#7075 03-09-2006 08:16 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Well, I know it's been a while, I've been a bad boy and not been to the board for a while. Somehow time just starts moving and next thing you know, several months go by, then a year or two. Seems just yesterday I was answering a bunch of posts/e-mails from my dear OCF friends because they thought I was in the wrong end of Thailand during the Tsunami. Here it is over a year later and then some, almost 3 years out from my second round of surgery and chemo.
So, still doing good, living in China and trying not to put on weight. Recent visit to US had me put on 10 kilos, (I dont' own a scale that does pounds) and now I've got to either loose weight or buy new pants,,,, again. I should have kept the stuff from my pre-cancer days, but I swore I'd never get that big again.. I was wrong.
Physically still good days and bad days, as much from the stress of living here and lousy food at times as anything else. Still battling tinnitus, or ringing of the ears, only notice it at night because it's so noisy here. What ever you call the business with the neck muscles tightening has actually gotten worse and spread down to upper chest, scared the heck out of me when it first happened thought it was heart problems. Wound up having a cardiac CT, (neat things those are) and all ok. Arteries mostly clear with only a little calcuim buildup, nothing to panic about but to watch a bit.
So, hello to all, and I'll try not to be so much a stranger.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#7076 03-10-2006 12:19 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Bob,
Next Sunday I'll have 3 years post Tx myself and I am starting to get occasional neck spasms myself - Valium usually takes care of it. Hopefully I'll be back in China soon and we can meet for dinner again.
Great to see you back.
Gary Allsebrook
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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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#7077 03-10-2006 03:44 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hey Bob,
Boy did I smile when I saw your posting name. I thought about you the other day, wondering where you were.
I'm also having issues with my neck, not sure why some do and some don't. I had the disection on the left side and it's just so tight, and now it's as if it's pulling up on my shoulder. It's not something I expected, and if I'm busy I tend to not notice it as much, but it can be painful and I feel like it's moving into my chest also. What did your doc say about it all?
Great to hear from you. I'll be three years post surgery April 1 and three years post radiation in July. Time flys!
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#7078 03-10-2006 07:33 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi JetAge,
Saw you signed on the other day and was going to send you a PM but ran out of time. Glad to hear you are doing well. For those of you having neck problems, I suggest you go back to the PT for a tuneup. I seem to go back to mine for about 4-6 weeks every 2 years. Now of course, if I did somes exercises once in a while, ...
Anyway, it is good to hear from you Bob. Been wondering what you were up too. Why is it so noisy in China? Not something I would have expected. Try not to be such a stranger.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#7079 03-10-2006 12:17 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Hi Bob:
I too lapsed from this forum for a while but now I try to remain faithful..
You can never tell when someone out there may need INPUT...
Good to see you back and healthy.....
Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#7080 03-10-2006 03:42 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | I agree with Eileen about PT for ongoing neck problems. In the months following radiation, I didn't feel the need for physical therapy for my neck, but as more time has passed, there has been increased stiffness and pain, and less flexibility. My doctors aren't sure whether it's long-term radiation effects, or the results of a fairly sedentary job, or both, but it got to the point where an orthopedist thought I should start PT to see if it would help. I've now had several weeks of therapy on my upper spine, as well as range-of-motion exercises and working with weights for my shoulders and neck. I'm beginning to see some results, but wish I had focused on this earlier.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#7081 03-10-2006 03:58 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Like you Cathy, I didn't have these issues right after radiation. They really started just a few months ago. I've always had some stiffness since my surgery but now it's far more then that. I have marked weakness in my left arm now and by the end of the day, my neck on that side is quite painful. It feels so tight and stiff. To describe it, I would say that it "feels shorter" then the other side, won't stretch as far.
I am going to take Eileen and Cathy's advice and finally go see a PT.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#7082 03-11-2006 05:07 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Minnie, That sums up my neck exactly..."feels shorter" than the other side, I am still having physical therapy at least once a week to loosen things up. I receive cranio-sacral therapy to help open my mouth, too.....Love, 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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#7083 03-11-2006 05:48 AM | Joined: Jan 2006 Posts: 107 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2006 Posts: 107 | hello carol and minnie,
I am only two months removed from neck dissection but man is my neck stiff and and very tight and hard, is this normal, and should I expect it to subside. lenny | | |
#7084 03-11-2006 07:10 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | I am going to a PT twice a week right now--even though it's a burden on our budget since the insurance isn't even covering half her fee. She does cranio-sacral work inside and outside my mouyth that I really believe has helped my mouth become more moist, as well it opens my jaw more than a day of stretching using the therabite does (but then the next day, the jaw gets tight again--I am hoping if I just keep this up eventually it will break down some of the scar tissue and result ih some permanent loosening).
But on top of the jaw/mouth work, she has worked a lot on my neck as well as on my chest wall on the right side of my body which got some radiation from the breast ancer radiation and is tight because of the sentinal node removal under my arm on that side as well.
On top of both the ightness in th neck from rad and in the opposite chest from rad, I actually had a slightly aymmetrical, "shorter" , neck on the left side before any of this from a condition I was born with (called a torticullis) and the PT says my neck dissection scar runs right over the muscle that was actually shortened and weak anyway so altogether I was (and even with PT still may be) heading towards some serious neck problems after radiation-especially given that I had surgery and raidaiton to my chest on the other side!
The work she does on my neck, stratching the tissue, HURTS when she's doing it but it leaves me loosened up every time. Reading about those of you further out with neck problmes, I'm glad I'm getting this done now and am trying to accept that I may need this for several years....
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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