Searing, stabbing mucositis?

Barbaraek

Since starting the adjuvant chemo with Cisplatin and 5-FU over a 4 days span the pain from mucositis seems different in nature from the radiation treatments and Cisplatin. Words my husband has used to help describe it are burning, searing, stabbing, granular. It seems to be more localized - especially up behind the palate, like there is a gigantic scab or sore there that is dry and ripping open. Previously the pain was more generalized and constant. He'll be doing relatively ok and then wham! All of a sudden searing pain. So here is what we have tried. Am I missing something that could help??

painkillers- fentanyl patches supplemented with liquid oxycodone

swish and spit- water, baking soda, salt

water with L-glutamine

ice chips

BMX

swishing with milk

humidifier and mucinex

Prilosec

hydration through the PEG tube

prayer

I really feel at wit's end and so utterly helpless in alleviating this pain.

Barbara

 

 

 

wmc

I wish I had more than, ......Sorry

I wish I knew something that would help. I will say that I see you listed Prilosec which is for acid reflux. I have this [GURD] fairly bad but don't have heartburn so I didn't know I had it. I had to go to Rx as nothing over the counter will help. I, well the doctor, tried many and we did find one that will work "for me". I have to take Dexilant 60mg, which is for once a day. I have to take it twice, once in the morning and again at night. Doctor had to argue with insurance to get it oked for twice. It is on the insurance list as "you pay a lot" for it. I have great insurances and my cost was $100 each month. Dexilant sent me a coupon where my out of pocket is $20.00 max. [you can go online and get the discount from them.] I now get a three month supply and I pay $20.00 and have been on it for over a year. Now with acid reflex there is some foods that will make your body produce more acid to digest them. Google it, but here is some, Milk and all dary products, ice cream and cheese too. Coffee, Cola like Pepsi and Coke, also Mt Due because of caffeine, black pepper also. That is just a few. Now I still eat them, and I know they will produce more acid so I do have to watch them. Oh, almost for got Butter and I cook a lot with it.

Now on to the pain killers. He is in one heck of alot of pain, and i'm very sorry. When I see Fentanyl I know thats pain to the extream..[ My son is on that from a really bad acident going on 7 years] With having to take pain killers [which you can't do without] will also mean you will get constipation with it. Most likely need softeners daily and Laxitive about every three to four, I do.

Just a precaution, if he does have to take an antibiotic for colds or flu or infection, remember to eat Yogurt or Probiotics at least 3 billion count because the antibiontic will kill the good bacitera we need. It just kills all bacteria not just the bad.

I am not a doctor, but you seem to have all that I could think of. It is very hard on the caregiver/ loved one. You see the pain and it hurts you, because you can't make it stop. All you can do is what you are doing, be there for him with some understanding. He might even get a little sharp at times, but believe me he does not mean it. Sometimes it is harder on the caregiver than the person going through this. I do wish you my best, and will also add to remember to get the reas YOU need, and set some time each day aside for you.

You both will be in my thoughts and prayers. I do understand, so remember just take one day at a time, and we are always open 24/7.

Almost forgot, with acid reflux, only lay on your left side because on your right side the acid will drain to your throat because of gravity as it puts your stomach high up and it will drain down to yoyr throar.

Bill

phrannie51

I don't see

Magic Mouthwash or Xylocaine Viscous 2% on your list.....tho they work to numb things (and they do to the point that swallowing is almost impossible)....they also sting.  I'm wondering tho, why not ask for a script and see if they might do the trick??

The 5FU/Cisplatin chemo after rads was very difficult....and they may have to lower the dose on the next one (they did mine...partly because I turned bright red and my face swelled up....it was lovely).  I can't remember when he had the last dose....but I do know it took me 8 - 10 days for my mouth to start clearing up. 

If he is managing to put milk in his mouth without stinging, then do ask for either Magic Mouthwash, or straight Lidocaine....and see if that will bring him some relief.

p

 

Barbaraek

phrannie51 said:

I don't see

Magic Mouthwash or Xylocaine Viscous 2% on your list.....tho they work to numb things (and they do to the point that swallowing is almost impossible)....they also sting.  I'm wondering tho, why not ask for a script and see if they might do the trick??

The 5FU/Cisplatin chemo after rads was very difficult....and they may have to lower the dose on the next one (they did mine...partly because I turned bright red and my face swelled up....it was lovely).  I can't remember when he had the last dose....but I do know it took me 8 - 10 days for my mouth to start clearing up. 

If he is managing to put milk in his mouth without stinging, then do ask for either Magic Mouthwash, or straight Lidocaine....and see if that will bring him some relief.

p

 

Thanks Phrannie we do have

Thanks Phrannie we do have magic mouthwash it is the BMX. Knowing some sort of time frame is helpful though.

barb

phrannie51

Barbaraek said:

Thanks Phrannie we do have

Thanks Phrannie we do have magic mouthwash it is the BMX. Knowing some sort of time frame is helpful though.

barb

By the end of 14 days...

I was able to take my Boost via the mouth....that was always the test to how healed I was.  I'd get a one week break from the horrible mouth sores, then on day 21, I was back for another dose of misery.  It was during this last phase of treatment that my husband was very concerned...and where I lost most of the weight I lost.  The one thing I kept hanging onto, was there were only three doses, and then treatment would truly come to an end, and I could heal completely, and there was no more doses of misery lurking out there.

p

MrsBD

Pain

I think I know what your husband is describing. Occasionally that pain presents itself in one area of the inside of my lower jaw. It feels very dry and like something must surely be tearing, but there is nothing there. My treatment ended eleven months ago, so it is possibly nerve pain. Sometimes just pressing my tongue or finger over the area helps. With this cancer treatment, it seems every day brings a new symptom. Be patient. Most of them are temporary, although miserable. I will add my prayers to your list, too.

CivilMatt

i remeber

Barbaraek,

When my mouth and throat were at their worst my radiation oncologists would say “your mouth and throat are ablaze”.  For me magic mouthwash was a godsend, I went through six bottles and swished and swallowed every darn drop of it.  I also yearly used the Xylocaine Viscous 2% on the bad spots in my mouth. 

I also continued to drink lots of water and swallow, swallow, swallow every day.

I also had a half gallon of salt and soda water at the ready at all times.

I also had a utility room sink dedicated to rinsing, splitting, gagging, and coughing.

You find what combination works best and then exploit them to the maximum extent.

Best of luck, sorry about the pain.

Matt

debbiejeanne

barb, i don't have any

barb, i don't have any answers but want to say i am praying for him to feel better.  talk to the docs, they have to have something that can help aliviate the pain.  i'm so sorry he's in so much pain.  i am praying for all of you.

God bless you,

dj