Hi, everyone..
Tom has given me a list of questions for you. I know I see you all throw out the names of a lot of medicine, but since we are true rookies, we need a little guidance here.

1) What PAIN MEDS did you take - for what specific needs?
2) Which worked best for you?
3) What side effects occurred
4) Did anyone have any problems with addiction?

We really thank everyone for their information on getting ahead of the constipation problem. He was really on top of things this go-round - thanks to you. No problems

He was taking Roxicet for the pain following the multiple biopsies. Wasn't really keen on it, and is interested in what others took. Will he (I) have to be concerned about any other real pain other than sore throat?

It is getting late - but it was a nice day.
Thanks for all your prayers today, too! Hope you felt the ones we said for you They are definately the best gifts we've ever shared !
Nicki

Hey Nicki,
Dan was on the Duragesic Patch. He started at 25mg. and went up to 100...you can go to at least 150. He definitely had constipation problems that took some time to get under control. He took Oxycodene and Oxycotin. He took Protonix for acid reflux and stomach upset. Seems like the patch was one of the meds that helped the most.
God bless and take care,
Debbie

Hi...

Scott and I were very concerned about addiction simply because we'd heard so many "horror" stories. It would have been so easy for Scott to get anything he wanted--his doctor wanted very much for him to be comfortable and offered Oxycodone and a variety of other drugs that we were initially afraid to say yes to. Finally, when pain issues became a big problem, Scott took Darvocet for a bit--didn't do much for him; then he took Roxycodone, which made him feel like he could crawl out of his skin so we stopped that. He tried Duragesic patch, but he still had tons of pain, then in the hospital they gave him Fentinyl using a pump system and he had MAJOR hallucinations. He would close his eyes and dream while still awake. Weird! He even recited lines from highschool plays in his sleep. It really freaked me out!

The only thing that he used that really helped was liquid morphine--blue stuff that I just put through his peg. It helped his pain incredibly well; it was only near the end that we had to increase it in steps regularly. The great thing about the morphine was that it didn't make him jittery, excessively sleepy, or dopey feeling like the other meds did.

Christine

Hi Nicki,
I started out with a 25 mg. fentanyl patch which was supposed to handle my pain. Should pain break through at that dosage, I was told to take 1-2 teaspoons of Roxicet (a mixture of oxycodeine and acetominophen) up to 4-6 times/day. If breakthrough pain persisted, I then upped the dosage of the Duralgesic (fentanyl) patch by 25 mgs. I ended up at 150 mgs. and still was taking Roxicet a couple of times a day when things got too painful.
The major side effect of these painkillers was constipation. My nutritionist recommended Isosource 1.5 as my liquid nutrition and it has fiber in it. I've seen cans of Boost that also include fiber. This made a big difference in handling the constipation issue. Additionally, you can buy something like Benefiber which is a water-soluble fiber that can be taken orally or via a feeding tube.
At no time was I worried about addiction. I always thought that I would taper off the painkillers as the pain subsided without difficulty. I ended up taking narcotic painkillers for almost 4 months and had a rough week when I quit completely, but it was not real bad.
Hope this is of some help. Tom will be in my thoughts and prayers. Best, Sheldon

Hi Nicki, I just took panadol and morphine to relieve my pain. They were in syrup so that I could swallow them. I don't know whether the pain meds were really effective or it was just that the treatment didn't induce too much pain on me, I never complained to anyone about feeling very painful. I took the medicine for about 4 months together with medicine to cope with my constipation problem.I don't know the name but it was a brown tablet, which caused pain when I swallowed.The constipation was really frustrating. One reason was the effect of morphine and the other was I didn't eat much during treatment.I stayed in the hospital for 3 whole weeks and remember just going to the toilet for 2 to 3 times with a little 'output'. My oncologist only focused on killing my tumors and told me not to worry too much about the toilet problem. It only improved when I was able to eat some veggies and did some exercises.No addiction. When I felt the pain became less, I reduced the dosage until one day I simply kicked it off.Everyone's experience is so different. Always good to hear more and make the best decision after consulting professional advice.

Karen

Hi Nicki,
Like Sheldon, I started on the 25mcg Duragesic patch, supplemented by liquid morphine (20 t0 40 mgs) as needed for breakthru pain, usually before I ate. I never had a peg tube, so pain management was paramount to be able to take nutrition orally. Eventually I was on a 100mcg patch. As for addiction, it was something I never worried about. There were some withdrawal symptoms, but I weaned myself off of the patches over a couple of weeks by decreasing patch size every few days. The constipation was probably the biggest problem, and I'm not the one to give advice- I never really got it all under control. The pain meds caused constipation, while the Iressa caused diarhea. Rather than balance each other out, it was more like 5 days of constipation followed by 2 or 3 days of diarhea.
I was on the pain patches from the second week of IMRT until about seven weeks after the last RAD exposure, a total of about 15 weeks.
Sure hope this is of some value. You and Tom will be in my prayers.

Chuck

Hi Nicki-- I became very good friends with Hydrocodone, the liquid form... I first had it after my initial surgery, then came back to it during the first radiation and then again after my second (neck dissection) surgery...

During radiation, I was consuming a pretty good amount of it, which you need to be careful of (because too much of the tylenol in it can be dangerous). My roughest time during radiation was actually the week or two after I finished. At that point, I went to the Duragesic pain patch (for several weeks) and used some liquid morphine for breakthrough pain...

I'll admit the Hydrocodone had the intended effect of a narcotic. I usually got pretty warm and fuzzy about a half hour after I took it (and pretty mad when I ran out!!). My wife would always ask me if I had just taken medicine if I suddenly got a little "romantic" on her...

I worried about addiction stuff but I found that when I didn't need it anymore, I could step down pretty easily... My body went through some minor withdrawals and I was blue for a day or two (no longer warm and fuzzy for sure).

I think the threat of constipation helped wean me off the stuff... Right now I'm proud to say I'm not taking nothing but Zofran (for my queasy stomach)... And I should be done with that (Lord willing) in a day or two...

Keep up the good fight!!

Hi Nicki,
I started out using Vicodin but very quickly transitioned to a 25mg Duragesic patch and morphine tablets for breakthrough pain. I eventually got up to 75mg of the Duragesic. The maximum dose is 300mg by the way. The patch has an advantage also that you can't puke it up and it's a 72 hour time release. If it isn't strong enough you can slap on another patch. Caution: only increase your pain dosage by physician approval. Duragesic is only increased in 25mg increments.

The pain was pretty intense (especially in the post Tx), I can't imagine trying to tough it out without pain meds. Plus I didn't have a PEG tube so I had to eat and drink orally.

Pain managment is a basic patient right and an essential part of the healing process.

Addiction shouldn't be a concern. Most people who become addicted are those who don't need the drugs. I am a recovering addict/alcoholic and had no addiction issues whatsoever. I don't remember even getting a buzz off of it. It is very rare for persons who need the drugs for pain management to become addicted. There is a lot of hype and misinformation about this subject - some of it started by our own FDA and overzealous warning labels..

Some have mentioned strange reactions to morphine and they usually had a better response to Oxycontin. I personally had no problems with morphine and it is very fast acting.

Like the others I had a mild withdrawal for a few days but no craving to continue using the drugs. My doctor and I worked out a phase out to minimize these effects.

All narcotics cause constipation issues so be aware that it is an issue to be managed. It is especially so when using long term opioids like Durgesic (Fentanyl). I doubt Tom would have noticed that effect as much with the limited, short term narcotics he took for the biopsy pain.

Other than severe constipation I didn't have any side effects.

There are pain management guidelines on the NCCN site: http://www.nccn.org/professionals/physician_gls/PDF/pain.pdf

Hey Nicki,

Kelly was on Duragesic patch, increased from 25 at first to 150. He also had liguid dilaudid which I would give through the PEG for break through pain. He had it alot the first month after treatment. He did have some constipation, but was really able to control it with stool softeners. When he was ready to come off the pain med, against my advice he tried to just stop. He had severe withdrawal, so he ended up back on it and tappering off, which is how it is supposed to be done. He really had no problem getting off from there.
Keeping you in my prayers!
Julie

Thanks, All!
Great help; I've printed all this and am keeping it in our file for quick reference. Most happy to hear that no one became hooked on this stuff!

It was a good day for us! Tom ate LOTS of pasta and salad for lunch The worst part of trying to put the pounds back on him is that I end up adding a few myself! Small price to pay, huh?

Hope everyone gets a chance to enjoy the holiday tomorrow! I think I'll sleep in a bit myself...

Nicki

Hi Nicki,
My sister started on the Duragesic patch about 6 weeks ago at 25mg and it was increased by 25mg every week or so because of so much "break through" pain until she got to 125mg. (She is allergic to morphine she takes liguid Ibuprofen for break through pain. When she's taking the Ibuprofen 3 - 4X's a day they increase the patch.) so Last Friday they increased it to 175mg and yesterday she was throwing up and had dry heaves, feeling faint, dizzy, etc. (We think it was just too much, too fast.)The hospice nurse said to use a supository for nausea and thank goodness that worked great. Today she is fine. Hope this helps.... good luck to you.
DenverSis

Actually that is not the a way it works. They always start Duragesic at 25mg and increase it 25mg at a time. There is a formula for the ratio between the breakthrough pain meds which are "short term, fast acting" opioids vs. the "long term opioids" such as Duragesic. When the intake of short term meds exceeds a certain amount, they will increase the Duragesic. You will still need breakthrough pain medication at times. The Duragesic is supposed to control the overall pain threshold but there will still be breakthrough pain during certain times, such as eating, drinking or some exam procedures.

A 50mg jump is not recommended by the manufacturer according to their warnings, precautions, contraindications and indications for use.

The NCCN pain management guidelines I posted earlier cover all of this in great detail.

At this stage nausea could could caused by a lot of different things. If it can controlled by compazine suppositories you're pretty fortunate. I puked so much in the late and post Tx I polished my teeth like glass from the stomach acid.

Antacids may help as well since chemo does a number on the stomach lining.

Nikki,
I took liquid vicodin for pain during radiation. I started taking it about week three and stopped the last day of treatment. The pain wasn't horrible for me. Good luck with it all.
Minnie

Nikki, for the surgery I was given Oxycodone which was wondeful with no side effects and no problem stopping, then in my final week of rad when my neck was burned to a crisp and weeping, I decided to stop being tough and was given Fentinyl patches which worked wonders, I believe I was up to three or four and after about three weeks of those, just stopped, again with no problem or side effects. I really like the patches because they work for three days. Takes a little time to get started, but from then on, no pain at all. It is wonderful that the philosophy now is the patient should not be in pain. It was not always so.

Geez, people! I would not have realized how many options there were and that I'd almost need a medical degree to get through this mess!

.....and Gary, you are just soooooo descriptive that I can literally "feel your pain!"

I do find it most interesting that there are so many different reactions/tolerances/experiences with the same treatments. WE are truly unique individuals, are we not? I'm telling Tom that I would think that since his body obviously HATES the chemo, that the radiation might be a 'friend.' We can only hope...

This Xeloda causes his skin to turn splotchy-red...face/chest/feet/top of his head. He says his fingertips are tingly, too. Tomorrow is the last dose of the stuff for a week.........and radiation starts tomorrow, too...

Hope you all had a good day - Tom spent more money today - and I tell him I do believe this disease has moved to his brain!!!!!!!
Nicki