Hi All,

Week 3 was far far less kind that weeks 1 and 2.

At the beginning of the week (Monday) I encountered bad mouth sores, which I was unprepared for--I didn't expect mouth sores, and I had no meds. The drs were suprised this happened so soon.

I was wincing in pain swallowing and speaking. Tylenol helped.

Now I have the mouthwash cocktail, pain pills, and lidocane--I'm heavily armed. Still, even now, the pain is there. It's especially bad at night while (trying to) sleep. I have sores on my tongue, roof of my mouth, and the back of my throat. Plus the mucous keeps flowing--I'm up at least 6x a night just to spit it out and rinse.

I must say, without the pain pills, this would be impossible to tolerate.

I'm halfway done, so that's the good news. Plus, because of Christmas, no treatments for (4) days.


Merry Christmas,


Oscar

Oscar,

If you are still in pain you might need stronger/better pain meds. My husband went through a few options before he found what worked for him. He used a combination of breakthrough pain relief and long lasting pain relief meds.

For the mucous, he used robitussen (there's lots of variations out there, he used the kind that had no alcohol and the key ingredient was guaffisan (sp?)). That thinned out the mucous immensely making it more tolerable. And, at his worst, he used a portable suction machine. Both of these were recommendations from kind folks on this site. And, once I knew what to ask my doc about, our doc was in support of these solutions as well.

Hurray for being 1/2 way done!! It might get worse, but then it will get better!!! Keep advocating for better pain meds if you are in pain.

Your docs don't want you in pain either. It's hard for them because everyone reacts differently so there isn't a one size fits all pain solution.

My husband wanted to get in and out of the hospital as quickly as possible each day, so even though he was in pain, he'd tell everyone he was "fine".

I had to advocate for his pain medication while he was having his RT treatments. Docs, NPs, Nurses...they were all very receptive to helping him. And, what worked one week wasn't always enough the next so I worked with them on daily dosage modifications too.

With any type of narcotic pain medication, be sure to talk to your docs about constipation...an almost guaranteed side effect. If you can manage that at the beginning, life is that much more tolerable.

I hope you are able to enjoy the holidays and your 4 day break!

Oscar,

Keep marking off that calendar and before long you will mark off that last rad day and then you get to take that mask home for good.

I had a bad time with the pain meds, most of which caused nausea, so eventually I stopped taking all meds and the nausea ended and I felt better even though I had to contend with the pain. I hope you can find the right combination that works for you.

Hi Oscar,

Well, you were right. Week 2 was much more difficult than week 1. Today was my 8th treatment, and I noticed my tongue has swelled a bit making talking more difficult. So far eating is okay, but I am worried about that. My taste is fading. I can taste more sweet than salty-luckily I can still taste chocolate. The mucous has become thicker and my mouth is so dry. I've tried biotene which helps only a little. My Dr. gave me a Rx for Magic Mouthwash to use just in case. I don't have any mouth sores yet, but my lips are really sore. Think I'll ask for some pain pills to have on hand.

Well, onward & upward.... we'll make it through.

Margaret, David, and Jenna,


Thanks for your kind words.

Jenna, that's great that you're getting your meds ready in advance. I was completely taken by suprise!

Earlier this week (of course, around Christmas there's always goodies around) I took a bite of fudge...it may as well have been hot chile pepper!

Boy, am I looking foward to the 4 days off...both mentally and mouth sore wise.

My best,

Oscar

Oscar,

Just got back from treatment #9. Over the weekend, the mouth sores started. They are so painful. You're right-especially at night. The nurse thought it was kind of early for me to have these. As it turns out, it's thrush. I just got a Rx for diflucan and also Percacet. I 'm just doing liquids right now. I don't see the point in chewing something I can't taste. I bought 2 cases of the Carnation VHC. I really want to avoid a feeding tube.
Oh boy... 21 to go.

Jenna - My son's mouth sores got painful the second week and the nurse told him the same thing about being kind of early to be starting with the mouth sores. Trying different things seem to be the thing to do. My son used the Magic Mouthwash and after a while, it didn't seem to work anymore, but then later in the treatment he found it worked ok for him again.

Oscar - what my son did at nite was to keep the humidifier going and he had plenty of tissues by the bed with a bucket to throw them in to take care of spitting out the mucous. He found also that keeping a plant mister (spray bottle) by the bed helped to moisten his mouth when he woke up with dry mouth. He also slept with his head raised up on several pillows. I remember how he looked forward to Thanksgiving and Christmas last year just so he would have an extra day off from the Rad Tx. When he first started treatment he didn't want me to talk about "how many more tx to go" but later, when he was 1/2 way thru he started getting enthused about coming down the home stretch! It does get better - it really does! And then when you start feeling better you appreciate so much each little improvement! Enjoy your Holiday days off from Tx.

Jenna, hang in there, if I can, you can!

Good idea about the liquid diet, right now, I have to swish lidocane, wait a few minutes, and then eat and drink. Without the lidocane, can't eat or drink without excruciating pain. Also, things get stuck in my craw...even the pain pill--very unsettling. I'm going to switch to liquid pain meds tomorrow, as well as shop around for the liquid food (Boost, Ensure, or the Carnation stuff you mention).

Anne-Marie, good call on switching the meds around...it's strange but I think that to be the case with me also. My program now is rinse with water/baking soda/salt mixture, magic mouthwash or an OTC wash to relieve pain. The pain meds aren't strong enough to handle this on their own...when eating drinking, I then add the lidocane.

I have the humidifier on and have switched to sleeping upright.


Oh well, the break is over, not much relief from having 4 days off-still in pain, sores still there, and heading to the treatment room tomorrow morning. That's the bad news, the good news is that after tomorrow I'll be more than halfway done.

Ho ho ho, Merry Christmas,

Oscar

Hang in there, Oscar - going back to the treatment room means you are getting that much closer to the end of treatment. Keep your eye on the light at the end of the tunnel!

The doc gave me a pain patch today...fentanyl, so the pill doesn't get stuck in my throat. Not sure if it was the radiation or the patch, but it knocked me out from mid morning to about an hour ago. Very very tired. At least it seems to control the pain pretty well.

Oscar