Better news, Neuropathy & questions

Please feel free to read, share your thoughts, your stories and connect with others!
Capri
Posts: 68
Joined: Thu Apr 19, 2018 5:59 pm

Better news, Neuropathy & questions

Postby Capri » Fri Jun 15, 2018 7:36 pm

Hello all,

I wrote earlier this week about my son getting chemo for Stg. IIIA, colon cancer and some new liver spots found on a MRI. One of the spots the rad thinks is another hemangioma and the other one they weren't quite sure. So a PET scan was ordered and nothing lit up. I take that to be good news. The rad group is looking again at the undetermined spot to see what it might be. I'm not sure how they can tell what it is just by looking at a scan???

My son is having neuropathy from fingertips to the 2nd knuckle and a little on the tips of his toes. Onco wants to watch that because it can be permanent. My son told her that he's more interested in killing any cancer cells. Those of you who have had neuropathy-- did it fade or go away completly? He has 4 more treatments of FOLFOX to go and then he'll be done.

What are your thoughts of immune specific therapy for CRC? Are there some cancers it works for and some it doesn't? My son's tumor showed no genetic mutations.

Thank you.
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy

benben
Posts: 303
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Better news, Neuropathy & questions

Postby benben » Fri Jun 15, 2018 10:21 pm

Hi Capri,

While I can't speak to the Liver Spot/Scan. I can relay my experience with Neuropathy.

I was diagnosed 3b at 44 years of age. So similar to your son in age and stage.
I did get neuropathy during treatment quite significantly. To the point that my fingers and toes and even the entire bottom of my feet tingled constantly.
I received 7 treatments with Oxali then it was discontinued due to this neuropathy. I was game to go one more session but my ONC basically said no.
Good news, within 2 months after treatment my neuropathy decreased to almost non-existent levels. I'm now 8 months post treatment and can say I have zero neuropathy.
The only time I can feel it at all is during a very hot shower and I have to actually try and sense it to actually sense it and it's only my feet that tingle. I run several miles a week, bike around 50+ miles per week and do loads of walking and experience no neuropathy.

I know that isn't the case for a lot of folks, however it is for me and perhaps he will have a similar experience if age has anything at all to do with it.
My Onc seemed to think a persons overall fitness level combined with age are 2 big contributing factors to nerve regeneration. Perhaps some supplements can also provide assistance.

best of luck and best wishes.
----------------------
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
7/18 CT-Scan - Clear, CEA 4.6 :(
8/30 CEA 2.6
10/5 CEA 1.5
11/8 PORT OUT!

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Better news, Neuropathy & questions

Postby orlar » Fri Jun 15, 2018 11:23 pm

I can only give you my neuropathy experience so far. I had full strength FOLFOX for 8 cycles when the OXAL became to much (bad neuropathy, but final straw was reaction during infusion). Continued with 5FU to cycle 12 which ended 12/17 . My hands and feet worsened for awhile after treatment. Eventually my fingers have finally improved to where no dropping of things and mild tingling around the tips (been getting better). My feet still have a long ways to go. Currently, I can hardly walk on floors barefoot, so almost always have shoes on. The back part of my instep to the end of my toes are always numb/tingling and painful when I walk a few miles. As many long term members have said in the past, everyone reacts differently and in some instances neuropathy may take a year or two to resolve. Unfortunately, it can be permanent in some cases. This is a decision best made with your ONC.

Good Luck with your treatment!
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

Capri
Posts: 68
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Sun Jun 17, 2018 11:54 am

Thank you Benben & Orlar for your replies. I'm hoping my son's neuropathy will decrease once chemo is done and disappear completely eventually.
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy

jep
Posts: 92
Joined: Sun Jun 11, 2017 7:45 pm

Re: Better news, Neuropathy & questions

Postby jep » Sun Jun 17, 2018 9:58 pm

Hello! My husband finished chemo about 5 months ago...he has noticed some improvement with the neuropathy, but it still bothers him....so much so, that he's heading to his 2nd round of acupuncture tomorrow...he feels that it's already helping....also, the massage excercises that she suggested (along with her healing tea) all seem to really be working....my husband did 6 months of Folfox....10 rounds with oxi....
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed
PET Scan 10/17/18: 3 positive lymph nodes
Irinotecan + Vectobix (started in November 2018)

hawkowl
Posts: 116
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Better news, Neuropathy & questions

Postby hawkowl » Mon Jun 18, 2018 12:12 am

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
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

User avatar
susie0915
Posts: 864
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Better news, Neuropathy & questions

Postby susie0915 » Mon Jun 18, 2018 7:51 am

My neuropathy didn't really kick in until about a month after finishing chemo 2 years ago. It has improved as I don't drop things, my balance is better, and it is basically just tingling on the bottom of my feet. It doesn't prevent me from doing anything more annoying than anything. I usually always wear shoes or slippers. I did try acupuncture which didn't help. I think acupuncture works better if there is actual pain from the neuropathy. I assume this is probably where I will be permanently but it's okay NED 3 years in September.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

benben
Posts: 303
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Better news, Neuropathy & questions

Postby benben » Mon Jun 18, 2018 10:13 am

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.
----------------------
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
7/18 CT-Scan - Clear, CEA 4.6 :(
8/30 CEA 2.6
10/5 CEA 1.5
11/8 PORT OUT!

User avatar
kellywin
Posts: 484
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Better news, Neuropathy & questions

Postby kellywin » Mon Jun 18, 2018 12:15 pm

Spot on Liver/Hemangioma: I also had a spot on my liver that they wanted to "watch" it was really hard to wait through chemo/radiation to see if the spot changed so that they could rule out a met - turned out to be a hemangioma (no idea how to spell that right). Basically, they're watching to see if the spot changes, they're looking for it to stay the same to determine what it is. If it shrinks during chemo, mostly likely a met and the chemo is shrinking it, if it grows, most likely a met that isn't responding to treatment. So no change is what you're waiting for.

Neuropothy - mine peaked a couple of months after I stopped the Oxi, 5 rounds ended in August, peaked in October. I ended up getting on Neurontin/Gabapentin, and it's helped immensely. 5 years later, still on Neurontin and I've accepted the fact that it's permanent. Most of the issues I have are in my feet. However, it doesn't really keep me from doing things I like to do, like snow ski. I suppose if you were a rock climber, that would probably be a problem. However, I am here and without the chemo who knows if I would be. I'd say the biggest side effects I suffer from are surgery and radiation, chemo side effects are third.

Hope this helps and thinking good thoughts for your son, you & your family.

...Kelly
Kelly, mom 13 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
7/2015 Clear colonoscopy!
4/2018 Clear CT!

Capri
Posts: 68
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Tue Jun 19, 2018 8:19 am

jep wrote:Hello! My husband finished chemo about 5 months ago...he has noticed some improvement with the neuropathy, but it still bothers him....so much so, that he's heading to his 2nd round of acupuncture tomorrow...he feels that it's already helping....also, the massage excercises that she suggested (along with her healing tea) all seem to really be working....my husband did 6 months of Folfox....10 rounds with oxi....



Thank you Jep; I appreciate your response. My son has 4 more FOLFOX treatments to go (total of 12) and the neuropathy kicked in. He's so hoping he can complete the regimen.
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy

Capri
Posts: 68
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Tue Jun 19, 2018 8:21 am

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!
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy

Capri
Posts: 68
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Tue Jun 19, 2018 8:25 am

susie0915 wrote:My neuropathy didn't really kick in until about a month after finishing chemo 2 years ago. It has improved as I don't drop things, my balance is better, and it is basically just tingling on the bottom of my feet. It doesn't prevent me from doing anything more annoying than anything. I usually always wear shoes or slippers. I did try acupuncture which didn't help. I think acupuncture works better if there is actual pain from the neuropathy. I assume this is probably where I will be permanently but it's okay NED 3 years in September.



My son's neuropathy is mainly in his fingers, lesser in the tips of his toes. So far it does not prevent him from doing anything.

It's wonderful you are NED after nearly 3 years--may it always be so!! That's what I've been praying for for my son. Thank you for writing.
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy

Capri
Posts: 68
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Tue Jun 19, 2018 8:29 am

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



You're the 2nd poster who mentioned glutamine so I will most definitely tell my son to ask his onco about it.
I beleive my son feels the same as you: risks v. benefits. He feels neuropathy is preferable to not completing the full chemo regimen--4 more treatments to go out of 12.
His goal is NED of course and that is what I pray for.

I thank you for responding!
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy

Capri
Posts: 68
Joined: Thu Apr 19, 2018 5:59 pm

Re: Better news, Neuropathy & questions

Postby Capri » Tue Jun 19, 2018 8:35 am

kellywin wrote:Spot on Liver/Hemangioma: I also had a spot on my liver that they wanted to "watch" it was really hard to wait through chemo/radiation to see if the spot changed so that they could rule out a met - turned out to be a hemangioma (no idea how to spell that right). Basically, they're watching to see if the spot changes, they're looking for it to stay the same to determine what it is. If it shrinks during chemo, mostly likely a met and the chemo is shrinking it, if it grows, most likely a met that isn't responding to treatment. So no change is what you're waiting for.

Neuropothy - mine peaked a couple of months after I stopped the Oxi, 5 rounds ended in August, peaked in October. I ended up getting on Neurontin/Gabapentin, and it's helped immensely. 5 years later, still on Neurontin and I've accepted the fact that it's permanent. Most of the issues I have are in my feet. However, it doesn't really keep me from doing things I like to do, like snow ski. I suppose if you were a rock climber, that would probably be a problem. However, I am here and without the chemo who knows if I would be. I'd say the biggest side effects I suffer from are surgery and radiation, chemo side effects are third.

Hope this helps and thinking good thoughts for your son, you & your family.

...Kelly



Thank you for sharing your experiences.

My son has a known liver hemangioma. The radiologist feels the 2nd liver spot is a hemangioma and the 3rd, it's unclear. Nothing showed or lit up on a recent PET scan, which I take to be encouraging.

He has 4 more FOLFOX treatments to go for a total of 12. He was anemic at the time of surgery and still is, so between that and chemo he has fatigue, some nausea on and off and now neuropathy in his fingers and tips of his toes. As you say, better & still living than the alternative. So far it does not prevent him from doing anything. He's not a rock climber :-)
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy

boxhill
Posts: 122
Joined: Fri Apr 06, 2018 11:40 am

Re: Better news, Neuropathy & questions

Postby boxhill » Tue Jun 19, 2018 11:20 am

My onc's nurse practitioner suggested that I take 10 grams per day of glutamine and a 100 B-complex pill to help combat neuropathy. She said to get the glutamine in powder form in order to take that dose. I have powder that comes with a 5 gm scoop. You mix it with 8 oz of water, or I suppose more water if you are taking the whole 10 grams at once. I was already taking Omega 3 fish oil, 3 caps per day adding up to 1800mg DHA/EPA, on the advice of my PCP, and upon reading more about its probable protective effects on neuropathy I upped it to 4 caps to get to 2400mg.

Last week what would have been my 4th infusion had to be postponed for a week because my platelets were down to 63. My WBC is also low--it was below normal when I started--but is not at a crucial level. One interesting thing has been that the cold-sensitive neuropathy, which definitely got worse last cycle, has completely disappeared in the last week. Of course, I am early in the process.

It's very frustrating to me to have to take this break, since I basically felt fine. They also raised the possibility of lowering my oxi dose in hopes that my bone marrow will be able to keep up. That is also frustrating, since I really want to hit the cancer as hard as I can. But they say that the important thing is to be able to keep going, even if it is at a less aggressive level.

Good luck to your son. (BTW, make sure you get glutamine, sometimes labelled l-glutamine, NOT glutamate.)
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: ginabeewell and 57 guests