Neuropathy in both feet

[ken12491]

hello - finished my chemo on 12/17/19 and I still have neuropathy in both feet.. Taking xtandia since 10/2019. Is having the neuropathy this long normal? Any suggestions how to deal or teat it --- perhaps a pain management option? PSA is .7

Thanks..

[Tall_Allen]

Neurontin or pregabalin are sometimes prescribed for it.

[ken12491 in reply to Tall_Allen]

Thanks, tried gabapentin - no help but will look at the other recommendation.

[tango65]

The treatment is symptomatic. They use gabapentin (up to 3 grams a day) or pregabalin (similar to gabapentin but more expensive). If gabapentin is not enough to control the paresthesia they could add cymbalta or amitriptyline. Some pain specialists may add CBD oils associated or not with THC oils or they recommend smoking marihuana. The duration of post chemo neuropathy is variable but it can be permanent.

grandroundsinurology.com/dr...

[ken12491 in reply to tango65]

Thanks --- tried all but cymbalta and CBD.. Will look into them...

[Magnus1964]

This is what I take for peripheral neuropathy:

Neuropathy supplements

1. Mirapex 1 tablet 0.25mg - prescription

2. Gabapentin 2 capsules (300mg) - prescription

3. Acetyl L-Carnitine 1 capsule 500mg - over the counter

4. Leg Cramps (by Hylands) 2 tablets over the counter

5. Aleve PM 2 220mg - over the counter. Because Aleve can cause liver damage with long term use I have substituted Zyflamend 1 capsule.

I take each of these drugs at least 20 minutes apart in the early evening. This helps me get a good nights sleep. The effects last all day long

I take this drugs and supplements in the early evening to get a good nights sleep.

[ken12491 in reply to Magnus1964]

Thanks -- that's a lot but glad it works for you... will discuss with my MO... Best

[cesces]

What generally are the symptoms of neuropathy from Chemo?

[Kaliber]

I’m not sure if this is the same exact thing you are speaking of ...But .... I’ve been on Lupron Xtandi for 25 months ....never had chemo yet . In my case my feet feel like I’m wearing thick pads on the bottom , toes etc. . Kinda like I have one inch thick toe socks on both feet. . It doesn’t hurt most of the time, my toes don’t bend much tho ... my toes and feet seem longer with more space between my toes than I used to have.

Maybe you are seeing a combination of chemo SEs and Xtandi SEs mixing ... or just plain Xtandi.

[ken12491 in reply to Kaliber]

Thanks, Im just on Xtandi -- you doing both? best

[Kaliber in reply to ken12491]

Yes, Lupron xtandi is becoming a first line SOC.

[Magnus1964 in reply to ken12491]

The neuropathy can show up months after chemo and progress.

[Rocketman1960 in reply to Kaliber]

Have the same feet puffy feeling. Been on Xtandi with Lupron for the past 30 months.

[Shooter1 in reply to Rocketman1960]

Also have puffy spreading feet. Wild burning pain in hands and feet if I skip my gabapentin and alpha lipoic acid. Living with numbness and puffy feeling lots easier than the burning , so I'll stick with meds that work. Good luck finding a combination that works for you..Xtandi and orchiectomy--no T. 9 cycles of chemo. Combo of chemo and Xtandi really floored me, then Xtandi alone (full dose) made me an invalid( no feeling in wrists, hands ankles, feet, toes, butt or face) . 1/2 dose Xtandi got me back most of my QOL, but neuropathy remains in a manageable level.

[Break60 in reply to Kaliber]

I have the same problem. But I’m only using estradiol patches. I recently got biopsy of leg nerves To see if nerve endings are truncated and am starting Revitalize tx which are electric pulses to lower legs. I work out daily doing resistance and aerobics. The neuropathy has negatively impacted my golf game since can’t feel how my weight is shifting to lead foot. Sucks.

[Kaliber in reply to Break60]

Wow, DXed 7 years ago and still playing golf ... I want some of that yayahahahaya. I guess that’s the beauty of being stage 3 so long. Still many stage 4 guys here have active athletic lives too. Adt has crippled me , nearly put me in a wheelchair. It’s all good tho, considering the alternative yayahahahaya yayahahahaya.

It sounds like you have a plan that is working for you pretty well , considering everything, seems like your issues with your feet aren’t “ all that “ .... , clearly your condition is enviable , .... good for you brother.

[Break60 in reply to Kaliber]

Try the patches ; ADT is a man killer!

[Kaliber in reply to Break60]

Yayahahahaya yayahahahaya. I’ll mention that to my 5 person medical team next time I see any one of them ..... oh wait ... I never see any of them yayahahahaya I can email my oncologist but he is a man of few words, his only answer is “ your psa is good “ ! “ all “ of them wanted me to enter hospice 24 months ago but I declined and went on adt. My impression is that my still being here at all is a medical fluke or novelty .... we don’t talk treatment strategy and related things. Every time I tell them adt is crippling me to almost a wheelchair status, they give me “ that look “ and ask if I’ve settled my affairs and gathered my loved ones and doing as many fun things as I can. Plus they say “ your psa is good “ yayahahahaya yayahahahaya You are right brother, right now ...this moment ... I think that adt has crippled my blood blood pressure and blood sugar and cardiac rhythms so much, that adt is likely to kill me from heart attack or more likely stroke ...but the alternative would be hospice.... I feel like sticking with adt I guess... just say’in 😂😂😂😂😂😂

[Kevinski65]

I've been on Lupron and Xtandi for 8.5 years. I have this neuropathy in the feet. If you read the insert on Xtandi numbess is a listed side effect. I've asked doctors about it and they just put me on gabapentin. It doesn't help much. Taking aleve with gabapentin helps a little more. I can't walk far. Walk two blocks and it's throbbing like hell. I beats the alternative.

[ken12491 in reply to Kevinski65]

Wow, you are on both L and X? and X could be the cause of it?...will surely look into that... TY

[Rocketman1960 in reply to Kevinski65]

That’s great! 8.5 years riding Xtandi! I pray I could be so fortunate!

[Kevinski65 in reply to Rocketman1960]

Actually I was diagnosed in 2012. For 2.5 years it was Lupron. Then PSA started to rise so I went into a clinical trial at NIH. They were messing with prostvac a fowl pox vaccine and Xtandi. So it was Xtandi alone or Xtandi and prostvac. I got in the Xtandi alone arm. Both arms had to take Lupron or Degarilix. Since I was already on Lupron I continued on that along with Xtandi. So really on Xtandi like 5.5 years. I took a lot of SUPPLEMENTs while I was doing just lupron. I now take Zyflamend, NAC, vitamin D3 and calcium. I have numb feet , weakness, fatigue, most of the common side effects. I take desipramine, wellbutrin and prozac for depression, gabapentin for numb feet, klonopin at nite to sleep.

[Rocketman1960 in reply to Kevinski65]

I pray your path continues to be successful

[The_Dude]

I’ve found gabapentin to be really helpful (900 mg/night). It also seems helpful to avoid a lot of salty food late at night. Best of luck.

[ken12491 in reply to The_Dude]

hey -- tried G but not at those levels will revisit that med at a higher level...TY

[Shooter1 in reply to ken12491]

I'm on 3600 mg daily spread over 4 times/day.

[Kevinski65 in reply to The_Dude]

Read about Lupron while your at it. Lupron doesn't do your feet any favors either.

[Patrick-Turner]

I had 5 doses of Docetaxel in 2018, and I have what seems to be insensitive feet, and they continue to be unable to react to some things I should react to. This means I have to be very careful when working in my crafting shed which has a large amount of clutter I can't easily reduce, so its very easy to trip on something, or on a power lead to a tool I might be using, and I haver to be careful on stairs, so I just have to be slow in my getting around at home.

But when I am on my bicycle it is all different I can cycle quite quickly and fast and efficiently. Today I cycled 85km at 22kph around my town without any trouble. But when I got home, and had a swim, and had to go shopping my feet felt sort of half numb, but very sensitive to any sharp surfaces. I cannot walk on gravel with bare feet. OK, so this is neuropathy, and it lasts a long LONG time is seems, and its just another side effect of Pca treatment a man has to get used to. The chemo I had failed, and I've ben having Lu177 since Nov 2018, so nearly 2 years now of Lu177 treatment, with very few side effects. Psa has been 25 at start of Lu177, went to nadir a year ago to 0.32 then up to 30, then after more Lu177 its now about 7, and I feel fine, but neuropathy remains.

I thought if anything was able to naturally lessen this condition it might be exercise, but that appears not to be the case. I'm 73, and all healthy responses from vigorous exercise is going to be slower than if I was 37.

I am also taking Xtandi, and I doubt it has any effect on neuropathy. It has stopped suppressing Psa by manipulating hormones in my Pca bone mets, but docs think its making PsMa expression higher than if I was not taking it so that when I get a another PsMa Ga68 scan next week the scan should give a better image of what my Pca status is at present. Docs have to decide if it is worth m having a 7th Lu177 dose or not, or else wait until Psa goes higher so any more Lu177 has greater tendency to kill more mets.

I have not been told of any medicine for neuropathy, but Tall Allen suggests a couple of things. I wonder what the side effects of those drugs might be.

Beautiful spring day in Canberra to day, nice long bike ride.

Patrick Turner.

[Hidden]

I had chemo twice so far, and the neuropathy in my feet is pretty intense when I go to bed at night. I have gabapentin and it works pretty well...great if combined with Advil...but I pay for it in the morning...I’m tired up to noon and could stay in bed most of the day (I don’t want to ever fall into that trap). That said,I rarely use the gabapentin and just go with the Advil. All I really need to do is get to sleep.

[EdBar]

I had chemo in the fall of 2015, I have neuropathy in my feet, kicks in during walks, and numbness in my fingers from time to time. MO said there’s not much to do for it and I’ll likely have it for the rest of my life. I’ve been on Lupron six and a half years, and Xtandi for five and a half.

Better than the alternative as someone else said. I just wear cushy comfortable shoes and have to limit walks or just deal with it if that’s not an option.

Ed

[moguzzi]

Unfortunately I think it's the luck of the draw. Had 10 treatments of docetaxel. Finished this May. Neuropathy showed up mid-treatment in spite of my wearing chilled gel mitts and foot covers. Had numbness in fingertips and my feet. No pain so far, fortunately. MO said it might go away over time, or might not. It's case by case. In the meantime my walking is unsteady but I've found that shoes with firm soles and thick internal padding help. I wear hiking shoes. Although I haven't tried them, I've read there are also certain models of New Balance shoes which can help stabilize you and minimize the discomfort.

I used to run but I don't feel confident in my stability to return to that. Bicycling, with well-padded gloves, is a great exercise and now that cold weather is arriving I've switched over to walking for an hour or two, sometimes with a cane or trek poles if it's on uneven ground. Movement helps.

As others have said it's still better than the alternative.

[Pianodude]

I had very mild numbness in my feet before I was diagnosed. After 5 rounds of Doxetaxel the numbness got worse. My MO canceled the 6th round. I have to be careful walking.

[monte1111]

Developed foot neuropathy after chemo was done. My feet are always cold. I take Gabapentin (which helps with hot flashes). Very annoying. Especially in the evening and night and winter months. 3 years now. Possibly slightly better than when it started.

[Shooter1 in reply to monte1111]

Megace really killed my hot flashes, but my driving went really downhill. Needed rumble strips and center line to stay close to my own lane. Had to quit megace and put up with hot flashes. (less on 3600 mg gabapentin ).

[monte1111 in reply to Shooter1]

I started 3 x 300 mg, then 3 x 600 mg. I cut back on my own, but after reading dosing, think I will go back to 3 x 600 mg. My theory of less being better may be wrong in this case. I guess I'm not qualified to self prescribe. My kidneys are about the only things that still work right, so I could ask Dr. about increase of dosage. I will avoid Megace unless I am persuaded otherwise. Thanks for your wisdom.

[j-o-h-n]

I've had peripheral neuropathy before my Pca.... I'm on Lupron/casodex for a long time. I take 1 Neurontin/Gabapentin 600mg in the AM and 1 in the PM.

I also take 1 Duloxetine (Cymbalta) Hcl Dr Caps 30mg once a day (for leg/nerve pain).

Except that my feet feel like sponges (and cold) I do not have any pain... I used to have the feeling that my feet were burning and stinging but it's kaput now. (kaput means no fucking pain anymore, thank goodness).

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/01/2020 4:08 PM EST

[Hidden in reply to j-o-h-n]

Hey guy I have peripheral neauropathy in hands and feet . Sometimes I have random shooting electrical pains throughout my body. Years of antibiotic use and adt add up . Mostly the burning and stinging is as I’m trying to sleep. It feels like my feet are dipped in wax and can’t breath .. no major pains just 1000 little cuts .. five years of the same . I am Lucky to be alive .😂 stocks up a bit today . But the crash is a coming very soon . 🤔

[j-o-h-n in reply to Hidden]

As I posted above.... I too suffered from neuropathy (feet only) but the Neurontin/Gabapentin finally took care of it.

From Mayo Clinic on Google:

Your doctor may order tests, including:

Blood tests. These can detect vitamin deficiencies, diabetes, abnormal immune function and other indications of conditions that can cause peripheral neuropathy.

Imaging tests. CT or MRI scans can look for herniated disks, tumors or other abnormalities.

Nerve function tests. Electromyography (EMG) records electrical activity in your muscles to detect nerve damage. A thin needle (electrode) is inserted into the muscle to measure electrical activity as you contract the muscle.

At the same time as an electromyogram, your doctor or an EMG technician typically performs a nerve conduction study. Flat electrodes are placed on the skin and a low electric current stimulates the nerves. Your doctor will record your nerves' responses to the electric current.

Other nerve function tests. These might include an autonomic reflex screen that records how the autonomic nerve fibers work, a sweat test that measures your body's ability to sweat, and sensory tests that record how you feel touch, vibration, cooling and heat.

Nerve biopsy. This involves removing a small portion of a nerve, usually a sensory nerve, to look for abnormalities.

Skin biopsy. Your doctor removes a small portion of skin to look for a reduction in nerve endings.

Sorry but one of the above is what I would try.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/02/2020 12:33 PM EST

[Shooter1 in reply to j-o-h-n]

Had several of the above..major nerves into back of hands completely dead (no reaction) others slow sensory and slower motor. Finger nerves random pain shots. Feet little to no toe control is improving, pain very little with gab. Used to feel like wet sand between toes when they started to respond and I could move them again. Really helped balance when you can move your toes.

[j-o-h-n in reply to Shooter1]

I can imagine....... I'm having balance problems.... Sometimes I feel like a ballet dancer... I also had the Electromyography (EMG) test many many years ago and was okay. Age and Pca......are the culprits.... Good wishes to you and to your nerves....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/02/2020 5:41 PM EST

[Rod98168]

I've had nerve pain in both feet for several years that has worsened but its not related to PC as I've had it long before the cancer. It may be coincidental.

[Hidden in reply to Rod98168]

I had some prior pc . I think that all geriatric diseases are rapidly promoted upon us .

[ron_bucher]

My MO prescribed vitamins B6 and B12 to prevent neuropathy. Have you check your levels? I’ve stayed on B6 and B12 since my taxotere nearly four years ago, and my neuropathy is barely noticeable.

[Grouser]

My husband has had neuropathy since his first chemo 10 years ago for rectal ca worse now since radiation for Prostate Cancer. Tried everything it not much success. Oxcycoton is scary but he takes it when the pain is severe . Another help is Highland Pharmacy( also Lord Jones has a good product ) CBD cream 500 MG it smells nice and he puts in on his feet and legs to get some relief. So sorry for you keep moving work through the pain get a bit of Physical Therapy too. Let us know what you find that helps. (currently he is taking Neuronton 3 x daily)

[immunity1]

For me too, peripheral neuropathy after 5 or 6th dose of docetaxel (150mg). Weakness in both legs, with loss of most feeling in both feet (cushion like as others have described). Able to get around. Decreased PSA for 6 mo. Will have cabazitaxel if I ever try chemo again - advice? R