| | Joined: Jan 2014 Posts: 4 Member | OP  Member
Joined: Jan 2014 Posts: 4 | Are your experiencing long term pain? John always complains of neck, shoulder pain and is still on major drugs. Is this normal?
You know the side effects of codeine are constipation so we deal with that periodically too.
I am so blessed to have found you and your wealth of knowledge. Why doesn't he want to know?
JULIE
johnswife and caregiver
stage 4 SCC, HPV, Resection and Reconstruction od soft palette 35 Radiation txs, 2 Cisplantin, Spent Dec 2012 in ICU for Aspiration pneumonia. Came home from Charleston jan 2013, All clear PET in Nov.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yes the neck and shoulder pain is normal. He should go for physio it will help return function and rebuilt the muscle - hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jan 2014 Posts: 4 Member | | OP Member
Joined: Jan 2014 Posts: 4 | Thanks for your response. You suggest physio. Physical Therapy? Or something else? Sorry wasn't sure.
JULIE
johnswife and caregiver
stage 4 SCC, HPV, Resection and Reconstruction od soft palette 35 Radiation txs, 2 Cisplantin, Spent Dec 2012 in ICU for Aspiration pneumonia. Came home from Charleston jan 2013, All clear PET in Nov.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Did he have a neck dissection? Many suffer long term neck issues after a ND. I didn't have one and I don't have any neck issues. Remember everyone can be different.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yes - I mean physio therapy. I still have a bit of trouble with my rotator cuff (shoulder area) if I sleep on that side. But I started therapy right after surgery and except for a few weeks off for radiation I maintained it - now my shoulder/neck is around 98-99 % at first I couldn't even lift my arm without effort and pain and it wouldn't go much past my waist (certainly nowhere near shoulder height) now it still has a bit of weakness but for the most part it's as good as the other arm. My neck is the same - numb for the most part but acupuncture and lymphatic massage helped with the lymphedema, and loosening up of the muscles and softening he area. My range of motion is pretty close to normal. Best of luck
Last edited by Cheryld; 01-20-2014 08:07 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Nov 2013 Posts: 18 "OCF across the pond" Member | | "OCF across the pond" Member
Joined: Nov 2013 Posts: 18 | Hi Julie,
I had surgery in November which involved neck dissection. I am still on codeine but have managed to reduce this to mornings and night time only. I still have stiffness in my shoulder and it is painful at times. I do the exercises the hospital gave me to do 3 times and day and there has been improvement. I try not to compensate too much and do my best to use my right arm as normal although I do pay the price at times where it aches more but this is normal. Best of luck x
Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
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