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#61668 08-28-2007 08:27 AM
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My husband finished his 35 rounds of IMRT rads on Jan 5,2007 for tonsil cancer.
PET scan showed clear at 2 months.
At his regular checkups the DRS are very happy with his progress.

He is having a zapping sensation that starts at the base of the neck all the way into the groin area. Not really painful but seems to happen when he moves his neck suddenly, such as looking up after typing on the computer.
Anyone else experiencing this?
Thank you for any response
Maggie


caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
#61669 08-28-2007 09:42 AM
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Maggie,

Ha!

I have the same thing. My RO says that's his side effect. He says it will go away with time.

I get it when I tilt my head down quickly.

Anyway, it's called by some French name (you can search for "tingle" or "tingling", if I recall correctly, and get more information).

For me, it's not bothersome.

Best wishes,

Chris


SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
#61670 08-28-2007 10:50 AM
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l'hermittes, a demylinization of the spinal cord from the radiation. I had it for a few months, it will disappear.


dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
#61671 08-31-2007 05:37 AM
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Thank you Chris and RileyMc

What a interesting name for it.

RileyMc
Have family who lived in San Luis for years.
Sure is one of the prettiest places in Calif.
Maggie


caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
#61672 09-15-2007 05:13 PM
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I just stated getting this about 3 weeks ago! It is almost like the feeling of putting a finger in a light socket. Sometimes it goes down my legs and sometimes to my hands eminating from the spine. It really freaked me out. I thought it was a late side effect of the cisplatin, but perhaps it is the radiation.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#61673 09-15-2007 05:31 PM
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[quote] Had this for three years (under the care of ENT) before final diagnosis[/quote]THAT ENT need to lose his license, at a minimum. How many people has he killed?


dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
#61674 09-16-2007 03:35 AM
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While I would like to totally blame that ENT for my misfortune, I certainly took my sweet time getting my tonsils out. I had a CAT scan 9 mos before surgery that said---Cryptic Tonsil, NO EVIDENCE OF MALIGNANCY. I took that to heart and took my time scheduling surgery. I was told I had a 2% chance of it being a malignancy.Great odds , I thought. I was young and healthy, just a little tired. I didn't miss any work. I myself thought it was no big deal. Whoever heard of tonsil cancer?? So I feel I must take part of the blame for not getting this done sooner. A different ENT performed my surgery---imagine his surprise when he discovered it. Imagine my surprise as he told me as I came out of anesthesia. Needless to say I am now under the care of the second ENT. Oh, and I also learned at Dana Farber that CAT scans do not usually pick up malignancies. Wish I knew now what I knew then


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#61675 09-24-2007 07:28 AM
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Okay---this zap or whatever-you-call it is getting alot worse. Should I see a doctor about it, or wait for my next oncology appt?(a few weeks). I went running today for the first time in a long time and if I had my cell phone with me I would have called someone to come and get me.I felt like my legs were numb and going to give out. Does anyone know anymore about this?


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#61676 09-24-2007 08:10 AM
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My nick-name is "I'm calling the DR"

Our Cancer Team is fantastic and will always take a call. I just ask the tech ho answers the phone to ask one of the DRs when they have a minute if it is something that can wait till his next checkup. They are fantastic at calling back.
Better to be safe than sorry.

If this is the first time you have run since treatment there may be changes.
He also gets a tickling sensation, like a hair under his shirt, in the same spot once in awhile.
Radiation is a very generous gift.
Maggie


caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
#61677 09-24-2007 02:52 PM
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Thanks Maggie--I ran a couple of times in July, until my father became terminally ill and I was caregiver until he passed away 2 weeks ago. I had no problem with the running then. This zapping started about a month ago, just as my father was becoming quite ill. Perhaps the stress of that brought this on??


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#61678 09-26-2007 01:14 AM
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Husbands zapping started a few months after treatments ended.
They are sometimes more frequent. No real pattern to them.
Just a reminder from the radiation.
Maggie


caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
#61679 09-28-2007 09:48 AM
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Wow - I'm so relieved that the zapping has not just been my imagination! It started about a month ago, and sometimes it feels like my legs are going to give out. It isn't painful, just bothersome. My zap mostly go down my lower back and legs. It doesn't feel like sciatic pain, but more like the sensation of touching your tongue to a 9 volt battery.


37yo female T1N1M0 stage 3 tonsil cancer; 2 neck nodes removed 4/07 (1 clear, 1 malignant)T&A 4/07. 27 IMRT tx completed 6/07, no chemo.
#61680 09-28-2007 10:49 AM
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Rebecca---looks like we finished treatment at the same time, and started zapping at the same time. Guess we're right on schedule! I agree, not painful, but a little worrying. BTW, I find it interesting you were stageIII with a malignant node....no chemo?? did you have full neck rad or just one side?


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#61681 10-01-2007 02:27 AM
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The IMRT's focus area was the right side, from my jaw to my collarbone. My case went before our cancer center's tumor board, and it was agreed that because the malignant tonsil and node were removed, chemo was not needed. Hope that it doesn't come back to bite me in the future...looking back, I was relieved not to need chemo and felt satisfied that the med oncologists had reviewed my case. It is good to connect another tonsil gal - How are you feeling overall?


37yo female T1N1M0 stage 3 tonsil cancer; 2 neck nodes removed 4/07 (1 clear, 1 malignant)T&A 4/07. 27 IMRT tx completed 6/07, no chemo.
#61682 10-01-2007 02:44 AM
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I am feeling pretty good---back to work part time. Busy doing a lot of yard work, and running a little bit. I have to say I am exhausted after work(I am a waitress; start at 4:30AM til 2PM).I have fairly dry mouth still, but not so much that I need to use any products for that. I still have swelling on my left jaw where I rceived more radiation, and still get a sore throat, and slight earache on that side. But thats nothing compared to what some people here are going through. I got treated at Dana Farber Cancer Center and the threw everything they had at me. They gave me the same treatment they would give a stage 4 patient; saying they didn't want to see me there again. If I had staying with my original oncologist I would have gotten the same treatment as you, and I wouldn't have had to have a feeding tube. It's interesting the different takes doctors have on the disease. How are you feeling, and how are your side effects?


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#61683 10-02-2007 09:57 AM
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A battery is a good description hubby said.

Hubby did not have his tonsil removed either.
It was located as the primary only thru a PET Scan. Tumor board recomended radiation. We then waited 6 weeks, so he could finish "cooking", and had another PET done rather than have surgery immediatly after rads. PET came back clear.
He goes every 2 months for follow up.

Had a bit of a scare 9/25. Dr at his regular 2 month appt found a 1/2" lesion on the same tonsil. Said it had to be removed. Since the DRs regular surgery day is Friday we went in and did it w/i 3 days. It was sent to pathology while he was still in surgery and came back
CLEAR smile
Just iratated (sp?) from the radiation.
Never heard such great words. They did remove 1/2 the tonsil when they did the biopsy tho.

Maggie


caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
#61684 10-02-2007 10:08 AM
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I too get exhausted very easily - but am back to work full time. Isn't it funny how everyone wants you to feel "normal" again so that life can go on? I feel lucky that I didn't have as tough as time as many that I read about on this site.

I had a scare also a couple a weeks ago - I felt a lump on the opposite of the neck. Had an MRI and it bone, not a mass. Talk about feeling like my life was over!! I see the ENT monthly and have seen the RO once since finishing tx, won't see him again until about 6 months out.


37yo female T1N1M0 stage 3 tonsil cancer; 2 neck nodes removed 4/07 (1 clear, 1 malignant)T&A 4/07. 27 IMRT tx completed 6/07, no chemo.
#61685 10-02-2007 12:31 PM
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Hhhmmm.... I'm starting to wonder if I got 'overtreated'. I wonder if they would have removed my tonsil if they had known there was a tumor in it beforehand. I had a scare as well---some solid 'masses in my thyroid, seven fine needle aspirations; which were difficult and painful due to all the scar tissue from radiation. Pathology was benign on those.Whew! I see my chemo oncologist once a month(missed Sept.!) and my RO went to Isreal--won't see him again!


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#61686 10-03-2007 02:20 AM
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Girlcat,

I think it is very common to compare treatments and wonder why they differ.
Our first ENT was ready to do a full radical neck disecction ASAP, then radiation but told us he only does maybe 3 of them a yr. He said OU Medical Center, 2 1/2 hs away, does probably 6 a week and has a top notch surgical team. We went down there thinking we were setting up the surgery date. That's when they informed us they had a better outcome with radiation first. The stats were good and the possibility of no surgery after the radiation was a factor in our decision.
The tonsil biopsy really was tough on him, can't imagine a full tonsillectomy.
We take it one day at a time.
Does your neck skin look different after the rads?
Maggie


caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
#61687 10-03-2007 07:28 AM
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No my skin looks fine and feels very soft. I was lucky,I never got 'burnt', but my skin did darken and 8 days post TX it finished peeling and looked normal. I was using Eucerin and Aquaphor right from the first treatment, applying it several times a day so I don't know if that made a difference. For some reason, i thought they didn't biopsy a tonsil, preferring to remove it entirely. But maybe thats my ENT's opinion. Interesting, all the different treatments. Hope your hubby's feeling better after the biopsy.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#61688 10-03-2007 07:37 AM
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Funny - Girlcat is worried about being overtreated and I am worrying about the opposite! Just goes to show that there is more than one way to treat the beast.


37yo female T1N1M0 stage 3 tonsil cancer; 2 neck nodes removed 4/07 (1 clear, 1 malignant)T&A 4/07. 27 IMRT tx completed 6/07, no chemo.
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Hi,

I just noticed this a few weeks ago, approximately two and a half months post treatment.

It happens when I lower my head to my chest, and feels like nerves are "stretching" down my spine, all the way to my butt and sometimes all the way down to my heels. It's really weird.

This is a good example of what a blessing this forum is, especially with the "search" feature...I can do a search and see that I'm not alone and that others have experienced the same thing.

Thanks to all of those before me, blazing the trail and sharing their stories!

Oscar

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I developed Lhermitte's Syndrome shortly after treatment started and I really noticed it walking down stairs and looking down. I was told it was temporary but 4 1/2 years later, it is still there. I have learned to avoid looking down when walking down stairs because it sometimes feels like I am disoriented from the sensation. I read someplace it could be a side effect of platinum based chemo agents but I also learned it is a side effect of radiation. My hematology oncologist says it is from the radiation and my radiation oncologist says it is from the cisplatin. The tie breaker went to the neurologist who has studied post radiation syndromes and he says radiation. I almost forget about it sometimes but I just have to look down when I go down stairs to see if it is still there. I hold on to the hand rail and chuckle because it always is.

I just learned when it can be unnerving like walking down stairs and just live with it.


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: Feb 2004
Posts: 598
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I had it very strongly for the first 4 or 5 months post treatment. It has subsided now to the point where most days I do not notice it. Partially, it is masked by the nerves reconnecting from my neck dissections and the "interesting" sensations caused by that and the neck fibrosis. ;-)

I love to play golf, so every now and then when I look down at the ball or bend to put the tee in the ground, the zapping will start, which is a bit disconcerting. Like anything else, it becomes part of the "new normal" and we learn to adjust.


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!!
JeffL #73229 04-17-2008 03:37 AM
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I can't believe that!!! I have never read anything posted here before about that Lh Syndrome thing and I plan to read up on it but I had it big time and now only occasionally. I just never made any connection to my Tx and none of my doctors ever mentioned it so I thought it was the beginning of Alzheimer's or something. LOL

If others have experienced this and you're further along than me, does it completely resolve itself or, like evrything else, does it just depend on evrything?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Wait a minute, I guess I don't have that Lh thing. I just looked it up on the internet and I don't have any pain when I look down or numbness in my hands. I guess I just read what I wanted to see. My problem was that I would be walking down a flight of stairs without looking, you know from memory and all of a sudden it's as if my memory went out and I would have to look down to see the next step or I would feel like I would fall. Really bad right after Tx ended but it only occasionally happens now. Maybe it is Alzheimer's.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I thought it was from when I had my peg tube and would sleep on my side, causing a misalignment of my spin. I have the same symptoms as Oscar. On my back just below the base of my neck I have a numbing feeling and also at my lower back. I can really feel it when I look down. It never occurred to me that it could be related to the radiation.


Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
TomK #73256 04-17-2008 11:33 AM
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Mine is more like an electric shock that travels from the neck down the spine. It feels like you are literally stretching your spinal cord with a strange sensation and sometimes tingling in the hands and feet at the same time.

Too bad I can't find "Sabrina's butt dance". She posted on here years ago and she met someone from the board for lunch and as they were sharing treatment and "issues" stories, she was sort of showing how to bring on the sensation and to read her account I could imagine this fiesty Hispanic/Latino girl doing the chicken dance through a restaurant and two women bursting out in laughter as they compared notes and sensations.

I guess you had to be there or at least read it first hand.

Ed


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: May 2002
Posts: 2,152
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I was there. Too bad we lost that post. That was one of the funniest threads on the board. She had the whole world doing this 'butt dance' with her. Wonder how she is doing. Do you ever hear from her Sheldon?

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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I am 10 months out of TX, and while the L'hermitte's has lessened somewhat, I have found that a rise in body tempurature, such as with running or taking a hot shower, can bring on symptoms.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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