Pheriphial Neuropathy

star · Regular Joined: 02 Sep 2006 Posts: 22 Location: Ohio

Hi
By now you probably think I am sounding like a broken record as I have posted on this subject before. It is something that I just cannot get much information on, and I am getting pretty frustrated with it. So I am posting again in hoping maybe someone will have some help.

Is there anyone out there that has had or has neuropathy from being a side effect from treatments of Oxaliplatin or 5-FU?

Mine seems to be pretty chronic as it has affected my hands and legs and feet. Meds I have taken have been Neuratin which did nothing and at the moment taking Lyrica 100mg 3xday. It takes the edge off of some of the neuropathy but not as much as I have hoped.

If there is anyone with this also? if so I would like to hear from you on how you are living with it as to coping and also medication you are taking. Any information will be appreciated.

Best Wishes~*star*

brainman · Posted: Sun Sep 23, 2007 8:32 pm Post subject: Re: Pheriphial Neuropathy

Hi Star,

I am very sorry that you have peripheral neuropathy due to your chemotherapy. I have never taken Oxaliplatin or 5-FU but I too have chemotherapy related peripheral neuropathy. Mine affects my toes. It was caused by Vincristin back in 1993... so I assume it will remain this way for the rest of my life.

Best wishes,
_________________
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Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
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star · Regular Joined: 02 Sep 2006 Posts: 22 Location: Ohio

Hi Brainman,

Thank You so much for the reply. I'm so sorry you have neuropathy in your toes, it really isn't fun stuff to have to live with.
I went to see my oncologist today for routine checkup, he mentioned topamax to me so going to try that, although he says most medications out there work about the same, but thought what they hey, what do I have to loose? worth a try.

keep Going..Keep Strong..All the Best to you

mninnc · New User Joined: 19 Dec 2007 Posts: 2

I have neuropathy (feet and hands) from Oxaliplatin. I stopped treatment in October 2006. I still have issues.

I find the cold really effects it. I make sure I stay warm. I did try Lyica, but it didn't really help.

I have decided not to take anything for it cause I am still on chemo and don't want to deal with side effects that aren't from chemo.

I bet it will improve once you are off Oxaliplatin. I have noticed that when I get 5-FU it flares up.

Not sure if this helped.

PammySue51 · Regular Joined: 18 Dec 2007 Posts: 12 Location: Ohio

I finished oxaliplatin in June 2007 and still have some lingering neuropathy. I think it is abating somewhat...either that or I'm just getting used to it as one of the new "normals" in my life. I take vitamin B6 and B12, but I don't know that they have made a difference.

I currently take Xeloda, but I don't think that would be causing the neuropathy to linger. Neuropathy from oxaliplatin can last for a very long time for some people...sometimes forever. Hopefully, that won't be the case for you.

If oxaliplatin is responsible for fighting the beast called cancer...I'll take the neuropathy.

Hope this helps.

Be blessed.
Pam
_________________
Pam
stage IV colorectal cancer with mets to liver and lung - dx 9/06
6 months FOLFOX6 + Avastin completed 6/07
Xeloda since 6/07 with Avastin recently added again.
http://pamsmiraculouscancerblog.blogspot.com

cherylta · New User Joined: 06 Dec 2007 Posts: 4

I'm on Oxy along with Xeloda. I have a terrible problem with neuropathy. For me, in addition to my hands and feet the cold also effects my face as well. I also struggle to stay hydrated as the oxy causes me to have a type of metallic shock to cold drinks (and at this time of year, even room temp water tends to be too cold) plus my throat feels as if its closing up, and I have no appetite for food or liquid. The stuff is toxic!!!!!

PammySue51 · Regular Joined: 18 Dec 2007 Posts: 12 Location: Ohio

Cherylta, that is a normal reaction to oxaliplatin for the first 4-5 days (for me anyway) after treatment. Did they give you a kit with scarf, gloves, and fleece throw? I kept the gloves right by my refrigerator and I had to have my drinks at a little warmer than room temperature, as well. Also, use the scarf over your mouth when you leave and it's cold outside. It will keep that "throat closing" feeling away.

Pam
_________________
Pam
stage IV colorectal cancer with mets to liver and lung - dx 9/06
6 months FOLFOX6 + Avastin completed 6/07
Xeloda since 6/07 with Avastin recently added again.
http://pamsmiraculouscancerblog.blogspot.com

cherylta · New User Joined: 06 Dec 2007 Posts: 4

Thanks for the advice Pam. Lately I have been experiencing a feeling of pressure on my chest in addition to shortness of breath. Has anyone else experienced this as a result of the chemo?

Montenegrita · Regular Joined: 17 Nov 2007 Posts: 36

This is from another forum regarding the same issue, posted in 2005. Did anyone tried anything similar?

"Too bad no one told you about the treatment (suggested by Oxaliplatin or Eloxatin's manufacturer, Sanofi-Aventis) to reduce side effects such as neuropathy and cold sensitivity. The treatment consists of 1000 mg. Calcium Gluconate and 1000 mg. Magnesium Sulfate both before and after your Oxaliplatin infusion. At first, it didnt' seem to make much of a differance for me. After the second treatment, I noticed significant improvement. I'm told by my various nurses that improvement is cumulative.

I believe in being informed. I learned of this particular treatment from a guest physician at an "I Can Cope" class put on by the American Cancer Society. By the way, this is the class from which I learned the most. I was the one who took the information to my physician and requested this treatment to reduce side effects. Sanofi-Aventis said that they sent a flyer recently to all prescribing oncologists about this treatment, but I had to ask for it.

If Oxaliplatin is really not for you, look into FOLFIRI as a treatment option, that is if you are using 5FU currently."

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