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I think most folks get weight back on from the low point during the first, I think I went from a pre-treatment weight of 178 to 150, then back to 160 inside six months post. Now holding pretty steady at 165 and feeling fine. If I could get back to about 155 that would be perfect. Did no specific muscle building exercises, just walks.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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It depends on how depleted the body becomes and especially after all fat stores are gone. The body then feasts on muscle. Almost any weight loss below 10% is a candidate for muscle catabolism. As that is happening or even before, the fat layers within muscles goes away. This is what gives some bulk to muscle.

Our body has many layers of muscle and they must glide. During treatment a combination of inactivity and the body fighting the toxicity of treatment creates calcium deposts between the muscle layers and once they don't glide well, a couple of things happens. We experience pain but the body gets erratic in managing blood flow as well. This is from two perspectives.

First, the autonomic nervous system takes a hit from radiation in most of us. Second, oxidative stress is increased because of the trauma and the resulting nitric oxide cycle that constantly attacks the interior of the blood vessels. The combination of these two events reduces the efficiency of the body's ability to dilate and restrict blood vessels that then causes more buildup of calcium.

The neurological aspect of this is either caused by cellular level scar tissue in the nerve myelin or it is caused by damage to the anterior horn of the cervical spine, where lower motor neurons are stored, or the cranial nuclei of the brainstem. We are born with millions or as high as a billion lower motor neurons. Some muscles have single motor neurons, others have multiple. Lower motor neurons innervate muscle fibers for voluntary muscle movement, in simple terms.

Another important use of lower motor neurons are maintaining muscle tone through an autosynaptic process. A signal is sent to the muscle and returned to the brain to excite the muscle so we don't fall into a ball of mush. Whether it is a delay, inefficiency of the closed loop system of afferent/efferent nerve ending fibers in the neck or caused by muslces dimishing and a resultant vasoconstriction because smaller muscles need less blood, the end result is the same. Muscle fiber will not regain the same bulk and it will be more difficult to maintain the bulk. We get used to an old workout routine and don't get the same result.

Some folks like to take creatine before workouts and what that does is cause water buildup that can tax the battered lymphatic system and kidneys. If you want to hit the weights, remember all the things you used to do to lose weight and do the opposite. For example, don't walk for the first hour after eating, don't do aerobics or cardio at the end of a workout, use cardio to counter fats and avoid a low-fat fiet because the nerves need the fat.

It's all quite simple, as you can see. It only took a few hundred hours to understand how it all ties together.


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
Joined: Nov 2009
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"OCF Down Under, Kiwi"
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I still don't understand the fine detail, Uptown, but you've added to what little I understand of oral cancer treatment and weight. I've put my weight back on. In spite of eating huge amounts of ice cream, however, I'm not veering into the mild obesity I lived with before my latest round of cancer. My treatment so far cross fingers has all been on the right side and even on that side, numb as it is, the muscles seem to be working. I've done a lot of heavy gardening this last 12 months, partly because I haven't had much to do and partly to spite the cancer. I can now lift a heavy bag of compost which I previously found ruinous to the back.

Is there anything about a liquid diet that makes it less likely to help you put on weight?


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Alpaca, it's really more about calories consumed versus calories used when it comes to just weight gain. The question is whether the weight gained is healthy or not. One target ahould be LDL cholesterol < 100 to minimize plaque buildup in the carotid. That can be the difference between lofe and death.


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
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Thanks for that wonderful explanation, Uptown! I knew you had the knowledge to be able to help educate us all. You helped me to have a much better understanding of how the muscles and nutrition work together.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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OMG. I glazed over the first read through. It is a highly interesting yet little discussed topic around here. So many are dealing with such fundamental health issues, a topic like muscle regeneration and fat control post recovery is often overlooked.

In your case, your intense focus on this has given you this unexplainable livelihood. My situation pales but your note got me wondering.

The past six months or so, starting about a year post, I started having pain in my shoulder. It has been battered over the years so was a bit gimpy but with being careful it was painfree. There is pain in the muscle and nerves below the shoulder joint, in the direction of the elbow. When I rotate my shoulder like when pulling on a tshirt or when sleeping on that shoulder I get a pain. It is not that bad as a handful of ibprofen keeps the pain away.

I've been too lazy to get it checked out but do you think it could be related to effects of treatment? It is something I never associated.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Don, many of us who have had a neck dissection have arm/shoulder mobility issues. Yours might be a painful reminder of what you have been thru.

After my mandubelectomy I had a few visiting physical therapists who helped me adapt. I couldnt raise my L arm if my life depended on it. My arm and shoulder problems have not gone away but I have learned to manage them.

It cant hurt to get checked out.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Dec 2003
Posts: 2,606
Likes: 2
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Everyone gets shoulder pain after rads but also after surgery. The trapezius muscle is usually the first to atrophy. Next are the scapular rotation muscles. Together, these all work to raise the arm straight out to the side. The shoulder pain you are describing is from either the brachial plexus head near the cervical spine getting bound up in the scalene musclesor an impingement where the nerves travel through the shoulder and down the arm.

If you try to reach behind you towards the back seat of the car with intense, sharp pain, that is from radiation. It can even damage the rotator cuff, or cause pain at the acromioclavicular joint where the shoulder and collarbone connect.

Christine is right and you should get it checked. It may take periodic physical therapy sessions but it will get worse with no attention.


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
Joined: Mar 2014
Posts: 286
"OCF Down Under"
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Posts: 286
I didn't realise rads caused shoulder pain, and obviously neither did my GP. I just assumed it was related to my lack of mobility and that everything had seized up. Acupuncture was recommended by the GP who was looking for a drug free adjunct to wean me off the opiates. It proved very helpful, along with slow release paracetamol.

8 months post treatment my weight hasn't budged. Not a bad thing, I'm at my ideal BMI I'm told.

I never understood acupuncture and considered it quackery. But I found it very useful and did it with the approval of my doctor. It might be worth considering.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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Dave, it is related to lack of mobility and the shoulders "lock up" as well. It's just hard to tell the root cause but radiation exacerbates the issues from damage to nerves and blood vessels.

The true difficulty is doctors want to get to the root cause when radiation, chemo and surgery all create conditions that minic many well known diseases/disorders. Remediation is the difference in trying to effectively manage the issues.


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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