Better news, Neuropathy & questions

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benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Better news, Neuropathy & questions

Postby benben » Tue Jun 19, 2018 11:56 am

Capri wrote:
benben wrote:
hawkowl wrote:My neuropathy continued to progress after treatment and now that I am more than three years out I assume it is permanent. But I also remain NED more than three years out, so at this point I have no regrets. It is (for me) definitely the lesser of two evils. I think my situation is not really the norm, but like everything in life we just have to weigh out the risk and benefits and decide where our comfort level lies. I would have him ask about taking glutamine to try and minimize the long term severity. I also have recently read about lion's mane mushroom but I am aware of no evidence based studies to confirm or refute this option


Glutamine is one of the supplements that I take as well. It's also one of the few that my Onc allowed me to take during chemo.



I've read a little online about glutamine; I will definitely tell my son to check with his onco at his next appointment. May I ask what dose you take of glutamine and how often? Just to get an idea of what he can ask about.

Much appreciated--Thank you Benben!


Yes I take 1000 mg tablet once per day. I take a variety of supplements, but was restricted by my Onc on most of them during treatment for fear of interaction either synergistic or inhibiting.
Glutamine and D3 were a couple of them that he was ok with.

Ultimately NED is what we are after. Even if it means having a little Neuropathy for the duration.

Best wishes to your son. He's lucky to have a mother like you on his side.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Tue Jun 19, 2018 1:50 pm

That info is very helpful Benben. I'll relay the gutamine and D3 to my son. Right now the only thing he takes is a basic multivitamin/mineral tablet 2x day with the onco's OK to help his anemia.
Looking at your signature, it's quite similar to my son's only a year earlier. I'm not clear on what KRAS MSS etc are but the onco said his tumor was tested and there were no genetic abnormalities.

Absolutely NED forever is my prayer goal as it is his. Slowly he's opening up and telling me more. He doesn't want me to worry. He's my son, of course I will worry, but I am positive and upbeat when we interact.Thank you for your kind words, also. I appreciate them.

I wish only good things for you!
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Wed Jun 20, 2018 11:30 am

Thank you SO much, boxhill!! It really helps me to have specifics to give my son to ask his oncologist about.

He was very bummed when one week he couldn't have oxi due to elevated liver enzymes. Dr. feels the elevation was from Tylenol he was taking for headaches. Since he's stopped that, LFTs are still elevated but have come way down. He wants the full 12 cycles of FOLFOX despite neuropathy so I'm very glad to tell him about the glutamine and B-complex. Thank you!
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

DonP
Posts: 1
Joined: Mon Apr 09, 2018 3:42 pm

Re: Better news, Neuropathy & questions

Postby DonP » Wed Jun 20, 2018 8:39 pm

I too was scheduled for 12 cycles of FOLFOX + Avastin. The Oxi provided the expected side effects with cold sensitivity, first bite, later tingling and numbness, etc. with those effects literally gone before the start of the next cycle for cycles 1 through 9. I had gotten to the point that I was enjoying my chocolate milk shakes on the weekend prior to the start of each new cycle. My oncologist would question me on my numbness and dexterity at each visit and I had really nothing to report, except for strange pressure / clamp like sensations in my toes, particularly on my center toes on my left foot. Then, with the 9th cycle ending the sensations had spread to both feet, and my hands remained sensitive. This was more annoying than painful. Then, with the 10th, the sensations (hypersensitivity of touch in fingers and toes, plus feeling of numbness and like I was walking on balloons) hung around longer and stronger. Determined still to make all twelve, I took the 11th hoping the condition would improve. My ONC let me make that decision on my own unfortunately. That was on January 22, 2018. The conditions did not improve, but worsened and I chose to not have Oxi included with my final treatment of that regime. The neuropathy has continued to worsen since that time, and five months later I still struggle to write my name. I cannot button my shirt, and it is an adventure sometimes simply zipping or unzipping my fly if I cannot see the zipper pull. My fine motor skills are currently (hopefully still temporarily) fried. Simple stuff, like turning on a lamp, opening a bottle of water, pulling up the bedcover, etc. are quite the challenge, and often painful. I have a lot of trouble driving because of the skewed sensations in my feet. I have sat at green lights looking for the gas pedal, and done impressive burnouts unintentionally.

I have gone up the ladder with Gabapentin, taking now 1800 mg per day, the most my ONC is comfortable with. He asks me if it is helping, but frankly I don't know. As this neuropathy has progressed while I've been on it I shudder to think what it would be like if it were not, and really do not want to find out. I have began taking Palmitoylethanolamide (PEA) under the advice of a holistic doctor that is a MD at the university medical center where my cancer center is located. He and my ONC worked together on the recommendation, and after an additional loading studies show improvements in SYMPTOMS only after 1 1/2 - 2 months of this therapy. I've only been on it for three weeks so far.

I guess I've rambled on this far to make this point, please make sure your son is over communicating with his ONC. It does not always pay to be a hero and soldier on just to get the originally scheduled 12 cycles of Oxi. Oxi is highly effective at stopping tumor growth, but it has a dark side as well. I'm praying that he, along with the ONC team, find a happy medium for him and help him to full remission with zero to slight side effects.
8/17 - Dx Stage IV Sigmoid Colon, 8+ lymph nodes, Liver mets (both sides), abdml tumors
12 cycles FOLFOX + Avastin (11 w/ OXI, one w/o) ended 2/7
2/18 - near total remission
4 3 wk cycles Xeloda + Avastin
5/18 - CT shows full return of original Dx with add'l growth, add'l lymph node, new liver tumors, growth of retro-peritoneal soft tissue mass
6/18 - Began 12 cycle FOLFIRI + Avastin
Phil. 4:7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: Better news, Neuropathy & questions

Postby Tdubz » Thu Jun 21, 2018 7:27 am

I’m 9 months out from my last chemo. I had 11 rounds of oxi. After I finished, neuropathy was so bad I couldn’t button my shirts, tie my shoes or type on the computer. Now it’s just a slight constant tingle. Sometimes I don’t notice it at all if I’m focusing on something else, but it’s always there. The only real downfall now is walking barefoot. Most of the time it’s fine, especially on flat surfaces, but i walked on a gravel beach the other day and it killed my feet.

Oh, and legos, stepping on a lego was already bad before neuropathy but now it’s 1000x worse lol!

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Better news, Neuropathy & questions

Postby Deb m » Thu Jun 21, 2018 9:14 am

my husbands neuropathy was on his finger tips and bottom of feet. His fingers got so bad that he couldn't button his shirts. Once completing folfox, his fingers completely resolved within a few months. He still has a bit on the bottom of his feet, but nothing that really bothers him or slows him down. Hes ned 7 1/2 years out from stage IIT4b.

Tell your son to hang in there. My husband was 50 at diagnosis.

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Fri Jun 22, 2018 1:40 pm

DonP wrote:I too was scheduled for 12 cycles of FOLFOX + Avastin. The Oxi provided the expected side effects with cold sensitivity, first bite, later tingling and numbness, etc. with those effects literally gone before the start of the next cycle for cycles 1 through 9. I had gotten to the point that I was enjoying my chocolate milk shakes on the weekend prior to the start of each new cycle. My oncologist would question me on my numbness and dexterity at each visit and I had really nothing to report, except for strange pressure / clamp like sensations in my toes, particularly on my center toes on my left foot. Then, with the 9th cycle ending the sensations had spread to both feet, and my hands remained sensitive. This was more annoying than painful. Then, with the 10th, the sensations (hypersensitivity of touch in fingers and toes, plus feeling of numbness and like I was walking on balloons) hung around longer and stronger. Determined still to make all twelve, I took the 11th hoping the condition would improve. My ONC let me make that decision on my own unfortunately. That was on January 22, 2018. The conditions did not improve, but worsened and I chose to not have Oxi included with my final treatment of that regime. The neuropathy has continued to worsen since that time, and five months later I still struggle to write my name. I cannot button my shirt, and it is an adventure sometimes simply zipping or unzipping my fly if I cannot see the zipper pull. My fine motor skills are currently (hopefully still temporarily) fried. Simple stuff, like turning on a lamp, opening a bottle of water, pulling up the bedcover, etc. are quite the challenge, and often painful. I have a lot of trouble driving because of the skewed sensations in my feet. I have sat at green lights looking for the gas pedal, and done impressive burnouts unintentionally.

I have gone up the ladder with Gabapentin, taking now 1800 mg per day, the most my ONC is comfortable with. He asks me if it is helping, but frankly I don't know. As this neuropathy has progressed while I've been on it I shudder to think what it would be like if it were not, and really do not want to find out. I have began taking Palmitoylethanolamide (PEA) under the advice of a holistic doctor that is a MD at the university medical center where my cancer center is located. He and my ONC worked together on the recommendation, and after an additional loading studies show improvements in SYMPTOMS only after 1 1/2 - 2 months of this therapy. I've only been on it for three weeks so far.

I guess I've rambled on this far to make this point, please make sure your son is over communicating with his ONC. It does not always pay to be a hero and soldier on just to get the originally scheduled 12 cycles of Oxi. Oxi is highly effective at stopping tumor growth, but it has a dark side as well. I'm praying that he, along with the ONC team, find a happy medium for him and help him to full remission with zero to slight side effects.


Thanks so much for your note DonP. Lots of good info in there. Right now my son says the neuropathy is pretty mild but he knows that it can progress.

I think, to me anyway, he downplays symptoms. His motto is that he's "sucking it up" (old Army mentality!); he already missed one week of oxi due to elevated liver enzymes. He doesn't want to miss anymore. I encourage him to be honest with his oncologist and will continue to do so. She is concerned about neuropathy for him.

I appreciate you taking the time to write!
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Fri Jun 22, 2018 1:41 pm

Tdubz wrote:I’m 9 months out from my last chemo. I had 11 rounds of oxi. After I finished, neuropathy was so bad I couldn’t button my shirts, tie my shoes or type on the computer. Now it’s just a slight constant tingle. Sometimes I don’t notice it at all if I’m focusing on something else, but it’s always there. The only real downfall now is walking barefoot. Most of the time it’s fine, especially on flat surfaces, but i walked on a gravel beach the other day and it killed my feet.

Oh, and legos, stepping on a lego was already bad before neuropathy but now it’s 1000x worse lol!



Thank you Tdubz; sounds like you're doing well with your neuropathy. I hope it continues to improve and you do well, like NED!
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Fri Jun 22, 2018 1:45 pm

Deb m wrote:my husbands neuropathy was on his finger tips and bottom of feet. His fingers got so bad that he couldn't button his shirts. Once completing folfox, his fingers completely resolved within a few months. He still has a bit on the bottom of his feet, but nothing that really bothers him or slows him down. Hes ned 7 1/2 years out from stage IIT4b.

Tell your son to hang in there. My husband was 50 at diagnosis.



That's really good about your husband, Debm; really encouraging about neuropathy. I know for others the SE are permanent. May I ask, how many cycles of FOLFOX your husband received?
My son has 4 more treatments left out of 12. He missed one oxi due to elevated liver enzymes. He is hanging in...I just encourage him to be honest with his oncologist about any SE he is having. That's all I can do. I wish your husband continued NED-status; that's fantastic!! Thank you for writing.
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: Better news, Neuropathy & questions

Postby zephyr » Fri Jun 22, 2018 3:30 pm

There are probably lots of brands that are very good but this is the one that an oncology dietician recommended to me:

https://www.amazon.com/Natural-Factors-Micronized-L-Glutamine-Servings/dp/B00JPD59XG/ref=pd_sim_121_1?_encoding=UTF8&pd_rd_i=B00JPD59XG&pd_rd_r=RFGPJ1BEZPN2FAT2HESD&pd_rd_w=jBhUE&pd_rd_wg=Q7LqH&psc=1&refRID=RFGPJ1BEZPN2FAT2HESD

It will help with neuropathy and also digestive distress. I was told to take 10 MG per day. I take one scoop (5 MG) in the morning and one at night. Don't take more than that without a doctor's or dietician's blessing because at some level (I think it's 15 MG/day), there is some thought that it could start feeding the cancer. It has a strange taste, a little sweet but not really. I usually add it to my morning drink.

Regarding the oxaliplatin, sucking it up could cause permanent damage which could lead to fine motor skill and balance issues. My onc and chemo nurses really kept an eye on my symptoms once the neuropathy started and kept cautioning me to be honest and don't downplay it. I'm now 18 months out from my last oxal and still have some neuropathy.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Sun Jun 24, 2018 10:45 am

zephyr wrote:There are probably lots of brands that are very good but this is the one that an oncology dietician recommended to me:

https://www.amazon.com/Natural-Factors-Micronized-L-Glutamine-Servings/dp/B00JPD59XG/ref=pd_sim_121_1?_encoding=UTF8&pd_rd_i=B00JPD59XG&pd_rd_r=RFGPJ1BEZPN2FAT2HESD&pd_rd_w=jBhUE&pd_rd_wg=Q7LqH&psc=1&refRID=RFGPJ1BEZPN2FAT2HESD

It will help with neuropathy and also digestive distress. I was told to take 10 MG per day. I take one scoop (5 MG) in the morning and one at night. Don't take more than that without a doctor's or dietician's blessing because at some level (I think it's 15 MG/day), there is some thought that it could start feeding the cancer. It has a strange taste, a little sweet but not really. I usually add it to my morning drink.

Regarding the oxaliplatin, sucking it up could cause permanent damage which could lead to fine motor skill and balance issues. My onc and chemo nurses really kept an eye on my symptoms once the neuropathy started and kept cautioning me to be honest and don't downplay it. I'm now 18 months out from my last oxal and still have some neuropathy.



Thank you Zephyr; I will share your msg with my son, in hopes that it will reinforce what I've been telling him: be honest with the onco about neuropathy and lessen the "sucking up".
He has glutamine on his list of things to ask the Dr. about at the next visit this week.
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

User avatar
Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: Better news, Neuropathy & questions

Postby Kick'nAssCancer'sAss » Sun Jun 24, 2018 2:58 pm

On July 4th it will mark four years since I had my last FOLFOX treatment which was #8. I still have lingering neuropathy that I most likely will have for the rest of my life. I have never experienced pain just a clumsy numbness in my feet. Hands are good and the feet get worse at night. Neuropathy has never prevented me from doing what I want but it can give you a sense of awkwardness. I would elect to do the FOLFOX again in a heartbeat because my neuropathy is in the big picture a small price to pay after a cancer dx.

Wow I never thought I would be around to write my 200th post on here. Yeah I will happily take the neuropathy.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Sun Jun 24, 2018 4:23 pm

muskokamike wrote:On July 4th it will mark four years since I had my last FOLFOX treatment which was #8. I still have lingering neuropathy that I most likely will have for the rest of my life. I have never experienced pain just a clumsy numbness in my feet. Hands are good and the feet get worse at night. Neuropathy has never prevented me from doing what I want but it can give you a sense of awkwardness. I would elect to do the FOLFOX again in a heartbeat because my neuropathy is in the big picture a small price to pay after a cancer dx.

Wow I never thought I would be around to write my 200th post on here. Yeah I will happily take the neuropathy.


May I ask, did you ever have neuropathy in your hands or was it only in your feet? Did you take anything for it--prescribed or OTC?
May your good reports continue.
I appreciate you taking time to write--thank you!
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

User avatar
Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: Better news, Neuropathy & questions

Postby Kick'nAssCancer'sAss » Mon Jun 25, 2018 7:00 am

May I ask, did you ever have neuropathy in your hands or was it only in your feet? Did you take anything for it--prescribed or OTC?
May your good reports continue


I had very minor tingling in my hands while on treatment and maybe a couple months afterward but nothing major. I never took anything for neuropathy I researched my options and read many post on this board what others had taken. Since my symptoms (numbness) would be considered minor I am sure had I experienced pain like some I would of pursued more options.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Thu Jun 28, 2018 1:01 pm

Thank you very much Mike
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.


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