Scanning today and neuropathy annoyance

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Scanning today and neuropathy annoyance

Postby thelongglass » Fri Nov 04, 2011 10:07 am

I am getting scans this afternoon and my thoughts are with all you others who have scans this week or coming up soon. So Kenny, Beth, soworried, Michelle, and all the others I don't know about, I am with ya! This is my first scan in about 10 months since I started treatments. Preparing for my takedown surgery and port removal next Friday, 11/11/11 at 11:00am. I asked my surgeon, "Why not schedule for 11:11 while we are at it?" 8)

I stopped the oxaliplatin after treatment number 9, when my toes were mildly tingly/numb. Continued on through treatment 12 with the 5FU pump. So glad I did and that my excellent doctor was concerned enough to advise me to stop the oxi so that my quality of life wouldn't suffer too greatly. But the neuropathy has gotten worse and worse since I stopped the oxi 9 weeks ago. Bummer that I am in the percentage who have it get worse before it gets better. I hold out hope that I am not in the eleven percent who have it permanently. Perhaps the cold weather will prevent it from getting any better before spring, do you think?

My radial nerve that goes to my fingers and palms and some nerve in my neck that goes down to the arches of my feet twang (very technical, I know, but it is like a bolt of electricity sent to the extremities) whenever I am in a specific position. Did anyone else have this happen? When will it go away? Will playing sports do further nerve damage? My pinkies are the only fingers not affected on my hands. I might have to start typing with my them :)

Thanks for the support. See you on the other side of the scan.
12/22/10- Diagnosed at 30 yo
Rectal Stage IIIB, T3N1M0
1/11/11- 25 doses radiation w/ 24/7 5FU pump
4/8/11- LAR-Complete Response to Therapy!
5/13/11- 12 treatments of FOLFOX started
11/11- ilestomy reversed, port-a-cath removed
NED since
Mother of 3 beautiful little girls

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Re: Scanning today and neuropathy annoyance

Postby SkiFletch » Fri Nov 04, 2011 10:40 am

Neuropathy's a B, sorry to hear you're still struggling with it. In regards to your question about sports, I'm no doctor, but athletic activities did not produce nerve damage. The trick with it is that if you have neuropathy that makes your feet numb or difficult to sense, you put yourself at greater risk for other injuries because you don't have full control/sensation of them. It's a lot easier to roll an ankle or break a bone in your foot when you can't feel them ;). Playing sports always comes with risk of injury and how much greater your own neuropathy poses is something only you can answer. None of us can feel your feet/hands to know just how much the neuropathy affects them. For me personally, I was able to climb 2 high peaks in the adirondacks with numb feet. Took longer cause I had to be more cogniscant of where I was stepping, but I did it...
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

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Re: Scanning today and neuropathy annoyance

Postby BrownBagger » Fri Nov 04, 2011 10:46 am

It takes awhile for neuropathy to fade, so don't lose hope on that. The soles of my feet started getting numb a few months after my last oxi infusion. Lasted another couple of months. It was intermittent. But it eventually went away. I cut my foot while on oxi and I think the nerves must have healed funny, because I still get a weird pain every once in awhile in that spot.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
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Re: Scanning today and neuropathy annoyance

Postby Canadianmom » Fri Nov 04, 2011 10:53 am

I also have chemo induced peripheral neuropathy. I also had that electric sensation when I nodded my head. It is called Lhermitte's Sign and often called Barber shop phenomina. Neurologists ask if you have this side effect to determine the extent of nerve damage. I remember nodding my head frequently because it was the oddest sensation. It reminds me of when I cut off my long hair and then couldn't stop shaking my head side to side because it felt so weird or when you lose a tooth and your tongue keeps feeling the space where your tooth once was.
I find it very perplexing as the nerves in your Cspine do not innervate your legs/feet.
At any rate, the sensation eventually went away. I'm not sure if my nerves regenerated(myelin sheath) or if my meds just masque the symptoms.
30/09/10 Dx mCRC/ 39 yrs old
08/11/10 liver met; Stage IV
23/11/10 PET 2 lit LNs
25/11/10 RFA to liver met
13/12/10 Folfox 6 plus Avastin.
15/03/11 After 7 rounds. NED. No further tx. 2014 still NED
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Re: Scanning today and neuropathy annoyance

Postby beth568 » Fri Nov 04, 2011 11:48 am

Hope your scan goes well! I'm just home from mine and happy to have it (and the barium drinks) out of the way.

The neuropathy in my feet is getting worse, too, and I'm about a month out from my last chemo infusion. I've heard lots of people talk about that pattern, so I'm just holding out hope that it will eventually fade. I've found that exercise actually helps, at least in the short term - if I walk briskly for a while, then run, my feet usually feel OK during the run itself, and then don't tingle for a while afterwards. Perhaps something about increased blood flow.

At any rate...sending clear scan vibes your way. And how great that the port's coming out soon!
dx @age 42, Jan '11 RC, T2or3NxM0 (stage IIIA/IIIB)
6 wks chemorad Feb - Mar '11
LAR 5/23/11, staged T2N1bM0 (2 of 15 nodes positive)
8 rounds FOLFOX, June-Oct. 2011
clear scans Nov '11, May '12, Nov '12, May '13

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Re: Scanning today and neuropathy annoyance

Postby annalexandria » Fri Nov 04, 2011 12:05 pm

I had pretty awful neuropathy after chemo, but it has gotten a lot better. It took many months to improve, and on my doc's advice, I took glutamine powder every day. Not sure if it helped, or if it was just the passage of time. Apparently the breast cancer patients at my hospital get the glutamine as a matter of course with their chemo, as studies have shown that it can prevent the neuropathy or at least reduce the symptoms. Hope yours gets better soon, it's a very unpleasant side effect to deal with long term. Take care-Ann
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Dx age 43, Sept. '09, Stage IV Carcinosarcoma of the colon
5 surgeries, 2009-2011:
colon/sm. bowel res., node removal, peritoneum, hysterectomy
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Re: Scanning today and neuropathy annoyance

Postby Bussman » Sat Nov 05, 2011 10:17 am

I had my last FOLFOX treatment (#12) in mid-August. In the following weeks, the numbness in my fingers became significantly worse. Luckily, it has improved considerably over the last few weeks and I'm hoping that continues. My onc suggested vit B12 (1000 micrograms)...I have no idea if it has helped or not. (I notice that quite a few people here have been advised to use B6, not B12?). My feet were only very slightly affected, and that seems to have gone away. So I think you have a very good chance your neuropathy will improve given some time. Best of luck with it!
1/21/11 dx CC @ 53
2/09/11 rt colon resect
0/18 LN; 4 tumor dep.
stage IIIB T4a N1c M0
3/11- 8/11 - 12 FOLFOX tx
6/11, 12/11 PET/CT scans- clean
1/12 follow-up scope - clean
6/12, 12/12,6/13 PET/CT scans- clean

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Re: Scanning today and neuropathy annoyance

Postby SugarBubbie » Sat Nov 05, 2011 10:29 am

I recently read an article on about a doctor using fat-soluble B1 to help with neuropathy. My onc at MD Anderson wont let me try it while still getting chemo for my breast cancer. THe doc said he had good results so I'm hoping she'll let me try it when I am done. Also my radiation doc told me yesterday when I met with her that she has seen a lot of patients get help from accupuncture. MD Anderson has them available so I am going to ask my onc if I can try that.

My foot and hand problems are from the Taxol and FAC chemos. 5FU is the one that has really hit me hard.

Hope you get help.
DX Stage II anal cancer 2007 age 57
Radiation 6 weeks, Xeloda/oxilaplatin
DX Breast cancer Jun 2011 Stage3 one lymph nodes
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Re: Scanning today and neuropathy annoyance

Postby thelongglass » Mon Nov 07, 2011 6:36 pm

Just got scan results back and everything looks good, but the radiologist seemed to notice a thingy, spot, whatever you call it, but he didn't reference it back to my original scan to show any potential size change. He said that the two spots on my lungs looked identical to the previous scan, so I feel vindicated on the lung spots. I can't quite celebrate until I hear why he mentioned a hepatic mass in his notes, but didn't give any comparison to the previous scan. Am I overly anxious? I just want to confidently put this behind me until the next scan. My nurse is going to go over it with the oncologist and radiologist and get back to me. How vigilant do I need to be about something like this? They weren't ever cancer spots, just spots, but this scan is supposed to be confirmation that they have always been just spots, so I am anxious. I also changed doctors/hospitals in the middle of treatment, so I worry extra about something slipping through the cracks.

This B12 regimen sounds good to try for the neuropathy. Maybe I can find a multi-vit that has the whole range of B vitamins. It is really good to hear how your neuropathy has improved and gone away. Thanks for the responses. What have you all done as far as general vitamin supplements go? Anything to avoid?
12/22/10- Diagnosed at 30 yo
Rectal Stage IIIB, T3N1M0
1/11/11- 25 doses radiation w/ 24/7 5FU pump
4/8/11- LAR-Complete Response to Therapy!
5/13/11- 12 treatments of FOLFOX started
11/11- ilestomy reversed, port-a-cath removed
NED since
Mother of 3 beautiful little girls

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