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Neuropathy

Pamela B's picture
Pamela B
Posts: 108
Joined: Jan 2013

 How bad is your neuropathy and how do you handle it? I quit IP chemo after four and a half rounds because of neuropathy in my hands and feet. My oncologist was afraid it would become permanent if I continued. He was convinced I had enough, scans are 100 percent clear and my ca125 is 6. But the oncologist/gynecologist who removed my IP port convinced my regular oncologist (they work closely together) to give me one more round of IV chemo once a week for the next three weeks just to be sure. I know they are right, the data I have seen suggests much higher percentage for longer life and longer remission. But I am so scared of more neuropathy. I can handle the amount I have now but any more and I think my quality of live would be negatively impacted. How much neuropathy were you able to handle, did it ever improve and for those of you who pushed through the last rounds of IP and had neuropathy was it worth it?

Alexandra's picture
Alexandra
Posts: 1220
Joined: Jul 2012

I did not have IP chemo; Peripheral neuropathy in my feet started after round 3 of IV chemo. In the beginning it was numbness and tingling in my toes, later it spread to the soles of the feet and to my hands and became painful. After I had surgery and was paralized from the waist down because of overdose? hypersensitivity? to epidural, I was given 3x300mg daily Gabapentin which completely got rid of neuropathy.

For the next 3 rounds of IV chemo I requested to reduce Taxol by 20%; wore ice socks (bags of ice strapped to my feet) during chemo. Neuropathy came back anyway. I still have it almost 7 months after finishing chemo and it is probably permanent. My hands frequently "fall asleep", feet are painful, especially when I wear high heels, I can't feel the pedals when I'm driving. When it gets worse, I take Gabapentin. Yes, neuropathy affects my quality of life; but no more than "chemobrain", menopause and other lovely side effects of treatment.

Statistically there is no difference in overall survival between 4 and 6 rounds of IP chemo. Psychologically IF you recur you will blame yourself for not finishing chemo. If I were you I would take the extra few IV chemos the doctor offered.

 

123Miley's picture
123Miley
Posts: 94
Joined: Jan 2013

I would say mine was pretty mild compared to some of the ladies I have met along the way.  It did impact my balance - especial on uneven ground or when running for instance.  I got fatigued quicker because of the neuropathy.   And they hurt a lot.  I was on IV carbo and taxol for 11 months.  The taxol is what caused my neuropathy though.  I regained almost all the feeling back in my feet and it doesn't impact my daily activity.  My hands were never bothered.  

Its hard to juggle these decisions of treatment verses quality of life.   And there really is no right or wrong answer. Depending on how bad the neuropathy is - as far as you've come - it might very well be worth 3 more weeks.  

Congrats on that 6!  My lowest was 12.  But 6 years later I am still here! 

jt25741
Posts: 23
Joined: Apr 2012

l-carnitine and -glutamine?       Maybe look into these more if not.    My wife has had 14 courses of antiiotics (consequitively, believe it or not), with mild to no neuropoathy.   This may be partially why  -- yet she is taking other things too.   I am not sure if they are more protective than restorative....so you may or may not get any benefit after damage is done......but I am not highly knowledable about this.   Maybe others have ideas to pursue too.

 

Best to you

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

Pam I completed all 6 rounds of IP chemo.  My doc didn't give me the option of stopping but she did offer to reduce the amount.  I told her no...  My neuropathy started after the 4th round and 1 am one year(in 3days)  out of chemo and I still have some neuropathy but my doc has me on Hansen in for it. Works great.  I don't have any side effects from the gabapentin and as a bonus it keeps the hot flashes away.  If I have 3 a week that is alot

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Pamela,

I started seeing a naturopath before I started chemo.  Under her guidance, I received a B6/B12 injection the day before each chemo and I iced my fingers and toes and chewed on ice chips during the Taxol infusions.  I had only very slight neuropathy following one of my chemo treatments that went away after a few days.  Other than that, no neuropathy at all and no mouth sores.  I don't know if you were to start this now if it would prevent further damage, but it's worth considering.

scatsm's picture
scatsm
Posts: 244
Joined: Apr 2013

I had 8 rounds of carbo/taxol and quite a bit of neuropathy especially in my feet. After 15 mos, I am much better with some residual pain and numbness especially after I've had an active day on my feet. I suspect this won't get too much better but I can live with it. I didn't have IP therapy so I  can't comment except to say that I hope it goes well for you and that you get the results you hope for.

All the best,

Susan

mopar
Posts: 1950
Joined: May 2003

My neuropathy was pretty bad.  Once I finally figured out what all that pain was, I started L-Glutamine and B-6.  It helped tremendously.  Sometimes, I have a little twinge in my feet at night, but for the most part it is gone, gone, gone!  Sending prayers for strength for this last course of treatment.

(((HUGS)))
Monika

 

Pamela B's picture
Pamela B
Posts: 108
Joined: Jan 2013

Great advice as usual.  I feel better knowing you all live with some form of it, have things to take and are doing well.  I am convinced now that I need the last round of chemo and I think the IV form will be easier to handle than the IP.  I am ready to face neuropathy if it extends my life and time in remission.  Hopefully I will have a chance to talk to my oncologist tomorrow before starting chemo again but if I can't I will still go through with it and talk to him next week.  Thanks again for all your help. I love this forum and all of you!

123Miley's picture
123Miley
Posts: 94
Joined: Jan 2013

Good luck with it and do keep everyone posted!

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