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Neuropothy help?

BrianH's picture
BrianH
Posts: 10
Joined: Jan 2013

I'm new to the sight so there is probably a lot of info out there about neuropathy.  I have stage 4 appendix cancer that spread throughout my abdominal cavity.  Did the 12 hour debulking surgery, HIPEC and 12 rounds of chemo.  I was told I got the same chemo that is given for colon cancer.  I'm done with all that now and would say that I'm doing pretty well.  I have ongoing stomach issues but the only real lasting side affect that I'm dealing with is the neoropothy in my hands and feet.  I used to be pretty active and ran triathlons.  I know that I will probably never get back to that but it would be nice if I could get some relief in my feet.  My Dr. just kind of says that it is part of the process and that it may get better with time.  Other sites people say they take this and that.  Just wondering if anyone has seen improvement after doing or taking something?

 

thanks

lilacbrroller's picture
lilacbrroller
Posts: 285
Joined: Jun 2012

I'm at the same place as you are, and if it gets worse, I'm going to get accupuncture. My GP does it and he says accupuncture and some drug i forgot the name of (!) in combination can help. He says he'll put the needles in the webs between my fingers.  He says it doesn't hurt... much. Yell   My friend is getting accupuncture as well and she says it's helping her a lot - she has breast cancer and is also on a platinum based drug (like oxaliplatin.) 

good luck

 

Karin

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

I had debulking and IP chemo (not HIPEC, but an equivalent done by Memorial Sloan Kettering.)  I also had Folfox and subsequent neuropathy.

Alpha Lipoic Acid (600-800 mg twice a day) has helped me tremendously.  I've also been advised to take Glutamine, but I never got in the habit; also Magnesium.  I'm not 100% better, but definitely much improved.  I don't expect total resolution, as I'm now almost 5 years out from chemo (almost 6 years out from dx.)

Speak to an Integrative Medicine specialist if you can.  Also, just search this board under "neuropathy" - you'll find lots of recommendations.

Wishing you a long, healthy future,

Alice

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I have a compound prescripthat helps helps give some temporary relief. I'm sure your onc will be familiar with the compound. The problem is not all pharmacies know how to do the compound. Another problem is not all insurance companies cover compounds. Some oncs recommend Lyrica for neuropathy . I tried it but turned out I was allergic to it. Sometimes I soak my feet to get some relief. Pray you find something.  Jeff

PatchAdams
Posts: 272
Joined: Nov 2011

Brian, when did your chemo end?  I found that my neuropathy increased at about 2 months after the end of chemo.  I had neuropathy up to my knees at that time.  Within about 6 months that had gone away but it's been over 3 years since the end of chemo and my feet are still bad.  My fingers are now only the tips.  This has become my new normal.  I've found that keeping on socks and shoes that tie seem to help.  Some find being barefooted better. 

annalexandria's picture
annalexandria
Posts: 2255
Joined: Oct 2011

is given to all chemo patients at my oncology clinic.  I think it was 30 mg, 3x per day.  I never was able to choke it down because it was kind of sludgy, regardless of what I mixed it in, but I've heard others say that it really works.  Kind of wish I would have used it, as I have pretty significant neuropathy still, a year out from chemo.  Good luck!  Ann Alexandria

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I am a stage 3b appendix cancer with 4 out of 18 nodes... My signet ring cancer was removed frommy colon with a resection and also removal of the appendix... My cancer grew just outside of the appendix.  I also had 12 trx do folfox6.  I also have the neuropathy...  Hands, feet, and tip of my tongue.  I am taking gabapentin ... 600 mg 3x a day.   I also just started taking ALA... I don't see an improvement yet...but I am hopeful.

I am waiting for the insurance co to approve an MRI on my liver, hopefully this week.  We have new insurance and I am trying to find a specialist in network.  Brian where did you have your HIPEC surgery?  Any recommendations on how to proceed in getting seen by a specialist?

Alex

 

BrianH's picture
BrianH
Posts: 10
Joined: Jan 2013

I have blue cross and I've had a few bumps along the way with them.  In the begining they took the max time to approve things. Very frustrating when you are first dealing with this stuff.  They got a little better after a while with approvals.  They classified several proceedures that I received during surgery as experimental or not necessary and I am facing tens of thousands of dollars that they said they were not going to pay for.  My surgeon's office is fighting them. 

Like most people in my/your situation, I was originally told that there was not a surgical option for me.  My oncologist asked around and did find a Dr reasonably close that might be able to help me.  I'm in Oregon and no surgeon locally wanted to touch my case.  I ended up going up to Washingtom State to a wonderful and gifted Dr that has been doing the debulking surgery and HIPEC for over 10 years.  His name is Dr. Holbrook at Cancer Care Northwest.  I had my appendix, spleen, gal bladder removed, along with 2 sections of my colon, 1/3 of my stomach and a section of my liver.  It was a 12 hour surgery followed by HIPEC.  Everyone I met in Washington were great and I was in the hospital for three weeks.  I might have been released to early as my stomach just wouldn't wake up and I ended up going back into the hosipital for another 3 weeks before I was able to go home home for good.  Anyway, there are specialists throughout the country but you may have to travel to see one.  In my research there were 2-3 Dr's on the west coast but I was also looking at MD Anderson in Texas.  I have relatives and friends in Texas that were trying to get me to go there.  They are very good in most areas of cancer.  I believe this site has a list of specialists as well.  http://www.appendix-cancer.com/.  Let me know if I can help in any way.

 

thanks

 

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