Peripheral neuropathy question

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Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Peripheral neuropathy question

Postby Pita » Tue Aug 09, 2016 1:48 am

Here you're getting ready to celebrate and drink wine and we went out and celebrated and drank wine tonight before I start chemo.
Hope you get relief from the neuropathy GK
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: Peripheral neuropathy question

Postby AussieAssCancer » Tue Aug 09, 2016 3:48 am

Sage advice Pita and jhocno197. I may have a glass for each of you
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

Soccermom2boys
Posts: 216
Joined: Tue Nov 10, 2015 10:29 pm

Re: Peripheral neuropathy question

Postby Soccermom2boys » Tue Aug 09, 2016 9:47 am

Yes, you have earned an entire vineyard's worth of wine-enjoy! It's funny because by the time you get to that last round you are so worn down mentally and physically you really have not much left in you to celebrate the way you think one might at the end of it all. Crying is a definite natural reaction, we have been through a lot. At least they are tears of joy this time around! :D

Just so happy to know you are so close to the end of the treatments. It is ironic to be so otherwise healthy and fit and yet be dealing with cancer, crazy how that works. It's one of those things where you know you should be thankful you are healthy enough to weather these horrid treatments, but at the same time you feel too young and healthy to be dealing with it in the first place. I can't say I am nervous or anxious to be finished, just pure relief! I will get nervous for the scans for sure, praying that they never find another spec of it in me again because now that I know what chemo is all about I dread the thought of reliving that experience, but I am too happy to be out from under that black cloud to let it hamper my overall euphoria of being off of chemo.

Tomorrow is disconnect day, right? Hoping the time zips by until then!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Peripheral neuropathy question

Postby aja1121 » Tue Aug 09, 2016 10:05 am

Double post.
Last edited by aja1121 on Mon Aug 15, 2016 8:59 pm, edited 1 time in total.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Peripheral neuropathy question

Postby aja1121 » Tue Aug 09, 2016 10:06 am

Yes, enjoy that glass/bottle/case of wine :)

Well, I have a three month follow up at the end of September with my onc's office--will see by then if I want to explore any prescribed medication. I am trying to avoid taking any more than I need to and of course it comes with it's own set of side effects so I will wait it out a bit longer. Thank you Aja for letting me know it's working for your DH, happy that he is able to get relief from the neuropathy and that the medication can be very helpful for those whose nervous system responds to it. So maddening sometimes how unique we each are to our responses to these various drugs/treatments because you never know what point in the spectrum you will be at.


Yes, I want to get the word out to people that it's at least worth checking out. The oncologist was very dismissive of both gabapentin and Lyrica, told us the side effects aren't worth the minimal help they offer. The palliative care doctor had a very different opinion. His first-line approach with cancer patients who have peripheral neuropathy is Cymbalta and Lyrica. My husband had started an antidepressant (Celexa) after being diagnosed, but the switch to Cymbalta was easy. Apparently the key with Lyrica and gabapentin is to taper on slowly to avoid fatigue/brain fog. I believe it took four to six weeks to get to the current dosage of 300 mg/day. Hubby did have some fatigue at each dosage increase, but it resolved in a few days.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

Soccermom2boys
Posts: 216
Joined: Tue Nov 10, 2015 10:29 pm

Re: Peripheral neuropathy question

Postby Soccermom2boys » Tue Aug 09, 2016 2:20 pm

aja1121 wrote:
Yes, I want to get the word out to people that it's at least worth checking out. The oncologist was very dismissive of both gabapentin and Lyrica, told us the side effects aren't worth the minimal help they offer. The palliative care doctor had a very different opinion. His first-line approach with cancer patients who have peripheral neuropathy is Cymbalta and Lyrica. My husband had started an antidepressant (Celexa) after being diagnosed, but the switch to Cymbalta was easy. Apparently the key with Lyrica and gabapentin is to taper on slowly to avoid fatigue/brain fog. I believe it took four to six weeks to get to the current dosage of 300 mg/day. Hubby did have some fatigue at each dosage increase, but it resolved in a few days.


Yes, that is good to do for sure! Even if it doesn't work for one person it may for another so it truly never hurts to share that kind of info. I will tuck this away until I have that follow up appointment and see how the neuropathy feels at that point. Thanks for the details about the slow increments, that is helpful. I would bet that a palliative care doctor is the better one to go with for something like this, as you said, a very different opinion. Thanks Aja, hope your DH is doing well overall!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

folbright
Posts: 9
Joined: Sun May 01, 2016 9:50 pm

Re: Peripheral neuropathy question

Postby folbright » Fri Aug 12, 2016 8:59 pm

I finished my 12 cycles of Folfox at the end of June. I had been warned to watch for signs of neuropathy but aside from a few days of cold sensitivity (particularly bad in the winter), I noticed no symptoms ie no tingling or numbness. In the last 2 months or so of my treatment I did notice daily instances of stumbling with a knee giving out while I was walking but never bad enough to cause me to fall. I didn't think this was related to the chemo treatment though having done some research more recently I know realize that may have been a symptom neuropathy.

I didn't notice any numbness in my hands or feet until after the 11th cycle of treatment and at that point it lasted for the full two weeks until the 12th cycle so I mentioned it to the doctor and he removed the oxaliplatin from the cocktail. In the month after the end of chemo most of the sensation in my fingers returned - there's just a little bit of numbness in the tips of my thumbs and one or two other fingers though occasionally I have had some temporary numbness further along my hands and occasional, light and fleeting "pins and needle" sensations but no actual pain. My feet and particularly my toes have gotten much worse and by the time I arrive home at the end of the day I can barely stand and have to lie down for an hour or so. I've also had really bad shoulder pain this week though I don't know if that's actually neuropathy, or perhaps a secondary effect of my feet throwing my whole body out of alignment, or if it's completely unrelated.

Are there any exercises I can do or vitamins or minerals that can take that will help my feet in particular? The doctor said there is a prescription drug that won't reverse the neuropathy but can help with their symptoms in some people but he says he doesn't recommend it (side effects and he doesn't think it's very effective).
Admitted to ER November 2, 2015 after collapsing following several weeks of digestive issues and days of vomiting bile
Diagnosed November 3, 2015 with colon cancer
Surgery November 16, 5 cm resection. Stage III diagnosed following biopsy (tumour + 1 lymph node cancerous). Folfox semimonthly (12 cycles) January to June 2016
CT scans clear for colon. Suspicious spots in lungs detected in January 2018. Wedge resection July 31 to remove 1 nodule that had grown. Biopsy found it malignant. Scans clear since then

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: Peripheral neuropathy question

Postby AussieAssCancer » Sat Aug 13, 2016 10:28 pm

Thanks for all the well wishes guys. Rest of the pump time flew by and have been resting all weekend.

Unfortunately even in the last few days the neuropathy has gotten worse in my fingers and has now spread to my toes. It could just be the weather (it's winter her in Oz) but will definitely tell the doc when I see him before I kick off my last round.

They didn't say anything about meds for it so will ask them about that as well. Thanks again

GK
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

User avatar
kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Peripheral neuropathy question

Postby kellywin » Mon Aug 15, 2016 4:22 pm

Mine crept in and got worse after I was done - probably spiked about 2 months after I was finished. At the worst point, I was falling. I take Gabapentin and it works wonders for me. I don't notice any side effects (I initially thought it made me hungry/gain weight - but I'm pretty sure that's post-menopausal and the fact I turned lazy and eat like crap).

Why wait on the wine - if it sounds good now, have at it.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only


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