My sister Julie has scc affecting tonsil/tongue and lymph node stage three. She will be starting her last six radiation treatments next week. She also did six sessions of chemo. My question is when she is finished they are going to retest for the cancer with PET/CAT I think is what she said. This is the test that they did when they were first looking for the cancer and did not find it. Is there any other ways of checking this??? They ended up finding the cancer with biopsies.

Also Julie and I have been talking about increasing her pain medication. She is a toughey and does not like the idea of drugs. Now that the last treatments will be more focused on a specific area I'm assuming that it will become more painful. Not sure what patch she is taking but it is 72 hours and just one. She asked me how will she know if she needs more? At this point she has had some break through pain at night about 20 minutes at a time. Not unbearable as she puts it.

Since I'm here I have been curious about how many of the people in this forum are or were smokers. We have both quit.

Thanks for your support in advance,
Kellie

Hi Kellie,
I was a smoker and quit in 1976.

Pain meds: There are 2 types of pain meds:

1. Long term opioids such as duragesic (i.e. the patch) and they usually start it 25mg and up it 25mg at a time until the desired pain releif is acheived. These adjustments have to be done under supervision from the doctor. This is typically used to mask the ongoing pain from the radiation and mouth sores. I never even got a buzz off of it. I was up to 3 patches in the end and some have even more. It takes a full day for the effect to kick in.

2. Short term opioids such as Morphine Sulphate are used for "break through" pain when certain events, like eating or drinking or brushing your teeth, push the pain threshold over the top. These should be taken 30 minutes or so prior to the need. It's a good idea to "med up" before going in for exams as well (especially in the beginning). Morphine is relatively fast acting.

Her pain levels will continue to increase until almost a month or more after she completes radiation (the gift that keeps on giving). This is NOT the time for heroics. It is well recognized that appropriate pain management is a benefit to faster healing (not to mention a basic patient right) They may have to try different meds in case she has reactions to some of them - some people get a little wiggy with morphine for instance (although I wasn't one of them). She'll know when she needs more - her pain level will go up to 3-4 or higher. Use the pain scale to communicate this situation with the doctors.

They usually do an MRI or CT with contrast post Tx. Its probably a little too soon for a PET/CT because the scar tissue can give erroneous results. The main concern post Tx is recurrence at the primary site and they will be performing a palpation and "look, see" (usually with mirrors and sometimes with a scope) every 6 weeks for the first year.

The first PET/CT is usually used to verify the cancer site and then to look for other sites as part of a triage and assessment for treatment protocol. The biopsy is the gold standard for confirming the site and type of the cancer.

Kellie, Welcome to the site. Sorry you need it, but welcome. I was a smoker for 46 years before my cancer. I smoked up to the time they did my tonsilectomy (my last cigarette was 2 hours before surgery). Then gave it up. Still miss it, though. What a nasty habit.

Testing for this disease includes needle biopsies, examination by scopes, in addition to the CT/PET/MRI scans. At least, those are the ones I know about. I had small needle biopsies which didn't detect the cancer and eventually had to have a sonogram directed biopsy with a large needle to get enough cells to confirm the diagnosis. The CT/PET scans also didn't confirm but only indicated "suspicious" activity. So as Gary said, biopsies are golden.

Pain meds are, in my opinion, pretty much up to the individual. I didn't like them either and took no meds throughout rad treatments, mainly because I was still driving and didn't want to be on meds and driving at the same time. The first few weeks after rad ended, though, I was a basket case and took meds all of the time. The last couple weeks of treatment and the first three or four after were the toughest part for me. Hope your sister comes through with less problems. Is she on a feeding tube or still eating orally? Just curious as I was on a tube as I couldn't take anything by mouth, not even water, for the last few weeks of rad and into the post rad timeframe. Without the peg tube I would have shriveled up to nothing.

Will pray for you both to get through this with a minimal amount of discomfort.

Gary,
Thanks for responding so quickly.

I think she was talking about the PET/CT at about 8 weeks after treatment. We live near the Mayo Clinic in Minnesota. I have heard that there is something that they have that can detect the earlier stages of cancer. Has any one heard any thing like this? I was hoping there was something more. Somehting that could tell us if she is cancer free after the treatment. Sounds like this is more of a waiting game.

Thanks again for your input,
Kellie

Kirk ,
She is on the feeding tube. She has not been taking any thing by mouth for a long time. Not even water. That's what makes me wonder if she should be on more pain meds. She can't afford to loose any more weight. Even with that she is still having a hard time keeping the food down. She is thankful that she got it.

Wasn't it you that worked through all of your treatment???

I can already tell that the worst weeks are yet to come. She has been very depressed. Not wanting to be left alone. Tired all the time. Last week we started staying with her. Mom this week. Me next week. So she does not have to be alone.

Thanks for the genuine WELCOME! You guys are a great bunch,

Kellie

I smoked form 11 yrs old till 29, dx'd w/scc at 42. I took ultrucet & not nuch else. I also didn't like the idea of taking pain meds & would hold out way to long between doses. The constipation got to me so bad that I would refuse pain meds. I got through some how. Never had PET scans, only cat & mri. Am scheduled for mri in december. Hang in there!

Hey Kellie, I'm glad your sister is able to keep food down. Some have trouble even with the peg. I didn't have much trouble with that, though I could only take 4 cans a day. That's why I added Instant Breakfast to the first one and used the plus version to get 350 calories per can. I still lost 50 pounds, 25% of my body weight, even with the peg.

Yes, I worked through my last rad appointment and didn't take meds during the day because as an outside salesperson, I drive all the time and didn't want to put others at risk. However, I had to drive to Miami from home for my rad treatments, which is 100 miles round trip, so I might as well work on the way there and back, right?

Try to help your sister with her depression. A positive attitude is important in getting through this. Is she a religious person? I found that my faith allowed me to get through the experience much easier. I turned the whole thing over to the Lord and prayed for His help and strength to get me through the hard spots. It was critical to me. I avoided any type of depression and was positive throughout because I knew He loved me and would help me through.

You and your mother are very special. I'm sure your sister knows that and appreciates it completely. Don't forget that you both need to take care of each other, as well, to be able to be there for your sister when she really needs you. These next 4-6 weeks will be critical. They are the hardest and she will need you a lot. Bless you both for being there for her. I would have been lost without my wife, who propped me up from the first day. My prayers are for all of you and your families.

Kellie: Depression is understandable in someone facing cancer treatment. Not leaving her alone is a great way to help with the depression.

My brother who had tongue cancer did get depressed after he started the chemo w/the radiation. However, my sister-in-law organized a group of friends ('Team Tom')to take him & be w/him whenever he went for treatment. It helped to have different people w/him. He also likes having control and I think part of the depression was the feeling of his life being out-of-control or beyond his control. Your sister might be feeling the same way.

Also, she might need more help that you can give her & she might also need anti-depressants. There are a lot of new anti-depressants on the market, some target anxiety, some panic attacks, some sleep problems, some deep depression. I am not a doctor but there many tools available to fight depression and her doctor can help.

Another option might be a cancer support group. This is an especially nasty cancer and depression is understandable. Talking w/other people (like on this board?) might help her realize she is not alone in this fight. - Candace

Sister to man w/tongue cancer, Stage IV, dx 4/03 ended Tx 9/03. 12 clear exams.

Erik , Constipation has been a factor with the pain meds also. She did increase the patch last Friday as she is in her last six treatments of radiation. To me she seems less under the weather since the increase.


Kirk and Candace, She sleeps a lot during the day. I wonder if this is because of depression or because she does not sleep well at night. Probably both. There has been a discussion about depression medication and support groups with little interest. At this point it takes everything out of her to keep up with her feedings, treatments and Dr appointments. She is also afraid to take more meds. At this time we will do what we can to make her comfortable. It is nice to know that there are options.

Once again thanks for being there,
Kellie

Hi Kellie,
Everything that you describe is pretty much to expected. Fatigue, sleeping all the time, nausea, constipation, depression, thrush, mucositis, dry mouth, mouth sores, weight loss, opportunistic infections, etc. (and probably a few others I didn't list)- they are all well known and expected side effects of treatment. It is very important that the doctors are informed of all of these developments so that they can be properly treated and managed.

She needs to know that things will get better - the hardest lesson to learn is patience and it takes a lot of that to get through this. The last week of treatment and a month or two after that are the worst phase but it will pass. We have all been there and many of us are doing terrific today - we just had a survivor gathering in Vegas and that brought it all home.

As far as the waiting game goes, the official name for the followup visits is "watchful waiting". It gets better the further away from the original treatment date.

I am not surprised that she is "less under the weather" since they increased the patch - this is exactly why pain management is so important.

I would just focus on each day right now and the best way to manage the things that come up, rather than the future scans, tests and all of that stuff.

As far as work goes, some have managed to keep working and others have not - it is a highly individual thing, personally I took a year off and at 20 months post Tx I am just now taking on a full schedule. I did not have surgery to recover from.

You said you lived near the Mayo clinic - are you going there for treatment?

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