Kellie-
Welcome to the boards and give your sister a hug from us. You mentioned that she has not been taking anything by mouth, not even water, for a long time. That worries me. She should try to take some sips of water through out the day. Swallowing is a function you can lose if it is not used, so please try to encourage her to try some water! She should also work on opening her mouth as far as possible. It is very depressing to try and eat a month down the road and discover you can't open your mouth or swallow! See if you can get her a referral to physical therapy to work on swallowing and working those jaw muscles. She's very lucky to have such a caring family! - Kris

Kellie,
I too was a smoker, but quit almost twenty years before Dx.
I was also a "tough guy" who didn't want to take the pain meds. Afraid of addiction and losing control. Neither of those were an issue. I continued to resist until a caring nurse at the Univ. of Chicago said to me " Your cancer won't go away any faster by your being in pain, but your recovery will be faster" I then gave in and let them adjust the pain meds to appropriate levels. I got up as high as the 100mcg Duragesic patch, and used the morphine sulphate to address breakthrough pain ussually before meal times. I never had a feeding tube, and was able to take my fluids orally. I was never "buzzed" on the meds, and in fact maintained enough motor skils to do pretty well on video games.
It really is important to get the pain under control and as many have said already, the most significant pain was during the six to eight weeks after the last radiation treatment. Hang in there with her. Your support is important. It may sometimes be frustrating, but believe me the support from my family was an enormous help in my recovery. Keep coming back here. You can count on the people here to give you and your sister support you'll both need.

Chuck

Kellie
I was not a smoker dx at 47. I didn't take to much pain med. because of constipation and I worked half days. I had cancer on my tongue and nodes.

Long day yesterday. At Dr 10:00-3:30. Bad night the night before. Throwing up all food. Gagging and choking on pflemn. Julie was put on IV's and given lorazepam. This medication helped her so much yesterday I can't believe it. 100x better on the gagging, more relaxed. We are doing the IV's again today and also seeing the Dr before radiation.

She upped the fentanyl transdermal patch to 50mg on Friday. Last night after radiation she used morphine sulfate for pain. I can see that when she swallows she is in more pain with each radiation treatment. I think the pain that she is having is not break through pain. I think she may have to up the patch again. I would rather see her using the patch to control this. Is this correct??

Thanks Kris. We did discuss the oral thing yesterday and I'm going to get her to try some swallowing today. The Dr said to try and do something thicker than water because of aspiration. I think I will bribe her with shakes and pudding!

Gary we have not been going to the Mayo. My mother lives closer to Mayo and thinks there may be some better options for detection.

Chuck seems like we got her pain and other meds in check and she is doing so much better today. I have been the tough guy. It is hard for me to see her so sick. I want her to be as comfortable as possible.

Joan thanks to the answer to my smoking question. Looks like you have been around this sight for a long time. That makes me feel good.

Bless you all! You have the kindest hearts,
Kellie

Kellie
Whatever it takes to control the pain make sure she gets it... no trying to tough it out. Kris is spot on, she has to swallow or she will lose the capability.
She is a lucky girl to have someone who cares so much. This disease is a nightmare for caregivers as well as patients. My husband was out of work for six months , his job entails a lot of travelling and trying to eat on the road was just not feasable. Our best wishes are with you and your family. Holler if you need us.

Take care
Marica

Kellie,
that is correct -they will increase the patch up to 300mg. There is a balance between the breakthough pain meds and the patch. If she is using more of the breakthrough meds, then they increase the patch.

The reason I ask about Mayo is it is ALWAYS better to be treated at a comprehensive cancer center. This disease will not tolerate screwups in diagnosis or treatment - it can be extremely unforgiving.

I kept a journal as to what worked and what didn't. Kept notes on meds, food & water intake, temperature, etc. I also worked closely with an oncology advice nurse and a nutritionist to solve some of the swallowing and nausea problems. I still ended up in the ER twice for rehydration. I polished my teeth like glass from all of the vomiting.

I had fair days to horrific ones. I wouldn't wish this treatment on my worst enemies (well ok, Osama Bin Ladin maybe) The good news is that it does get better. It's got to be tough to sit around and watch a loved one go through it and feel helpless.

Kellie-

I know EXACTLY what you are going through and it is very tough to watch, not to mention scary. My husband was the same as your sister and couldn't take anything by mouth around the same time as your sister. The others are right...try something to keep her swallowing, and your doctor is right that thicker things are easier to swallow. My husband didn't do this and when he tried to eat and drink a few months after treatment he was aspirating and choking...the swallowing muscles wouldn't work. At one point the doctor thought there may have been nerve damage to the nerves that work these muscles and told us that the feeding tube may have to be a lifetime thing...that was very scary. Fortunately he just kept trying and trying and now is able to eat and drink...though he still needs to have things with loads of sauce and fluids. If you can prevent this it would save a lot of pain and heartache later on.

Let your sister know that EVERYTHING she is going through is "normal" for the treatments she is receiving. I know it helped my husband to know that it "wasn't just him". Sometimes there is a calming effect just knowing you aren't the only one who has ever gone through this and that there is hope at the end of road. Like Gary said, the get together in Vegas really helped us all to realize how much hope there really is for everyone going through this. It was wonderful and inspirational to see so many wonderful survivors who are living such wonderfully happy & fulfilling lives.

One handy hint for the phelm in the throat. Have your pharmacy order you Ulcerease. It is an antiseptic oral rinse that helps ease the pain of the mouth sores while at the same time cutting through the gunk in the throat, making it easier to spit out. My husband used this stuff constantly during and immediately after treatment and still uses it to help ease the dry mouth and refresh his mouth. I had to have them order it special...it was referred by the radiation oncologist...I couldn't find it on the shelves of any stores I went to even though it is an over the counter medication.

Hang in there...and if you feel like venting you can always send me a private email. We caregivers have to stick together, and we know each other's pain.

You are in my prayers...give your sister and mom a hug from me.

Hi Kellie from a fellow Minnesootan. Sorry that your sister has to go through this. The last week is the worst. Very good that you are there for her. Feel free to e-mail me if you have any questions (we can talk Skandihoovian )

Take care