Pherephral neuropathy

[Julesdubai]

Omg just completed 12 weeks of chemotherapy paclitaxol absolutely awful. Have numb legs, feet,hands and face. Pherephral neuropathy is debilitating my life. Anyone got any tips as cannot walk, sleep function day to day. Help please xx

[Nocillo]

How awful. I only have encouragement. Never had that drug. Best wishes!

[Silviolina]

hi Julesdubai. I treat my neuropathy with TENS (electro pulses in hands and feets). Maybe you can get info on this.

[Julesdubai in reply to Silviolina]

Hubby went and bought an EMS machine today 😘

[Kerryd22]

I had mild neuropathy after six months of Abraxane. It mainly affected my hands and feet. After two years I suddenly discovered that my fingers were no longer numb. I’d been checking meat was cooked by pressing my finger on it. It didn’t hurt until one day I noticed it was painful to do that! My feet have gradually improved to the point I have very little numbness and the podiatrist says that I do have signs of some slight numbness but it’s very minor. It’s taken a long long time though.

I use Amitriptyline which is for nerve pain but the next drug up in terms of intensity is Lyrica.

Opioids aren’t effective for nerve pain relief but maybe you could get a Lyrica script (if you haven’t already).

A TENS machine is a good idea if you can get hold of one. Acupuncturists usually have a machine so you could ask for a trial to see if it helps before you splash out buying one.

[mariootsi in reply to Kerryd22]

I use a tens machine too. Got a wireless one for $35 on Amazon. Good luck. It really helps. I can't take the usually perscribed pills.

[Figletf in reply to mariootsi]

I was told not to use the tens because I have a heart skip being treated with Metapropol .Wish I could have used it😏

[mariootsi in reply to Figletf]

Oh, I'm sorry. I can't get acupuncture because of my lymphadema.

[Figletf in reply to mariootsi]

ALWAYS something 👍

[mariootsi in reply to Figletf]

Lol. That's for sure!

[Julesdubai in reply to Kerryd22]

Went to see my wonderful oncologist today and got a prescription for lyrica 😍

[bikebabe]

I had 11 weeks of paclitaxal and also had neuropathy. I'm now 2 years on from chemo (now on palbociclib for metastatic and doing well) and the neuropathy has 95% gone - just a bit in my finger tips. i can't even remember how i coped at the time but remember researching it and asking doctors about supplements. I avoided fiddly clothing, did loads of walking (which was weird at times as my feet didn't feel they belonged to me), distracted myself, looked at articles re diet and tried to ensure my other meds (thyroxine etc) and vitamin levels were optimal.

[Figletf]

There is a product called Nerve Renew which seems to help some.I too got terrible neuropathy with Taxol in 2018 .Now I am getting it worse while taking Enhertu .My hair is falling out again too😏

[mariootsi]

God, I hated pacitaxol when I got it in 2014! It took a long time for symptoms to go away, but they did. As my pcp says all your problems are caused by the treatments you have had and are having!

[Roarlion]

Hi Jules,

After a multitude of chemos over the last 3.5 years. Was on paxilitaxol about six months ago. Not good. Now on Trodelvy. Neuropathy has been a mainstay for me. Finally, I asked my wonderful oncology team if there was anything I could do. The chemo nurses all said to try the B vitamin complex ( B1, B6, B12). They also mentioned Gabapentin . I am on my way to to pharmacy to purchase some vitamins. I will start there. Best of luck . We gotta get you moving🥰

[13plus in reply to Roarlion]

This here! Yes B vitamins help support the health of the nerves

[Vanessalana in reply to Roarlion]

Lions Mane helps as well.

[NPmary]

If your oncologist isn't helping you I would ask for a palliative care consult. My neuropathy isn't as bad as yours. Heat like hot sunshine makes mine worse. Cold can make it worse. Don't expose skin to the elements. Gabapentin helps mine a bit. Do keep seeking help. I am so sorry and sad that this is so severe for you.

[AS1f]

I also had Paclitaxol but had to stop the treatment short due to neuropathy. After 2&1/2 years later I am still struggling with symptoms. The issue with neuropathy is that the nerve cells are extremely slow to heal-they say it can take months after the last dose, but in some cases as in mine it can be years and there is the possibility of the damage being permanent. I am angry and frustrated that the medical team knew that this issue could occur when giving me this drug but offered no education or assistance to deal with it other than giving me more drugs. The big problem for me is finding a treatment to HEAL the nerves, not just take more drugs to make it feel better which in turn brings on more side effects and issues. In the early days when symptoms were at their height, I managed by wearing big loose tops and elastic pants that had no buttons, and chose shoes that didn't require me to have others tie. Got a good jar opener, gave up cursive and now sign my name as short as possible. Family helped assist with a lot of things-hubby installed a bidet wand on the toilet (hard to wipe when you can't feel!)... I strongly recommend the book Numb Toes and Aching Soles by John A. Senneff. I've read many other things and watched a bazillion videos, but this book is about the best with most of the info all in one place and is an easy read. My neuropathy is improving, but very very very slowly. It no longer wakes me at night and tends to come in strong waves now and then, but I am getting better at managing it. I have found that these things helped me the most:

Using an ionic foot bath-this was an expensive purchase but well worth every penny. I also have a regular foot bath that I use for soaking in Epsom salts. I find that heat from the bath is more long lasting that using cold packs.

Foot massager tools-I got a "Human Touch Reflex Sole" massager that helps relieve pain a bit but only lasts while you are using it and for a short time after. Using small squishy balls with spikes to roll my feet over exercises the muscles and gives relief (this is an essential for me when traveling any distance in the car). I'm always using various foot roller/massage tools when sitting watching a movie with my family.

Stretching my feet and legs as well as the gluts make a big impact. When my feet hurt at bed time I do a series of stretches with an exercise band in bed and relieving some of the tension is often enough to allow me to get to sleep.

Walking and using great insoles is very important. If I change shoes and forget to swap the insoles I pay for it for a day or two later. In fact, the more you walk while getting the taxol drugs the better because the circulation from walking flushes the drug through and minimizes the nerve cell's exposure to it.

Acupuncture-This has been helpful for lessening the symptoms but it is not enough for me. I am thinking of trying the acupuncture that has TENS applied to the needles next.

TENS-If I use the unit regularly it does help reduce the pain but the numbness is always there, just a but less intense due to the TENS. This was an inexpensive purchase and has also been nice to use for other issues like SI joint or back pain from gardening.

Massage therapy-I found a massage therapist that does Donna Eden energy and electrics massage and she has done the most good for relieving symptoms. She uses all kinds of pressure points and magnets, lights, essential oils... things I thought were a lot of hooey, but the results I have gotten from her sessions are slow but they are lasting! I have often returned home from a session in tears because I could feel the different textures on the floor, rugs, tile etc that I was unable to before. I am tripping and dropping things less and have little issue with buttons. I will continue to go to her as long as the budget allows, as it is not covered by insurance.

Physical therapy-I had to beg for a referral to a physical therapist and it was helpful to establish the correct shoe insoles, stretches, and exercises to help. I learned that having correct posture is very important to help avoid tripping and falling when walking since you have little feeling in the toes to relay data needed to walk. Tried infra-red light therapy but was not helpful.

Topical ointments-Most don't work. I use Arnica gel, and lavender essential oil helps a little bit. At night when it's hard to get to sleep from my feet feeling frozen and numb I use a roll on with menthol (like Icy Hot) and it helps distract from the symptoms so I can drift off. I have not tried CBD oil but have heard others found it helpful. The book referenced above lists many ointments that need a prescription but I have not gone that route yet.

Drugs-I was prescribed gabapentin and Cymbalta, but these presented side effects I was not willing to take on and you have to be careful with the habit forming ones that become less effective over time requiring higher and higher doses like gabapentin does. Also, they are not even effective for the symptoms I have which are the numbness and tingling, they work more for the strong stabbing and shooting pain symptoms. The symptoms from sensory neuropathy are different than those from diabetic neuropathy and the treatments for each are different. Many of the drugs prescribed are not effective for sensory neuropathy, so it just compounds the issue by adding more side effects.

Supplements-I am still researching these to figure out what I need to be taking (and frustrated that the doctors are unable to tell my what is needed!) It is known that the nerves need a number of things to heal and repair the myelin sheath that covers the nerve fibers. The doctors are not very knowledgable about nutrition so I am on my own to wade through it all. This appears to be a good start from what I have learned so far:

Vitamin A, E, K and C

B Complex (B1,2,3,5,6,12) and the B1 should be in a water soluble form of Benfotamine

Biotin

Folic Acid

ALA-Alpha Lipoic Acid (fish oil, flax seed...)

Coenzyme Q10, (a protein molecule)

There are many other supplements as well as medications listed in the book that sound helpful that you should look into. It is just so overwhelming and time consuming to take on a self study of complicated options all while you are trying to get through today and you just want something to relieve the pain. It's a journey, one step at a time. I hope my thoughts give you something helpful.

[13plus in reply to AS1f]

This is excellent advice! I never had a real issue with neuropathy myself but I know for a fact that the things you suggest , that are physically stimulating to the numb areas, can make a marked improvemnt for some people

[Fun2garden in reply to AS1f]

Oh my goodness, I can't tell you how glad I was to read your post this evening! I have been suffering from neuropathy in my hands and feet since mid 2019. My basic plan has been to struggle through and use my TENS machine when I can't cope. Bedtime is always the worst. The wealth of material covered in your post will take me days to digest but, I wanted to let you know how much I appreciate the wealth of information. This site never fails to inspire!

[AS1f in reply to Fun2garden]

I have found another great resource about all the supplements called “ The Antioxidant Miracle” by Packer and Coleman. I’m still wading through it but they explain in detail how key supplements recommended for peripheral neuropathy work in the body. I’m willing to try the “Packer plan” of supplements they lay out in the book (lipoid acid, vitamin E & C, coenzyme Q10, glutathione) . There has to be an answer to get some real relief.

[Iwasborntodothis]

My doc suggests taking L-Glutamine amino acid powder twice a day/double dose - as a result I have limited my numbness to my toes. I don't think it works retroactively but helps spread. I bought it online (GNC) and although it says flavorless - it is not so I add Mio to it. Never hurts to try.

And urgh..some days this site wont let me type anything without jumping around and misspellings...

[awesome4ever in reply to Iwasborntodothis]

That's very interesting. L-Glutamine is also available in capsules. Do you think that might offer the same benefit? I know taking L-Glutamine is indicated to potentially prevent chemotherapy induced neuropathy. May I ask when you say you take double dose twice a day...what is the total in mg daily. I've not taken drugs that cause neuropathy yet but as we all know when we have MBC we go from one treatment to the next as they fail and infusion chemotherapy comes up quickly. Thanks for sharing and I'm glad it has worked for you. Take care.

[Iwasborntodothis in reply to awesome4ever]

I do 2 scoops of 5g twice a day

Glad to help any way I can and I don't see any downside to this....it was for my Taxol IV during the year that worked. I am on Trodelvy now and he says I don't need it unless I feel like the numbness is getting worse.

[awesome4ever in reply to Iwasborntodothis]

Thank you. I appreciate you sharing details. With that dose I would definitely have to use the powder as it would require way too many capsules to make up the same amount. My oncologist is very open minded so when the time comes I will definitely be doing this prophylactically . I will save your response for that time. I am glad that you don't require taking it at present. Take care.

[13plus]

A couple of people here have given you some excellent advice of things to try. I never had a true issue with neuropathy but I know the Vitamin B's can help. Try to find a B complex supplement like Garden of Life's, Vitamin Code, RAW B-Complex. Do try to exercise daily, walk, recumbant spinning, anything to get your legs moving. And the foot rolling with items that have a non-smooth surface, may also help as it improves circulation to the feet, keeps your feet strong and stimulates the nerves, even if you can't feel it. I hope these things improve your situation

[SoulJourney]

Thank you so much for all the great information! I am starting to get fed up with my neuropathy as my whole feet are now effected and my finger tips some days.

I don’t want that to become permanent! My son used L-Glutamine when in high performance football to aid with muscle recovery. I think I will definitely add this to my daily routine.

May we all feel a little better by these great tips!

Tammie

[ANNIE6449]

I wish I could have talked to you BEFORE your chemo!! A few days before starting my chemo in 2018 my breast surgeon told me about a study done in Japan - just released afew days before I saw her!- had shown 80% of chemo patients who had used frozen gloves on hands and feet during chemo avoided ANY neuropathy at all! I ordered the gloves immediately but they did not come until after my first chemo session. So I literally strapped ice packs to my hands and feet for that first session! After that I faithfully used the frozen gloves for my entire treatment and had absolutley no signs of neuropathy at any time during or after my treatments.

That was 5 1/2 years ago. I am shocked and saddened that this is not COMMON KNOWLEDGE & practice among oncologists and chemo doctors and nurses. Several people asked me what the gloves were when they observed me using them during treatments and I was happy to pass along this information. I hope this info now gets out to even MORE chemo patients. I am so sorry it is too late to help you!!

Here's a link to just one of these studies

ascopubs.org/doi/abs/10.120...

These gloves are now readily available online through many different sources.

[Julesdubai in reply to ANNIE6449]

Omg thank you this must be shared with all our warriors so they don't suffer anymore than they have to. Love and light 💜