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Joined: Nov 2013
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Just be careful that he has a doctor who is knowledgeable on how to ween him off of dilauded.

I tried to be a hero and went too fast. I ended up in the fetal position for a weekend sever flu like symptoms sweating/chills and vomiting. There were several things going on at once and I didn't tie it in my head that I was going thru withdrawal until it was over.



Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
Joined: Mar 2014
Posts: 286
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We're in a difficult area of pain management beyond most of our experiences. We can't advise anything about medications, especially the very strong stuff. We can only pass on our experiences with what we had.

There is a fundamental principle in pain management about "keeping the bath hot". If you're sitting in a bath and trickling in hot water regularly it stays hot. If you let it go cold you need to put a heap of hot water in and its very uncomfortable while the temperature stabilises. Thats how pain management was described to me. You have to keep on top of the pain by having the right dose taken at the right time (eg 4hrly) and not wait for the pain to take hold.

He should not be trying to be a hero, be worried about addiction, or any of that crap. That is a problem, if it becomes a problem at all, for another day.

Pain is worsened by distress. So as well as the pain itself, you have the fear and worry about the pain. Do your best to remain calm and positive around him. Make sure he feels heard by the doctors, but don't fall into arguments with them, its extremely distressing when you lose faith in your medical team.

Lastly make sure he is eating, drinking and toileting properly. Pain and the meds play havoc with all three, at a time when you need all three to be working properly.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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OZ, I was in no way trying to say don't take the pain meds, and hope I didn't come off that way. I needed them, and sometimes probably something stronger.

You're right, he shouldn't worry about addiction until much later, but withdrawal can be avoided and that's all I was trying to point out.




Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
Joined: Mar 2014
Posts: 286
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Not at all Brian, the hero reference was not in response to you, it was a more generic comment. I think we've all tried to tough it out, I think its a natural part of the fight.

And then again, we ARE heroes! Patients and carers alike.



Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Nov 2014
Posts: 66
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Posts: 66
I hope you've been able to get your Dad's pain under control. I'm having some issues with pain and came across this thread. We're having a hard time getting a prescription filled because they are out.

One tip; Always count your pills in front of the pharmacist at the counter before you leave, we had some taken once.

It's a shame that people abuse these drugs. It shouldn't be so difficult for those who really need them can get them with out so much trouble.

I am finding some easy movement and light lymph massage is helping too.




HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
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