How do they manage Peripheral neuropa... - Advanced Prostate...

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How do they manage Peripheral neuropathy induced by docetaxel?

Igra profile image
Igra
33 Replies

Peripheral neuropathy treatment in docetaxel for Ca prostate

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33 Replies
Tall_Allen profile image
Tall_Allen

Prevent with ice or try neurontin

Concerned-wife profile image
Concerned-wife in reply to Tall_Allen

Because many are concerned about neuropathy and also of us follow and respect TA, I wanted to share that the article by Dr Tanya Dorff was less definitive about icing. She was testing the impact of fasting.

This otherarticle looks at icing as well as compression ncbi.nlm.nih.gov/pmc/articl...

spencoid2 profile image
spencoid2 in reply to Tall_Allen

I am hoping to avoid peripheral neuropathy with cold packs. I am starting chemo on the 25th of October. I have a great purple wig just in time for Halloween but I don't think my hair will fall out that fast.

I bought a small 12/24 volt DC 120/240 volt AC freezer (compressor type not the peltier junk) and three sets of mittens and booties. If they let me take the freezer into the infusion room. If they don't I'll go somewhere else :) I should be able to keep my feet and hands really cold. I considered an ice chest but that would only keep stuff cool and although three sets of packs might be enough I can not depend on them staying cold. It is a 4 to 5 hour drive to treatment. I do have a freezer in my van but I ate driving it on the dirt road when it is as bad as it is now due to pot growers water and fuel deliveries. I wish pot could just be made totally legal so anyone could grow it if they needed it but out county has to make a ton of money and seize property etc.

The freezer is supposed to be delivered today and I will know how effective it might be at cooling gel packs.

What I don't understand is why it is not standard for the infusion center to have a freezer and the ability to cool your personal gel packs. You could put them in a sterile bag each time so they would not have to be concerned with cross contamination. I guess the $20000 plus they are charging does not allow for such luxury.

Tall_Allen profile image
Tall_Allen in reply to spencoid2

Peripheral neuropathy is not assured and the ice mittens are painful for some (be careful to take them off before you get frostbite). Bring an electric blanket too to keep your core warm.

spencoid2 profile image
spencoid2 in reply to Tall_Allen

they do provide blankets at the infusion center. the mitts and booties have insulation between the gel pack and the skin. the freezer is completely adjustable so i can make the gel packs any temperature i want instead of relying on a cooler and who knows what. the infusion takes about an hour so even if i make the gel packs only coolish three should last for the session especially since a warm one can be put back in the freezer and should cool off pretty quickly. the freezer is 20 quarts so there is room for much more thermal mass than the gel packs. i will probably keep it full of other gel bricks or nearly full. and then maybe a few ice cream bars :)

the mitts and booties were delivered to the wrong address but i still should be able to get them in time to experiment and know how to avoid frostbite. i am pretty immune to heat (i have asbestos hands) but cold is a problem.

Shooter1 profile image
Shooter1

Major doses of Gabapentin. I have tried some other meds, but side effects made me quit them. I take 1200 mg morning and night plus 600 mg twice during the day-=- 3600mg daily. A high dose, but with less I have flames out of my fingers and toes. Pain typing , walking or sleeping with anything touching my feet. Good luck, I hope you don't need as much.

I iced hands and feet during infusions and still ended up like this after 9 cycles of docetaxal.

Cateydid profile image
Cateydid in reply to Shooter1

my Joe was recently prescribed gabapentin. He takes 200 mg once during the day, and 600 mg before bed. Makes a huge difference!!!!

Doc told him he can take more if needed. Good to know as he’s got 4 more chemo treatments to go!

Shooter1 profile image
Shooter1 in reply to Cateydid

Glad to hear he is getting some relief from his neuropathy....

dockam profile image
dockam

Hi, I had 15 Taxotere sessions in 2015, another 6 in 2020, and just had my 15th Cabazitaxel with 3 more to go. I discussed the lack of neuropathy with my 1st MO, and he surmised that my being a marathoner may have helped offset it by perfusing the very fine capillaries in the digits with Oxygen. I also fasted 2 days prior to each chemo and in my case that really reduced the side effects.

During chemo I would do leg lifts, scissor kicks, squats, and even just stood up and danced. After the session, I would take a hike that evening.

pubmed.ncbi.nlm.nih.gov/352...

breastcancer.org/research-n...

nature.com/articles/s41416-...

chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/iwmf.com/wp-content/uploads...

osher.ucsf.edu/patient-care....

Fight on

Randy

SeosamhM profile image
SeosamhM in reply to dockam

Classic Doc - sweat it out! ;) But seriously, I wonder if there has been a study on chemo dosing/outcome with and without exercise. It makes sense that exercise allows for getting good stuff (even chemo) into, well, everywhere, and gets the bad stuff out - like dead cells and other metabolic poisons.

It would be tough - chemo was not a great experience, but it did oddly push me to refinish a bathroom!

dockam profile image
dockam in reply to SeosamhM

Yea, one of the above articles stated :

"At the end of the study, the researchers found that women who exercised for 5 or more hours per week were less likely to have neuropathy symptoms get worse compared to women who exercised fewer than 2.5 hours per week."

So, more data needs to accumulated, but everyone will benefit from cardio/weights whether of not they are dealing with cancer . Of course, with your MDs okay :-)

Randy

monte1111 profile image
monte1111 in reply to dockam

Please don't take this wrong, you remind me of the Energizer Bunny.

dockam profile image
dockam in reply to monte1111

Lol, no worries, been called that before and you're not Trolling with that statement.

I'm taking it as a compliment, I'm a Type A AZN, who has to get like an A+ in Chemo

SeosamhM profile image
SeosamhM in reply to dockam

"A+ in Chemo..." = Definitely going in my "Quotes to Use" diary!

dockam profile image
dockam in reply to SeosamhM

Lol, as an AZN I can make those kinda statements.

Nah, that's too politically correct. Go for it Brother :-)

Just being as proactive about my PCa treatments as possible. A Kaiser MO said kinda dismissively that she knew that I wanted to feel like I had some control over my life with #stageivpca.

Like Girl please, it's my d*mn life we're talking about, and of course I wanna do whatevers to stay around as long as I can.

Go big or go Dead

Mahalo and Fight on

Randy

SeosamhM profile image
SeosamhM in reply to dockam

Only one thing comes to mind:

youtube.com/watch?v=ZUYXOM_...

dockam profile image
dockam in reply to SeosamhM

Lol, Mahalo "get 'er done" 💙

youtu.be/x6QZn9xiuOE

youtu.be/mW1dbiD_zDk

slpdvmmd profile image
slpdvmmd in reply to dockam

Respect. Amazing you tolerated that many rounds of taxanes. 6 really hit me hard. Curious have you had a PSMA /Pet?

dockam profile image
dockam in reply to slpdvmmd

Hi, Kaiser Medicare finally okayed my PSMA scan, and will get it next Weds. Diagnosed with #stageivpca in 2015, started ADT and 2 weeks later the Taxotere. PSA went from 840.2 down to like 15 and then MO decided to add 9 more. I tolerated it all very well, fasted 2 days prior to each, and do 16 hr fasts daily.

Abiraterone, then Xtandi failed, that's why I got the 2nd round in 2020

acsjournals.onlinelibrary.w...

So, IMHO, the 2 day fasts may have reduced the side effects.

Also, maybe having down a bunch of marathons helped, cuz my body was used being stressed.

zerocancer.org/blog/ive-bee...

Fight On

Randy

CAMPSOUPS profile image
CAMPSOUPS

I have neuropathy in the form of numbness on bottom of feet and toes and on fingertips from chemo 3 years ago.

My medical oncologist who is a standard of care medical Dr. recommended trying acupuncture. I never did try it but have heard people speak of it helping.

Dastardly profile image
Dastardly in reply to CAMPSOUPS

I have the same sort of numbness in my feet from chemo 3 years ago. I had a six week course of acupuncture a while ago, and I noted a definite improvement at the end of it. The problem is that, a soon as I stopped the acupuncture, the improvements disappeared. I have also tried vitamin B12, Mega Benfotiamine and R-Fraction Alpha Lipoic Acid. Only the last one seemed to help, although barely noticeable. I checked the side effects of Docetaxel before I started the chemo and, although CIPN was mentioned, details were pretty sparse and no mention was made that the pains and numbness might be permanent.

Andy1569 profile image
Andy1569 in reply to CAMPSOUPS

Gabapentin, 600mg, in the morning and at night have helped me considerably. I also had Dry Needle procedure performed on my feet by a Physical Therapist gave me great relief.

Good Luck

CAMPSOUPS profile image
CAMPSOUPS in reply to Andy1569

Thanks.

Yea I have no objection to getting side effects of a psychological nature (high etc.) but I was one of the few who get a real dark, gloomy, drape over the world mental side effect from gabapentin so I dropped it from my meds a couple years ago.

Flash64 profile image
Flash64

For me, acupuncture that included electrical stimulation of the nerves in both feet helped a lot.

London441 profile image
London441

As with other treatments, the more movement the better. Sedentary living and excess weight invite trouble, including neuropathy. Most guys claim to get much more exercise than they actually do, so be honest with yourself.

Brightman profile image
Brightman

I have peripheral neuropathy in my legs and feet since 6 treatments of docetaxel every 3 weeks was completed in early 2017. I have controlled it with exercise (every day) and Indometican twice a day. One GP tried me on Pregabalin but that impacted on my pulmonary fibrosis. My neuropathy is much better these days thank goodness. Best wishes.

Doseydoe profile image
Doseydoe

It took 2 years for my neuropathy to finally disappear. Everyone is different. DD 😎

Fastingguy profile image
Fastingguy

Gabapentin works well for me. I take just before lights out and the neuropathy no longer keeps me up at night.

awb1 profile image
awb1

Several respondents mentioned exercise. Me too. I had 6x docetaxel in 2008, 6x with carboplatin in 2015, and 3x this year. 2015 and and this year I got mild neuropathy but it went away in 2015 and is fading for 2022. I exercise a lot, on my feet in the gym, running and hiking hills, constantly working on my house, salsa dancing in clubs, cooking in the kitchen, etc. For me, exercise is the answer to almost every negative effect of treatment and all the other crappy old age things that want to bug me. One new thing this year was random neuropathic itching on the tops of my feet and ankles, it drove me nuts, but that's fading too.

CAMPSOUPS profile image
CAMPSOUPS in reply to awb1

You don't have a bio but your comment here shows you have had quite a long journey. Congrats on that man.

I assume you had a high PSA and or significant amount of mets in 2008 to be treated with Docetaxel or maybe recurrence after surgery or radio.

awb1 profile image
awb1 in reply to CAMPSOUPS

High is relative, for me 1 is high. My point is that constant exercise helped with neuropathy, the topic in this thread.

(I choose not to read other's bios nor detail mine, interested in specific topics)

moguzzi profile image
moguzzi

As you probably surmised by reading the posts, it's trial and error. Midway through my 10 doctaxel treatments peripheral neuropathy reared its ugly head. I tried ice, fasting, Mega Benfotiamine to no effect. As with Dastardly acupuncture helped as long as I kept doing it but there was a rebound. My last treatment was in June 2020 and the neuropathy has receded significantly, so time may help. Exercise definitely helped, as others have said. Hand exercises with a squeezy stress ball helped my hands and fingers. Also getting different shoes gave me more stability standing and walking and eased foot pain. (Google "neuropathy shoes" to find suggestions.) I'm not ashamed to resort to a cane (I call it a "walking stick") when necessary. Hope some of this helps. Best of luck.

slpdvmmd profile image
slpdvmmd

I used foot and hand cooling glove and socks I got from Amazon during the Chemo (froze them and changed them out as they warmed during the cycle). Currently used a rubber spiked roller ball on my feet which seems to help.

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