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#191088 11-03-2015 05:46 PM
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Uptown Offline OP
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After struggling since January with heart rate and blood pressure issues, I reached a point mid September of amazing stability. Then out of the clear blue, I had my first seizure ever last Friday. It seems to be caused by baroreceptor dysfunction. What a wild thing to happen.


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
Uptown #191092 11-04-2015 07:16 AM
Joined: Nov 2013
Posts: 104
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Joined: Nov 2013
Posts: 104
Ugh, sorry to hear this... Is this a normal post treatment issue?



Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
Uptown #191095 11-04-2015 10:25 AM
Joined: Dec 2003
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Uptown Offline OP
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Anyone with radiation to the carotids is a candidate.


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
Uptown #191102 11-05-2015 12:57 AM
Joined: Nov 2009
Posts: 644
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

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Are you okay now, Uptown? You have such a vital online voice which I always find reassuring. Here's to no more seizures!


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Uptown #191105 11-05-2015 06:08 AM
Joined: Oct 2008
Posts: 246
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Uptown,

I'm so upset to hear this - I am upset for you and all long term survivors.

My husband had a go-around with neurology for numerous symptoms a few years ago (sudden numbness in hand, pain & numbness one side of face and one side of head, etc.). Routine neuro testing was negative. It all stopped before further investigation was required. I think radiation is probably the culprit.

Have you found out any more? I know you have been struggling with severe rad SE. Did you already know about this dysfunction? Please let us know how you are doing.
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
Uptown #191109 11-05-2015 04:16 PM
Joined: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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Sorry to hear of your troubles, and hopefully your doctors find a way not to have it re-ocurr or are able to stabilize.


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






Uptown #191114 11-05-2015 10:16 PM
Joined: Jan 2013
Posts: 1,291
Likes: 1
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Ed,

So sorry to hear about the seizure. For those of us who don't know about your recent complications, what is going on? Is it a symptom associated with the state of your general health? As we have followed the ongoing concern about fluctuating blood pressure, is there some other treatment that can get this more under control?

Praying the best for you Ed,

Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Uptown #191135 11-08-2015 02:40 PM
Joined: Dec 2003
Posts: 2,606
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Uptown Offline OP
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It's a progressive issue with baroreceptor dysfunction. My heart rate and blood pressure finally stabilized around mid September. 2 weeks ago my house was hit by lightning and a week ago I had trouble standing without almost blacking out then out of nowhere the orthostatic hypertension went right into a siezure from blood flow in the carotids not feeding the brain. The lightheadedness started around 2009 and keeps worsening. All from late effects of radiation.


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

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