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Jim L

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"brakthrough cancer pain medication? Fentora
Aug 5^th, 2010 at 12:06am

Maybe I was a bit too dramatic with my first visit with my new pain management clinic today. They agreed that it would be a good idea to give me a supply of Fentora for my worst nighttime CH "9s" or 10s." It seems like the machine gun of pain killers, normally given as a pain relief boost to cancer patients who are on a morphine drip. All I see on the web makes it sound pretty scary. The pharmacist pulled me aside to ask if I was SURE I needed this. I just picked it up before going on a business trip by myself. I'm thinking somebody else should be present when I first try it. Any experience with it, anyone? I've tried percocet before and told the Dr. (a psychiatrist) that it didn't really work very well. He said that this might work better/differently in that it acts quickly and for a short period. He did give me a stern lecture about not abusing it. I submitted my pee for testing before they wrote the prescritpion. I'm not prone to addictions, so I'm not worried about that. He prescribed 200 mcg -- The directions say "do not cut the tablet apart" --So, of course, for the fist try I want to break it into quarters to be safe to see what it does to me. Am I being a wuss? A quick slap in the face to a "10" in the middle of the night sounds tempting...
The pain clinic people think my other doctors have been too timid in gettng me pain free quickly.
Verapamil (480) seems to have reduced the number of attacks, but the intensity of them hasn't changed since this episode started three months ago. I'm wiped out and depressed. They also resurrected Cymbalta (for pain), now in combination with Wellbutrin for depression and see how that cocktail works.
Are we all just chemistry experiments?

Jim

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Mike NZ

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Re: "brakthrough cancer pain medication? Fentora
Reply #1 - Aug 5^th, 2010 at 1:28am

That certainly sounds like an interesting pain medication. Fentora is a brand name for Fentanly, which has quite a good page on Wikipedia that seems to summarise quite well what I found on other sites.

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Fentanyl is approximately 100 times more potent than morphine,[6] with 100 micrograms of Fentanyl approximately equivalent to 10 mg of morphine and 75 mg of pethidine (meperidine) in analgesic activity.

It's a synthesised opioid and with that strength it is likely to have an impact on your pain, however the side affects can be scary, never mind the fact that it is more addictive than heroin with people getting addicted very quickly.

I can understand why the pharmacist asked if you were sure you needed it.

I'd be very tempted to have someone around for when you first take it.

I'd also ask a pharmacist about cutting the tablet as the drug is absorbed in the small intestine, so it could be that the tablet has a coating to prevent it being digested in the stomach. Cutting the tablet could result in you not getting the pain relief.

The half life is given as 7 hours with a range of 3 to 12 hours, so if you take it at night it will still be in your system the next morning, so I'd take care with things like driving, etc.

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Lettucehead

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Re: "brakthrough cancer pain medication? Fentora
Reply #2 - Aug 5^th, 2010 at 1:29am

um, oh my...

Look, I'm REALLY not into 2nd guessing doctors who have seen and examined you... HOWEVER - yikes!

Fentora is buccal fentanyl - this is a very stong opiod pain med. Fentora generally is only used for breakthough pain in patients with severe intractable pain who are already on moderate to high doses of baseline narcotics. Very often, fentora is only used for cancer patients with breakthrough pain.

Fentora specifically has a 'red box warning' (meaning a specific highlighted warning that all docs should know about prior to prescibing the medication) that this med should NOT be used for patient's who are not on chronic baseline narcotics or for acute/post-operative pain.

There have been deaths from OD on Fentora. This is a very very powerful med.
I also have to admit that I have concerns that your pain med physician may be outside his area of expertise (he a psychiatrist?!). I wonder if he's taken training in pain management or prescibing safety of these types of medicaions...

Also, please do NOT cut or bite or otherwise manipulate the tablet - it may increase the rate of med that is available to be absorbed into your system by increasing the surface area of the tablet...

Hey, I don't mean to scare you, but, please, be careful...

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Re: "brakthrough cancer pain medication? Fentora
Reply #3 - Aug 5^th, 2010 at 1:43am

Jim,

Having gone the route of opiates and narcotics early on in my CH experience about 30 years ago I can tell you I will not put one in my mouth again for CH, and only very rarely for anything else. You say you are not an addictive personality, but with that stuff you don't have to be. Once you are hooked on it you will be addictive to about anything else out there. Please be careful! Besides that, unless you have hits that are staying in a K9-10 state for over an hour the hit will be over before it can get to your small intestine and be released into your bloodstream enough to do any good.

You have to make your own choices, but having been where I have I wouldn't touch it myself.

Jerry

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Re: "brakthrough cancer pain medication? Fentora
Reply #4 - Aug 5^th, 2010 at 1:51am

Well, really, much (although not all) of this med is absorbed through the buccal mucosa in the mouth although some (maybe 25% or so) is swallowed and is absorbed through the intestine.

For a non-injectable, it is a very fast absorbing med - which is why it is so good for breakthrough pain in cancer patients.

Generally, starting pain relief in 15-20min or so, but peak dose in the blood around 45min to 1hr (these are approximations)

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MJ

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Re: "brakthrough cancer pain medication? Fentora
Reply #5 - Aug 5^th, 2010 at 1:51am

Jim
I dont think I have seen a medication with as many warnings and potential side effects before.
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Must be why its only given to cancer patients in later pain stages where strong narcotics alone dont stop the pain.
Might work if its as strong as they say but a pretty heavy trade off. Its still in the narcotics family and really shouldnt be a tool to fight CH for most of us.

In my experience some pain clinics believe a little too much in medications rather than addressing and adjusting they drug you to the extremes so much that one doesnt care if they have pain.

In a life long ago I once was a zombie. Never was rid of the CH pain but I didnt care if I had it, neither did I care if I ate, drank, slept, bathed, worked, just looked at the world through glassy eyes and existed. This was probably around 78,79.
Fortunately I had a moment of clarity and did my own intervention. I would much rather have the pain than some of the drugs I was given and I had not yet experienced less than a k-10 CH and was being hit with nonstop CH. That never changed.

Cluster busting medications as an option are far far safer and actually stop the damn things for a lot of people.

Though Verapamil never helped me I know a lot of folks take higher doses than you to break the cycle of pain.

Good luck. Hope you find your tool to slay the beast.

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bonkers CH.com Old Timer Offline What is THIS? Posts: 308 San Diego, California Gender:	Re: "brakthrough cancer pain medication? Fentora Reply #6 - Aug 5^th, 2010 at 2:11am Michael was given an Rx for fentanyl lollipops a few years ago. I remember him feverishly rubbing one of them all over the inside of his mouth and gums in an attempt to get some relief. It didn't touch his pain.
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Jim L

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Re: "brakthrough cancer pain medication? Fentora
Reply #7 - Aug 5^th, 2010 at 8:49am

Yeah, it was the Wikipedia article that gave me pause. I got the melt-in-your-mouth version. I made it through my "9" last night without taking it. (BTW, my 'business trip' is a couple of days at a friend's beach house to see if a change of venue will do me any good.) I'd be mortified (literally) to have any OD medical emergency here.

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Lizzie2 CH.com Sponsor Offline "L'Chaim"~Hebrew Toast~"To Life" Posts: 4824 Boothwyn, PA Gender:	Re: "brakthrough cancer pain medication? Fentora Reply #8 - Aug 5^th, 2010 at 9:30am Jim - If I were you, I'd probably steer clear of this one. My 0.02. Can't recall what you've said before... do no abortives work for you?? PF wishes, Carrie
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Re: "brakthrough cancer pain medication? Fentora
Reply #9 - Aug 5^th, 2010 at 10:57am

The last post we had on the topic of using opiates produced such a rush of intense responses that the whole message was shut down.

Which says: there is strong, broad agreement here that use of opiates, any strong pain pain med, is not appropriate for Cluster. My reaction is: pain management clinics are NOT headache clinics and our collective experience reinforces the medical literature--we need sophisticated headache docs to work thru what are a difficult, complex disorders.

I'm especially concerned because you have not given us a history of the conventional cluster headache meds/treatments which you have used. In the absence of that history it's impossible to give any responsible advice beyond this: get to a doc who knows how to treat headache. Headache is more than pain!

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

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; On-line screen to find a physician.

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Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

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NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

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Dallas Denny 62

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Re: "brakthrough cancer pain medication? Fentora
Reply #10 - Aug 5^th, 2010 at 11:24am

bonkers wrote on Aug 5^th, 2010 at 2:11am:

Michael was given an Rx for fentanyl lollipops a few years ago. I remember him feverishly rubbing one of them all over the inside of his mouth and gums in an attempt to get some relief. It didn't touch his pain.

Several years ago during a particularly nasty cycle I ended up seeing 2 different "pain management" docs.......both prescribed fentenyl "lolly pops"........both told me upfront when they prescribed them that "we would worry about the addiction later"!! Thats why it generally is only prescribed for cancer patients for "break thru" pain......addiction's not such a problem for folks that are terminally ill!!!!

Fortunately for me, I found this site at about the same time and learned about highflow oxygen and never filled the script!!! Hell, my insurance wouldn't cover it and it was gonna cost over $500 to get a 30 day supply so I couldn't afford it anyway, but I was desparate and I seriously thought about it!!!

Dallas Denny

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Chad CH.com Hall of Famer Offline Posts: 738 Emmaus, PA Gender:	Re: "brakthrough cancer pain medication? Fentora Reply #11 - Aug 5^th, 2010 at 1:03pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Read this. It's Svenn's thread that a lot of us know all too well. Bottom line: Opiates = no relief for clusters
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: "brakthrough cancer pain medication? Fentora Reply #12 - Aug 5^th, 2010 at 1:07pm Chad wrote on Aug 5^th, 2010 at 1:03pm: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Read this. It's Svenn's thread that a lot of us know all too well. Bottom line: Opiates = no relief for clusters What Chad said. Potter
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Re: "brakthrough cancer pain medication? Fentora
Reply #13 - Aug 5^th, 2010 at 4:05pm

Marc wrote on Aug 5^th, 2010 at 2:33pm:

Potter wrote on Aug 5^th, 2010 at 1:07pm:

Chad wrote on Aug 5^th, 2010 at 1:03pm:

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Read this. It's Svenn's thread that a lot of us know all too well.

Bottom line:

Opiates = no relief for clusters

What Chad said.

Potter

What Potter said that Chad said.

Marc

You two are so NOT right! Grin

Joe

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Jim L CH.com Sponsor Offline I Love CH.com! Posts: 84	Re: "brakthrough cancer pain medication? Fentora Reply #14 - Aug 5^th, 2010 at 7:15pm Wow -- Thanks for the firm consensus. I won't be going this route. My co-pay on it wasn't that much -- I'll find out how to safely get rid of it. I'll stick with the oxygen and sumitriptan and wait out the cycle. They work in about 30-45 minutes -- I'm just worn out after three months. Jim
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Linda_Howell

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Re: "brakthrough cancer pain medication? Fentora
Reply #15 - Aug 5^th, 2010 at 7:33pm

I was not...due to my very strong feelings on this subject going to post anything at all. I have since decided to say, What Potter said, that Chad agreed with and Marc re-iterated and now I have tripled in agreement Jim.

You and my husband and I talked quite a bit at the convention and I found you to be super intelligent and a very caring guy. I'd like you to stay that way. Wink

Linda

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Re: "brakthrough cancer pain medication? Fentora
Reply #16 - Aug 5^th, 2010 at 9:04pm

Jim L wrote on Aug 5^th, 2010 at 7:15pm:

Wow -- Thanks for the firm consensus. I won't be going this route. My co-pay on it wasn't that much -- I'll find out how to safely get rid of it. I'll stick with the oxygen and sumitriptan and wait out the cycle. They work in about 30-45 minutes -- I'm just worn out after three months. Jim

Is your sumatriptin the injection kind? Does it make a difference (asking out loud) where you inject? I know that when Joe uses this the relief is instantaneous.

O2 at high flow helps him in maybe 10 minutes, especially if he chases with a Redbull.

Hope you figure something out Jim. Would hate you have to deal with narcotic addictions on top of CH.

Christy

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Jim L CH.com Sponsor Offline I Love CH.com! Posts: 84	Re: "brakthrough cancer pain medication? Fentora Reply #17 - Aug 17^th, 2010 at 5:29pm I didn't want to speak too soon, but it seems that my episode officially ended last week! (without fentora) Jim
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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: "brakthrough cancer pain medication? Fentora Reply #18 - Aug 17^th, 2010 at 5:51pm Glad to hear that Jim. I'm out of cycle too, just had my first drink Friday, but only one. Don
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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: "brakthrough cancer pain medication? Fentora Reply #19 - Aug 17^th, 2010 at 6:53pm That's great news, Jim and Don. Enjoy your pain-free time. All the best, George
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Lettucehead CH.com Old Timer Offline I am very blessed... Posts: 293 Iowa Gender:	Re: "brakthrough cancer pain medication? Fentora Reply #20 - Aug 17^th, 2010 at 9:02pm Hooray Hooray!!!
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Katherinecm CH.com Sponsor Offline Posts: 432 Des Moines, IA, USA Gender:	Re: "brakthrough cancer pain medication? Fentora Reply #21 - Aug 17^th, 2010 at 10:11pm That's great news. Glad you're pain free.
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Garys_Girl

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Re: "brakthrough cancer pain medication? Fentora
Reply #22 - Aug 29^th, 2010 at 12:43pm

Jim L wrote on Aug 5^th, 2010 at 7:15pm:

Wow -- Thanks for the firm consensus. I won't be going this route. My co-pay on it wasn't that much -- I'll find out how to safely get rid of it. I'll stick with the oxygen and sumitriptan and wait out the cycle. They work in about 30-45 minutes -- I'm just worn out after three months. Jim

Jim, if you haven't disposed of the Fentora, please donate it to a cancer hospice!

Glad you made it through without it, and super glad the cycle ended! *Crossing fingers so not to jinx it* !!

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