Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Aug 2013
Posts: 144
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Aug 2013
Posts: 144
Post ND. Treated area is hard like a stone. If you put your finger and pressed it against you forehead. That is how much give there is in the left side of my neck. Is this normal? Please advise. I am worried as I have trimus from the operation as well. Thank you in advance. shawnU


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Yes likely from lymphadema, very normal, they've removed nodes that usually carry lymph fluid. So it's trapped because the pathways no longer exist. Normally I would suggest lymphatic massage but in your case that's a no. Not with failed margins and further treatment pending. I would wait until after treatment is finished you've and gotten a clear scan before attempting any kind of massage. (This gets the fluid moving and if there's cancer present that's a bad scenario) just know that its normal. Now if the area becomes Hot and red, then I would be concerned about infection. Hugs and best of luck. I would ask just to be on the safe side, the next time you see one of the specialists.

Last edited by Cheryld; 09-22-2013 06:14 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: Aug 2013
Posts: 144
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Aug 2013
Posts: 144
thank you for the info Cheryld. I have been massaging the area myself. AHHH! Hope I didn't spread anything around.


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
I think light massage is okay. Having it done by a professional might actually get things moving. That's something I would wait for. wink


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: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
It's really normal. After my dissection, there was of course the loss of feeling (permanent), and when I touched it, it felt like I was touching an old leather saddle. I can sense a bit there now when it is touched many years later, but it still feels hard and alien� but it's the "new me" what can you do? Something will never go back to the way they were. There are work arounds for some things, and they are worth trying-other things it is a matter of acceptance.


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.
Joined: Aug 2013
Posts: 144
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Aug 2013
Posts: 144
since I started this thread my fibrosis has spread to the middle of my chest leftward to my shoulder and down my upper arm. up the back of my neck where it is met by lymph fluid that goes up to the base of my scull. and the lymph is now filling available space on the other side of my head( right side ).I am also noticing some numbness in my left forearm down to my finger tips. itching of the swollen areas is becoming noticeable. and swallowing is now causing a vacuum effect that is causing my ear pain to become worse. the skin in the fibrosis areas is becoming shiny and thin. (like it is stretched to the limit). I have no fever and areas are not warmer than others. as if this were not enough I am having pitting edema around my ankles along with excessive urination. I know that avoiding dehydration is important during the healing process. but I am here looking at a lot of empty water bottles. and I have been trying to eat the recommended 2500 calories to promote faster healing. But have noticed that my nose and eyes water during and for a little bit after eating. I know that this can be signs of lung aspiration. but I have not coughing fits. just have to clear my throat a lot. my blood pressure is normal. but I am going to the restroom every half hour. My pain meds are not doing the trick anymore so I have done a no no. I have increased pain regimin by 5mg oxycodone every 4 hours.( I emailed my prescribing doctor and let him know that I was doing this). so my ass is covered. The pressure in my left head and neck is becoming so intense. maybe is should just stop typing and slow down and relax and see it it gets better. shawn u.


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
You need to go to your doctor(s), and tell them everything, get blood work, and anything else needed to identify the causes, and may be able correct these conditions, The swollen ankles, frequent urination, can be a sign of the kidneys not functioning properly, but can be many other causes, I'm sure, like diabetes, whole body inflammatory disease, inactivity, water intoxication, not saying that's the case, but some happened to me, so it's best to see a doctor with your history, and something minor, can become major, not to scare you, but for you to see a professional.

You probably need more than 2500. It's based on your height, weight, BMI, activity, medical conditions and from recovery from surgery and treatment. It may be more like 3500, but I'm no doctor or nutritionist to figure yours out, and should ask them. Excessive protein can cause a hardship on the organs, especially the kidneys. Some advocate 1g for every pound you weigh, some say half your weight in protein. Water should be about half your body weight in liquid ounces, plus more depending on your height, the elevation where you live, weather, medical conditions. There are many water app calculators on line to figure it out, but it's easy on your own, advise from medical providers. Consumption should be 80% liquids by mouth, and 20% can be by food. Coffee is a diuretic, so they say for every cup of coffee, drink a glass of water.

Good luck Shawn


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
I'm going to ditto what paul said - you need to see your dr. it could be a number of things. but they are best suited to figure out what exactly. Because you are not a text book case by any means and you are on HIV drugs there could also be adverse reactions. hugs and keep us up to date.


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: Aug 2013
Posts: 144
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Aug 2013
Posts: 144
thank you guys I saw my HIV doctor today.(the only one I could see on such short notice. He think that I am going to be ok vitals Good 117/68 pulse75 no fever. the edema in my legs must have been from sitting at this machine for hours trying not to bleed.LOL. Hey thought I was water logged. I was drinking so much cold water because I had read that it helped in constricting blood vessels. He had results from my last CBC and all orgains are in acceptable ranges. In fact my CD4 was up over 230 and my viral load is undetectable. Platelets are on the rise. still low but better. my hemoglobin has started to rebound from the bleed. One of my HIV meds, Ritonivir is a cyp??? inhibitor. basically it increases plasma levels of opiates by 3 fold. and half life is increased al well. So I was really out of it. Oh and my fasting blood glucose was 107 (withing normal range). and this test was done just a week ago. so he highly doubts blood sugar problems. upon listening to my lungs he concluded that if I was aspirating it was very little but probably me being a HYPO! Chest sounds were normal, and resting stomach nosie normal. He made sure that I had an appointment with PT and another meeting with speech/swallow. therapist. vacume effect had gone away by morning. So he took me off the pain patch and gave me as needing IR oxycodone. And if I felt that I needed to go over what he had written just to drop him an email. So I was altered by opiates in high concentrations. I feel a bit like a heal. But he thought that I needed to address the real problems soon and I am. so thank you so much Cheryld, PaulB, Brain. for your help. Shawn U.


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Sounds like you had a thorough physical, for peace of mind.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Page 1 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
iMarc845, amndcllns01, Jina, VintageMel, rahul320
13,105 Registered Users
Forum Statistics
Forums23
Topics18,170
Posts196,933
Members13,105
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5