I just completed my 28th rad treatment, and have 5 to go, after three days off for Memorial Day Weekend.
I also have 1 more of my 7 weekly Cisplatin infusions left.
My throat is really starting to hurt when I swallow, and the mucous is really thick and sticking to my throat when lying down.
I was only taking 200mg Ibuprofen, a few times a day so far to help with eating and drinking.
I thought that I would need a step up in medication to get through the last treatments and recovery, so I discussed various prescribed alternatives with my pain management physician from the Cancer Center.
We narrowed it down to a 12.5mcg/hr Fentanyl patch.
I wouid like to try to stay off of a feeding tube after going this far without one.
So, some questions, for anyone who has had Fentanyl patch experience.
1) I read that usually, the patch is a conversion from oral opioids. I have taken Oxycodone just for a day or two, a few months ago after a surgery. It didn't seem to do anything, so I stopped using it for OTC medications.
So I assume that I am opioid tolerant, I didn't have any negative effects from it.
Has anyone gone straight to the low dose 12.5mcg/hr Fentanyl, without having been on an oral opioid at the time of the initial patch application?
2) Has anyone had any respiratory issues when using the patch? If so, what is the treatment for that?
3) Does anyone have any other observations based on their own Fentanyl patch experiences that I may find useful?
I know all meds seem to have scary disclaimers, as we see daily on TV commercials, but the Fentanyl patch disclaimers seem especially so.

I'm not entirely sure what exactly other meds you're describing, but when I was given a Fentanyl patch, it was near the end of my treatment and I couldn't bear the pain any more. I wasn't on much of anything else FOR the pain at that point, and I think I would remember, because I was strictly feeding tube by that point, and it would have had to be liquid or a pill ground up (which we did with some of my regular meds). I had the mouthwash stuff, but nothing else (and no brains to ask). Since then, I've gotten other meds for migraines that I believe are opioid derivatives (maybe?) if that helps. I'm careful about dosing and it's never been a problem. (I know some folks have strong feelings about those kinds of meds. But they do have their place.)

When I broke down at radiation and begged for mercy (pretty literally) they gave me something in a shot right then and there, and a prescription for the Fentanyl patch that my mom helped me get filled on our way home. (She was my driver, since my husband was working.)

I don't recall any bad side effects ... honestly, the radiation burns were so bad, I'm not sure I would have noticed anything short of a severe allergic reaction. (I do get allergic reactions to a lot of meds, so I watch for those.) I do think I should have asked for pain relief a lot sooner ... and I think my doctors should have let me know it was available, a lot sooner.

At that point in my life I didn't have severe breathing allergies, though I do now. You mentioned something about respiratory issues ... is this something you have a concern about? You'd want to talk to your doctor directly about that, for sure. I've got an inhaler and an Epi-pen these days (gotta love compromised immune systems), so I figure I'm covered, but then I didn't. Didn't have a problem, but didn't expect one either. If you have reason to worry ... talk to your medical professional!

For what it's worth ... as a patient, not a medical professional ... I read all the medical literature very carefully, but I read it for MY keywords. I know my allergies, my usual side effects, the things that stack from one med to another ... and I fret about those, and not the rest of it. Otherwise I'd go crazy. (Crazier.) Talk to your doctor and maybe your pharmacist for advice about med interactions, if that worries you. And then ... do what seems right to you, what will get you through treatment. It'll be different for everyone; nobody can make that call for you. But you're the one who has to get through this, and it's okay to use medical help to do it. ((hugs))

Thanks Kristen. I hope you are doing well, it sounds like you sure had some rough times.
The medications that I was referring to, are opioids like Oxycodone.
Being that you get a steady release of medicine with the patch, I think they want to be sure you can tolerate the same type of medicine in oral form.
As far as the respiratory issues, beginners who can't tolerate opioids, might have shallow breathing,which was on the prescription warnings.
The radiation Oncologist is aware of the prescription, but I may wait to discuss with the chemo Oncologist. No one ever wants to go to the ER, but the worst is going on a holiday weekend.
Thanks again, Mike

If hydrocodone is in the same class, it's part of what I take for migraines, and I do not having breathing issues with it (except for once, when I mis-timed a dose, which I will NEVER do again ... yikes ... but the warning is because it slows your breathing when you do that, and yep, it did as advertised). With a patch, it's pretty hard to mis-time it the way you can a pill, so if that's the breathing concern, that shouldn't be too bad ... but again, that's the sort of thing you ask a doctor and/or a pharmacist, to be sure. (My pharmacists are angels, always checking for allergies and interactions that even my doctors might have missed.) And I don't *think* I had any of that stuff before my cancer treatments, but my memory is so hazy, I can't be sure ... I wasn't taking it during treatments, for sure, because of the whole tube thing. Just went straight to the patch.

Can you call a pharmacist this weekend with some of your questions? They're busy, but way less busy than an ER. Depends on how well you know yours and trust them. And it can be nice to get some questions answered sooner, so you have the meds before your treatment. Or maybe fill the prescription just in case, but don't start it till you talk to your doctor? I just hate to think of you suffering more treatments while waiting for answers and THEN going to get it filled, when you could have it on hand and ready to go... but again, I'm a sympathetic fellow patient and NOT a doctor.

I did fill the Prescription, and I bought a package of Tegaderm waterproof bandages to put over the patch, per someone's suggestion who was on it for a while, due to back issues. So I am good to go if I want to proceed.
I'm not in agonizing pain, like after my last Lingual Tonsil surgery, so I will wait to talk to the Chemo Oncologist Tuesday.
I also will see the Radiation Oncologist, as he reviews my case every Tuesday. I may call the Pharmacist too, a small personal local drug store. He is great and very knowledgeable.
Unfortunately, he was off the day I picked it up.

Oh good! Sounds like you're on top of things! (I worry when I think someone's going to suffer when they don't have to.) Hope all goes well and you get the information you need soon! And that the pain gets better soon, too!

Fentanyl is the strongest pain medication available. The 12.5 mcg fentanyl patch is the lowest strength of the patch. Most patients who take this start off with 25 or 50 mcgs and go from there. The patch is for patients who have more of a long term type of pain. Its not for temporary things like migraines, pulled muscles, etc. This type of medication is a step up and step down one. You may not notice any effects until you have the patch on for 24 hours. With the 12.5mcg dosage, you may not get very much pain relief. Call your doc if you dont notice any changes after the first 2 days. The doc will probably bump up the dose to 25 or 50mcgs, you tell you to put on another patch so you are getting 25mcgs. Change your patch every 72 hours. Mark it down somewhere the date and time you place the patch and keep track to make sure you dont get mixed up (very easy to do!). Most members who have used the fentanyl patch find its very easy to use and helps to control their pain.

Read all the directions and follow them exactly. Never cut, tear, rip, fold, or in any way alter the square or rectangle shape of the patch. Do NOT take long hot baths or showers while using the patch. Put a new patch on in a different place every time. All of the things Ive written can cause the patch to release too much medication which can cause serious medical issues. Immediately report any problems of not feeling well after putting on the patch.

The thick gunky mucous is horrible!!! You can ask the nurse to use the suction machine to help get it out. Your doc can write you a prescription to get a portable suction machine at home. I was always surprised at how much gunk the nurse was able to get. I didnt get the machine at home but many here have and it was found to be a great help.

You are doing much better than most if you are going into the last week of treatments and not been on strong over the counter pain meds. There are very few here who would report they still used Ibuprofen to control their pain at the end of their treatments. I suggest asking for a prescription for magic mouthwash (MM) on your next treatment Tuesday. Even if you dont see the doc, they can still write you a prescription if you talk to yoru nurse. Theres several variations of MM. Mine was malox, lidocaine, benedryl. Swish it around in your mouth 30-60 seconds then spit it out, do NOT swallow it. The longer you swish it around in your mouth, the better and longer the MM will work. MM will numb your mouth for at least 15 minutes so you are able to eat and drink.

The last week of rads is the hardest one. I cant stress enough how important it is to pay attention to your intake during this last week and first few weeks of recovery. Radiation treatments are progressive (continues to work even after treatments have stopped), so the further you go the more you will feel its effects. The best way to get thru the hardest weeks are to focus on the tools that make it easier to get thru it...your intake and pain management. Im very glad you have such a great medical team taking care of you. It shouldnt be a rarity for patients to consult with a pain management specialist to help them get a handle of their pain.

Many of the strongest patients have had to give in and get a temporary nasal tube. This is meant for short term use and does not require surgery like the PEG of J/G tubes do. The nasal tube will help you to easily up your intake without further irritating your sore mouth and throat. Weight loss is a sure sign of not taking in enough calories. If you find you are struggling to drink enough water ask your doc for a prescription to get extra fluids. This will instantly perk you up and make you feel better. I would drag myself in for the IV, a couple bags later Id walk out a changed patient. Intake is one of the things patients trick themselves with and quickly find themselves in a downward spiral thats very hard to pull out from. Its the "make it up game." I played this myself and it landed me in the hospital for malnutrition and dehydration. On days you dont feel well you skimp on the intake saying I'll do better tomorrow. This does not work! Tomorrow never comes as the next day patients who skimped will feel even worse and the patients finds they are in a vicious cycle of trying to catch up which is next to impossible Make sure you are honest with not only yourself but also your medical team and speak up if you are start ing to struggle with your intake. At this late stage its unlikely your medical team would bother putting you thru getting a feeding tube. Especially when the nasal tube can be inserted right there in the office and immediately start being used.

From what you have reported, you really are doing very well with your treatments. Hang in there and keep up the good work!!!

Thanks for the detailed reply Christine, and very encouraging to push me through. I was really getting duscouraged that things changed so dramatically for the worse, and just in a few days. I was just drinking water, and that was even difficult, so I thought, enough is enough, time to get around the pain. I remember many people saying, don't wait until the pain is out of control,you have to get ahead of it. So I just applied the patch, all good, nice and flat, undamaged, and protected by the Tegaderm dressing.
And I think the doctor started so low on the 12mcg
(I thought it was 12.5, but it's just 12mcg ), to make sure that I didn't have a beginners reaction.
And I have been using the Magic for a while now, that surely is a big help, maybe has been helping me get by on the Ibuprofen alone, up to today. I have to add, I did try legal oral Medical Marijuana oil, and that didn't seem to give any relief. I tried the 2nd strongest THC version, and worked the dose low to high, and nothing. I am wondering if the oil is just getting caught in the mucous, maybe the pill form would have been better in my case. But for now, I will just hold off on that for possible palliative care, and getting my appetite back.
I will definitely discuss the nasal feeding tube Tuesday, the RO didn't want me under 160, and I just went to 159 this morning.
I'm getting by with Boost VHC, alternating with any "plus" nutrition drinks, and ice cream /milk /whey protein shakes.
But I guess, not quite enough.
Big week ahead!

For the mucous, you can clear it with a Waterpik on the lowest setting, using the tongue scraper attachment with warm water with a bit of magic mouthwash thrown in. I was going to suggest it, but seeing that you only have 3 days left, I wasn’t sure if you wanted to invest in one. If you use it a few times a day, it clears the mouth of mucous. That, I believe, will help with the mucous at the back of the mouth too. With the stomach feeding tube, my husband had to swallow the tube when it was put in, so if you can’t swallow, it won’t work. A nasal tube will work fine if it’s only for a short period of time.

Thanks for the tip. I do have a cordless Waterpik WP-450 that I haven't been using. Bad of me, my dentist suggested it years ago for my serious plaque.
I checked that the tongue cleaners do fit my model, and just ordered a 2 pack from Amazon. Thanks for the feeding tube info also.