Severe pain

Pain Management
Shelly,
Sorry to hear about your difficulties. My Oncologists told me that the keys to my treatments were Nutrition and Pain Management. I can't believe you haven't been prescribed any pain meds? I was on the Fentanyl patches for approx 3 1/2 mos. Varying strengths as I needed at the time. Helped take the edge off tremendously. I was lucky and never experienced any localized pain. My mouth was full of radiation blisters/ulcers and eating was not possible.The Caphasol helps with dry mouth but doesn't provide any pain relief. My oncologist prescribed some sort of mixture of 3 OTC medicines with 3 Prescriptive medicines that looked kinda like Pepto Bismol. I would "swish it around" my mouth and then spit it out. It allowed me to brush my teeth without any pain every morning/evening. I was told it could be swallowed if throat pain was the problem. It didn't taste too good, though. Very "mediciney." Call your oncologist tomorrow and demand some relief! This crap is bad enough when you're numb to all the pain!! Don't quit!!! You're almost done. Your Oncologist should be able to help through this tough time! Good Luck.

Wish You Could've Been Spared the Pain
Shelly,
Double post = sorry

Hal61 said:

Lydocaine
Hi Shelly, hope your throat pain gets better. You're at a tough stage with ten to go, and the pain can be really bad now. If you can get through this part, I'm hoping it's peaking and will begin to lessen on its own. Fentanyl patches are general analgesics, like vicodin and percocet, and should best be used with a local. Your "magic mouthwash" should be persription, and often it's a reddish mix with lydocaine in it. It was the most effective for my throat, and it literally numbs it. Caphasol and rinses won't really help with the pain, but the lydocaine mix will. So get with the doc if you aren't taking a general pain med, and use it with the local. You need both at this point. I used vicodin and the patches, the patches seemed a bit stronger and were more helpful in helping me sleep. You'll soon get to a point where the pain will begin to slide down the scale, so make sure the doc isn't touchy about pain management at this stage. Good luck.

Hal

Pain Management
Glenn had very little pain until week number 5 then it was horrible. He got no relief from Fentanyl patches or liquid Morphine. He was sent to a Palliative care specialist who prescribed liquid Methadone which worked like a miracle.

Ask for a Palliative care consult. These doctors really know things about pain relief. It's not totally unusual for one narcotic to NOT work and another to work better.

Glenn used the liquid Methadone for 3 weeks (he had 6 weeks of radiation) then weaned off the Methadone and had no further trouble with pain.

The magic mouthwash was also helpful once he started swallowing it.

Good luck, you're almost there. We're pulling for you.

Lisa

Hondo said:

Shelly
Have your oncal doctor look at you before your next rad treatment; don’t be afraid to question him about your treatment and what you need to do for the pain.

Shelley
I was given Lydocaine & codiene liquid & that seemed to help a bit. I am sorry you are going through so much pain! You need your Dr's help with this.
God Bless
Roz

Noellesmom said:

no pain meds?
Please call your doctor immediately and find out what is available to you, Shelly.

I agree with the others: you should have pain meds at your disposal and you should be using them.

Let us know.

I remember about a week like that
Shelly, do you have a feeding tube? Hopefully you do and can now utilize the tube until things get better. Please don't quit as you've come to far. You can take a few days off if absolutely necessary but the sooner you get through this week the sooner it will all be a distant memmory. Pain meds are a wonderful part of managing this and have their place in moderation. The problem is they bring on a whole new set of problems with constipation which can be worse pain. Just get through it anyway you can, eat less and use the pain meds as needed only. One step at a time, one step at a time. You're not a quitter!

DO NOT QUIT!! YOU NEED A PAIN MANAGEMENT PROGRAM
Do not quit!!!!

Go see you Doc and demand a Pain Consultation. I am almost 10 weeks post treatment and have been on Fentanyl Patches and Liquid Codiene for as long as I can remember. This worked quite well as long as I was able to manage the breakout pain. I am currently stepping down from the fentanyl, as if you go too fast of just stop taking it, you will have violent withdrawl issues. I have not needed the Codiene for a long time.

BEST!!

Mike

D Lewis said:

Shelly
The last week or so of treatment was definitely the most painful for me. Do NOT quit. You can get through this. You are on the home stretch now. Your doctors will best know what to prescribe for you, to help ease the pain.

Sending healing thoughts your way. The finish line is in sight for you.

Deb

Fentanyl
I cannot believe you made it this far without it. I was on the patch by my third week. I couldn't eat anything by 4/20 and I started 4/6. My doctors and staff saw how bad my mouth was and told me to go on the patches. I was on 75 mcgs for quite some time. It should help you. Just make sure you wean off the meds by getting a lower dose when you feel you are ready to step down. Also keep track in writing when it's time to change your patch and make sure you do it.

The fentanyl should give you relief. Hang in there it sucks. You can make it through.

Check for thrush and then manage the pain
Others have said this and I want to second - thrush can be the most painful part of the process. Diflucan is the only thing that will touch it if Nystatin is not having an effect.

This is the point where we really needed Magic Mouthwash - it gives you 10-20 minutes of relief so you can eat/drink. They can also just give you viscous lidocaine (the main ingredient in the mouthwash) but the Benedryl portion of the recipe seems to help with swelling.

The Fentanyl patches are great if you can tolerate narcotics (Doug can't - projectile vomiting city). Others folks mentioned here are great, such as liquid methadone. Some also come as films that you can dissolve under your tongue (even less swallowing).

Consider asking to check in the hospital for a few days for IV liquids and drugs. As long as you haven't lost tons of weight, they'll keep you a few days (it will have to be where you are getting radiation). Good part is that you don't have to drag your own butt to radiation. Bad part is that you are in the hospital - many folks don't find that a restful place.

Since you are swallowing less and taking more pain drugs, be very vigilant against constipation - it can cause even more nausea and require undignified and uncomfortable procedures. Actually, a double dose of Mirilax in 4 oz of water is easier to swallow than plain water, because it is "smoother".

kingcole42005 said:

Thank you all for you help
I saw may doctor yesterday, she seemed to think that changing the type of morphine I'm on will help and take the other for breakthrough pain. I was really freaking out, to be fine one moment then the next not be able to swallow, ouch! I do have magic mouthwash and I use it, but for some reason it does not numb the pain in my throat. Dr. Mary I did have thrush on my tongue, but my RO said that it was very unusual unless your immuno compromised? She asked if I was diabetic, which I'm not. I'm only drinking those slimfast shakes and I can get down about 3 to 4 a day. Tomorrow I'm going in for IV fluids, I've been feeling very drained lately. Zero energy. Thanks, again. Shelly

glad you saw the doctor
but from what I've read, thrush is very common among those having H&N treatments.

And why slimfast shakes, kingcole? You need to keep your strength up and I'm thinking there are much better liquids for you than that. You are consuming minimal calories and that's not good. This is not a good time to lose any weight you can keep!

My husband consumed, consistently, about 3500 calories a day and still lost thirty plus pounds.

Please be careful. Glad you are getting fluids today but you need to discuss calorie intake with someone, maybe the onco nurse or staff?

Don't want you to end up in the hospital!

kingcole42005 said:

Thank you all for you help
I saw may doctor yesterday, she seemed to think that changing the type of morphine I'm on will help and take the other for breakthrough pain. I was really freaking out, to be fine one moment then the next not be able to swallow, ouch! I do have magic mouthwash and I use it, but for some reason it does not numb the pain in my throat. Dr. Mary I did have thrush on my tongue, but my RO said that it was very unusual unless your immuno compromised? She asked if I was diabetic, which I'm not. I'm only drinking those slimfast shakes and I can get down about 3 to 4 a day. Tomorrow I'm going in for IV fluids, I've been feeling very drained lately. Zero energy. Thanks, again. Shelly

pain
Shelly, I am so sorry I wasn't on when you were in such pain...I had the same thing! my dr changed my meeds a couple of times and even the magic mouthwash wouldn't always work. It will get better. I don't know if it will help you or not, but I found that I had the worse pain about three days after any new sores showed up, or 3 days after I noticed a new problem. it would get better after the 3rd day. I was also told by my dr to not wait if there is any pain, to call right away and she would have added in a patch (especially when it was hard to swallow). immune compromised...I found out after treatment that radiation treatment can make you immune compromised. I have gotten every cold of every person I have been in contact with. order some scandi shakes...or mail me your address and I will send you some I have left....they have tons of calories, so each swallow you can make is getting you a lot of nutrients and calories...the more calories you can consume the better you will heal, especially if they are protein rich calories.