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Joined: Jan 2015
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Hello All,

My head and neck surgeon Doctor told me that no matter how much food I consume following Radiations, I will not be able to gain fat for up to 1 year post-treatment. So far his statement is true, as the last 3 months I've been stuck at 132.7. I finished Rads 11-4-14, Peg tube placed on 10-21-14 and taken out 1-9-15. I've been eating 3 meals by mouth since mid December and I can't pack on a single pound. I know I must be eating little snacks in between my meals but I don't feel like this will make me put on weight

So if this problem persists, I'm wondering if anyone on this forum has gained muscle mass in the year following Radiation Treatments. I started lifting weights 3 days ago and I'm very curious to know if I can develop a solid build of muscle without the help of gaining Fat (unfortunately since I'm so skinny.)

My previous weight pre-cancer was 152 at 5'8, with only 8% body fat and about 45 lbs of muscle. Please let me know your experiences with weight gaining if you've went through Radiation. Thank you very much!
Brandon


Male, 23 year old�Dx 6/17/14 with SCC R Lateral tongue
CT scan clear lymph nodes 6/20/14
HPV-, form-smoker, casual drinker
Right Hemiglossectomy Surgery 6/24/14
(Not reccurrence but went to NCCC instead)
Right neck diss., trach, radial free flap, right tongue diss. surg 8/11/14
PT1N2B..3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) and Cisplatin (2x) begun
10-21-14 peg in. 11-4-14 IMRT rx comp. 1-9-15 peg out
3-27-15 Recurrent tumor in lymph node, Left neck diss.
10-29-15 passed away
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Brandon you still have a long way to go with your recovery. It takes 2 full years for a patient to completely recover from what you have been thru. For at least the first year post rads, push the calories. Right now taking in 4000 a day isnt too much, nor is 5000. I know it sounds like an astronomical amount, but its not. If you are working out during your recovery phase you need to account for those lost calories by pushing even more daily. Adding protein will help rebuild your muscles.

The YMCA has a free program for cancer survivors thru Livestrong. There might be some experts there who could help you develop a routine to help build muscle mass. I know some forum members are really good at this type of thing, hopefully Uptown will reply soon. He works out and is very knowledgeable. I think he told me some days he takes in 6000 or 7000 calories and still cant gain weight. His situation is different (just like everyone's) he has been thru the war many times and somehow survived.

Good luck smile



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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Brandon,

It has been one year Jan 8th for me and within the last month I have started gaining. For the last 10 years I have been close to 200 lbs even when running half marathons. I dropped down to 180 and started freaking out. I felt weak with the weight loss and started lifting weights. Nothing worked until recently and all of a sudden I gained ten pounds. I don't think it was anything that I did. I believe it just took time.


Curt

Age 43, nonsmoking, social drinker
Left tonsil cancer
SCC HPV+16
Stage IV
tonsillectomy, robotic radical tonsillectomy and neck dissection
4 of the nodes removed had cancer. 2 had extra capsular spread.
3x cisplatin 33x rad 11/18/13
Completed treatment 01/08/14


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Yeah it seems like the 1 year non-weight gaining was a correct theory in your case CWB, I'm still going to continue lifting weights. I know it's going to be more difficult to gain muscle mass because of radiation, but I'm going to push my hardest to build a stronger frame. And my lifetime membership is $77 a month. Being a normally active unemployed 22 year old, I'm going to make full use out of the gym almost everyday (lifting, sauna, jacuzzi, steam room, shower.)

And thank you ChristineB, I'm going intake as many calories as I can from here on out and keep everyone updated on any weight or muscle gains!


Male, 23 year old�Dx 6/17/14 with SCC R Lateral tongue
CT scan clear lymph nodes 6/20/14
HPV-, form-smoker, casual drinker
Right Hemiglossectomy Surgery 6/24/14
(Not reccurrence but went to NCCC instead)
Right neck diss., trach, radial free flap, right tongue diss. surg 8/11/14
PT1N2B..3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) and Cisplatin (2x) begun
10-21-14 peg in. 11-4-14 IMRT rx comp. 1-9-15 peg out
3-27-15 Recurrent tumor in lymph node, Left neck diss.
10-29-15 passed away
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Please have testosterone levels checked. I've talked about this here before, but that hormone could be trashed from scatter radiation to the master and commander gland the pituitary. Low T means it makes it even harder to put on muscle mass. Your milage may vary, as they say. but the test is simple and the solution does work for many


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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I handled treatment pretty well and wasn't gaining weight at the 3 month mark either. If you were to make a pie chart of how your calories are being used almost the entire pie would be "repair". Weight is gained (in simple terms) by taking in more calories than you use. Even 3 months out that is a tough equation. My weight gain started right after I returned to the gym. My first visit back was horrible as I had lost a great deal of muscle mass and had no energy at all. I might not have ever gone back but my wife pretty much made me go 3 times that week. I gained 4 pounds. It's almost as if my body needed some sort of signal that things were returning somewhat to normal. My pie chart was still mostly "repair" with an ever increasing slice called "building muscle".

The best advice I can give you is to become active. Please do not compare active now to what active was before treatment. Just do what you can, especially when you don't feel like it. It will start positive momentum that can carry you through. I am actually a better runner now than before treatment because of the discipline I was forced to learn during my fight.

Godspeed!


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
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Just read the original post (should have read it first). I was lifting heavy (for me at least) before Dx and weighed about 210. No PEG during Tx and ended up losing 40 lbs before turning the tide. Not sure exactly when I started lifting again. I am 3 years out now and work out 3+ times a week. I am no where near where I used to be max-wise and really don't care. I am leaner and more defined than ever at 53 yrs. Gained ALL the weight back and decided I felt best around 185 so I dropped 15 and have been here 5 months or so.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
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My husband is 2 months post treatment and still losing. In fact he has lost more now than either after surgery and radiation. He's 6'5" and is typically 200 lbs, now he's 170. We just got Scandishake to help add calories. 580 calories in each packet when you add it to 8 oz of whole milk. He likes the taste and it's easier to do 3 of those that 6 ensures. I bought them online through Amazon. Im hoping this works! Good luck to you.


Maura
Working caregiver of husband Don ,56yrs, non smoker, casual drinker
6/14 DX squamous cell carcinoma on base of tongue, HPV positive
8/28 Radical neck dissection w/ removal of 31 lymph nodes and partial pharyngectomy T2 w/ MET to lymph node
8/30 emergency surgery to cauterize bleeders in throat
10/1 Began 1st of 30 tomotherapy
11/14 end of radiation
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MAK, try getting a 4th Scandishake into your husband every day. If you are really lucky 5 would be even better. I know how difficult it is to eat when you arent hungry and are in the recovery phase. But every single day your husband should be taking in at least 2500 calories and 48-64 oz of water. Taking in 3000, 3500 or even 5000 calories daily during recovery isnt too much. His body has been thru the war, when showing a weight loss that means he isnt taking in enough and recovery is even harder. He should continue this high an intake at the least until he hits the first year post rads. Adding some high protein whey powder helps speed healing also.


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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I weigh 145-150, have been consuming about 4,000 calories a day for over 2 years and am biking 30 miles 3 times a week and lifting total weight of around 100,000 lbs a session after biking. Read up on the theracycle therapy. Without biking, I cannot lift much weight. There is no one thing affected and no magic bullet. It is beyond normal analysis and reasoning and no medical doctor has yet to understand or comprehend what is going on. It is common for me to lose 4-6 lbs over night. I went through this during treatment and it lasted almost a full year, got back from 137 to 220 for 4 years, down to 115 year 9, back to 145 year 11.

I have had almost a dozen medical doctors spent countless hours on this, including hematologists, neurologists, neuromuscular specialists, endocrinologists, hospitalists, even doctors specialized in the After Care Experience that track only cancer survivors.


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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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
Posts: 644
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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: 7
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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
Joined: Jan 2013
Posts: 1,291
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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
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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
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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
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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
Joined: Jan 2013
Posts: 1,291
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Very interesting. I just figured it was since I sit at a terminal hours on end, that was the primary cause. I do find when I make a conscious effort to stretch and take more breaks the pain is noticeably lessened.

Is an orthopedist specializing in shoulder the go to person or is it more important to find someone who treats post tx HNC and other radiation blasted survivors?

I've been considering hitting the gym but do not want to do that until I talk with PT as it would be just as easy to make thing worse than any better.

Don


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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Posts: 15
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Hey everyone just a quick update. Back on January 22nd I was weighing 132 lbs, I got a gym membership and have been going a measly 2-3 days a week. I've been still eating around 3 meals a day and I added in a protein shake about 5 days a week. I jumped from 132 lbs and today I weighed in at 145 lbs. I'm so glad to be able to put on this weight as it was very much well needed!


Male, 23 year old�Dx 6/17/14 with SCC R Lateral tongue
CT scan clear lymph nodes 6/20/14
HPV-, form-smoker, casual drinker
Right Hemiglossectomy Surgery 6/24/14
(Not reccurrence but went to NCCC instead)
Right neck diss., trach, radial free flap, right tongue diss. surg 8/11/14
PT1N2B..3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) and Cisplatin (2x) begun
10-21-14 peg in. 11-4-14 IMRT rx comp. 1-9-15 peg out
3-27-15 Recurrent tumor in lymph node, Left neck diss.
10-29-15 passed away
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[quote=donfoo]Very interesting. I just figured it was since I sit at a terminal hours on end, that was the primary cause. I do find when I make a conscious effort to stretch and take more breaks the pain is noticeably lessened.

Is an orthopedist specializing in shoulder the go to person or is it more important to find someone who treats post tx HNC and other radiation blasted survivors?

I've been considering hitting the gym but do not want to do that until I talk with PT as it would be just as easy to make thing worse than any better.

Don [/quote]

Don, I never answered your question. I went to an orthopod, two actually, and they both did surgery, because that is what they do. I think that caused more problems. I also have had at least a hundred PT sessions and never could maintain the gains achieved. As soon as I got into a cold, air conditioned room, everything tightened up. My most recent successes were using what the PT's did but rapidly accelerating the additional weight. Then I go to an ART provider once a month for a tune up. With about 100 weeks in a row at the gym, a big portion of my back filled in where a lot of atrophy was. It just inflated like a tire about 4-6 weeks ago. The ART dude was blown away and the therapist that works on me was shocked as well. They have been on this journey with me for over 2 years and the office for 5.


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: Dec 2003
Posts: 2,606
Likes: 2
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BrandonK427, that is great news! You seem to be way ahead of schedule. God job.


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: Jan 2013
Posts: 1,291
Likes: 1
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So PT is the most likely specialist to get some release of the tension and cramping. What does ART stand for? My searching only found art as in paint brush therapy. lol


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: Dec 2003
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PT is for lost range of motion mostly, designed to free up soft tissue.

Active Release Technique

If you aren't doing anything October 17, come to the Houston walk. There will be a presentation by my ART provider.


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: Jan 2013
Posts: 1,291
Likes: 1
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Ed,

I do have limiting motion that shouts out in the shoulder toward the end of normal range in the upward direction. This is still well above horizontal so not all that confining but does make putting on a jacket a bit ouchie at times. When lying in bed on that shoulder does cause pain at times as well, enough so I wake and have to roll over.

I see ART is practiced by chiropractic folks. Do you know if this is generally covered by insurance under chiropractic services?


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: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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It's covered by my insurance but limited to 20 treatments a year. The beauty of ART is the mostly work on muscles and nerves.


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: Jan 2013
Posts: 1,291
Likes: 1
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Ed,

Who generally does referral to ART?


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: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 2,606
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You do, unless your insurance requires chiropractic referrals.


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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