#38006 01-21-2005 05:22 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | Thanks for the heads-up re: Amazon.com Cathy. If I can shop for anything online that's always my first choice...especially now we are officially in the winter deep freeze: about 25 below zero this a.m. and a bit colder if you count the wind-chill (which we Canucks always do- makes us seem tougher;0) The SCM muscle which runs from behind the ear to the front of the neck has a very definite lump or thickening at the top which gets very sore when I exercise. I think I'll get the oncologists blessing before I go at the exercises too vigorously. I am sorry at the moment, that I don't live closer to a nice warm place like Arkansas, Fran
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
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#38007 01-21-2005 07:23 AM | Joined: Jun 2002 Posts: 206 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Jun 2002 Posts: 206 | Hey Fran, We have been in the 20's here in Arkansas. I was up in Northern Canada a few years ago. I really liked it and got to see the northern lights. Hope you feel better soon? Cathy
Cathy
SCCA Stage IV diagnosed 01/90 base of tongue with 1/2 removed. With neck resection, radiation and chemo
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#38008 01-22-2005 01:26 PM | Joined: Jun 2002 Posts: 206 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Jun 2002 Posts: 206 | Hi Fran, How are you doing tonight? Cathy
Cathy
SCCA Stage IV diagnosed 01/90 base of tongue with 1/2 removed. With neck resection, radiation and chemo
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#38009 01-24-2005 10:07 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | Sorry for the late reply Cathy, my husband took me on a short trip into the even wilder north of Northern Ontario yesterday. Six hours in the car left me with almost unbearable neck pain...it was an interesting experiment to say the least. Tomorrow I am off to the H&N Clinic, getting the results of the MRI and a little conference with the Docs who have such impact on my quality of life. Because of our universal health care system, we don't have quite the choice/empowerment that you folks south of the border do. That being said, I do think we have some excellent medical minds available, and if I am very frustrated, I can always ask for a referral to the cancer center in Toronto, 5 hours away. Thanks for your replies and concern..I do pray for patience with the hope being that "this too shall pass." You are a great encourager. Blessings, Fran
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
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#38010 01-24-2005 05:58 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi Fran, you seem to be having a similar problem as I have. Namely that too little stretching causes problems and too much stretching also causes problems (sometimes worse) In my case if I try to massage the area, that too will make it almost unbearable. For me it is better to very gently stretch quite frequently during the day. Invest in a good pillow or none at all at night. I usually know as soon as I wake up whether my neck is going to be a pain or not. It is very much agravated by stress and seems to run in 3week intervals 3 weeks good and 1 week bad (I am sure that is going to sound crazy) I have Diazepam for the really bad days. That together with regular asprin works most of the time. Sometimes it is so bad it turns into a headache that lasts for days. From another cold part of the world just down hill from you. 
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#38011 01-25-2005 05:34 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Fran, I just looked at the map and found that Sudbury is actually a little bit south of here. So you are actually "across the hill" from here. 
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#38012 01-25-2005 08:23 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | Hi Mark; Absolutely nothing sounds crazy to me anymore! I have let the Doc know that I am a "worrier" and he has me take 1mg of Lorazepam at night (same family as the diazepam)but I don't think it has the inherent muscle relaxant features of diazepam. Thanks for the info on the gentle stretches, I'll give them a try. I think the ones I was doing were a little vigorous. There are so many changes in our lives/bodies with OC, I am ashamed that as a nurse, I really had no knowledge or appreciation before of the challenges we OC's face. That is on top of the worry about recurrence. My Doc said 50/50 that I would make it for two years...I'm almost halfway there AND I've read the positive stories from so many of you multiple year survivors. I can't help but feel the courage racing back into my heart. It's all forward motion up here...stand still for two minutes and you're frozen to the spot! Cheers, Fran
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
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#38013 01-26-2005 04:46 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | Hi Folks; Well the guessing is over on the neck pain. I flunked my MRI and the docs report a diffuse, poorly defined tumor which has infiltrated the SCM muscle in my neck. Because of its lack of margins the tumor is considered dangerous and the outlook is (quote) "not good". At this point I have to arm myself with a bunch of knowledge for a radical neck dissection which will happen quite soon and all the fun stuff that goes with that. I think I'll start up a new thread more specific to neck surgery tips and problems. P.S. the neck is still sore but the Doc put me on an analgesic called Toradol...it looks like I have traded in that constipation for some good old lack of concentration after all. Blessings, Fran
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
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#38014 01-26-2005 05:45 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 | Fran,
I am really sorry to hear your news. I have not had any surgery but I want you to know I will be praying for His wisdom and guidance to your medical team to find the best possible treatment plan to rid you of this horrible disease.
Blessings to 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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#38015 01-26-2005 05:54 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | Thanks Ed; There are a number of "Prayer Warriors" who have been an integral part of my treatment since the get-go. I am so pleased to add another. With thanks for the blessings sent, and received, Fran
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
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