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#38106 01-23-2005 11:49 AM
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Jen
Right lady kick up the butt time.YOU ARE NOT A DEAD WOMAN WALKING. you are Jen with OC. so what, so are we all.Shame and blame has nothing to do with it, I read articles that say I shoud blame my life style, stuff that for a game of solders, I'v been moderate in things and a lot of bloody good it's done me, but I'll fight every last bloody inch of the way, so lady in 5 years time you and me had better be here still moaning, or I'll have to kick your butt well and truely.
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#38107 01-23-2005 02:32 PM
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Jen,

I'm lost here, what type of surgery have you had?

Glenn

#38108 01-23-2005 03:11 PM
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Hi Jen,I did use morphine to reduce my pain for quite some time. First I took it orally and then I had the IV pump during my 3 week stay in the hospital during treatment. I guess it was effective on my pain problem because I didn't feel any real pain during treatment. But it caused me great problem of constipation and skin allergy. I had to take antibiotics for 3 days to cure my allergy. I didn't experience any delusion or paranoia you mentioned. If you have sleeping problem, maybe sleeping pills can help you because I have been on these for over a year to help me sleep. You may also need some psychiatric counselling if you have negative thoughts. Just some sharing.
Karen.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
#38109 01-23-2005 04:02 PM
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I'm sure my negative thoughts were from the drug. When I'm lucid, I don't honestly think people are "out to get me".

The lack of sleep right now is a pain issue. Surely these things might be resolved tomorrow. At least I'm going to give it my best attempt to resolve them tomorrow. Hopefully weekends won't always be this "scary" It's like flying without a net because the you have to be away from the people with your records.

Not gonna work myself into a frenzy. I need to start an online diary just so I don't hassle you people to the point of annoyance. LOL

#38110 01-23-2005 11:06 PM
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A little more about pain medications. There are 2 basic types - "long term" and "short term". They are used together for cancer patients. "Long term" refers to long acting pain meds that mask the overall constant pain threshold to a manageable level. Examples of these would be Fentanyl (AKA Duragesic time release 72hr pain patches). "Short term" is typically used for "breakthrough" pain that goes over the threshold managed by the "long term" narcotics. Morphine is very effective as it starts to work within 15 minutes for that purpose. As others have mentioned, we all react differently to pain meds and some can't take morphine and others, like myself, took a lot of it with no problems. There is also an adjustment period with pain meds while the brain chemistry is actually altered and rebalanced to accomodate it. So your intitial reaction may differ vastly vs. after you have been on it for a while. All pain meds will bring on constipation issues. Many times this can be the worst part of the whole cancer treatment experience. Work closely with the nutritionist.

It's ok to ask for "sleepers" too, if sleep is a problem.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#38111 01-25-2005 10:48 AM
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Jen,

I, too, had a lot of pain from the PEG tube. I guess we are the only two. I, too, have some bizarre things happen with morphine. You can tell the doctors you don't want morphine and they can find something else. The nice thing about the patch is that the loopiness from the morphine does not happen. It keeps the pain in check, is time released and you bypass the bizarro world. Is it a winner or what??

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#38112 01-28-2005 10:48 AM
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Hi Jen, The important thing is discuss this pain med issue with the surgeon, pain management Doc, and the anesthesiologist. Its amazing how much better my last surgery was, they controlled the pain, and the throwing up which for me was an allergy to the anesthetic. Speak up, this is an absolute rule for all cancer patients. Take back some control. My chart always says "No Morphine."

wink


Cathy

SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
#38113 01-29-2005 04:03 AM
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The Fentynal pain patch 75 mg is now a big NO in our books. It made David so loopy! I had to take him to the emergency room because I couldn't wake him up. They had to give him Narcaine (spelling??) to wake him and the ER removed the pain patch. Time released?? IT was way too strong. Six hours after removal, David finally came back to me in a logical normal state. I can't believe that I was putting it on him every 3 days and not realizing that it was a huge problem. I was just following doctors orders in an attempt to control the terrible pain. It's a subtle patch that makes you forget that it's there. It's frightning to see the difference from when the patch was on and when it was removed. I don't blame myself...I just didn't know enough. We learn as we go along.
He also does not remember ANYTHING while he was on that patch. No memory of his parents visiting, no memory of the first chemo infusion, the ER visit, etc.

In regards to the peg. David had some considerable pain a week after the peg was inserted. We thought it was due to the extra loss of weight that week. He lost the body fat surrounding the incision site and there was no protective fat to stop the pain. It has gotten better now that we have started a regular feeding regime.

David has changed his chemo routine from once every 3 weeks to once a week. It's a lower dose in shorter intervals. We felt that waiting 3 weeks was too long with the tumor growing under his jaw. The side effects are less and there has been no nausea. The pain had returned but at a lower level which is another reason that we wanted the chemo once a week. He now takes as low a dose as possible to keep the pain under control. Percocet, Oxycontin and Oxycodone. I hate all that stuff. A necessary evil?

We are iced in here in Georgia. A freezing rain occurred last night. Very unusual and dangerous especially for us. We are staying in-doors like good doobies. I can't afford to get hurt in this stuff.

Brenda


T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
#38114 01-29-2005 01:34 PM
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Good to hear your experience, Brenda. I told everyone this week from the chemo, radiation and surgery department that I was freaked out completely on the morphine. I'm hoping that makes my chart, as I've told every medical professional all week long. People keep reminding me these doctors are suppose to work for ME. Unfortunately, I don't desire to be a monster, but I'm going to have to get my perspective straight.

All of the input here has been fantastic. I'm ashamed of myself if I'm not in control. Memory loss bugs the heck out of me.

Jen

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