#43162 04-16-2004 01:22 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Here's a good one for anyone to jump in on. When I bend my head forward I get the most unusual almost like an electric shock running down my back to my tailbone. When I am walking it is a little more exagerated. It started about 3-4 weeks into radiation and if I sit for a period, it is stronger. I have tried to explain it to people but it is the strangest feeling I have ever had.
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
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#43163 04-16-2004 02:09 PM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Ed,
I raised the same question about the strange feeling shortly after my radiation treatments ended. It used to happen when I was out walking and looked down. There is a name for it that your doctor knows and it results from radiation. In my case the sensation has completely gone away.
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#43164 04-16-2004 02:29 PM | Joined: Jan 2003 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2003 Posts: 109 | It is typical for patients who went through radiation treatment. I had it too and it went away gradually.
WZ | Stage 4, Tonsillar Cancer Aug, 2002
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#43165 04-16-2004 05:23 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Back when I was affected, this was discussed on the forum with the then crop of newly radiated, and I think the figure was about 1 in ten persons gets that, which of course makes us all special. I am 18 months out and had forgotten completely about it, and last night I looked down quickly, having been sitting for a long time, and felt a tingle. Tried to make it happen again and it would not. And yes, Ed, it was much worse for me when I was running or power walking and looked down -- Yowie! As I recall, it decreased gradually over about six months. Just remember, you are special (grin). | | |
#43166 04-17-2004 08:31 AM | | Anonymous Unregistered | | Anonymous Unregistered
| Yep - Ed. Me too. It feels weird and there is a name for it, that I can't remember either. (wish I could blame that memory thing on something)
It will fade in time. As a matter of fact it's one of those things you will all of a sudden wonder when it went away.
Take care,
Dinah | | |
#43167 04-17-2004 01:08 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Ed, one of those side effects that is supposed to be rare but everyone gets. I'm almost a year out and still get it once in a while. My case legs and bottom of feet.
Mention it to the oncologist though, so he has a record of it. I didn't at first, then when I mentioned I was having this side effect the second time I went in for rad/chemo and having ear problems, he stopped the chemo.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#43168 04-17-2004 04:25 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Thank you all for the sanity check! I have been timid in mentioning it to anyone except my wife and the doctor and they don't seem to understand when I describe it but y'all (Texas for everyone) describe it exactly like it feels.
Dinah, I ahve had the memory struggles since chemo and the nurse told me it was "chemo-brain" caused by the radiation breaking down the brain blood barrier and letting the chemo circulate through the brain. I have forgot the wierdest stuff and some of it comes back at very random times. You now have an official excuse!
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
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#43169 04-17-2004 06:22 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Ha! I used "chemo brain" way past when I could ethically do so. A dear friend in her 80's but mentally very sharp, calls it CRS Disease, C and R standing for Can't Remember, and you can fill in the rest (grin). | | |
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