Ken is almost through his third week of radiation and things are going as well as can be expected. Still chugging down the Boosts and only lost 1 pound last week. Some thrush and mouth sores have been causing him a great deal of pain, so his chemo doctor put him on a 25 mg. Fentanyl patch, with 1 tsp. Oxycodone as needed (usually 3-4 times a day.) He was doing well with this course; however, when we met with his radiation oncologist yesterday, he expressed concern with the amount of pain medication he was taking. He told Ken the pain would "increase greatly over the next few weeks" and if he were already taking strong meds, nothing would be able to help him with the pain further down the road. Any opinions or advice on this?

My RO told me the same stuff. Ignore it. They can increase the patch to 300mg if necessary. 25 mg is a starter dose. Most people here are at 75-150mg. If he is taking too much oxycodone then they will increase the patch. Tell your RO to read the pain management guidelines on the NCCN site http://www.nccn.org/professionals/physician_gls/PDF/pain.pdf

Effective pain management is a basic patient right.

Keep that thrush under control. Talk to your doctor about Diflucan or Nystatin. Systemic thrush can have serious complications and can even be fatal.

My oncologist managed all of my medications and he was the most qualified.

Sherry,
I so agree with Gary. Dan also started out at 25 and ended up at 100 or 150. He also had Oxycodone for breakthru pain and probably one or two other meds. About the three week treatment time is when Dan really started having bowel trouble from the strong meds. Watch for that and there are different regimens to try. Dan suffered for a whole day practically on the floor in pain from not being able to go to the bathroom. It kind of happened suddenly and we were not given any instructions about that problem until he was in the middle of it.
Take care and God bless,
Debbie

In my case the pain stayed about the same once it hit. So I wouldn't be to concerned about what is to come. The meds your on now should do, if you need more you can certainly obtain. The biggest issue to come as Debbie said is the constipation. I too had a very bad day about a week after the constipation started. I would talk to the doctor to give you the proper meds for that and have them on hand so you have them if you need them.

I took the hard narcotics. Don't worry about the addiction, just stay pain free. It was only moderately difficult to get off the Morphine.
Darrell

Hi Sherry,
My doctor told me to increase the fentanyl patches as needed to handle the pain most of the time and to use another drug (Roxicet - a mix of acetomenophen and oxycodeine) for breakthrough pain. She said it was important not to rely on the breakthrough pain drug too much but rather to add another 25 mg. patch anytime the pain was breaking through too frequently.
As Gary said, you can keep adding patches and get up to 300 mg. of fentanyl. and that most of us ended up in the 100-150 range. I would say not to worry about adding sufficient medication to handle the pain. You should pay attention to the constipating aspects of the narcotics, though, and start using Boost (or whatever) with fiber. You can also buy water soluble fiber and add it to his diet. I'd suggest starting to increase the fiber before the constipating effects really kick in.
Also, when treatments are over and the pain begins to diminish (usually a couple of weeks after treatment ends), you should carefully and slowly taper off the patches so that ending the narcotics will not create too much of a withdrawal effect. You can even go from a 25 mg. patch to smaller dosages by placing some clear plastic tape under part of the patch to prevent its absorption into the body.
Good luck with the treatments and remember that despite the pain and suffering of the radiation, it will pass with time and there will be better days ahead. Best, Sheldon

Sherry - one little tidbit to everyone's post - if you increase the patch by huge doses - Ed went from 25mcg at onset of radiation to 75mcg not too far after onset then straight to 150mcg be sure you're with them or someone with them for at least 24 hours. Ed had the tendancy to get VERY light headed and nearly passed out more times than I can remember, behaved (more) oddly, and actually had a near migraine headache for about 1 week. His pain got out of control really quickly and we used liquid Tylenol 3 (only thing we used his PEG for) for breakthrough pain. Don't forget to include senna or some vegetable stool softener like Sheldon said. FYI - watch for perimiter burning. Ed got a batch that were (we later found out) recalled. We told the pharmacy and doctor about it - it burned his flesh just on the outer edge of where the adhesive was - at first we thought it was like an allergy to tape/sticky stuff...

Like I tell everyone for radiation burn - get Domeboro Soak. Best $4 you could ever spend for relief! Been 'round since the 30's for good reason.

Good luck! Every treatment down is one less left on the list!

Susan

When we met with Ken's chemo oncologist yesterday, he basically told me what Gary said in his post, which was to ignore the radiation oncologist. The chemo doctor said the doses Ken is on are low and can be increased quite a bit if the pain worsens. I think I will listen to the chemo guy from now on--he is much more cheerful and I like his advice better!
By the way, the Fentanyl makes Ken pretty goofy and spacey. Does that lessen as his body adjusts to it?

Dolores' mom :rolleyes: ,

As the body adjusts to the Fentanyl, Ken will hardly know it is there other than not feeling the intense pain. I drove to work 400 miles away with 150 on and even drove back in the middle of the night without scaring myself or anyone else, that I know of . My work was accounting and I was able to perform my duties fine, too.

I used liquid morphine for the breakthrough towards the end and it did more to make me loopy than anything.

Ed

Sherry-
Don't you listen to him! It wasn't the morphine that made him loopy, it was the NASTY dexamethasone! :p I swear those doctors wanting to administer anti-nausea drugs and any other kind kept on like Eve to Adam - "Here! Take this...it will make it feel/work better". Dex made him act like he had brain mets. The liquid morphine made him VERY short tempered more than disoriented.

The Fentanyl patches are one of the best ways to curb the major pain and still let the patient be/feel productive. There are a bunch of articles out there written by the palliative teams supporting oncologists whose patients were incapacitated because of the other/ancillary side effects of other pain meds; one in Time Magazine sticks out in my mind because it was just about the time Ed started needing them. Through the use of the duragsic patch, people with extreme pain actually have a chance at some "normal" routine.

What kind of kitty is Dolores?

Susan

The dexamathasone made Ken goofy, too. He is starting to adjust pretty well to the Fentanyl and it helps his pain quite a bit. He is at 50 mg. now.

Dolores is a fat, brown, black, and white mottled 14 year old spoiled baby. She sleeps with me at night since Ken is in the hospital this week. She terrorizes her brother, Buckwheat at every opportunity. I've raised her well....

Sherry,

I was on two 75 (150 total) for a few weeks at the very end. Don't feel you have to worry when pain is involved. With all there is these days, pain should be the easiest to manage. Also, tapering down is easier with the patch because of the way it gradually decreases on its own. Some like to go about a week on each lesser dose and then let the 25 run beyond the 3rd day to about day 5 and it should be fine.

Ed