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#104558 10-02-2009 08:08 AM
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Husband finished radiation only, no chemo, for a tonsil cancer begining of 2007. All follow-ups are great.
Now being tested for nueropathy
Anyone else experiencing symptoms?

Margaret


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
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Yes, my husband has although he was significantly worse the first 6 months after treatment and is doing much better. He went to occupational therapy which helped him (might depend on symptoms).


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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Anyone else?


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
Joined: Nov 2002
Posts: 3,552
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I had pretty much the same cancer and treatment and am accumulating some collateral damage from the radiation, some several years out. Most neuropathy issues, however, are chemotherapy related. I have not had any neuropathy issues in almost 7 years post dx. I never had a neuropathy test - does he have symptoms? Did he have chemo?


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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My husband has had neuropathy of hands and feet since completing tx. It has improved very little. He is able to do fine motor activities and walks OK but it is uncomfortable and the cold bothers him. MDs blame the chemo and we were warned about this possible side effect.
Lottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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Neuropathy can be a symptom of hypothyroidism. Has he had his thyroid levels checked?


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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Update 10/20

Life is interesting.
Learning more everyday.

All blood work is fine including thyroid levels.
He has been on thyroid medication for about a yr now.

Went to see the neurologist and had electromyography done for nerve damage to the brachial plexus. The Dr said he has seen this in patients who had radiation to the head and neck. We will get the official results on Nov 9th.

Had his regular 4 month checkup yesterday with his tonsil Dr.
Dr is very happy with the way his throat looks. Very pleased with how he is doing.
but
Did mention muscle atrophy as a possible diagnosis that the nuerologist may make.
Needless to say we were in total shock.
Muscle atrophy........... oh my.
He said it only about 1% of patients he sees has that radiation complaint after treatment.
I couldn't even think of any questions to ask, just sat there.
Anyway his tonsil Dr said to keep him updated on what the nuerologist says, Nov 9th, and to get a refferal to a very good sports injury therapist.
Guess till we find out exactly what is going on will just hang in there with a positive attitude.
He had no chemo, just the radiation.


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
Joined: Jul 2003
Posts: 382
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I have had neuropathy down my left arm and first three fingers continually for over 7 years since end of treatment. They have tried PT and message but not much change. I do have hypothyroidism but was diagnosed about a year after treatment, so the medication for that issue has not effected the neuropathy. Have had this year a lumpectomy, lymph nodes removed under same arm, chemo and more radiation so the neopathy has now advanced to include shoulder and upper arm. Using Gabapentin which gives some relief and still planning on getting back to the kayak come spring! Amazing what you can live with. - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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Kris,
It is the LIVING with all the side effects that's important.

The hardest part is not knowing how to battle effectively yet.
Once we know what the fight is........ we make a darn good team.

Margaret


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
Joined: Jul 2003
Posts: 382
Likes: 3
Platinum Member (300+ posts)
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Joined: Jul 2003
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Margaret,
That is why I so love this web site! You can learn so much about the road to recovery and the questions you should be asking to your docs as you go down that path. Knowledge removes so much of the fear! Survivors need to focus on just surviving one day at a time. Caregivers can add the hope to that focus by doing the research and knowing the questions to ask along the way. Knowing long time survivors shows us all that we can live with the side effects! Beating the odds and those crazy statistics they love to through at us :-) - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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