Hi all, I did not mean to make light of the pain from the canker sores. The RO observed that they didn't look the same as the mouth sores caused by the treatment. We obtained some medicine from a compounding pharmacy to apply to the canker sores and it has done wonders. They are much better and Richard is able to shallow and eat without much discomfort.
My daughter, who has been plagued with canker sores for years, swears by this medicine that was recommended by her dentist. It is made up specially for each patient. So, we will go with what works and take each day as it comes. There is also a topical medicine the compounding pharmacy recommends for radiation burns that we are going to have the RO to prescribe. We will use it along with the aloe vera gel. Richard will go back on the patch when he feels he needs to. He will be very careful not to let the pain get ahead of him. He's not against the pain meds, but doesn't want to go on them sooner than needed. Thanks for all your comments...Geri

Geri,
Many of us here wouldn't have survived without the miracle of the Fentanyl patch. It takes 24 hours to reach it's full therapuetic dose in the blood - that is for the first patch. There will be enough residual effect that you will not notice when subequently replacing patches every 24-72 hours, whatever your doctor prescribes. The patch should knock the pain threshhold down to a "3" or less. In instances where there is breakthrough pain, then that's where the morphine comes in. It is the fastest acting narcotic on the market today. 1/2 hour in tablet form and almost instantaneously in liquid form. If you find yourself taking too many morphine pills or liquid morphine each day (like the maximum allowable amount) then the strength of the Fentanyl patch must be increased. The doctors have a specific method for this called a titration formula. Never adjust the meds yourself -always seek clearance from the prescribing physician first. Breakthrough pain may occur while doing simple activities such as attempting to eat or drink water. I also took breakthrough meds when I knew I was going to have a procedure, such as an exam that day. I always took them in advance of the exam to insure they were at full potentcy during the procedure. There is no need to suffer when you don't have to and proper pain management is a basic patient right! You should also have "pink magic" swish & spit topical pain killer on hand, especially for eating and drinking.

Some might say "why bother - I have a PEG tube" well the fact is if you don't use it you lose it. Every effort should be made to continue to swallow food (even liquid, like Carnation VHC) and water orally to keep the muscle groups functioning. By all means use the PEG for the heavy lifting, if you have one, but don't stop attempting to swallow normally (even if it is just sipping water). You may end up with swallowing issues, post Tx, that can take a long time to rectify. A few of us here went without a PEG (myself included and I safely say that out of the 5,800+ members, I can count that number on ONE HAND)) and in and many foreign countries this is the norm. The truth is that many here simply would not have survived without one and there has been plenty of discussion about this in other areas of the forum. This is a controversial topic so to those of you thinking about it - don't hijack this thread with a debate on to PEG or not. I merely mention it in the context of pain mitigation for swallowing orally.

Caution: Follow the directions for use, to the letter, when using Fentanyl patches. NEVER use a damaged or torn patch. It is the most potent synthetic narcotic ever invented.

Always report, daily, to the doctors what the pain threshold is. My CCC asked me every day but some don't. Use the numbering system 0-10 with "10" being unbearable pain.

Keep a log of all medicines, food, and water ingested.

It can take a short perioed of time to adjust to some narcotics and there have been a very rare few instances, on the forum, of individuals having an unusual adverse effect so they may have to fiddle with different drugs to find the correct ones for you. There is also a morphine time release patch available as well. Some patients will get Oxycontin and even Methadone. The latter we see less often here, but is is listed in the NCCN Oncology Practice guidelines for adult cancer pain management. If you explore the resources setion of the main site there is a link to the NCCN guidelines. I am no longer providing the link because there is a wealth of information on the home site and I wish to encourage every person coming here to explore the main information pages. Many questions, frequently seen on the forum, are answered there.

To avoid side effects from narcotics, mainly constipation, which will also cause nausea due to the interuption of homeostasis, be sure to stay hydrated and speak with the nutritionist about methods of mitigation. Constipation is a nasty side effect and can make the cancer adventure a very miserable experience indeed. Trust me on this - I know from first hand experience.

When the pain has passewd then you will need a medically crafted phase out plan to avoid severe withdrawal symptoms and possibly even convulsions and death. NEVER stop taking "long term" narcotics abruptly.

Some here have mentioned fear from addiction problems. This RARELY happens when people NEED pain management (I wish I COULD have gotten high!). Addiction occurs when people take narcotics when they DON"T need them.

Wow = I feel like one of the final five Cylons (guess who is a Battlestar Galactica fan)for going the entire TX without a PEG. In amazing synchronicity, I was just cleaning out a file cabinet minutes ago and came across an interview with Swedish doctors who stressed that even with a PEG, patients needed to keep swallowing in order to reduce complications later. Exactly as Gary suggested.
Geri
The worst part of the pain meds for me was the constipation. What ended up working the very best was plain old suppositories right off the CVS shelf. It avoided all the hassles with the laxatives.
Finally, sadly Gary is right that you don't even get high off these narcotics due to the pain so addiction is a red herring for the majority of cancer patients.

Charm,
The worst part of my entire treatment was the constipation! It even overshadowed the pain. I spent many glorius moments, curled up in a fetal position, on the bathroom floor. So the narcotics are truly a double edged sword. They take away and they also give. I ranked my constipation management a "D-". There are many ways to mitigate the side effects of narcotics, dietary fiber, plenty of hydration, suppositories, stool softeners, laxatives, meds like Reglan, etc. Even prunes are very effective. Fruit based smoothies work well also but anything with fruit may be too acidic to swallow so this is a good time for the PEG or "swish and spit" compound first.

It still amazes me that one can become SO constipated only drinking liquid foods!

As soon as I was able to wean off of the nartotics this, overnight, became a non-issue. Don't stop taking the narcotics too soon however. Pain DOES NOT enhance the healing process.

Geri,

As is so often said here, everyone responds to treatment differently. I never needed more pain meds than oxycodone, but usually less than the full dosage per day, and stopped taking it pretty quickly after treatment ended.

Also, I've not experienced any swallowing difficulties, despite my PEG tube, but I was diligent about doing my mouth stretching and swallowing exercises. Eating is still slow, but that's due to limited saliva and my Franken-tongue being less mobile.

One more thought from the peanut gallery

I like Margaret, had relativly low levels of pain management drugs. But this was a result of how I reacted to treatments. Everyday at CCC I was asked once, twice , three times what was my pain level 1-10. They wanted 3 or less. I got the talks and learned that recovery is faster and easier with no pain, you received no extra credit or stars for "gutting" it out, the cure was not better if it was painful. I took pains meds when I needed them but I was lucky. The point is take the pain meds to recover if you need them. The CCC should be/will be pro-active in helping you manage your discomfort.

Well, we are back from the 2nd chemo. They reduced the dose of cisplatin and said that it was still a good therapeutic dose. The first chemo the MO mentioned 196 and today they lowered it to 110. Richard took the Emend and they gave him the Decadron in the IV. I asked for the Zofran in the IV, but the MO nixed it because he said Emend and Zofran are alike and that taking both at the same time is overkill.

If Richard is as sick as last time, I'm going to be ticked off. I feel the Zofran should have also been given. The nurse said if the Emend doesn't work, not to take the Zofran until we call them in the morning. If he's sick tonight, wouldn't that mean the Emend isn't working and he could try to Zofran, which worked last time? Has anyone taken both of these two drugs together at the same time? We also have a prescription for Ativan and Decadron. Anybody that can help, please post...Geri

Geri,

Speaking from experience there are some of us that just couldn't find anything that worked or that didn't produced worse side effects. After trying millions of dollars in pills for pain and nausea I just said the hell with this and stopped all of them. I actually felt better taken as a whole because even though I did have the pain my nausea was brought back to tolerable levels and I was able to keep things down after swallowing.

Believe me I'm not advocating doing what I did but I'm just saying we can all react differently to the same pills or combos.

Hi, Could anyone tell me if they used Mucinex or any over the counter meds for the mucous? Richard is beginning to get this and he knows it will get worse. Seltzer water is working good at this point and if anyone has any more ideas, please post or refer me to a link on this site. Thanks, Geri

Geri

Hints on increasing efficacy of Seltzer water for mucous:
1. Buy the cans only - in cases on sale - to maximize the "fizz"
The large bottles never held enough fizz after the first rinse no matter how quickly or tightly sealed. The price difference isn't worth saving when you choke and still cheaper than OTC Mucinex stuff.
2. Use a fresh can each time (just like the professional wallpapers do who use a new razor blade each and every time they cut): no need to swallow - actually easier not- just swish and spit.
3. Keep "gargling" every time, several time to dislodge stubborn mucous at back of throat.

The above worked well enough for me to never need OTC or Mucinex although it was very bad.
Bonus: As they say on TV: But wait there's more
When I found it difficult to drink my EnsurePlus later due to mucous forming immediately after each sip, I would rinse with selzter water twice, spit and then good to go with next sip of Ensure. One can each ensure.
You are such a good caretaker. Sorry I have no experience to share with mucinex etc.