My husband had a radical neck surgery for tumor in back of his mouth, they took out part of his jaw, little bit of tongue and i think his soft palate and pulled some muscle up from his chest wall to cover the hole that was left. this was a few months ago, he also had mouth cancer 14 years ago and was cancer free until his last diagnosis december 2011. He is having a lot of pain, he was taking roxicet for pain and tried weaning off of that and using tylenol or ibuprofen, but had to go back to taking it. Dr finally suggested pain clinic, they gave him fentanyl patch, he is just getting started on that, but he doesn't feel like it is helping much. Don't know if everyone has this much pain? any helpful ideas?

Welcome to OCF! The surgery you have described is a major one which can have a very long recovery, up to a year. Im not surprised at all that he is still in alot of pain. What surprises me is that his doctors thought tylenol could work for his pain. thats like putting a bandaid on a broken leg. Nobody should have to hurt, it is not helpful at all to the patient. Ive had something similar done with half of my lower jaw removed, neck dissection and the peck flap.

How about asking for Nureontin? That works on muscles and should help and can be taken along with the fentanyl. The fentanyl patch will take 24 hours to kick in. It is the strongest pain medication available, its much stronger than even morphine. What dosage is he on? It comes in 12.5, 25, 50, 75, 100mg. For example, if your husband is on 25mg and he doesnt feel like it is helping then they can bump him up to 50mg. Once the dose gets set then if he would have occasional break thru pain he can take something for that like lortab or roxicet. A word of caution.... read and follow the directions very carefully with the patch. No hot showers or soaking in a hot bathtub, never bend, tear or cut the patch. Those things can cause the patch to release too much medication and cause an overdose, so be very careful.

Best wishes!

They were suggesting that as as some other optionas to try to wean him self off the harder stuff, he is self employed and trying to work through his pain. He is not someone who can sit still, has to be doing something and has to be able to drive and have a clear head. Thanks for that info, i will have to find out what dosage he is on, he is a small guy and very thin, so probably started him out on low dose. thanks

thanks, he was on 25 they upped to 50, helped for couple days, but says he still has pain and is still using the roxicet as needed. haven't asked about the other drug, thought we would give this some time. should the pain get better eventually?

Pain pills arent like some drugs where you have to build up to a circulating volume to have an effect - they are designed to last a certain amount of time - having more is genrally the only way to go which you don't want to do... Assuming he's taking the maximum prescribed... So, if it's not helping now - it won't - unless his pain level drops due to healing. They need to find something else. Hugs!!

I had good luck with Hydrocodone for pain. Also, as Christine states, talk to your doc about neurontin (gebapentin) for neuropathy. I ended up with much pain in hands and fingers and the gebapentin has helped me with that. (I also started crocheting things like crazy as therapy for my hands and fingers, but I digress, lol) The gebapentin also helped with the face/neck swelling.

Fentanyl is roughly 100x stronger than heroin as an opiate goes and is the strongest pain killer available to us (Carbofentanyl is stronger but used for large animals) and 50mcg/hr is a healthy dose of that drug.

There are a few things to consider however before upping the dosage again, the first is the type of pain he's feeling. If he's experiencing nerve pain (neuropathy) then an opiate pain medication won't help. As many people have already stated, Neurontin (gabepentin) or other anti convulsant/seizure medications are generally the first option. Neuropathy is difficult to treat however, so if the pain is neuropathic (burning or crushing sensation not helped by traditional NSAIDs or Opiates) then generally a low dose tricyclic antidepressant is prescribed. If none of the above work then direct lidocain injections or biofeedback are really the only other options for relief.

Low dose antidepressants are probably worth looking into anyway. Due to brain chemistry we actually feel more pain when in a depressed state, either situational, chronic or chemical imbalance. It's important to remember that opiates depress the central nervous system and lower testosterone, causing depression, you can see the cycle developing here and one of the reasons opiates lead to addiction.

My advice is to talk to your Medical Oncologist about an antidepressant and TRT, or Testosterone Replacement Therapy. Stress, Opiates, anti-depressants and other medications all constrain testosterone levels in the body, there is a direct link between low testosterone and depression. There is also a direct link between lean muscle mass percentage and survival rates in cancer.

As testosterone is a key hormone in building/maintaining lean muscle mass, having it constrained as much as it is during treatment is believed to be one of the factors in Cachexia, or cancer related wasting syndrome, where the body sheds massive amounts of weight, almost entirely lean muscle mass.

Hope this helps, sorry for the book.

Eric

Eric's advice is based on real experience and well worth following. But first things first: I found that even 75 mcg Fentanyl patches needed to be changed every other day and never gave me pain relief for the prescribed 72 hours. My doctors agreed on only going 48 hours between changes plus they knew I boosted the opiates with a glass of wine at night and I did take hot showers. Individuals vary in their responses and don't fit neatly into those little package insert pigeonholes.
My recommendation is to talk with his doctors about this problem. Oh, and yes for many of us the pain was excruciating enough that even opiates only dulled it. I supplemented my pain control with medical MJ and that did the trick.
Charm

well he is on 50 mg fetanyl patch and i called to see if he could get on the gavapetin, so he will start that today...since he is still having pain along with taking the roxicet. the pain dr is saying if drugs aren't working so well...he might want to have the nerves to his face lasered to kill the nerves? So he would just be numb? anyone have that done to stop the pain, is that a good idea? what are the negatives to that?

The cranial nerve network to the face is very involved (you have twelve paired cranial nerves in your head and neck) with all of them except the IVth terminating in the cranial nerve nuclei. The nuclei is basically half motor nerves, half sensory, damage or signal interruption in any nerve will usually be interpreted in the brain as pain (neuropathy). Because the nerves terminate so closely together there is a lot of "cross talk" so when you are feeling pain in an area of the mouth, like tooth pain, it's the reason why you're whole head feels painful and hot.

Nerve pain isn't easily treated and Trigeminal Neuropathy or TN is considered the most painful condition known to man (The Trigeminal Nerve is the Vth Cranial Nerve or CN5). Treatment options aren't usually good if anti-seizure medications or low dose tricyclics (anti-depressants) don't work. Direct injections of local anesthetics are used to provide some relief or biofeedback, accupuncture etc.

Lasering of the nerves would be the last option and the side effects would depend on whether the nerve causing the issue is a motor nerve or sensory. My VIIth cranial nerve (motor) was damaged during my mandiblectomy due to tumor placement, leaving the entire right side of my face paralyzed. 18months after that surgery I had a CNVII-CNXII nerve graft done to try and restore motor function to my face. Basically they yarded out the nerve that controls half my tongue (CNXII) and grafted it into my facial nerve. Didn't work but it was worth a try.

Anyway, the pain needs to be identified as to whether or not it is in fact neuropathy or just pain caused by the treatment etc. If it's a damaged nerve then they can start doing tests to identify which nerve and where the issue is by hooking up electrodes and sending a signal through your face. It's not bad really, I've done it. Don't let any of this freak you out, the main thing is to treat the pain and then find the answer to what's causing it and THEN worry about the solution. One step at a time.

Let me know if I can help in any way, sadly I know too much about the issue.

Eric

Praying for you!

thanks this is good information to know. i will keep this in mind.

well after having his fentanyl patch bumped up because the gabapetin wiped him out too much, they upped patch to 75, and that was way too much, sleeping way too much and could not get off couch, called dr back and said he was sleeping too much, could we try lyrica and within the first day, he was a whole lot better...actually feeling good enough to leave the house and putz around the garage...so thinking we are getting the meds worked out finally. thanks for the suggestions.

That's so great... its amazing how differently people respond to different meds. hugs!

well no good news...since last post, had PET scan showed significant tumor again and it had only been around 5 months, husband opted not to do any more surgeries or radiation, so just trying to do pain management to make him comfortable, had tried to go down to hospital for nerve block they ended up trying to go up through sinuses and block there, but didn't work, and since then he had me call hospice in for pain management, but things work for couple days, then he has allergice reaction or swelling from the cancer, keeps being nauseated even on nausea med, trying steroid to shrink swelling and worked for awhile now swelled up again. he just can't catch a break, failing fast! just wish his nausea and pain would go away. he is on 62 fentanyl patch, roxicet 10 ml, took lyrica away since pharmacist said could cause facial swelling after so long...just trying to figure out what is causing the nausea and swelling...a guessing game.

Hugs and god bless!

Well, my husband went in for his PET scan on june 19th and was told that the cancer was back and very aggressive, my husband opted not to have surgery or radiation. we had tried to go and do the nerve block but they opted to do a nasal block, which didn't work, the next day he asked me to call hospice and i regret to inform u less than a month after the last diagnosis he succumbed to the disease. He fought a great fight and died with his dignity, he was still giving a thumbs up to some family members the day before he died and went quickly. thank u for the support.

Im very sorry to hear your sad news. That was so fast from being diagnosed with the recurrence to his death. Please accept my sincere condolences in the loss of your husband. May he rest in peace, free from any pain and suffering.

So sorry for your loss.

So so sorry.

I am sorry to hear of your loss and will keep you in my thougts.

So sorry for your loss. I pray warm memories will get you through this time. Can't even imagine what you are going through.
Blessings,
Kathy

Sorry for your loss

thanks for your support, it was so fast i feel i am still in shock, he was just so thin i don't think he had the strength to fight anymore and was in a lot of pain

I'm so sorry for your loss - It is so unbearably hard to lose a loved one. You have both been through so much. I hope that in the days ahead, there will be some moments of peace for you and your family, just knowing Joel's pain is no more. I'm sure he is close to you in spirit and probably giving you his wonderful "thumbs up" sign again.

What a guy showing the thumbs up sign, that was awesome! Keep that memory with you, he was yet another true warrior fighting this dreaded horrible disease. Sorry for your loss, may he rest in peace and be forever alive in your memories for all the rest of your days until you two will meet again and I'm sure he will have 2 thumbs up when he sees you!