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#37863 09-24-2004 06:19 AM
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Kellie Offline OP
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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

#37864 09-24-2004 06:54 AM
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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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#37865 09-24-2004 09:52 AM
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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.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#37866 09-24-2004 10:08 AM
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Kellie Offline OP
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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

#37867 09-24-2004 10:49 AM
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Kellie Offline OP
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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

#37868 09-25-2004 03:58 AM
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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!


dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
#37869 09-25-2004 07:22 AM
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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.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#37870 09-25-2004 08:17 AM
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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.


Sister of guy w/base of tongue cancer, Stage IV, Dx 4/03, finished Tx 9/03
#37871 09-27-2004 07:24 AM
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Kellie Offline OP
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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

#37872 09-27-2004 08:05 AM
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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?


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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