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#136853 07-18-2011 05:28 AM
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Gerri Offline OP
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Hoping someone can offer insight. Jim's pain is unbearable. He is on Fentanyl 125 mg, Lortab max dose (and then some), Oxycodone, and Neutotin. He asks for more every hour, the Lortab seems to work the best but the doctor says if he exceeds max dosage there will be liver damage. He has appt with pain specialist but not until next week. He refused hospice and home health care so my battle is watch him in pain vs overdosing him. Feeling helpless.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
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Gerri - I'm so sorry - I know it is really awful to watch someone you care about suffering in such pain. My son reached the point where the doctor refused to renew prescriptions for some of his meds, and he (Paul) had me going so often to the drugstore for Ibuprofen until I began t worry about the large quantity he was taking. I expressed my concern at the doctor's office and they told me that Ibuprofen can also cause liver damage. I was at the point where I took all the Ibuprofen out of his meds stash and kept them in my car so he wouldn't get to them, only giving him a few at a time within a certain period, but it hurt so much to see him asking me for something I couldn't give him. Maybe you could check with the doctor about the Ibuprofen, if he is taking it and what is the safe limit to take. I really hope someone else here can offer some better ways to deal with the pain Jim is having.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Sometime the pain is constantly there even with Percocet every 4 hrs, methadone twice a day and Morphine in between as needed. This along with Magic Mouthwash before meals and at bedtime. The pain lingers as a part of your being. I do my best to live my life as it comes and enjoy it. I tossed the morohine and lie with the pain by keeping busy and I bet your husband can do it too. It's a mind thing I think and he can control his mind and go one. Hell, I'm 75 and enjoy my life and live alone. Just do your best and be his cheerleader.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Call the doc and get the fentanyl moved up to 150. If he gets this changed today, by tomorrow he will be better. It takes about 24 hours to regulate itself. At my highest levels of pain, I was on 150 mg. I only stayed on that for about 10 days and quickly went back down. Jim's situation is much different, 150 would make him feel so much better. So glad he will be getting into a pain specialist soon.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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This is a tricky subject and Jim has a good point. There was a point I got to where I was going through pain meds. I was dialed up to 200mcg of fentanyl plus oxycodone(30mg tabs) plus tylenol and ibuprofen. I don't remember being in pain, just the need for the meds...I mean let's face it who could think on that much smack running through you?

The thing is, he may very well be registering pain that the opiates or gabepentin(neurontin) doesn't touch as some nerve pain can't be managed. If I were to give advice it would be to get a hold of some medical marijuana, it will help pain, mood, anxiety etc...and it will add to the pain meds w/o a chance of overdose and work on the neuropathy . It has no known drug interactions so it is safe and effective.

Just my thoughts, I'm not a Dr but I've had a special relationship w pain meds and have a perspective that most practicing drs hopefully will never enjoy.

I'm glad the appt w the pain specialist is scheduled.

Keep your chin up

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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While medical marijuana is controversial, more doctors are waking up to the reality that Eric S experienced.
The National Cancer Institute at the NIH has posted a special section on their web site about cancer and marijuana
NIH cannabis
While the DEA prohibits any definitive tests, NCI points out
[quote]Cancer pain results from inflammation, invasion of bone or other pain-sensitive structures, or nerve injury. When cancer pain is severe and persistent, it is often resistant to treatment with opioids.

Two studies examined the effects of oral delta-9-THC on cancer pain. The first, a double-blind placebo- controlled study involving ten patients, measured both pain intensity and pain relief.[29] It was reported that 15 mg and 20 mg doses of the cannabinoid delta-9-THC were associated with substantial analgesic effects, with antiemetic effects and appetite stimulation.

In a follow-up single-dose study involving 36 patients, it was reported that 10 mg doses of delta-9-THC produced analgesic effects during a 7-hour observation period that were comparable to 60 mg doses of codeine, and 20 mg doses of delta-9-THC induced effects equivalent to 120 mg doses of codeine.[30] Higher doses of THC were found to be more sedative than codeine. [/quote]

Former Surgeon General Dr. Jocelyn Elders said back in 2004
[quote]The evidence is overwhelming that marijuana can relive certain type of pain, nausea, vomiting and other symptoms caused by such illnesses as multile sclerosis, cancer and AIDS.[/quote]

Until the DEA allows real tests, all we have is anecdotal evidence and small studies like the ones noted above, but I'm with Eric S on this one.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Gerri Offline OP
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Thank you, I contacted doc and they increased Fentanyl up to 200, I put 150 on him, they also doubled his Oxycodone and gave us liquid morphine. Will keep the other in mind as well, not sure how I'd ever get that but when it comes down to him hurting would do just about anything to help him.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
Joined: Apr 2011
Posts: 267
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I hope the new meds help. I know it must be so difficult for you to see him in so much pain. Marijuana would likely help with the pain and increase his appetite. For me, it comes with mental/psychological side effects that I find unpleasant but I know it has helped a lot of people. I don't know if medical marijuana is legal in your state. If it is, a cancer patient should certainly have no trouble getting a prescription. Hopefully what you have now will give him relief from his pain.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
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Hi Gerri, it is really important to get the pain controlled, as cancer pain is unlike any other. I know what you feel that he won't get hospice etc, but speak with social services via the hospital where his oncologist is based. They should be able to help you get some cae in the home. If they can't help, you need to ask his/your GP for help. I tried on my own for 18 months, then ended up getting palliative care come to the house. That care stopped when my husband unexpectedly went into remission. Not complaining about that, they have told me I can call them when ever I want. Thing is, I had other people help me, and they used to tell him how I might be too. He didn't think about me then. We still have times that he doesn't think about me, but is more aware at how I am effected by our situation. I still struggle sometimes, 2 years later, and this site is my salvation, although I'm not on it every day. I am inspired by people on this site who have had to go through as a patient on there own, no caregiver, nothing. Ask for help. There are only 2 answers you can get - yes or no. Stay silent, no one can help. Lot's of love to you...Jeanna xxxx


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
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My husband had cancer under a wisdom tooth, all the way to the jaw bone, stg IV. Surgery 3/2003. Removed jaw bone, neck dissection, reconstructed jaw from leg bone with leg tissue to make a flap(new gums). Removed 57 lymph nodes, a spec of cancer in one only. He could not swallow therefore trach stayed in extra long therefore too late for radiation. Tube feeding for months. He presently has continuous pain for more than 8 years. He is on 100 mg fentanyl, 2 hydromorophone every 5 hours, vicodin 500 mg in between. Pain still approx a level 9 with all the pain meds. He has been in outpatient three times with injections to try to kill the nerve to no avail. It only deaden the left side of his face but not the pain. It only made the pain worse. Last year the ENT doc elected to do another surgery to remove the titanium plate just in case there was a screw touching a nerve. The surgery lasted 2 hours as the plate was installed 7 years ago and they did not have the "old time" tools to removed the screws, so they had everyone going through the archives of tools to find the right ones. Fortunately the leg bone had adhere to the jaw bone and they were able to remove it, but it did not do one bit of good. Only now he has a glass jaw.
He was 62 when this happened still working - these past 8+ years has put 15 years on him mentally and physically. The pain continues and I pray for him every day - pain is the most terrible thing to happen to someone - it takes their life away and is always foremost in their minds. He has never had a day without tremendous pain and the pain clincs just shake their heads. He has had accupuncture, lymph drainage specialist, tried everything possible. I am still searching for an answer. God bless all of you.

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