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Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
I would definitely recommend PT for the stiff neck problems and lymphedema. Mine started each session with a nice moist heat wrap for 20 minutes and then gentle massage followed by stretching of my muscles and arms to get better movement. Each session was closed with a 5 minute back massage. See if you can find a PT that deals with head an neck issues. Maybe your RO can recommend one. PT is usually covered by insurance. Regular massages usually are not.

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
Joined: Jun 2009
Posts: 138
Bloop19 Offline OP
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Joined: Jun 2009
Posts: 138
Eileen, I finally got authorization for PT and I am going to do it because according to my ENT and EZJim it does not get better, only worse. That is just so hard to comprehend with this dang disease. I'm so used to being a fast healer. I broke my shoulder three years ago and was back to work in a week after surgery. I was in pain but I could still type and I could take the pain as I knew it would get better in time. But to ask the ENT when my mouth is going to feel better and have him say, don't look foward to it. It will probably just get worse. That just floored me. I sure didn't want to hear that. I need to get a little different attitude towards food and quit trying to be a wonderwoman and think I should be able to eat anything by now. It's been four months or so since radiation ended. I guess I don't have much patience. And my family doesn't understand anything about radiation to the mouth. They just liken it to the radiation two of them have had to their breast and don't see why I have side effects since they didn't have any except burning. Of course their radiation was also only about 30 seconds compared to our 20 minute zapping.


BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
I too have a tingling in my tongue and according to my ENT a lot of scar tissue which is painful. I am still using my painpatch and afraid to come down anymore, because I do not want to feel any of the pain. My ENT did tell me it may not get much better than now, but it is not going to get much worse either. I hope he is right. The wonderful gift of radiation. I also try to look at it in this way: I am cancer free and knowing that the pain is not from cancer but just the side effects I can live with that.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
I do everything I have been told to do for the burning tongue including brushing it 2 times a day, but it continues to burn away as it wants to,. For my neck, in the morning I get the shower as hot as possible and allow the shower to do a massage on my neck an shoulders for a few minutes. I turn my body slowly in a circle and make sure my neck and that area are completely massaged by the heat. It helps for a couple of hours. Maybe not good, but for me it works.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
Glad to hear you got script for PT and hope you find a good one. Did the doc give you any recommendations? Ask the PT to start with moist heat for 10 to 20 minutes. It helps so much.

As to eating, you need to stay away from the spicy stuff. If your tongue is still burning, has you been checked for thrush? What are you doing for teeth? Can you chew?

If it now summer and all those nice veggies and fruits will available. Try some of them- have some fresh blueberries or strawberries in heavy cream or yogurt or on pancakes. I could eat tomatoes but some find the them too acidy early on. Keep sampling stuff. Just because it didn't work this week dosn't mean it will or won't next week.

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
Joined: Sep 2009
Posts: 60
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Sep 2009
Posts: 60
After a year, fresh hot peppers and some salsa still causes burning in my tongue. It was a good 6 months before it did not burn all the time.
This seems to be the slowest part of healing, but it is still improving. I can however eat hot sause like it was catsup, so it can get better. Be patient.


Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
Joined: Sep 2009
Posts: 229
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Sep 2009
Posts: 229
Ditto on the PT! They started me out on the moist heat also and it felt so good. She did say the longer you wait, the harder it will be. I think it took several weeks and then that was enough. Everyone I talked to after PT said they noticed the difference. I just held myself differently.

I wake up with my neck feeling tight, but just do my stretches and I'm good.


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
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