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neuropathy

NEDbound
Posts: 54
Joined: Sep 2015

I am about to get my 7th treatment with full dose FOLFOX.  I have numbness in my hands and feet.  There is no pain.  I get all the typical cold induced neuropathy for 4-5 days after infusion, and then those symptoms go away completely before my next treatment.

Of those of you who stopped oxaliplatin due to neuropathy, how bad did your neuropathy get before you decided to discontinue or reduce dose of oxaliplatin?  

 

Thanks,

Summer

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

But was sporadic off and on.  The key for my oncologist was when it was how it was continous for me.  I was not able to totally quanitfy how bad it was, maybe slower on buttoning shirt and things, but there was breaks.  When it became constant,  Oxiliplatin dropped.  (My first session did not have it.  Sessions 2-9 had it [we were trying to make 2-10]) and sessions 10-12 no Oxiliplatin.  The last with Oxilplatin was end of July.  Still have the neuorpathy, though I think in the last day or so it is a little less finally.

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Trubrit
Posts: 4856
Joined: Jan 2013

Here is a picture of my hands at the point that my Oncologist unhooked me from chemo. The only difference, that chemo was 5FU.

While I was doing the Oxaliplatin, my symptoms were mild, but during the six week continuous hook-up to 5FU, it seems to have kicked the neuropathy into gear. 

At the point when my hands looked like this, the numbness in them was complete. My feet were also numb which extended up my legs almost to the knee. 

The numbness in my hands lasted about a year, getting less and less each month. My feet have improved, but are not normal. I am two years five months out of treatment. 

I would suggest that you not let your hands and feet get to the point of complete numbness. Don't let your hands go purple. If the numbness doesn't go away after a few days our of treatment, then I would be talking to your Onc about it. 

Just my opinion. I hope you have a good relationship with your Oncologist, as this really does help.   Sue - Trubrit

Steve444
Posts: 105
Joined: Sep 2014

When on Folfox, my symptoms were more numbness in feet and hands.  Now on Folfiri, I'm getting the blue palms that are swollen and hard to bend fingers as well as pain in the bottom of my feet where it hurts to walk.  Your hands look like mine.

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

I was thinking abuot your yesterday and wondering how you were doing .

This picture was taken the day my Oncologist decided that I had better stop the 5FU. I am sure you and your Oncologist are keeping an eye on all of your symptoms. 

I was sure my hands weren't ever going to recover after this, but they did. It took a while. I get intermittent numbness now, and a loss of sensation in my fingertips, but it doesn't cause problems for the most part. 

I hope you post a new thread and give us an update on how things are going.

Happy Christmas!

Sue - Trubrit   -   

 

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JanJan63
Posts: 2482
Joined: Sep 2014

I was planning to tell my oncologist that I was stopping when I had the pulmonary embolism. The neuropathy was only going away just before the next round. I did have either 8 out of ten or ten out of twelve, I can't remember. I only had two more to go. I had seriously considered not even doing the mop up chemo because I'd had to wait so long after surgery because of infections that the odds of success were reduced by quite a bit so I wasn't that confident in the chemo to start with. I hope this helps.

Jan

gfpiv
Posts: 60
Joined: Apr 2010

I dutifully took all 12 (folf)ox treatments, and probably would have taken more if they had let me.  They reduced oxi dose a little on the last 3 due to neuropathy which went away after a few days.  Honestly, knowing what I know now, I would have reduced earlier.  Based on all I've heard, IMHO if you can get 6 full oxi and maybe 2 more reduced dose, you've gotten the vast majority of benefit/shrinkage from that drug.  After that, the (possibly permanent) neuropathy risk goes way up, and the benefit of additional oxi txs goes way down.  In many (most?) cases, neuropathy will get worse AFTER you stop your last oxi tx, perhaps peaking about 4 to 6 weeks afterwards.  Mine peaked pretty bad, it was tough to deal with (l'hermitte's sign, couldn't do buttons etc.).  Thankfully most of the neuropathy went away eventually - as it does for most people.  But I do still have permanent pins and needles in my fingertips and toes and half my feet.  But I've been real lucky in that oxi did its job incredibly well, and I can deal with the permanent neuropathy; eventually I just became used to it.

Bottom line is, 7 full TXs is plenty to get the most benefit out of oxi, and it's more than many people can stand.  Please be very careful about pushing yourself to take more, as there are quite a few people who have permanent neuropathy, in some cases because they or their onc were overly aggressive and didn't take into account future progression of neuropathy enough.  And, although I've rarely heard of actual examples...technically if you stop or taper off the oxi before you fail (get tumor growth) on it, and don't end up with permanent nerve damage...there's a slight possibility Oxaliplatin could be re-introduced again later in the course of your treatment (e.g. a year and a half later) if you ran out of other options.  

Anyway, best of luck in your treatment.

-Chip

 

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NewHere
Posts: 1108
Joined: Feb 2015

Something I didn't mention this time is the my Oncologist said that he tries for 9 in the most optimal situation (no effects of concern) and that past 9 treatments the risk of permanent neuorpathy outweighs whatever benefit the extra 3 doses with Oxiliplatin to knock out the cancer was not worth it, that 7-9 is the range.  He also mentioned that there are studies going on now regarding just 6 full rounds, instead of 12, may be just as effective in terms of balancing out the ability to prevent reoccurance as compared to the risks of the chemo. I need to ask about that at some point.  (Looking back, 6 treatments sounds like a cakewalk compared to 12 Laughing)  My Oncologist also said the effects are not linear, but more of a snowball type thing when it gets to the tipping point.  (Mine was not going away and being consistent, as compared to the now and again up to the cut-off point.  The two week interval before cut-off it was all the time.  Before that, a day or two at a time, some slight times with 8-12 hours scattered in, etc.)

 

It is all a personal decision to be made with discussions with the doctors, but it is a balancing decision.  And as all the experiences related above indicate, there are variations with a common concern about going too far.  

 

 

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JanJan63
Posts: 2482
Joined: Sep 2014

I think someone posted a link on here a while back saying that in Europe the typical protocal was six rounds.

Jan

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

Sounds familiar, for some reason I think that link may have been posted when I mentioned the 3 month trial in another post I made about this.  Or maybe I still have chemo brain :)  (Yes, I will milk that for as long a possible when I mess up.  A little bit of lemonade from the lemons that we were all dealt ;) )

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

So true! I like having an excuse for when I'm being a simpleton! Instead of just being one...

Mary1864
Posts: 39
Joined: Feb 2015

I was released from oxipilatin after 8 rounds.   Funny, my feet were more affected than hands.  Tingling and some numbness in feet, but no troubles walking.  And when I dropped a can on my foot the other day, it hurt like hell!!!  Keep in mind, when you go off, the symptoms will peak before they begin to improve.  

When I mentioned to my doc that numbness was settling in, he was happy to have gotten in 8.  And, my symptoms were not going away in between  treatments.   Like newhere said, the effects seem to snowball.  I was thrilled to stop, the last few just really made me feel beat up!  I think my body was telling me enough.

Good luck with your treatment!

Mary

DaveHereInFlorida
Posts: 48
Joined: Jun 2015

The Doc pulled me off of OXY  ;  even though i was getting numbness in my hands, toes,  joint aches, stomach upset, headaches (minor) ... i wqs totally willing to put up with it.  BUT he said hes seen too mqny people get 'Chemo-crippled'  from Oxy   and typically taqkes them off qjround the 7-10 th treqatment depending on the person.  So, im off of OXY now for 5 weeks but the effects i mentioned hqve remained.  I hope they subside soon----i cqnt type with any qccurqcy as you cqn tell.  

 

Im taking my 13th treatment on Jan 5th at a 3 week interval. Still going home with the pump.

 

I think Avastin  is the key drug that stops the blood supply to the tumors so im hqppy im stqying on thaqt.                                                                                                   

vtspa6
Posts: 172
Joined: Aug 2015

My husband Tim just finnished his 8th treatment.  He said 'no more'.  He is really having a rough time with this drug on his hands, feet, and mouth.  I guess we will see what the dr thinks.

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

was similar to Sue's.  I had eight rounds of Folfox plus Avastin with minimal side effects, but  I  avoided  eating or drinking anything cold and wore gloves  when reaching into the fridge, etc. But when I began the chemoradiation and went on the 5FU pump 24/5   I began to get numbness in my hands and feet. By  the fourth week, my hands were red and very sore and I developed mucositis with nasty mouth ulcers; the doctor took me off the  5FU.  Thank goodness the mucositis cleared up and the red palms went away in a week's times, but  there is still a bit of neuropathy and numbness in my feet and hands-the finger numbness made decorating the Christmas tree somewhat of a challenge! I had the  25th  radiation treatment   on Wednesday and have another appointment  on Monday to see where we go from here.

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