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sanmc #170658 09-07-2013 06:41 PM
Joined: Jul 2013
Posts: 24
sanmc Offline OP
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Joined: Jul 2013
Posts: 24
I check my BP quite often, especially when I have these "spells". I've never checked it in my ankles though. I will definitely try that next time. The doctors say that they had to take part of the jugular vein in the left side of my neck when they did surgery, clipped several nerves because the tumors had wrapped themselves around them all. They thought the use of my tongue would be effected but it wasn't. My primary doctor told us that there are many receptors in that area and could be a major factor in my dizzy spells. I had high blood pressure, diabetes and cholesterol issues prior to the surgery but since loosing so much weight I have been able to stop taking meds for all of those issues. I drink water constantly so I don't think it is a dehydration issue. Go with a water bottle 24/7. Have it by my bedside at night and always take a drink if I wake up during the night.

Thanks all for the very helpful information and some I will be asking my doctor about when I go next. I feel my frustration level increasing each time I have one of the bad spells, just want to sit down and cry but know it won't help. Guess I will just have to get use to it?? What do you all think?


Sandra
5/15/12 Diagnosed with SSC
6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51
8/20/12 PET scan showed cancer had reoccurred
9/4/12 Began Chemo and Radiation
1X cisplatin 2X carboplatin 35 radiation
5/28/13 Latest scans---Cancer free
12/2013 Still Cancer Free MO wants no more CT scans
(not sure how I feel about that)

Blessed and Very Much So
sanmc #170661 09-07-2013 07:18 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
I had a few problems during the first year but nothing until year 8. It happens often but only in the summer. Last week was the first time in 2 years.


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
sanmc #171410 09-21-2013 10:45 PM
Joined: Sep 2007
Posts: 60
Likes: 2
Supporting Member (50+ posts)
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Joined: Sep 2007
Posts: 60
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I also have the same problem. They even sent me next to a faint and fall clinic at the Unversity of Utah hospital. They did the blood persure check from seating to standing. It would fall after standing for a min. I usually can make it about 12 to 20 steps and it hit. Sometime I have to seat down at once or if a bad one I have to lay right down on the floor. Then I can get up and start moving. I hate when it hit when I get out of the car. A few times I have to lay my upper body on the trunk of the car bad hope the legs will not give out.
In six and half years I have 3 rounds of cancer and each time it's a different cancer. Round one was chemo and radiation, round two was 2 inched of the right back jaw removed and rebuilt anf the last round was the front part of my tongue removed and a skin flap done. Plus now all limp nodes have been removed from my neck.


Round 1 5/2007 - 35 Rad treatments and 6 chemo of cisplatin
TPN feeding for 5 months during treatment and after.
Tumor was on the right side of the tongue.

Round 2. Tumor on the lower back right jaw area. Surgery on 3/12/2010 to remove the tumor, rebuild the jaw and some work on the back tongue.
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