Neuropathy

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Laurie
Posts: 3
Joined: Mon May 15, 2006 7:50 pm
Location: Roswell,GA

Neuropathy

Postby Laurie » Thu Jul 06, 2006 9:57 am

I was diagnosed with rectal cancer in Oct., 2005. I have had surgery and 6 months of chemo - FOLFOX 6. I finished in May and have clear scans! During treatment I had trouble with neuropathy. I was very cold-sensitive and tingly. The sensations would subside during the two weeks before another treatment. I have very little trouble now with the cold, however, I tingle all of the time and am experiencing the stocking/glove effect. I have been taking vitamins B6 and 12 and folic acid. I have read that this can get worse for several months after treatment ends before it goes away (if it does). I would love to hear from anyone who has had this same difficulty. Has the neuropathy gone away? How long did it take?

rthornton
Posts: 177
Joined: Thu Mar 02, 2006 1:10 am
Location: Atlanta, GA
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neuropathy

Postby rthornton » Thu Jul 06, 2006 11:45 am

Hi Laurie.

I was diagnosed last May with stage four colon cancer and went through eight cycles of 5FU/Avastin/Oxaliplatin. The Oxaliplatin caused tingling, cold sensitivity, weird sensations when swallowing, etc. After six cycles I was in remission, so we did two more and then changed to a different, lighter regimen. So my last Oxaliplatin infusion was on October 12th last year and I still felt the tingling through January of this year. It was especially bad in my feet. Now it is very, very rare that I ever notice anything ... in fact, I don't remember the last time I felt the neuropathy. Generally the symtoms disappear after a few weeks (although I've heard of rare cases where it stays with people).

I live in Atlanta, so fortunately the weather is usually warm here. I've heard of people in colder climates really suffering from the cold sensitivity.

Best wishes,
Rodney

Fishy
Posts: 42
Joined: Mon Oct 24, 2005 3:04 pm
Location: Portland, Oregon

Postby Fishy » Fri Jul 07, 2006 12:19 am

i had magnesium/calcium infusions that helped a lot.
Jenny Fish

Holly
Posts: 537
Joined: Thu Sep 08, 2005 11:06 pm

Wow

Postby Holly » Fri Jul 07, 2006 9:09 am

I would agree that CA/MG in your premed sequence should significantly reduce the neuropathies. You might also consider: B6 and B12 which are vitamins specific for nerve function and add folic acid (1mg). Certainly, something to talk to your physician about! Hope this helps!

In my case, the neuropathies have gone away. I recieved 8 cycles of Oxi and it took about 5 half lives of the drug (5 hl X 15 days is about 75 days).

Holly

Rochelle
Posts: 43
Joined: Fri Sep 09, 2005 3:58 pm

Neuropathy

Postby Rochelle » Fri Jul 07, 2006 11:43 am

Hi Laurie
I was on Folfox 4 for one year and only had neuropathy the first day of each chemo treatment, and it would disappear after that. I definitely attribute the premeds of Calcium and Magnesium to helping with this problem.

Rochelle :P

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Sweet Peg
Posts: 158
Joined: Thu Sep 01, 2005 7:11 am
Location: Iowa
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Postby Sweet Peg » Fri Jul 07, 2006 12:09 pm

Hi Laurie,

I had 12 cycles of 5FU with Oxaliplatin and the tingling and numbness would go away in between treatments. The last treatment was in August of 2005 and it has never gone away since then. It has lessened some but I still have tingling and numbness in my finger tips and from the ball of my feet to my toes. When I go for walks it seems to get worse then eases up some. I started taking B6 after the treatments were over and I really DO notice a difference when I don't use it. I know of people who have never gotten rid of it and that is the path I seem to be on as well. My oncologist said it could be because I took the treatments at full strength for the whole 6 months too. I guess most people can't stand it at full strength or for the whole 5 months. I am just greatful I am in remission and have been cancer free for 18 months now!! I can live with this tingling and numbies the rest of my life if I am alive because of the Oxaliplatin!!!!!

Hang in there....maybe you will be one of the lucky ones that has it go away!!!!!!!!!

Hugs Peg

Holly
Posts: 537
Joined: Thu Sep 08, 2005 11:06 pm

Wow

Postby Holly » Tue Jul 18, 2006 8:09 am

Laurie,

I have said this many times before but warm snuggly mittens and socks are priceless! Right Sweet Peg?

Holly

Magnolia
Posts: 1514
Joined: Fri Jul 14, 2006 2:38 pm
Location: Virginia

Postby Magnolia » Tue Jul 18, 2006 3:36 pm

Hey all!

I was having some problems with neuropathy, and wasn't too worried about it. I'd rather stay alive than eat popcicles, if ya know what I mean. I had some tingling in my hands when I got cold, couldn't make salads or get anything out of the freeer, even with gloves on, and couldn't eat or drink anything cold. I was three months into treatment, and my doc was thinking about holding a dose, but my ANC dropped and he had to delay a treatment because of that. Now I'm on a reduced dose of 5-FU and oxaliplatin to keep my ANC up. That will, we hope, keep the neuropathy at bay as well. I'm feeling it a bit today, one day after my infusion, but it doesn't seem as bad as before. It always goes away into the second week. (my off week) My doc says almost everyone requires some reduction in dose at some point for one reason or another. They just like to get as much in as possible before the side effects get too bad.

Oxaliplatin is a wonder drug. It boosted survival rates HUGELY from where they were when I was an oncology nurse 20 years ago. And I think Avastin is going to do the same. Colon cancer may be another cancer success story in a short time. Long term survivorship is becoming the norm, except in Stage IV, and even then it's not as rare as it used to be. Look at all the Stage IV survivors on this board. Great strides are being made. And prevention is certianly more effective than it used to be. Early detection is as well. Colonoscopy rocks!

margotmagoo

Eating cold things after treatment

Postby margotmagoo » Sun Jul 23, 2006 10:04 am

Hi Sweet Peg,
I will be finishing my chemo next weekend and am anxious to have ice cream and Jamba Juice again! You mentioned still feeling the effects of neuropathy in your fingers and toes....what about your throat? Are you able to drink things with ice and eat cold things?
Margot


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