Neuropathy treatments

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
susie0915
Posts: 406
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Neuropathy treatments

Postby susie0915 » Wed Sep 13, 2017 8:18 am

I was wondering if anyone has tried anything other than medication for neuropathy successfully? I hate how neurontin makes me feel. My neuropathy started about month after finishing xelox. My hands have gotten better although I did have raynauds before the cancer. My feet don't have a lot of pain just numbness and tingling. I have to wear shoes on based surfaces as it's uncomfortable. It's more an a annoyance than anything, does t really prevent me from doing anything.

I have seen advertisements for Drs that treat neuropathy without medication. They seem to be mostly chiropractors. I was wondering if anyone has gone to one of these doctors. I spoke with a physical therapist who was working on my knee and he said they have used dry needling. Sounded like acupuncture. He said I would need an rx. I asked my gp and he never heard of it and said he wouldn't give me an script. My rheumatologist told me there really wasn't any physical therapy for neuropathy at our last appointment. I plan to talk to him when I see him in October. I use topricin cream and a foot massager that stimulates the feet.

Any suggestions?
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

James65
Posts: 360
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

Re: Neuropathy treatments

Postby James65 » Wed Sep 13, 2017 8:23 am

Hi,
I hated the medication too. Massage works well. If you don't have a willing massager a couple times a day you can get one of those automated foot massagers.

I also did as much walking as I could. That helped a lot too.

As to a chiropractor, since the neuropathy is caused by a medication it seems hard to see how an adjustment by a chiropractor would help. There are also different types of neuropathy. One of these other types may be what a chiropractor can manage.

Best,
James
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

User avatar
susie0915
Posts: 406
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Neuropathy treatments

Postby susie0915 » Wed Sep 13, 2017 8:43 am

Thank you. Yes I find moving as much as possible helps. It's just annoying more than anything. I've become used to it. Just wondered if any other options. I do have a foot massager that stimulates the feet. I try to do every day maybe I should step it up and do more often.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

MissMolly
Posts: 421
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Neuropathy treatments

Postby MissMolly » Wed Sep 13, 2017 4:32 pm

Susie:
I would not discount your physical therapist's suggestion of dry needling as an adjunct to moderate pain associated with chemotherapy induced neuropathy.

Dry needling is similar to acupuncture. It involves the use of fine, hollowed needles that are inserted just beneath the skin and into areas of hypersensitivity - typically known as trigger points. The technique is used to treat myofacial and soft connective tissue pain with good efficacy. Dry needling is withhout the use of medications. Wet needling is the same technique with the addition of lidocaine or narcaine as a local anesthetic. Botox can also be used to dampen muscle spasms.

A key to dampening neuropathic pain is to provide purposeful sensory input into the damaged sensory nerves. Purposeful input dampens pain by modulating the eratic firing of the damaged sensory nerves. Neuropathy can be visualized as a down electrical power line that is erratically sparking. Providing purposeful sensory input into the sensory system quells pain by overriding the errant discharge of pain signals.

What is purposeful input?

Purposeful sensory input is anything that feeds quality stimuli into the sensory system.
A. Standing and weightbearing andnealking are ideal and have been reported by members here as helpful tools in dampening the discomfort of neuropathic pain. Wearing sandels with nubly-textured footbeds is a creative way to add more sensory stimulating effect. Birkenstocks are also a popular footwear for those with neuropathy due to the negative heal and contoured footbed.
B. Wearing compressive support knee highs. These are also called anti-emboli socks. A low 10-12 mg/HG pressure is preferred to a more constructive pressure gradient. The constant compression provides a soothing density input, similar to swaddling a crying and colic newborn.
C. Reflexology roller pen for the feet. This item is fashioned after a baker's rolling pen (used to roll out dough and pastry) with spiny extensions on the surface. You roll the under surface of the foot over and back against the roller pen, the spiny extensions massaging the sole of the foot.
D. Massage. Massaging the feet with the hands is an ideal way to decrease neuropathic pain. Wax paraffin baths (frequently used after a pedicure) are a soothing way to flow the sensory inputs into the feet, lessening pain.
E. Topical creams. There are options for compounding pharmacies to create pain releaving creams. Compounding pharmacies can create creams that contain a mixture of lidocaine, gabapentin, ketamine, arnica. These generally require a physician prescription. "Voltaren" is a compounded cream available at most pharmacies.

Neuropathic pain can be more than annoying. It can profoundly affect one's psychological well being against a background of constant pain. Anything that can reduce the severity of neuropathy is appreciated.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

tammylayne
Posts: 2167
Joined: Fri Jul 16, 2010 9:24 am

Re: Neuropathy treatments

Postby tammylayne » Wed Sep 13, 2017 5:16 pm

Look up my thread on my husbands neuropathy. Yes,,,it is medication based, butt a creme that you apply to the area, not an oral drug, so no side effects. He went from looking at perm disability one day to back to work a couple of days later. AMAZING.
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

User avatar
susie0915
Posts: 406
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Neuropathy treatments

Postby susie0915 » Wed Sep 13, 2017 5:31 pm

Karen,

Thank you so much for all the information. I do have a therapeutic massager that plugs in oscillates and stimulates the feet.
I need to find a doctor who will give me a script for the dry needling. I think I'll try my rheumatologist when I see him in October. My general practitioner basically told me no when I asked him. He had never heard of dry needling, so was not very receptive. I use topricin which does help immediately.

Things have improved. I don't drop things like I used to or lose my balance as I occasionally did. Just the tingling and numbness, as well as, not being able to really walk on a hard floor comfortably bare foot. My oncologist told me it can take up to two years and I will be two years in May since treatment ended. I know some are worse than me with pain, but if there is any treatment other than medication that could help restore the feeling in my feet, I would like to try and I am not afraid of thinking outside the box.

Thanks again for all the info, I am going to continue to research and talk to my doctors about getting a script for dry needling. Otherwise, I may try to visit one of those clinics advertised on the radio that say they can help with neuropathy without medication.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

benben
Posts: 222
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Neuropathy treatments

Postby benben » Wed Sep 13, 2017 6:04 pm

Look up TammyLaynes ointment.
That sounds like something good.

Other things you could try CBD in small doses. I notice a lot less neuropathy when I use it, but I rarely do - only when I feel a little nausea or in anticipation of pain such as after Zarxio shots.

Other thing I read about that really helps with neuropathy supposedly - accupuncture - but I'd only advise if all your blood counts are back to normal. Esepecially WBC.


best of luck.
----------------------
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
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR

User avatar
susie0915
Posts: 406
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Neuropathy treatments

Postby susie0915 » Wed Sep 13, 2017 7:30 pm

benben,

What is CBD?
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

mike1965
Posts: 114
Joined: Mon Jan 25, 2016 11:07 pm

Re: Neuropathy treatments

Postby mike1965 » Thu Sep 14, 2017 1:21 am

My neuropathy started near the end of my six month chemo. It good progressively worse in the beginning. First the doctor had me try vitamins it helped a little. I then tried acupuncture and it helped some. The doctor then put me on Cymbalta after six months but it had bad side effects( sexual dysfunction and extreme tiredness). So I stopped the pills after three months and I went thru withdraw symptoms. The neuropathy is now less a year later. I do not know if it is just time that has passed or any of the things I tried. I understand that u do not like the pills. I hope you find something that works for you. Good Luck
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

benben
Posts: 222
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Neuropathy treatments

Postby benben » Thu Sep 14, 2017 6:27 am

susie0915 wrote:benben,

What is CBD?


Susie,

CBD is a cannaboid extracted from marijuana. It has a long list of benefits, help in neuropathic pain is one of these.
I can attest to its abiliy to control nausea, increase relaxation, reduce pain (I've used for bone pain reduction) and antinausea.
So I don't use frequently. Mostly around days 2-5 of chemo therapu for nausea. For me it works better than the zofran I was prescribed and with a lot less side effect.
In fact the only side effects of CBD have all been positive. There is no psychoactive high with CBD. It is shown to reduce pain levels 50-80% in studies. For me the low 25mg does elleviates about 50% on the bone pain levels I experienced during granix and zarxio injections. The claritin I took relieved nothing and caused kidneys to start to stress.
There may be some mental stigma around marijuana still to this day, however CBD is only 1 chemical extracted from the plant and it is legal - worldwide according to this informational video about CBD. I have found it a very effective tool during my ongoing chemo-therapy - I take zero prescribed anti-nausea or pain pills as a result of its usage.

https://www.youtube.com/watch?v=Bw-h402jr5o
----------------------
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
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR

User avatar
susie0915
Posts: 406
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Neuropathy treatments

Postby susie0915 » Thu Sep 14, 2017 7:36 am

Benben,

I have no problem with the medicinal use of marijuana. My brother gave me some edibles right after I finished treatment. He has a friend that is licensed to sell. He thought it may help with anxiety I was having regarding digestive issues I was having after reversal of my ileo. Was a very stressful time worrying about bathroom issues all the time. Luckily I think I have that under control now. I still have some of the edibles do you think that may help? I really don't have a lot of pain it's more of just an annoyance of tingling and numbness. I continue to exercise and do anything, just a weird feeling in my feet.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT


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



Who is online

Users browsing this forum: BIG ROB 69, heiders33, mhf1986 and 42 guests