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Joined: Nov 2009
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he doesnt have to be in this much pain. he definately needs better pain meds and i suspect that since he is not a "complainer" he isnt letting the docs know exactly how much pain he is in. that is where yall can step in to be his advocate. let the docs know exactly how much pain he is in, and all of his severe symptoms. the docs cant help if they dont know....
i literally had to drag andy out of bed and make him go to treatments...still do. do what u have to do, ur dad is in a bad place right now, he needs yall to help push him thru. this is when it gets tough on caregivers, but u can do it.


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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I came close to quiting a couple of times myself, but thought of my own "Daddy's Little Girls" and had to do everything I could to fight this disease. It was hell, but it was worth it to get to see my grandchildren grow up.
Pain management is critical. A very wise oncology nurse told me that my cancer wouldn't be cured any faster by my trying to tough it out. I took the pain meds and it helped immensely with my quality of life through the remainder of treatments. I was on the Duragesic patches for the baseline pain, supplemented with liquid morphine just prior to eating (i didn't have a PEG).
The pain meds do have a downside,in that they will frequently lead to terrible constipation... PAINFUL constipation, so they need to be on top of that.
I too was a stubborn old "non-complainer". I got over it, and accepted any form of help that was offered.
I wish there were some kind of medal I could award my wife for putting up with me and pushing me through treatment and recovery, but she seems satisfied to still have me around six years later.
Go to his appointments with him if you can, and make sure his doctors know what's going on. It is hell right now, but in the long run, you (and he) will be glad he saw it through to completion.


SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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Thank you all for your responses. Dad did finish his last week of radiation. The doctor did cancel his last chemo session saying it was not necessary since chemo essentially 'cripples' cells for rad. to 'kill'. I'm not 100% sure if the dr did that solely for that reason or if it was some sort of comprimise but Dad had 3 radiations scheduled for after last chemo so he finished out his last 3 rad minus the chemo.
Anyways, I intially logged on to ask person/s (who are at least 3-4 months out from last treatment) the following questions:
-preface-(I know it differs from patient to patient) When do you typically start to feel the very beginning of getting better post treatment? Dr. says it doesn't get any worse w/ last 3 treatment but like a sunburn you will feel worse 1-2 weeks or so then you feel presently. I did mention to Dad in front of Dr. if he may need additional pain management and they both dismissed it. But after reading responses I'm more convinced it would help. Is it to late to mention again? How long do you need highest pain management? Do you begin to come down on meds a couple months after? a year? or always have it no matter how long it's been? (i'm not asking out of concern for dependency b/c isn't comfort more important?) On that note: is there a heads up he should know regarding physical dependenmcy where a patient would need to switch up if stops wprking as well?
Sorry if this is too long...should I be splitting this up in seperate posts for future refernce


Last edited by daddy's little gir; 02-03-2010 02:01 PM. Reason: accidently hit send/post

not sure of exact dates and medical terms but for now some info : dad age 67 dx 11/09 tongue cancer st IV T4N2Mo(we hope, b/c no pet scan on chest ) tongue partial massoc, neck dissection 12 pos nodes and removed, 7 week rad w/ 5 chem tx, 2/2/2010 finished tx and due for first follow-up scan 3/1/10
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About 3 weeks after treatments have stopped your dad will start to feel slightly better. It takes a while, slowly he will gain strength.

I had my 3rd round of chemo canceled too and so did a few others here.

Pain meds differ so much from patient to patient. My guess is that after 2 or 3 months he should be free from the meds. That also depends on what he has had done, I dont know about any surgeries, etc.

Please add a signature line so we can better answer your questions. Its in my stuff tab, then hit profile, its the block at the bottom of the page.


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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I'm three months out from rad. I think Christine hit it on the head time wise. Pain management is fairly personal but I was worried about the long-term dependency issue and wanted to get the pain meds done with as fast as possible without to much pain.

I was encouraged when I stopped the patch and then I took less and less hydracodone each day until I just stopped without a problem.

I had never been on pain meds for more then a few weeks (broken leg) so I did have concerns.

I did not have surgery so that may be a factor.

Kelly


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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