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David2 Offline OP
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Hello everyone:

Well I've quietly been developing numbness and tingling in my hands and up my forearms over the last year or so, maybe 18 months. Haven't brought it up here because I didn't think it was related, and the initial diagnosis both by my regular doc and a rhuematologist (this after negative tests for nerve damage) was something called Raynaud's Phenomenon, a circulatory condition resulting in sensitivity to cold.

This week I was back at the neurologist for another round of nerve conduction studies, and he found damage. He's calling it "Polyneuropathy" and it seems to involve the sensory - touch - nerves and not the motor nerves. I had blood drawn and numerous tests will be done on it.

I'd be interested to hear from anyone in the group who might have expeienced similar symptoms. The numbness is quite pronounced and I have trouble with small motions - buttoning, using a TV remote, turning pages, etc. The tingling is especially bothersome and it rarely goes away. It feels as though my hands and forearms are continually halfway to coming back from falling asleep.

Of greater worry is that one of the tests being done is something for a little goodie called "Anti HU antibodies", which arise when the body is mistakenly attacking nerves instead of a malignant tumor. The neurologist opined that at first glance my problems may have arisen back when my body was fighting the SCC in 2009. But the more I read of these Anti-HU fellows, the more I'm concerned that, should I prove to have them in my blood, they may be indicative of a tumor in my lungs. And as we all know, sometimes this can happen a few years after SCC. Add to that that for the last... oh... 6 months or so I've had a dry cough that ebbs and flows.

Thanks for listening.

(OH and since I didn't have chemo, the neuropathy was not a function of that treatment, as I'm aware it can be)


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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I have neuropathy the past 4 years, basically from chemo, but underlying medical conditions could have been accelerated, like from diabetes, illness, being bed ridden, other medications. I did the nerve conduction tests with the cattle shock prod, and what did I learn, I have nerve damage lol. I could have told them that. I have been trying to find out how I was paralyzed from my waist down for 10 months, and still with some loss of movemrnt. Could have been weakness, but my torso, arms, had no paralysis, but hands have the neuropathy. I think losing 110lbs in several weeks from cachexia or cancer wasting syndrome, has something to do with it. I looked into Gallium Barre Syndrome, which could have been caused by a stomach virus or respiratory infection, both which I had, and immune system starts attacking the nerves, but I don't think I'll ever find out. I saw a FDA announcement, which I posted here, that certain antibiotics can cause permanent neuropathy. There are also 20 different types of neuropathy.

I hope you find answers. Good luck.

I just looked into the polyneuropsthy, and it is related to gallium barre syndrome or is a subset. It's rare, but the flu shot can cause it.

Last edited by PaulB; 08-31-2013 10:05 AM. Reason: Flu shot

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 2003
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Neuropathies, neuralgias, etc., are all related to late effects of treatment. Radiation and/or chemo is the most likely cause and since you did not receive chemo, radiation could be the culprit. Curious if your neck hurts and if you have had a spinal MRI.

Radiation damage can mimick about any neuromuscular disorder. Reynaud's-like symptoms and even thoracic outlet syndrome symptoms can be caused by scar tissue around the base of the neck which would cause many of the issues you are experiencing. In my case mostly my small finger and ring finger goes numb for hours at a time on both hands. Even muscle weakness in the blood veins can cause similar symptoms. The main problems are vaso-restriction for veins traveling through any scarred areas; likewise arteries. In addition nerve damage from the radiation prevents or restricts current flow.


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: Jul 2009
Posts: 1,409
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David2 Offline OP
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Paul and Uptown: thank you both for your kind and very intelligent posts. Up - yes, I had a cervical MRI and it was negative. My neck doesn't particularly hurt, just a little stiff and sore and (most likely) permanently numb on the side where I had the dissection.

Paul: I do get flu shots, and have also read about Guillain-Barre.

I have faith in my medicos and I'm figuring I can handle anything. Would really rather not have to handle lung cancer of course. So I guess anything less would be a blessing! I hope to know more this coming week when the blood work comes back.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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I hoped Uptown would add, he is very knowledgeable. Good luck.


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 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Good luck with your tests David. If you can find a provider and your insurance covers it you might want to consider ART (Active Release Technique). You can google and find the website and from there find a provider. They work on nerves mostly and muscles. Great relief from the numbness, tingling and pain.

Also consider neck massage working mostly on the scalenes. They are muscles around the brachial plexus nerve bundle and are known to cause referred pain head to toe.


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: Jul 2009
Posts: 1,409
Likes: 1
David2 Offline OP
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Uptown - great suggestions, thanks a million. I'll definitely look those things up. You're knowledgeable and a personal inspiration!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Sep 2012
Posts: 64
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I have minor neuropathy in the soles of my feet and in my hands from chemo. My Oncologist keeps telling me that it should go away but I think he's blowing smoke. My Radiation Oncologist told me that she's had cases where acupuncture worked to relieve it and I have done a web search and found that there is a B vitamin combination (similar to what David2 mentions on a different post), from several sources, that has worked for some people. I've ordered it and will post my results

Last edited by LeftyS7; 11-16-2013 07:32 PM.

Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
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Posts: 1,409
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David2 Offline OP
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Good luck, Lefty. I haven't been back to the acupuncturist since my last post but I'm going on Weds. However I did get my thyroid results back and I'm slightly high on the rapid TSH. The doc therefore upped my synthroid from 100mcg to... drumroll please!... 112 mcg. I can't imagine this will make much of a difference and look forward to discussing it with him. If he ever gets back in the office.

Thanks, all.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
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David, please let us know how you make out with the accupuncture apt. Not many have done this but from a couple that have Ive heard good results.



PS.... My thyroid meds just went from 50 to 75.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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