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#75854 06-18-2008 07:47 AM
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I was just looking at John's question on taste buds and had one that follows very closely. My taste buds are coming back albeit very slowly but I continue to have a very tight and sensitive side of the neck where the surgery took place. I know you have lots of scar tissue to deal with and swelling ( edema - sp? )but I had hoped for better than this and I also must have a good slug of liquid to get food down on about every bite. Sound familiar? Can I expect a whole lot of progress in the next several months? Thanks!

Bill


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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Bill,

Make sure that you are doing neck exercises every day. I am 2 1/2 years post surgery and it is much better, but will never be perfect. My doctors suggested that I take 150mg of zinc for my taste buds along with some l-glutamine each day to help heal the tissue. My taste is back 100%, saliva about 85%, but neck is still a bit stiff. Shortly after surgery my skin all around the surgery site was very sensitive as the nerve ending were trying to repair. That has all gone away and many of the nerves have repaired themselves. All in all I'm thrilled with my recovery.
Regards,
Rob Jaffe


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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Bill,
I too was put on Zinc to heal taste faster and I think it worked. I could taste most things a few months after rads ended. Had to drink tons of liquids to get food down and cut everything into tiny pieces, but could eat as long as it was not hot spicy or acid. Give it a try.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Thanks Rob and Eileen. My ROC had actually recommended zinc a few months ago. I tried it briefly but I was on a few other meds after coming off tx so I stopped as I did not see any improvement. I think I will give the zinc another shot and look into neck excercises, etc.
Bill


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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Bill,

I am 2 1/2 years out from treatment. I still have stiff neck and tender to touch side of neck. It has improved but must stretch daily. I found that doing in the shower made it feel real good. Also when laying down with head and neck support twist neck to right and left, up and down hold position a few minutes. Also raise arm on the side of the surgery. Most of us have some impairment do to surgery on that side.

I was just thinking today that I feel much better than I did a year ago. So things just take a long time to heal, and sometimes longer than what we would like. Improvement, no matter how small are steps to recovery.

Take care, and welcome to OCF.
Diane smile


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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Thanks Diane. I go see surgeon tomorrow for regular check up and we have list of questions. I have learned everyone is different in their recovery and healing is a slow process. This site is umbeatable as most have made the journey is some form or fashion. I am not satisfied with a few mouth issues and I'm concerned about future dental conditions but will hold off until after visit tomorrow.

Bill


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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Bill -- I am approaching the 1 year anniversary of the end of my treatment in a couple of weeks, and continue to struggle with the neck tightness and tenderness. I have tenderness on both sides, as my neck dissection was bilateral. I can eat reasonably well, but do need considerable amounts of fluid for some foods. My taste is about 85% of the way back, maybe a little more. Chocolate and a few other things are not very good yet, and overall taste is somewhat muted.

Dry mouth is ongoing, but I use the Biotene products religiously, and drink lots of water. Salagen helps a little.

Finally, I just had about $2,500 of dental work to repair radiation damage to most of my front teeth. Still have some discoloration near the gumline, but DDS says that daily fluoride treatments and rigorous brushing, flossing can prevent these from decaying. Teeth are still all there, and they still work, so I figure I am ahead of the game.

Keep posting and asking questions. We are all here to help.



Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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Bill...the head and neck exercises will help with the stiffness. I will celebrate my one year date in Sept. and still have a lot of tenderness on the incision site. The stiffness I am dealing with is due to fibrous tissue and I am still on a PEG tube. Nothing, not even saliva goes down. So all of you putting down soft foods with lots of liquids, I envy you. I most likely will be on the tube permanently. For the stiffness I use a heated "bean bag". This is a flannel sack, for lack of a better word, that is actually filled with cracked corn. You heat it in the microwave and wrap it around your neck. I think you can find these online. My daughter sent this one to me. Boy does it feel good! Good luck to everyone here. Katie


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