Could this be the start of neuropathy? - Advanced Prostate...

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Could this be the start of neuropathy?

CrocodileShoes profile image
28 Replies

I had my first Docetaxel infusion 6 days ago. Due to the Dexamethasone before and the Prednisone since, I have been really well. In the gym most days, and eating really well.

I have had no side effects - until today. It's a minor thing, but both thumbs are a little sore. It's not a tingling sensation, more like I jammed my thumb in the door a couple of hours ago. I read that peripheral neuropathy doesn't usually start until the 4th/5th, so is it even possible that I could be feeling something after 6 days???

I have had such a good start to the chemo regime, and I'm scheduled for 10, so I'd hate to have neuropathy curtail it.

Has anyone experienced anything similar?

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CrocodileShoes
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28 Replies
Mike1971 profile image
Mike1971

Hi CrocodileShoes. Are you getting ice packs for hands and feet while getting the chemo?

CrocodileShoes profile image
CrocodileShoes in reply toMike1971

I am now....

Vangogh1961 profile image
Vangogh1961 in reply toCrocodileShoes

I held ice bags and had ice on my feet. I tried on my head, but still lost the hair after the third dose. A couple months and for a year after I had some tingling in my feet, but it's resolved. Ice is your friend. Suck on ice chips to help with taste the week after.

JohnInTheMiddle profile image
JohnInTheMiddle

Oh you are scheduled for 10 infusions of Docetaxel! That means your MO's appreciate your fitness. So here are my comments and experience on trying to prevent neuropathy when undergoing Docetaxel chemo against prostate cancer.

1. COLD ON EXTREMITIES - When I had my six chemos I had bags of ice in special weird socks that the nurses put on (this wasn't my idea - it was their own local "standard of care" 😃). And then bags of ice for my hands. Because as you know the theory is that cold helps prevent neuropathy - it's weird that the research is not so strong on this. And apparently it just works because your blood vessels shrink a little bit or something.

But also if you're using ice, the application of the ice is very tricky. The air in the bags acts an insulator. No one seems to notice this is or care. I always asked for extra bags both top and bottom. And I prick the bag to let the air out. Then you have to be careful not to get frostbite (seriously!). And then there's water dripping everywhere 😂.

But I'm trying to keep an even amount of cold all over my hands. I fortunately did not get any neuropathy. Some hospitals provide special cold booties and mitts. My daughter provided me with some cold mitts but I decided not to use them because I didn't think that they kept my hands uniformly cold. Okay so I am a single data point, otherwise known as an anecdote.

2. FASTING - there is some research that fasting one day before through one day after your infusion can make a difference. Of course you're drinking water or whatever. We are talking a 100% fast.

I have done fasting so this is not too hard to do (if you are used to a lot of carbs, then I think fasting might be quite difficult and you might get crazy hungry). See what you can find on this because I think this could be important.

Apparently normal cells in conditions of fasting go into a state which makes them less vulnerable to chemo. However according to the theory cancer cells are unable to do this in the same way and so are more vulnerable to the chemo. Maybe because they're so enthusiastic to grow and grow?! So the result is you may be less vulnerable to neuropathy and at the same time possibly enjoy enhanced benefits of chemo.

My understanding is that fasting around chemo is not so uncommon, and it doesn't seem to be risky in any obvious way. Might be worth a try?

See if this all makes sense.

CrocodileShoes profile image
CrocodileShoes in reply toJohnInTheMiddle

Thanks John. My ice boxing gloves and slippers just arrived from Amazon. I've also just heard from my Oncologist who said neuropathy never sounds like a trapped thumb - it's always tingling. He told me to get back in the gym......So, that's reassuring. Another warrior said it might be joint pain, brought on by the chemo.

Re fasting: I did the Fasting Mimmicking Diet for my first infusion (72 hr fast, with just one bowl of weak broth per day) It was pretty easy, and I was able to keep exercising and felt like I had more energy, not less. I'll do that for as long as I do the treatment. Boy, am I making up for it now though!

dhccpa profile image
dhccpa in reply toJohnInTheMiddle

Excellent ideas! And this isn't theory--you've actually done it.

Ian99 profile image
Ian99

Great advice from JohnintheMiddle. I have researched this topic and plan to use all points when time comes. A possible add is a cold hat to prevent hair loss. Afaik none of this is part of SOC in Uk.

I had chemo 10 years ago, did not know about any of these mitigating factors. To this day I have neuropathy equally in both feet.. a tingling sensation in the toes and balls of the feet, luckily balance is ok.

Good luck.

CrocodileShoes profile image
CrocodileShoes

You're right. When I asked about ice, they just laughed. But I'll bring my gloves and ask them to put them in the freezer!

spencoid2 profile image
spencoid2 in reply toCrocodileShoes

i found the ice packs to be a real pain. first they did not fit and i had to use thepacks and make my own gloves that worked but still a pain. the infusion room has a super cold freezer putting the packs in has to be done for just the right amount of time. if i left them in the morning and went back later they were - 500 degrees or so and had to be warmed up. next time if there is one i am going to use bags of ice i have extra strong mylar bags for long term food storage and they are just about the right size. pick up a bag of ice at costco for 2 dollars and there you go.

Mascouche profile image
Mascouche

For the fasting, my recollection of what I had read (from Walter Longo I think) is that it starts 3 days before the chemo and ends one day after the chemo for best results.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toMascouche

My fast was just 2 days in total (one day before and one day of). But I can see adding extra days for sure.

tango65 profile image
tango65

About chemo by a real expert, Dr. Tanya Dorff:

grandroundsinurology.com/dr...

Nous profile image
Nous in reply totango65

really valuable info tango65 ... thanks for sharing ... Nous 😀

westobutch123 profile image
westobutch123

Over a year ago stopped Docetaxel after 4 sessions mainly due to feet neuropathy. Hand neuropathy eventually disappeared but feet (especially balls of feet) have stayed exactly the same after more than a year. Obnoxious but not life altering. My numbers all good and stable.

Mascouche profile image
Mascouche in reply towestobutch123

I went through radiation but I got neuropathy issues in the feet as well. What helped me was a suggestion from a former member here, Nalakrats. In case it helps you to, here is what I began to take for that: Alpha-lipoic acid, NAC and Benfothiamine. It took about 4 weeks for the flares of pain to stop. To test whether it was the supplements that were helping me, I then stopped taking them and within 2 days the pain came back. So I went back on those supplements. Maybe I was lucky, maybe it was wishful thinking but I believe this has worked for me.

pakb profile image
pakb

My husband had docetaxel 6 years ago. He had sore thumbs as well. Sometimes he said he could feel it in the bed of his nails. Other days just soreness you described. He got more fatigued with each chemo session- and lost body hair- but worked out at the gym every day and ate well throughout. He was bever completely exhausted that he didnt feel like doing anything. He also worked full time throughout. His nails went back to feeling normal a few months after chemo ended.

spouse21 profile image
spouse21

My husband bought two sets of mitts and socks for icing. We brought them in a small cooler of ice from the gas station and just changed them out. Alas, he still got some neuropathy--also ten sessions, which isn't SOC. I don't think he got sore thumbs. He tried the fasting thing but felt much worse the one time he tried it. He tolerated chemo well and exercised like a demon on the off weeks. Hardest days for him were a 2-3 days days after infusions. Wish you luck and long stability from your chemo.

JohnInTheMiddle profile image
JohnInTheMiddle in reply tospouse21

I think very difficult is impossible if you are used to a regular diet with a lot of carbs. Then you might get crazy hungry. In my case we had been doing low carbs for some time.

London441 profile image
London441

Ice may help, it may not. I did it for my hands only as I’m a musician and it was the only area I was concerned about. I can’t know if it did anything but I had no neuropathy anywhere.

Like everything else, exercise is by far the most important metric for your success in avoiding side effects of all types, from all treatments. I have no actual data to provide when it comes to chemo, but if you exercise a lot you know what it does for you. You have evidence.

Can we suppose that better circulation, strength and healthy mitochondria help prevent neuropathy? I would place my bet there.

The best thing of course is that if icing during chemo doesn’t work, you get cold for a while. If exercise doesn’t work you get a kaleidoscope of other benefits 😀

CrocodileShoes profile image
CrocodileShoes in reply toLondon441

Great points. I'm also a musician, and wouldn't know what to do if I couldn't play the piano. So, I have the ice mitts, slippers (buying a portable freezer today, as I waited 2 hrs beofre I got the first infusion), plus the fasting, plus the gym work - this has become a full-time job!!

rsgdmd profile image
rsgdmd

I had the beginning signs of peripheral neuropathy about 2 weeks after my first infusion. Did the ice thing for all 6 rounds. My initial symptoms felt like my skin had thinned on my fingers. By round 3, I had more typical symptoms on hands and feet; lack of some feeling, no pain. It got only slightly worse over the rest of treatment. My doc recommended vit B6 100mg 3X/day. Within 6 mo. post chemo it was probably 75% better, but has returned with my current course of immunotherapy.

RoseDoc profile image
RoseDoc

What you describe isn’t neuropathy. As others have stated, I’ve helps. I had 6 treatments without any issues until just after # 4. Still have tingling in my fingers 3 months post chemo.

Curious as to why your MO wants you to have so many chemo treatments. Usual is 6. I did well until the 5th which knocked me on my butt.

j-o-h-n profile image
j-o-h-n

Neuropathy usually hits your feet..............in your case I guess those crocs are protecting you feet and chewing on your thumbs...........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/13/2023 6:30 PM DST

carguy profile image
carguy

Hi Croc,

I recently completed 10 cycles of Docetaxel. I did have similar jamming finger pain, except in my pinky fingers. It felt like my finger nails were in a vice. It happened maybe 5 times at the start of chemo, then went away. Not sure if it was neuropathy or not. After completing chemo in July, I started to get jabbing pains in the top of my left foot (at night, when sleeping) and numbness in the ball of my foot. Since the chemo is done, I’m thinking this is caused by the monthly Xgeva shot I continue to get to strengthen bones (started this med in January). The side effects are tingling in arms and legs.

P.S. I iced my hands and feet during each infusion which I believe help prevent some neuropathy.

CrocodileShoes profile image
CrocodileShoes

Thanks so much for all the comments. This forum is a life-saver.

Literally.

dmt1121 profile image
dmt1121

For me neuropathy did not occur until many months after treatment.

CrocodileShoes profile image
CrocodileShoes in reply todmt1121

Wow, that doesn't seem to be common. Did you ice your hands and feet?

dmt1121 profile image
dmt1121

No. My neuropathy was primarily at night when I would go to bed. It started in my legs and would then be throughout my body. It was intermittent.

My peroneal nerve was then damaged from SRBT to my left leg and two years later, I had severe neuropathic shooting pain and foot drop. I was prescribed Lyrica which helped some. I did a trial for a nerve stimulation implant and that didn't really work.

Now, when I have found that cannibis gummies help the most. I had a three month reprieve using them for a week straight. Now the pain has largely subsided, though I get extreme cramping and severe nerve pain if I do physical work for any long period of time.

That's all I can tell you aboutmy experience.

Good luck.

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