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Kathi G #88239 01-16-2009 08:36 PM
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Geri,
the reason you have 2 meds is this.

1. The Morphine sulphate is a fast acting opioid for break through pain. Fast acting means it reachs full effectiveness in about 30 minutes - even faster if you have liquid form and faster than any other narcotic. Vicodin takes a full hour and is classified as a medium strength painkiller.

2. Fentanyl is for long term pain relief (pain expected to last a month or more). Use the morphine when the pain threshold exceeds that which is maintained by the Fentanyl. Fentanyl is the strongest synthetic narcotic there is - 100X more potent than Heroin. Follow the directions for use exactly and NEVER apply a damaged or torn patch. If all of the contents were to be released all at once it could be fatal. It is safe when used as directed.

Believe me you'll be glad you have it as treatment progresses. They always start with 1 25mcg patch and if that isn't enough then they will add another patch. I didn't need more than 75 mcg but some cancer patients have had prescriptions up to 500 mcg (like pancreatic cancer). We rarely see persons here using more than 150 mcg. DO NOT add more patches without specific clearance from your doctor.

When you start using more morphine, they'll up the Fentanyl dosage using a titration formula. Keep a log of all meds, food, water, temperature, etc. When you visit the doctor tell him what the pain is on a scale of 1 to 10 with 10 being unbearable and also the consumption rate for the morphine. Properly managed, pain should be 3 or less.

I would ask for a "swish & spit", "pink magic" compound solution as well. Typically lidocaine, morphine and benadryl. Even if he has a PEG he should try to swallow at least water to keep those muscles from atrophy. This will numb the mouth and allow him to swallow. Don't swallow it as you don't want to numb the gag reflex and aspirate liquid into the lungs.

Like Kathy I had Vicodin in the beginning when the pain was moderate but it is a liver killer if you have hep C, which I do.


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)
Gary #88241 01-16-2009 08:45 PM
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Steve,
that's an off-label use. The patches are supposed to be replaced every 72 hours. The therapeutic dose in your blood is exceeding the manufacturers directions for use.

http://www.rxlist.com/duragesic-drug.htm

One must have a doctor planned, step down, phase out plan from Fentanyl or convulsions and death could occur. 6 weeks is about an average time to minimize the withdrawal. Properly done, it should be mildly uncomfortable for about 3 days.

I stand corrected some patients are on a 48 hour interval - ask your doctor why? It's not common here unless you are in some whoop ass pain!

Last edited by Gary; 01-16-2009 08:53 PM. Reason: information update

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)
Gary #88242 01-16-2009 08:59 PM
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Like David I had the buzzing and ringing and did loss some high frequency level hearing doing the 3x method.They did do hearing test before and after each treatment. It was agreed by all including me upfront to be aggressive and risk the small odds of hearing loss. I lost some hearing ( I have not noticed) but together with rad appears to have killed the cancer - good trade off. There never seems to be any sense of this stuff.....I had no real discomfort from Cisplatin, no vomiting, etc but had some hearing loss - go figure. The ringing/buzzing almost drove me nuts.

Pain -in the middle I took Advil, at the end some Oxycodone, usually at night. Even with that I had constipation issues, that can be a pain in the ......Take the stool softners


Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
Gary #88260 01-17-2009 08:24 AM
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Geri

The pain medications were the only bright spot in my entire TX. Without them I would not have been able to swallow every day and drink my Ensure Plus nor would I have been able to drink all the seltzer water to keep hydrated. Oxycodone pills just were not enough, so I ended up on the Fentanyl patches also because of the tremendous pain from the radiation burns and yellow crusted neck sores. Both my RO and MO noted that the 72 hour replacement period on the drug package insert did not comport with a single one of their patients experiences. They started me right off with a 48 hour replacement timetable and by the end, I had two patches and changed one each day. I really hope your husband does not need so much, but don't hesitate to accept this help.
Of course it helped that in my hippie days I had substantial experience with Percocet, Qualudes, etc so I knew what to expect. Even so when I foolishly went "cold turkey" on the patches, I found out why they had prescribed extra oxycodene for me - but it only took two weeks to wean off to zero pills.


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
Charm2017 #88267 01-17-2009 12:13 PM
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True enough Charm, previous hippie day experience did help me also in knowing what to expect from the pain meds. I really do not think that I would have been able to work as long as I did without them, although I have difficulty remembering most everything from July forward. smile

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Gary #88271 01-17-2009 02:40 PM
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Yeah Gary it was the doc who had me go to 48 hrs. If I had it to do over again, I would have just dealt with the pain better and stuck with 3 days, it might have been easier to get off them. I should't say might....I'm sure it would have been easier...



Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
Steve J. #88343 01-18-2009 02:22 PM
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The other important advantage of medication administration via patch is that the level of medication in bloodstream stays consistent. It also takes a certain amount of time to initially build up to a therapeutic level (I don't remember how long).

My husband needed 150 mcg at end of tx, plus liquid morphine evey 3-4 hrs. Without it he could not have functioned or swallowed at all, as Charm also mentioned. I would not hesitate to use this method, rather than looking for less potent pain meds. Regular use of stool softeners and Miralax worked to avoid major constipation for him. His dosage was stepped down without problems.

* Liquid morphine burns if taken by mouth - I diluted and put it in peg. Geri - you mention crushing pills. Crushing too many pills or adding liquids which are not formulated for peg tubes can cause clogging over time. I know many people do not worry about this and have no complications but it is a risk. I think this is discussed on this site under feeding tube info. We ran into problems with peg while crushing a very hard anti-viral med, after dx with shingles. Lottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
travelottie #88362 01-18-2009 07:09 PM
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Thanks everyone for your comments. We've had a great weekend, taking 2-3 mile walks and going to REI. Almost like a normal Sat and Sun. for us. I do have a few more questions.
We are waiting for the Emend to be ready to pick up at our pharmacy. Are there any unusual side effects? I read on the internet about hiccups and hair loss. I'm thinking that the hair loss must be because of the chemo and not the Emend, but if anyone has any info about that, please post. Also, Decadron was recommended with the Emend and Zofran. This sounds like a good combo to try. I'm sure Richard won't feel well after the chemo, but I'm obsessed that we do everything possible to make it easier then the first time.

I would also like to ask anyone about how long it took after treatment ended before you started to get back to some normal activity. Not full speed, but able to start to do some things. We are avid hikers and bike riders and I remember David posting about his bike riding. David, when did you get back on your bike, even around the neighborhood? I know everyone is different, but Richard is in such good shape now, that I'm hoping that this will bode will for his recovery.

I'm also wondering about what the symptoms of BOT SCC with no nodes involved? If the node next to the TI mass hadn't popped up, we wouldn't of known anything was there. There were no symptoms and no visual evidence until the doctor did the biopsy. Even then, she had to really look to find it. Luckily, it was under a cm. but why would the node pop up if the tumor was so small? Also, I noticed that many people have the chemo even if the nodes are clean. Why do they put you through that if no cancer is detected in the nodes?

Thanks so much for any responses. I've learned so much here and will keep asking questions as we go through this difficult journey. Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
Geri #88366 01-18-2009 07:22 PM
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Hi Geri,
My husband Ron had the same tx plan as Richard. Cisplatin x3 along with 7 weeks of IMRT. We tried many antinausea drugs. He did have some luck with Compazine in the beginning, but soon progressed to bigger guns including Kytril, which costs $100 a pill! Ron does not have prescription coverage, but thankfully we were given enough samples to see us through. He also got Aloxi before each Chemo, to help with nausea.
As your days progress, you will have more problems crop up than you know. It can be very scary, I know. Please make sure you are taking care of yourself too. If you need an anti-anxiety, do not hesitate to ask for them. They saved me then and I am now on them again.
If you would like to read our story from the beginning I do have a blog on the web. Just click on my name on the left and select Homepage. You can read what we went through. And please don't hesitate to contact me either here or my email if I can be of help at all! We are all in this together. I know that OCF saved my sanity more than once.
All my best,
Lori


Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
lorileona #88370 01-18-2009 07:37 PM
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Geri,

I'm a little bit younger than your husband, which may or may not make a difference, but I never stopped some level of 'normal' activity. I'm not much for exercise, but I don't think I ever stopped walking, I did laundry for both me and my Mom, my caregiver during treatment as well as doing dishes and other household stuff. I also continued to care for my pets, with my Mother's help. I slowed down a bit, but never became bedridden or unable to care for myself.

Oh, and as far as Emend's side effects, I don't think I had any at all. Its fantastic stuff! My sister had good results with it during her treatment for breast cancer as well.

Last edited by margaret_in_ma; 01-18-2009 07:42 PM. Reason: needed to add some thoughts

Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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