply a large bandaid over it that keeps it anchored down to the skin and that works great.
I've also got Oxycodone for 'breakthrough pain' but haven't needed that in some time, the patch does just fine.
It's normal to develop the narcotic addiction to them and I don't know of anybody who's used them long term and NOT had that. But for me, this is my third round of using them in 3 years and I love them. You just have to know that at some point you'll have to go through the process of getting back off them.
Feel free to holler if you have any more questions about them.
-Steve

Steve, Did you start out on the 25mcg dose and then move up to 100mcg? I guess they try you at the lowest dose possible. The nurse said it could 18hrs or so for the med to start to work and then it will be in your blood stream continuously. How long did it take for yours to work? Thanks for the feedback. Geri

Hi Geri,
At first, yes it took maybe 8-12 hrs for me to kick in, but once you're on it and replacing the patches on schedule, it provides a pretty consistent dose. For me anyhow, at the end of 72 hrs it's not like it's all worn off. I can sometimes feel that it's not full strength any longer, but not completely gone. So if you stick with the schedule it's pretty consistent in my opinion. I know in some cases if the pt. feels the patch is not lasting the full 72 hrs, the doctor will have them replace the patch every 48 hrs instead of going to the next higher dose (they've done that with me on a couple of occasions) but of course you would ONLY do this if directed by your doctor to do so.

Yes I started with 25's, then 50's, then 75's, then 100's. I've had a lot of pain from the 5-FU and the other chemo drugs causing severe mouth sores where I already have significant radiation damage. So the pain gets pretty severe for me and the patch is necessary. It's SOOOO much better than taking Oxycontin every 12 hrs or Oxycodone every 4-6 (again, in my opinion).
-Steve

I thought I'd mention again too just to be clear, when I say you develop the addiction, that's really no different than any of these other narcotics like the Oxycodone (and Oxycontin), etc. If you're on these drugs continually you will get dependent on them over time. It's one of those things they don't really tell you about in the beginning, but even if they did, you'd probably take them anyhow because of the pain, and deal with 'coming down' off them in the future once you're at a spot where you can.

There may be others not crazy about the patch. I don't recall seeing any but they may exist. I'm just telling you my opinion based on my experience with it, and actually being on it right now.

If you have other concerns or questions feel free here on this string or you can shoot me a PM too.

-Steve

Steve, Thanks so much for your info. It means everything to get some reassurance that the patch will help. Did they ever prescribe oral morphine sulfate for break through pain for you? Morphine has such a scary sound and we haven't used it yet. The nurse said it is quick acting and only lasts up to 4 hrs. Did you ever take any motrin while on the patch or was the patch enough? This is all so foreign to us and to Richard who wouldn't even take an aspirin before this all started. Thanks again, Geri

I used the fetanyl patch and it worked great for me. I started with 25 and at the highest was at 150. That was only for about a week then gradually back down. The dose I stayed at the longest was 75. It was easy to use, but remember it takes about 24 hours to get regulated so make sure you know when to change it. I used to write it in my calendar where I kept my appointments when I put a new one on so I could remember.

He should also be given something for breakthru pain. As always ask the doc about taking something like motrin. I was given Lortab liquid which went in the peg tube only on a very rare occassion. Morphine is used very often with cancer patients and it works great, Ive taken that many times when in the hospital. Fentanyl is actually stronger than morphine.

Tell your husband not to feel bad about taking the patch. I am not and never was one for meds, but fighting cancer kinda makes you do everything differently.

Yes in previous rounds of treatment I was given morphine also and had no problems with it. Currently I have Oxycodone in liquid form (20 grams/ml) and in pill form for breakthrough pain. But my doc reduced my 5-FU a bit so I've been able to stick with just the patch alone for the most part. I have taken Motrin and Extra Strength Tylenol at times as well in treatment but make sure you talk to your doc to make sure there's no conflict with what you're on and what you want to take. You should be able to get by for the most part with the patch and whatever they give you for breakthrough pain.

I think if he gets on the patch he'll find it an easy and effective transition and I'd be really, really surprised if he didn't come to like it after a dose or two. Great stuff IMHO....
-Steve

Thanks so much to both of you for posting your info. Christine, do you remember how long it took for the patch to first take effect? I put the time and date on a designated piece of paper on my frig. and will use that to keep track. Thanks, Geri

Is he using any swish-n-spits or swish-n-swallows for the mouth sores? Baking soda and salt mixed in warm water works well too...

I used pain pills, liquid pain med, the patch and morphine during different parts of my tx...

Hi Geri,

I started with a 25 dose patch and then moved to 50 and then to 75. Seemed like it was about 10 hours for the new patch to kick in. My first day of the patch was the best of the cycle days for me. I felt very good and relaxed me a good bit.

The patch takes about 24 hours to get regulated. Dont use that as the change it time. Use the exact time you put it on him, and always put it in a different spot.

If your husband put it on yesterday, then today he should feel some relief. Did you get the magic mouthwash yet? Thats another life saver around here.

Geri,

Now for the other side....every pain pill they gave me caused more adverse side effects, mostly nausea, than good so after trying AND BUYING every pain pill and combination in the world and ending up in the ER 3 times due to nausea related dehydration, constipation, etc., etc., I decided on my own that I was better off without them so I stopped them all together and my nausea got better and I survived the TX. That's why we constantly said that each of us can react differently to all this glorious Tx has to offer.

Geri

Wow, finally something bad that David had happen in TX that did NOT happen to me [outside of getting cisplatin ;)]
Just confirming that the patches worked wonders for me. They eliminated the nausea I had from trying to swallow all those oxycodone. made taking a shower bearable, and all in all were wonderful. Old Hippie trivia: One of Fentanyl's street name is "China girl" and it puts the David Bowie song "China Girl" lyrics into a new revealing light: "I could escape this feeling, with my China Girl
I feel a wreck without my, little China Girl...
I hope Richard keeps well and does great.

We need more advice. Yesterday, two doctors looked at Richard's mouth and said that the sores are canker sores and recommended a topical med for them that we started to use yesterday. As I posted before, on Wed afternoon he put the patch on thinking this was the beginning of the actual mouth sores. The RO said it was a little early for mouth sores, but to start to use the patch if the pain was acute.

The patch makes him feel off and he would like to stop it after the 72hrs. We know he'll need the pain med eventually, but there is no pain at this point except for the canker sores. He wouldn't of used the patch at all if we had known these were only canker sores. He has no sore throat and wants to wait until the pain from the treatment really kicks in before starting the heavy duty pain meds. We will ask the doctor today, but since he's only used one 25mcg patch would there be any withdrawal if he stops it. At this point, he would rather have a bit of discomfort then to feel loopy. Thanks, Geri

Here's what the trade-offs seem to be:

1. Morphine - Acts quickly, tapers off quickly.

2. Oxycodone -- Acts more slowly, lasts longer.

3. Patch -- Acts very slowly, lasts much longer.

Used together, they can bridge the shortfalls if one undermedicates.

I used the patches for years for a bad back. I quit taking them a couple of years ago. (long story) I have not had to use anything stonger than loritab for my throat pain. If hubby has only used 1 patch he can take it off with no problem at all. Even within the 72 hrs. Keep the unused patches some place other than the bathroom, worst place in the world to store meds.
Hope that helps
Amy

using a 25mcg fentanyl patch is not heavy meds!!!rob was on 300 mcg patches,plus morphine and voltarol and codeine.What it is though is a permanent level of medication to ease the discomfort.As the pain gets worse the patch size is increased and as a tolerance for the drug at a low dose will have been established,there shouldnt be any side effects from the higher dose.it is bound to make you feel a bit fuzzy at first,but like most things that are worthwhile ,a little perseverance is needed.the options mentioned are ok but you have to wait for them to work once the pain is bad.

Why do you use the term ONLY canker sores.in a irradiated mouth theses are very painful,and trust me its never too early for mouth sores.robs mouth was shredded by day 5.

liz

Geri

I gotta go with Cookey's advice here. "Loopy" is hardly the worst feeling to have during treatment (much better than soul searing agony). My only regret about the patch is that I did not demand it earlier. Of course as with any advice on this forum, you need to consider the source and full disclosure: I have and remain a very strong advocate of "Better Living thru Chemistry".

Hi all, I did not mean to make light of the pain from the canker sores. The RO observed that they didn't look the same as the mouth sores caused by the treatment. We obtained some medicine from a compounding pharmacy to apply to the canker sores and it has done wonders. They are much better and Richard is able to shallow and eat without much discomfort.
My daughter, who has been plagued with canker sores for years, swears by this medicine that was recommended by her dentist. It is made up specially for each patient. So, we will go with what works and take each day as it comes. There is also a topical medicine the compounding pharmacy recommends for radiation burns that we are going to have the RO to prescribe. We will use it along with the aloe vera gel. Richard will go back on the patch when he feels he needs to. He will be very careful not to let the pain get ahead of him. He's not against the pain meds, but doesn't want to go on them sooner than needed. Thanks for all your comments...Geri

Geri,
Many of us here wouldn't have survived without the miracle of the Fentanyl patch. It takes 24 hours to reach it's full therapuetic dose in the blood - that is for the first patch. There will be enough residual effect that you will not notice when subequently replacing patches every 24-72 hours, whatever your doctor prescribes. The patch should knock the pain threshhold down to a "3" or less. In instances where there is breakthrough pain, then that's where the morphine comes in. It is the fastest acting narcotic on the market today. 1/2 hour in tablet form and almost instantaneously in liquid form. If you find yourself taking too many morphine pills or liquid morphine each day (like the maximum allowable amount) then the strength of the Fentanyl patch must be increased. The doctors have a specific method for this called a titration formula. Never adjust the meds yourself -always seek clearance from the prescribing physician first. Breakthrough pain may occur while doing simple activities such as attempting to eat or drink water. I also took breakthrough meds when I knew I was going to have a procedure, such as an exam that day. I always took them in advance of the exam to insure they were at full potentcy during the procedure. There is no need to suffer when you don't have to and proper pain management is a basic patient right! You should also have "pink magic" swish & spit topical pain killer on hand, especially for eating and drinking.

Some might say "why bother - I have a PEG tube" well the fact is if you don't use it you lose it. Every effort should be made to continue to swallow food (even liquid, like Carnation VHC) and water orally to keep the muscle groups functioning. By all means use the PEG for the heavy lifting, if you have one, but don't stop attempting to swallow normally (even if it is just sipping water). You may end up with swallowing issues, post Tx, that can take a long time to rectify. A few of us here went without a PEG (myself included and I safely say that out of the 5,800+ members, I can count that number on ONE HAND)) and in and many foreign countries this is the norm. The truth is that many here simply would not have survived without one and there has been plenty of discussion about this in other areas of the forum. This is a controversial topic so to those of you thinking about it - don't hijack this thread with a debate on to PEG or not. I merely mention it in the context of pain mitigation for swallowing orally.

Caution: Follow the directions for use, to the letter, when using Fentanyl patches. NEVER use a damaged or torn patch. It is the most potent synthetic narcotic ever invented.

Always report, daily, to the doctors what the pain threshold is. My CCC asked me every day but some don't. Use the numbering system 0-10 with "10" being unbearable pain.

Keep a log of all medicines, food, and water ingested.

It can take a short perioed of time to adjust to some narcotics and there have been a very rare few instances, on the forum, of individuals having an unusual adverse effect so they may have to fiddle with different drugs to find the correct ones for you. There is also a morphine time release patch available as well. Some patients will get Oxycontin and even Methadone. The latter we see less often here, but is is listed in the NCCN Oncology Practice guidelines for adult cancer pain management. If you explore the resources setion of the main site there is a link to the NCCN guidelines. I am no longer providing the link because there is a wealth of information on the home site and I wish to encourage every person coming here to explore the main information pages. Many questions, frequently seen on the forum, are answered there.

To avoid side effects from narcotics, mainly constipation, which will also cause nausea due to the interuption of homeostasis, be sure to stay hydrated and speak with the nutritionist about methods of mitigation. Constipation is a nasty side effect and can make the cancer adventure a very miserable experience indeed. Trust me on this - I know from first hand experience.

When the pain has passewd then you will need a medically crafted phase out plan to avoid severe withdrawal symptoms and possibly even convulsions and death. NEVER stop taking "long term" narcotics abruptly.

Some here have mentioned fear from addiction problems. This RARELY happens when people NEED pain management (I wish I COULD have gotten high!). Addiction occurs when people take narcotics when they DON"T need them.

Wow = I feel like one of the final five Cylons (guess who is a Battlestar Galactica fan)for going the entire TX without a PEG. In amazing synchronicity, I was just cleaning out a file cabinet minutes ago and came across an interview with Swedish doctors who stressed that even with a PEG, patients needed to keep swallowing in order to reduce complications later. Exactly as Gary suggested.
Geri
The worst part of the pain meds for me was the constipation. What ended up working the very best was plain old suppositories right off the CVS shelf. It avoided all the hassles with the laxatives.
Finally, sadly Gary is right that you don't even get high off these narcotics due to the pain so addiction is a red herring for the majority of cancer patients.

Charm,
The worst part of my entire treatment was the constipation! It even overshadowed the pain. I spent many glorius moments, curled up in a fetal position, on the bathroom floor. So the narcotics are truly a double edged sword. They take away and they also give. I ranked my constipation management a "D-". There are many ways to mitigate the side effects of narcotics, dietary fiber, plenty of hydration, suppositories, stool softeners, laxatives, meds like Reglan, etc. Even prunes are very effective. Fruit based smoothies work well also but anything with fruit may be too acidic to swallow so this is a good time for the PEG or "swish and spit" compound first.

It still amazes me that one can become SO constipated only drinking liquid foods!

As soon as I was able to wean off of the nartotics this, overnight, became a non-issue. Don't stop taking the narcotics too soon however. Pain DOES NOT enhance the healing process.

Geri,

As is so often said here, everyone responds to treatment differently. I never needed more pain meds than oxycodone, but usually less than the full dosage per day, and stopped taking it pretty quickly after treatment ended.

Also, I've not experienced any swallowing difficulties, despite my PEG tube, but I was diligent about doing my mouth stretching and swallowing exercises. Eating is still slow, but that's due to limited saliva and my Franken-tongue being less mobile.

One more thought from the peanut gallery

I like Margaret, had relativly low levels of pain management drugs. But this was a result of how I reacted to treatments. Everyday at CCC I was asked once, twice , three times what was my pain level 1-10. They wanted 3 or less. I got the talks and learned that recovery is faster and easier with no pain, you received no extra credit or stars for "gutting" it out, the cure was not better if it was painful. I took pains meds when I needed them but I was lucky. The point is take the pain meds to recover if you need them. The CCC should be/will be pro-active in helping you manage your discomfort.

Well, we are back from the 2nd chemo. They reduced the dose of cisplatin and said that it was still a good therapeutic dose. The first chemo the MO mentioned 196 and today they lowered it to 110. Richard took the Emend and they gave him the Decadron in the IV. I asked for the Zofran in the IV, but the MO nixed it because he said Emend and Zofran are alike and that taking both at the same time is overkill.

If Richard is as sick as last time, I'm going to be ticked off. I feel the Zofran should have also been given. The nurse said if the Emend doesn't work, not to take the Zofran until we call them in the morning. If he's sick tonight, wouldn't that mean the Emend isn't working and he could try to Zofran, which worked last time? Has anyone taken both of these two drugs together at the same time? We also have a prescription for Ativan and Decadron. Anybody that can help, please post...Geri

Geri,

Speaking from experience there are some of us that just couldn't find anything that worked or that didn't produced worse side effects. After trying millions of dollars in pills for pain and nausea I just said the hell with this and stopped all of them. I actually felt better taken as a whole because even though I did have the pain my nausea was brought back to tolerable levels and I was able to keep things down after swallowing.

Believe me I'm not advocating doing what I did but I'm just saying we can all react differently to the same pills or combos.

Hi, Could anyone tell me if they used Mucinex or any over the counter meds for the mucous? Richard is beginning to get this and he knows it will get worse. Seltzer water is working good at this point and if anyone has any more ideas, please post or refer me to a link on this site. Thanks, Geri

Geri

Hints on increasing efficacy of Seltzer water for mucous:
1. Buy the cans only - in cases on sale - to maximize the "fizz"
The large bottles never held enough fizz after the first rinse no matter how quickly or tightly sealed. The price difference isn't worth saving when you choke and still cheaper than OTC Mucinex stuff.
2. Use a fresh can each time (just like the professional wallpapers do who use a new razor blade each and every time they cut): no need to swallow - actually easier not- just swish and spit.
3. Keep "gargling" every time, several time to dislodge stubborn mucous at back of throat.

The above worked well enough for me to never need OTC or Mucinex although it was very bad.
Bonus: As they say on TV: But wait there's more
When I found it difficult to drink my EnsurePlus later due to mucous forming immediately after each sip, I would rinse with selzter water twice, spit and then good to go with next sip of Ensure. One can each ensure.
You are such a good caretaker. Sorry I have no experience to share with mucinex etc.

Hi Geri:

I used generic over the counter cold meds. Put them right in the peg tube. I would also rinse several times daily with a combo of a coffee cup of warm water, 1 tsp of baking soda and 1 tsp salt. Most of the time I omitted or cut back the salt cuz it bothered my mouth. Due to many mouth sores, I wasnt able to do the seltzer but sure wanted to. I didnt know about the mucinex til close to the end so only used it a few times, but it did help.

The lower dose of chemo hopefully will be easier on your husband. It sounds similar to how mine was. When the second dose got cut down, it was dramatically reduced. Still keep alert for it to hit him in about 8 days. I was very delayed my doc said and got reactions 10 days or more after given the chemo. I sure feel bad for what your husband is going thru, its not easy at all. He is lucky to have you taking care of him.