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Joined: Jan 2010
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I agree with the fentanyl pain patch suggestion. They told me about 10 days ago to put one on and use them until this is over. Almost instantly I went from being barely able to eat to eating most anything I want. I am now 10% finished with radiation and the side effects have not started. I will not live with that much pain again. They will increase the strengh as needed and then I have additional meds for breakthrough pain.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
Joined: Mar 2010
Posts: 126
Elianne Offline OP
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Hi Seda Bug,
We will keep the fentanyl patch in mind. Right now, Gordon is still
eating soft food and keeping pain under control with extra-strench
Tylenol. We have the codeine on the back burner until we need it.
He is now 1/2 way through his radiation and has had 2 out of 3
chemos.
He wondered if there are any side effects from the patch that you've
noticed, ie. constipation etc.?
Thanks, Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Because I was warned about the constipation I started using Benefiber and so far no problems. I don't know any side effects. I have only had one week of treatments so not too many side effects yet. But then I wonder if maybe the patch is taking care of any pain that might be there.
Also, I believe that Tylenol taken too much or too often can be very hard on the liver but of course you might want to check with his Doctors about that.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
Joined: Jul 2009
Posts: 1,399
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Anne, I was on a Fentanyl patch for about the last 2 weeks of my RT. I was also chugging 12-16 Percocets a day (that is, Oxycodone for most of the time - that's Percocet minus the Tylenol). I always had constipation issues and they reached their sublime level of agony about a week or two after I'd finished treatment and had gotten rid of the patches, but was still on the Oxys. So perhaps it was the patch that sent me over the top. Still, if you need it, you need it! Hate to be so graphic but rubber gloves were the only thing that helped me eventually.

It's tough, and will get tougher... but you'll both get through this. Your husband is lucky to have such a devoted wife!

David Dos


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Elianne Offline OP
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David2,
Gordon is now on the Fentanyl patch - just put the first one on today. They seem to start you on 25 mcg. and tell you to put on a 2nd patch after 24 hrs. if the first one isn't working too well. Apparently he's supposed to keep taking the T3s every 4 hrs. until the Fentanyl kicks in. Then he can continue the T3 three times a day for breakthrough pain as needed. I hope it's going to be enough to get us through the 4 day long week-end.

If you were chugging 12-16 oxys. a day, the patch must not have been nearly enough for you. Wonder why they didn't up the patch dosage - or did they? I guess there is a limit on how much they can give you. How many mcgs. did you end up taking?

G. has always had sort of the opposite of constipation, but I know all about the rubber glove routine, as he ended up in emergency with a severe case of it (constipation, that is) from the drugs after he had a hernia operation about 15 years ago. The poor e-room Dr. had to dig it out with the rubber glove. I don't know who I felt more sorry for, G. or the Dr.

G. has an internal hemorrhoid that's giving him hell, so constipation is the last thing we need. We have 14 rads. and 1 chemo to go...

Doesn't sound like they gave you anything that worked for the constipation, which is awful, really. Talk about adding injury to injury!


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Elianne Offline OP
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Seda Bug,
How many mcgs. of the Fentanyl patch were you using?
As far as fiber goes, (referring to your next post), because of the chemo,
they tell you not to use metamucil or any similar product as it can cause a hard wad of stuff in your intestine that can't move through. Apparently the chemo causes motility to slow right down and if you get dehydrated that can exacerbate the problem. They seem to prefer Senokot and Colace. at our clinic and have a protocol for that.
There is a limit for acetaminophen - I think it's 4,000 mg./day. Anything more than that is bad for the liver apparently.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Joined: Jan 2010
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Only 25 mg on Fentanyl. Other than when I am trying to go to sleep and there are no distractions then twice I have taken 1/2 a dose of the Hydrocodone. I have not taken any other pain meds over the counter or script.

I am not having Chemo just Radiation. I did meet with the Nurse Oncologist on Tues and she had told me to use a brand called Miralax. She said as long as this works go with it. I am drinking a lot of everything decaf peach tea, juice, water and ensure.

Finished #10 today and other than some swelling in my lips I am in good shape. Yesterday the mask pinched my lip so bad I though I was going to scream. But they adjusted it today and it was Way better.



55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
Joined: Mar 2010
Posts: 126
Elianne Offline OP
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Thanks Seda Bug.
I just had one other question - how long did it take for the Fentanyl to kick in the first time you put on a patch? We were told 24 hrs. and are anxiously awaiting 3:30 this afternoon for some improvement. If there isn't any, we can use a 2nd patch.

Radiation is bad enough, but adding chemo to the mix increases the mouth sores and pain. The Dr. we saw yesterday referred to the treatment as "barbaric", a word my husband has used more than once, and I'd have to agree from what I've seen so far.

I hope you continue to be in good shape and have good pain control - that seems
to be key.

Thanks to everyone who has responded - you are all so helpful. Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Joined: Jan 2010
Posts: 142
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The first time I used the patch it was when I came home from the hospital. I didn't think it ever worked. But this time I used it going in and while I can feel the ulcers forming I am in very little pain. I really think the key is to not let the pain get bad because it seems to take WAY more pain meds to stop it than
just staying on top of it. In fact they told me that if I decided I was doing good not to take the patch off that I would regret it. Knowing what I know now if that patch has not helped put the other one on now or use the break through meds. I had a VERY hard time getting the use of the pain meds through my head because of a family member who has been addicted to pain meds for most of her adult life. But they swear that when you use them as prescibed and for pain there rarely if ever see a cancer paient become addicted. I am sure there are others here that could speak better to that. But I refuse to go through
weeks of non stop pain,this is hard enough as it is.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
Joined: Mar 2010
Posts: 126
Elianne Offline OP
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Thanks Seda Bug.
We didn't think the patch was going to work either. After having it on for 24 hrs., and taking a T3 at 2:00, Gordon was getting breakthrough pain at 5:00. We put the 2nd patch on and I went to pick up the morphine presc. from the pharmacy.

However, by the time I got back, the pain had eased off and he hasn't had to use the morphine so far (9:27). Maybe we just needed to wait it out for a few hours more. Now I'm not sure if we needed to put on the extra patch, but he couldn't go through that level of pain again. He's pretty woozy and has gone to bed.

It is hard to understand how pain meds. work when you're new to the whole thing. We tended to think that first you have pain, *then* you take the medication. But now we understand that regular doses of the appropriate pain meds. prevent things from escalating out of control. We've had the same problem that you did - worrying about addiction.

The clinic gave us a hand-out that tries to dispel the various myths about taking narcotic pain-relieving drugs, including:
- if you're given morphine, it means you're dying.
- if you take narcotics to soon, there won't be anything else when the pain gets worse.
- side effects from pain meds. are worse than the pain (um, I don't think so!)
- asking for pain meds. makes the medical professionals think you are weak.
- pain meds. cause addiction.
- cancer will always cause a lot of pain.
etc.
Nobody should have to go through weeks of non-stop pain. After observing the effects at close hand now, I can see how this kind of pain devastates the spirit and makes it really difficult to cope with anything.
Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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