#54732 04-22-2004 02:25 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | Not feelin' so good lately. Gagging & heaving on thick spit, nausea, weightloss, basically feeling like shit! Can't sleep. Ready to quit treatment! Not really. just having a bad morning/night! Feelin' like a big baby.
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
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#54733 04-22-2004 04:03 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Erik,
Hang in there, and I will pray for you. Dan endured 8 weeks of chemo/rad and it was very hard with the side effects you mentioned. He had a PEG so he didn't lose too much weight, but he lost a good bit. We had many nites of no sleep and more meds, but he made it and so can you! Hope you have a great support system...it's what got us both through this so far. He is 6 weeks post treatment and still can't eat and throat is so very sore, still. He's a bit discouraged that it's taking so long, but doc says this is normal at this point.
Take care and hang in there!
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#54734 04-22-2004 04:34 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Sorry Erik
Now we have you with on this forum you are NOT allowed to quit.. We wont give up on you and we wont let you give up on yourself.. So shout at us and get it out of your system.. THAT'S what we are here for.. Yep we all have days like this.. hang on in there.. you CAN get through this..
love and BIG HUGS
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#54735 04-22-2004 05:56 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Erik, you are NOT a baby. You are going thru a LOT!!!! I took ambien to sleep, worked like a charm, put me out for 8 hours. Can you get some from your doc? You can make it thru all this, it is worth it in the long run, it is just hell right now.......This too shall pass!
Take Care and Hang In......Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#54736 04-22-2004 06:32 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Remember Erik, you are just a man! God picked the right sex to have babies because if it was up to us, there would only be about 1 baby and the rest of us would hear the story and avoid the deed!
Seriously, virtually every one here has experienced what you are from one side of the fence or anther. It is pretty rough for caregivers or patients. Take it a small step at a time and stop every week or two and note your progress. You most likely won't see it day to day but after a while you will. Keep swishing some fluids around and keep the goo cleared out. It will get better as time goes on. Hang in there and remember...we all need someone to lean on. We are here for you.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#54737 04-22-2004 07:04 AM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Erik, roll up some gauze and put in in the sides of your mouth. This will soak up some of that thick saliva and give you a little respite. This is how I got sleep when it was at its worst. I also slept propped up, which helped a lot. Remember that thousands of people are going through this just as you are, and many thousands of others have survived it, and you can too. I figured that as long as I could still complain, I was doing okay. (grin). You're gonna make it! | | |
#54738 04-22-2004 08:18 AM | Joined: Apr 2004 Posts: 33 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 33 | Hey Erik I was feeling exactly the same way this morning --- another sleepless night (even after the Lorazepam), the hi cal shake didn't want to go down and I just felt like poo! And I haven't even started my radiation treatments yet. My sweetheart of a sister (my twin) is cheching out aromatherapy options for sleeplessness. I've heard lavendar and peppermint work. Any thoughts? | | |
#54739 04-22-2004 08:33 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 143 | Lavender definitely works.....several drops on tissue or pillow, just make sure it`s the real stuff, also camomile, peppermint is a bit of a stimulant, also ylang ylang is soothing, as is rosewood, also rose, but quite expensive................you can also use oil, such as high quality olive oil and use as a massage............since many of my titles is aromatherapist...........I can say the stuff does work........if I could put Frank to sleep with lavender, it should put anyone to sleep......you can also use a diffuser that mists the air...................I`m noticing baby lotions now are adding lavender..............Dee | | |
#54740 04-22-2004 09:58 AM | Joined: Apr 2004 Posts: 33 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 33 | Thanks Dee - I'll try the aromatherapy and tell you how it works. The idea of taking sleeping pills never really appealed to me. I think I have sleep anxiety --- around 9pm I start getting what feels like a tension headache. I never have headaches during the day and can get in some really good 2 hour naps on the sofa. I should consider becoming nocturnal like a bat. Maybe I should try sleeping hanging upside down. | | |
#54741 04-22-2004 09:58 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | There's no doubt about it: Enduring radiation treatment sucks. You'll pull through it ok. You sound like you're too ornery to quit. Hang in there Erik!
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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