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Joined: Jan 2006
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Joined: Jan 2006
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well folks I am finally back after surgery on the 11th and have been thinking about you all since then. I am still staying with family members so do not have total internet access until I get home. surgery went very well with a positive pathology report ( 22 lymph nodes removed 1 with scc, which they new to begin with ) however it still seems like I was feeling much better before , get my staples removed on thursday, about 50, but seem to eat less and have more problems with feeding tube, much nausia, that being said I had no nerve damage and my amazing surgeon said my surgery was flawless, no sore arm or shouldar, no effect on lip or tounge, but my face, ear and neck are still very numb (totally) will that come back if there were no nerves cut? It is driving me crazy in this absolute cold weather (upstate NY) maybe I am complaining to much I don't know but I am sure glad to be here, and have to remind my self to think in terms of months not weeks. I would love to hear some more positive notes, they are so uplifting, I am passing this site on to my ENT when I see him on thursday. Thanks a million to all here. lenny

Joined: Apr 2005
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Lenny, sounds like you are doing well after your surgery. My hubsand has some nausea problem while using the peg tube. We helped to manage that by #1. slowing down the amount that went into the peg at one time, #2. Thinning the nutrients with water and #3. doing smaller amounts with more frequency. There are still areas of his face and chin that are numb so that issue may well take you a while. Sorry it's so cold where you are. I think the cold temps are hard on our bodies. But Spring is around the corner-at least for us in the South smile So come join us. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Joined: Feb 2005
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Lenny, From one upstate NYer to another: Get some good thick SOFT scarves and bundle them around your neck as soon as it has healed enough not to ooze on them. I still have some numb patches on my upper neck/under my chin-just numb at the skin level--from my neck dissection which was almost a year ago. I think there will always be some numbness there--even though no major nerves were cut. Also my skin there just seems to be very sensitive to any irrittion so soft, not scratchy, scarves are important.

Everything about one's experience of the after-effects of treatment for this disease (drymouth, neck stiffness and irritation, etc.) are made worse by winter I think.

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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Lenny,

The numbness can take quite a long time to go away, but mine eventually did -- as I recall it was well beyond a year after the end of treatment by the time all the feeling had returned.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
Joined: Jul 2005
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Hi Lenny,

My one year aniversery for my neck disection will be Jan 31st. It takes a while. The numbness and feeling will take a long time. I still do not have much feeling on the side where they cut. I started to work out two weeks after surgery. The exercise really helps. I also had physical therapy. masssage, etc. You need this to get the blood flowing. I'm sure with exercise and a little stimulation once the staples are removed, you will start to feel better.

Steve


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
Joined: Jan 2004
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Hi Lenny, I had the neck dissection done in May 2002, I still have physical therapy treatments at least once a week. It helps so much with the neck issues. The scar area is still numb if you can believe it, or at least it feels that way most of the time, sometimes I get a pulling feeling or almost like a gripping around my neck, it is hard to explain. I massage it every night with a cocoa butter stick, I was told by a surgeon that would help it. Good Luck....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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Welcome back! May your recovery go well and never have a reoccurance...
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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Lenny, I agree with the great tips that Amy gave regarding the PEG. I had a similar situation with mine last month after I got home. Additionally, I was on some pretty tough antibiotics and that seemed to affect my nausea. In fact , I had nearly two weeks where I couldn't keep anything down and had to start over with Pedialyte a little at a time and work back up to the Jevity cans. They did change my antibiotic and I was able to get it in liquid form and not crush and dilute the pill form. That seemed to make a difference. If you are on antibiotics (or any medicines) that may have some effect on your digestion and stomach sensitivity. Just a thought from a newbie!


Ruth E. Moran
dx minor salivary gland adenocarcinoma 4/99, resection 5/99;
rec 1 lymph 2 cm 7/03, mod. rad. neck resec. 7/03;
rec primary 10/05, resec, pec flap, PEG tube, IMRT 2&3/06, Osteonecrosis right mandible removed
1/08 metastatic lung cancer, 3/08 clinical trial MD Anderson

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