How I Managed (and STOPPED) My Neuropathy

Рет қаралды 11,519

2 жыл бұрын

Chemo-induced peripheral neuropathy is a side effect that many cancer patients deal with, especially those diagnosed with colorectal cancer that go through multiple rounds of the chemotherapy FOLFOX. Hi, that would be me! 🤚🏼
Find out what I did to help alleviate my neuropathy symptoms and maybe even got it to go away sooner.
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Пікірлер: 113

@deplorable_dave Ай бұрын

Jelena, my stage 3 colon cancer diagnosis last summer and the treatment & surgery progression that followed mirrored your experience closely (although I was older when I got my diagnosis - 59). If went through 30 rounds of radiation and then 9 cycles of FOLFOX chemo before finally having a successful laparoscopic tumor resection 3 weeks ago. As of now, there's no sign of cancer in my body, woo hoo! As thankful as I am for having a good outcome, I am struggling with chemo-induced neuropathy of hands & feet that started getting really noticeable after round 7 of my chemo treatment. My feet have the sensation of being caked with wet sand anytime I walk, and my fingers are numb, tingly and usually very cold. It is difficult to button shirts or do anything requiring dexterity of my fingers. Very disappointed to hear that you were still dealing with your neuropathy a full year after your surgery. Curious, are you still dealing with neuropathy NOW, or did it finally go away? I'm finding my own neuropathy to be getting worse - none of the standard treatment recommendations (exercise, massage, etc) have worked. When I told my oncologist about it, he said it could take months or even years to recover from neuropathy, or it may even be permanent. Ugh.

@chokmahyahvlogs Жыл бұрын

Thank you for sharing this. May you have a speedy recovery. I look forward to your updates. My husband is on this.

@UpNoutDM 2 жыл бұрын

You have gave me so much motivation. Miracle I found you!!!!! Thank you so much.

@SurvivorJelena 2 жыл бұрын

Happy to help! Thank you for watching 💙

@liranoronha9257 Ай бұрын

Thank you for this video. It was very informative.God bless you.

@silverphoenix1418 2 жыл бұрын

Hi Jelena, Another very helpful, informative and enjoyable video. Thanks very much indeed.

@SurvivorJelena 2 жыл бұрын

My pleasure!

@ryanbohling1558 2 жыл бұрын

You are a blessing in the sky and thank you for bringing awareness to one of the most challenging diseases on earth my wife at 42 years old was diagnosed with colorectal and metastatic liver cancer on January 31, 2021 and then she passed away on January 29 of 2022 it was a full year of living in and out of the hospital… my God help us find a cure for cancer

@SurvivorJelena 2 жыл бұрын

I'm so sorry for your loss.

@stanislavbayer696 Жыл бұрын

im sorry about youre loss ryan ,🙏🏼 i lost my dad to linfatic cancer at 53 , im 42 now and having lot of health challenges

@stanislavbayer696 Жыл бұрын

thanks jelena 🙏🏼

@brandonshaw7619 Жыл бұрын

💙💙💙💙💙💙

@KaraLey98 8 ай бұрын

Ryan, I’m so sorry about the illness and death of your wife. I can’t imagine losing my life partner.

@kristicrawford5729 Жыл бұрын

Love your videos. I got neuropathy in my hands and feet after chemo. I am 1 year from my last chemo dose. My hands are completely better. My feet are still recovering. I had pain, large blisters, and peeling in my feet. Today I have some pain in my toes and balls of my feet. Some of the things I tried: comfy shoes, walks until my feet felt on fire, a slanted foot massage platform--still use this, acupuncture, lotion, foot baths with epsom salts. Most of these helped. I will say that exercise is what helped the most. Thanks for telling your story!

@SurvivorJelena Жыл бұрын

I’m glad to hear your hands are doing better! I should try doing epsom salt foot baths again to help with the recovery from my broken ankle.

@boostcreep4749 8 ай бұрын

Thank you for posting your videos! I just started chemo last week and I am experiencing most of these symptoms.

@SurvivorJelena 8 ай бұрын

Good luck to you. Make sure to keep your oncologist posted on how long the symptoms are lasting and how severe they are to minimize long term side effects.

@heatherann502 2 жыл бұрын

Thanks for your videos you saved my life I diagnosed my stage 3C cancer after watching your videos I got a colonoscopy and just to the point of ileostomy now... definitely got neuropathy

@fraseredk7433 7 ай бұрын

Well done and good luck 👍

@nollaigire2367 2 жыл бұрын

Thanks for making this vdo Jelena, all your videos contain unequalled accurate information on CRC in my opinion & you have helped many people including me, this vdo really helps shine light on this issue which is pretty much ignored by oncologists worldwide & almost everyone gets Neurology symptoms from exposure to oxiplatin (depending on dosages etc) amitriptyline relieves discomfort caused by Neurology. Physical Therapy does help me a lot, Neurology takes years rather than months to resolve.

@SurvivorJelena 2 жыл бұрын

You’re welcome, and happy to help! I’m glad you’re getting some relief. You’re so right, it usually is more like years that it takes to get neuropathy relief. Nerves don’t repair quickly.

@teacherfaq918 Жыл бұрын

Hi,it was really a great video. It helped me to understand my symptoms. I am going through chemo. I had 4 rounds of doxorubicin i was fine, tolerated the pain. But when i got my first round of Taxol i had hell of a pain in my feet as if someone is breaking my bones. Now i just have numb feeling in my feet. I am glad i came through your video now i can work on with my neuropathy symptoms. Cheers to you👍👍

@SurvivorJelena Жыл бұрын

Thanks! I hope you find some relief.

@NitaM1272 2 жыл бұрын

I spoke with you about this months ago saying I wasn’t affected by this finished infused chemo a little over a month ago it came on like crazy burning sensations in feet and fingertips thanks for your great videos .

@sofiaberg5057 4 ай бұрын

Exaxt same thing happened to me. Very little during chemo, as soon as I was done it all came at full force.

@stanislavbayer696 Жыл бұрын

thanks tara

@sofiaberg5057 4 ай бұрын

Thank you for this video! I had folfox, 12 rounds last year. My last treatment was at the end of October. I had almost non of the tingling side effects (unless i was in the cold or held something cold). Then the very next day after chemo, it all came 10x worse. It went all the way up my legs at night so i could barely sleep. Thank goodness its milder now and just feels a bit on my fingertips and feet.

@robinblankenship9234 7 ай бұрын

You live in Colorado and you know what being in a boat feels like? Wow. I am impressed!!

@robinblankenship9234 7 ай бұрын

Btw, your vids are absolutely first rate. Here’s to your continued good health!!

@SurvivorJelena 7 ай бұрын

Thanks so much! And Colorado has water - I’ve gone white water rafting here!

@babygomes06 Жыл бұрын

Thanks for the video. I've completed 12 rounds of Folfoxiri stage 4 colon cancer and I'm just dealing with tingling in my hands the most and a little in my toes

@SurvivorJelena Жыл бұрын

You’re welcome. I’ve heard from more and more people lately that have the tingling worse in their hands than in their feet. It’s interesting how we all react a little differently.

@CigsAce21 6 ай бұрын

A nuerologist told me to take a B-complex. This seemed to help me SLOWLY get better. I've also tried accupuncture (w/electical stimulus) but felt its benefits were very minimal. Thanks for the video.

@jillherring8708 6 ай бұрын

Hi Jelena I wanted to add that my doctor prescribed me amitriptyline which is a drug that helps repair nerve damage. I am trying it now and it seems to be helping. I won't be on it long term it's just for a few months. Thank you Jelena for all the work you do in helping others with cancer.

@SurvivorJelena 6 ай бұрын

I’ve never heard of that medication before. That’s great it seems to be helping you!

@marlenemacapagal1739 5 ай бұрын

@jillherring8708 hi.may i ask if it helped you gone yours.thanks

@marlenemacapagal1739 5 ай бұрын

Hi is this works

@bettylee2004 2 жыл бұрын

Hi Jelena 👋 you look awesome. I love your video on the tingling and numbness. I'm dealing with that right now. Anymore information with dealing with it, I would love to know about it. Talk to you soon and much love to you and your family

@SurvivorJelena 2 жыл бұрын

Aw, thank you. I tried to put everything I know and experienced in the video. It took 2 years for it to go away, so patience is definitely needed.

@dickelshabsrule Жыл бұрын

@@SurvivorJelena Oh Dear God... If I have to live with this for another year. 1 year in Nov. I'll never do chemo again!!!

@SurvivorJelena Жыл бұрын

It got better and better over those 2 years, so hopefully you’ll start feeling the pain lessen bit by bit over the next few months 🤞🏼🤞🏼

@davedominguez688 10 ай бұрын

Sander. The vibration from a electric sander helped my hands a bunch

@Fight4aCure 11 ай бұрын

My oncologist and doctors said to take vitamin B Complex once per day. I started a month ago and so far haven't felt any huge difference. I will continue to take it for the next couple months to see if it helps.

@canalblvd 3 ай бұрын

Hi Jelena. So how is your neuropathy now? Slowly getting better? I had 5 1/2 weeks of radiation/chemo (starting 6/15/23) then did 8 cycles of the FOLFOX. Stage 2 rectal neoplasm. I skipped the last cycle because starting with 6th cycle my neuropathy stopped going away. Last dose of Oxaliplatin was Dec 7th, and it has gradually gotten worse, mainly the feet. Acupuncture didn't help for me but seems to for others. I'm doing everything recommended but have yet to see an improvement, yet. At this point just hoping it doesn't get worse and slowly gets better. After my follow-up colonoscopy and MRI/CT scan, the results were "Complete or near total complete response", meaning no surgery needed. A week or so later the oncologist called me and said they had a panel meeting with 7 surgeons and 2 of the 7 recommended surgery. Of course I obviously agreed with the 5 to wait for next colonoscopy and scans, to see if there's anything left that needs to be removed. Why would I opt for a complicated surgery which would require an ostomy bag hopefully only temporary but could be forever, when there's the possibility no surgery needed. But there's still the possibility after next scans and scope they may say it's needed... then it may be time for 2nd opinion. --- Alex

@Podus81 9 ай бұрын

Cute kitty!

@ahmadalmahdi 2 жыл бұрын

I cannot say how much you helped me .. i finished my chemo 8 dosages .. I will make illeostomy reverse by the end of june .. I want to know exactly the stages of that food going out will be normal .. after 2 weeks .. one month .. 6 months .. please i need your answer .. to manage my returning back to work .. May God be beside us forever and not that disease come back ...

@SurvivorJelena 2 жыл бұрын

Congrats on finishing your 8 rounds of chemo🥳. Everyone's recovery from reversal surgery is different. Talk with your surgeon to see if they have any diet recommendations for the first few weeks after surgery. I did do a video on what my diet was like and you can watch that here: kzfaq.info/get/bejne/nphhdJdqzMjWqas.html

@ahmadalmahdi 2 жыл бұрын

@@SurvivorJelena thanks my sister .... I hope you are fine and in the best situation ....

@taralechner462 2 жыл бұрын

I had another patient tell me to try B6 vitamins and L glutamine supplements. So I’m trying that now and I can keep you updated as to my status but currently the neuropathy is in my hands only. It’s so bad that my fingernails feel like they’re just being ripped off at times. I am taking a medication as well but nothing is working at this moment. I stopped the Oxaplantin after dose number seven of 12. It’s progressively gotten worse since number seven which was approximately 11 weeks ago from today May 14, 2022. He also said to add red ginkgo but since it’s a blood thinner I thought I would wait a few more weeks being that I just had my last treatment seven days ago. More to follow thank you for your amazing videos

@SurvivorJelena 2 жыл бұрын

Ouch! I forgot that I took L glutamine for a bit to try and help my digestion post-ileostomy reversal. It didn’t help for that for me, I’d love to hear if that and the B6 help you.

@stanislavbayer696 Жыл бұрын

I hope you get better Tara, I stared to feel the mild symptoms

@nollaigire2367 Жыл бұрын

Tara, try alpha lipoic acid every day, it takes about 5 weeks to get into your "system" also try using compression gloves especially at evening times, I've been able to cut out pain meds because of wearing compression gloves, I learned this from Jelenas videos as she used compression socks for her feet so I thought why not use compression gloves, they really help a lot !

@stanislavbayer696 Жыл бұрын

hi tara, how you been? i hope well keep taking R alpha lipoic acid and b vitamans seems to work well 🙏🏼

@jlb0602 Жыл бұрын

My oncologist recommended B-complex and ALA. The nurse practitioner had recommended B6 and ALA. I had 9 rounds of Oxy and mostly just the cold sensitivity in my hands during treatment, but the last couple of treatments, and afterwards!, my feet kicked in and I am suffering with neuropathy in my feet. Such a weird feeling... like I have 6 layers of socks on all the time. I got the B-complex, but not yet the ALA. Am hoping they will help heal the nerves.

@roch145 2 жыл бұрын

Hi Jelena When you say it took two years to recover from the neuropathy- is the 2 years from your first symptoms or after chemo was finished? Are all of your symptoms gone? Seems like acupuncture didn’t do much to improve your symptoms. Is that accurate?

@SurvivorJelena 2 жыл бұрын

2 years from when chemo finished. It was gradual, so it wasn't like it was horrible one day then disappeared the next. I feel like the acupuncture helped some, but it's hard to say what worked the best to get rid of the symptoms.

@bettylee2004 2 жыл бұрын

Hi again Jelena, what is the name of that machine you got at Target?

@SurvivorJelena 2 жыл бұрын

It’s a hand-held massager. This is the one I got: www.target.com/p/wahl-hot-cold-therapy-massager/-/A-14041863

@hollyyoung649 6 ай бұрын

Ugh...i didn't have any until it was over ... It feels like I've been stung by about five bees in my toes. I've been done with chemo for two years and all three medications I've tried have done nothing

@MaryleaMemaw Жыл бұрын

I have neuropathy from chemo but mine was Taxol for breast cancer. I'm over 5 years out and it never got better. I do wear compression socks when on extended car/plane travel but I may try wearing them more often. I was on lower dose gabapentin for years for a back problem but it didn't help the neuropathy and I was too scared to take large doses so I just deal with it. I just watched your colonoscopy video because I am having one Tuesday. I didn't tolerate the Miralax/gatorade on a previous colonoscopy so hope I can tolerate the Clenpiq this time. I'm definitely not a "volume" drinker.

@SurvivorJelena Жыл бұрын

That sucks you’re still dealing with neuropathy 5 years later. I hope your colonoscopy went well!

@MaryleaMemaw Жыл бұрын

@@SurvivorJelena Thank you! The Clenpiq worked great and I can wait 5 more years. I think it helped that I also had Zofran!

@SurvivorJelena Жыл бұрын

That’s great to hear! 🥳

@KaraLey98 8 ай бұрын

Does the neuropathy ever go away by itself after time or partially disappear?

@heatherann502 2 жыл бұрын

I've been outside gardening barefoot a lot I feel like it helps

@SurvivorJelena 2 жыл бұрын

I’ve never heard of that…I may have to try it 😀

@janovewaldner1 2 жыл бұрын

My dad RIP who was at stage 4 colon cancer, was on Folfox also. I remember his biggest complain was that his tongue will tingle when he got food into his mouth. He said that he felt like eating sand. So he had to choose to eat soft foods so it won't pressure his tongue too much time while chewing. Not to mention that also due to chemo, sores appeared in this mouth. It was very sad because eating was the last pleasant thing he got left and during the hell of chemo, he didn't even get that.

@SurvivorJelena 2 жыл бұрын

I’m so sorry for your loss.

@janovewaldner1 2 жыл бұрын

@@SurvivorJelena Thank you. I'm not that sad when I think that he lived a long life, 77 years old. I'm more concerned with young people with the disease, like you, or me in case I got it in the near future. Keep up your good work!

@dickelshabsrule Жыл бұрын

Hi Jan, I am Sorry for your loss. I to had a problem with my tongue. It was the 1st side effect I experienced. Bread felt like sand paper. I never got mouth sores do to rinsing my mouth out with salt water 4 or 5 times a day. I hope this helps You.

@dickelshabsrule Жыл бұрын

Love Your Sharing, My CIPN only went from bad to worse after 12 treatments of FOLFOX. 3 months after my last treatment I went to grab a stick out of my bird feeder, oww thought I cut my finger, looked at it, no cut, no blood and thats how all my fingers felt til after starting 2400mgs of gabapentin a day and 2mgs of hydromorphone used at my discretion, like when I just cant take the pain any more. My feet are worse, pain comes and goes in my arch that stops Me in my tracks. knife cuttings across the top and bottom of my feet, toe's some times feel like they're in a vise, new location of pains all the time, top and bottom of my feet. Cant walk any where's in bare feet so if ya see some guy walking around in sandals with socks on it's Me, lol. Tomorrow I see my Onc since starting the new Meds a month ago. I'm asking her to bump up the gabapentin to 4500mgs a day as my older brother is taking 8400mgs a day for his neurotrophy. I'll get back to you in a month to let your viewers know how it goes.

@SurvivorJelena Жыл бұрын

That sounds pretty miserable, I’m sorry you’re dealing with that. I hope the bump in meds gives you some relief.

@nollaigire2367 Жыл бұрын

There is a condition called hand and feet caused by folfox chemotherapy did you discuss this with your oncologist, also do try taking alpha lipoic acid everyday it really does work, it takes about 5 weeks to get "into" your system, also try using compression gloves & socks I've learned this from Jelena and the compression gloves really helped a lot, try to reduce your pharmaceutical intake if you can in the long term it will help you

@dickelshabsrule Жыл бұрын

@@nollaigire2367 Hi Nollaig, Pills pills and more pills. Im up to 4200mgs of Gaba now, 7 a day, for the past month. Doing it another month now and its not helping. I still have a few dilaudids left. I take them extremely sparingly. My oncologist and palliative care Dr have been treating Me for this since last November while I was still doing my chemo, so it's good to hear from people like Me dealing with this, (not that I want anyone to deal with this) giving Me other possible solutions. You nailed it, *&^%$ Folfox. How did you know? The last time I saw my Onc, I told her that if she suggested I soak my feet and hands in cat urine, I'd do it to take this pain away. I'm at "that" Point where I'd do anything to take it away. Then I told her that I've been eyeing up my trimming shears for the past 3 weeks. I might be cutting off the end of one of my fingers, let it die, then re-attach it to see if that works. I'm not joking!!! I'm don't don't 3rd question. What are the side effects? Everyone is different. No mention of pain whats so ever. This is where I swear a lot. I'm going to take yours and Jelena's advice and try those things, cant hurt. Thank You, it's greatly appreciated!!!! Be back in 5-6 weeks with an update. EMG test in Nov. hmmm my anniversary for the pain, wonderful. I shouldnt have to live with this shit for a year!!!!! Richard aka Dickels, Go Habs!!!

@nollaigire2367 Жыл бұрын

@@dickelshabsrule hello, try to "not" "use" your hands as much as before your treatment started, also avoid cold water and touching metal surfaces ie "metal cutlery" there is a video on gentle massage for hand neuropathy on you tube it's also very good indeed, other information I found states that folfox related hand neuropathy takes a minimum of 18months to 5+ years to resolve if ever, however I do recommend seeing a PhD neurologist if you can, whilst oncologists specialise in chemotherapy they lack comprehensive knowledge on Neuropathy, unfortunately there is no quick turnaround on healing of damaged nerve tissue, I try physical therapy, acupuncture,gentle exercise,alpha lipoic acid & compression gloves (particularly at night) I would recommend amitriptyline if you can consider reducing your overall pharmaceutical intake, also I wouldn't recommend walking barefoot on any surface unless its a warm sandy beach somewhere, for me i have found that Jelena's videos contain the most accurate information on CRC

@exene2881 11 ай бұрын

Thank you for everything! My husband has this from his chemo and he hates it

@KaraLey98 8 ай бұрын

Oh my GOSH!! You went for acupuncture every other week for a year? That must’ve cost a pretty penny and couldn’t have been covered by insurance, was it?

@richardjaffe4736 Жыл бұрын

vitamin b complex helped the most for me but not completely.

@Jamali31748 Жыл бұрын

Have you ever tried ice bath or cold plunge? Or epsom salt bath? Cold therapy helps with nerve pain.

@SurvivorJelena Жыл бұрын

🥶🥶🥶I’d consider an epsom salt bath, but my feet seize up if they dip in cold water so I’d rather not do ice baths.

@greenwald007 Жыл бұрын

I was just diagnosed 3 weeks ago. As an IT tech im scared to death how this is going to effect my hands..

@SurvivorJelena Жыл бұрын

As soon as you start feeling any neuropathy symptoms talk to your oncologist about it. They can dial down the oxaliplatin, which is the drug that causes the neuropathy.

@ASH-T786 10 ай бұрын

🙏🙏🙏

@edgrabousky9995 2 жыл бұрын

Hi Jelena

@SurvivorJelena 2 жыл бұрын

Hi Ed!

@ronalddavis7711 Жыл бұрын

B12 alphoi acid

@brandonshaw7619 2 жыл бұрын

Nice info! I have mild neuropathy. I had 18 rounds folfox5 I'm about to have my first PET scan I've been injected with the isotope waiting for the scam

@SurvivorJelena 2 жыл бұрын

How did the PET scan go?

@brandonshaw7619 2 жыл бұрын

Heeey thx for asking!! I'm afraid it wasn't good the news wasn't terrible news but I have the swollen lymph nodes in my pelvic region that showed metabolic activity if this is cancer then it means that the chemo that I'm getting is not working my oncologist is sending me back to my surgeon most likely small procedure to get some biopsies I find out everything this coming up Friday on whenever I'm having to biopsy so it'll probably be July because they have stopped chemo and I'm having to wait for the chemo to again stop doing what it does to the body so I can have the procedure This also could just be swelling and inflammation my doctor is leaning more towards that because this chemo is targeted and if this is cancer then that means that this chemo that is not supposed to allow cell growth for cancer cells I have cancer still growing so that means that I'm done as far as I can go with the cancer center that I'm going to now then I'm going to have to go to MD Anderson I do not know beyond thus at this time.

@sankapi3 Жыл бұрын

It’s been 4 years and mine has never gone away 😟 rectal cancer survivor

@SurvivorJelena Жыл бұрын

Ugh, that stinks. I’m so sorry.

@livjunqueira1131 2 жыл бұрын

♥️

@edgrabousky9995 2 жыл бұрын

Hi Jelena, I haven’t found the right program yet for my neuropathy. And I just had a call from my doctors office. My CEA levels are elevating. This doesn’t sound good.

@SurvivorJelena 2 жыл бұрын

Oh no, I’m so sorry, Ed. Are they going to have you come in for scans?

@edgrabousky9995 2 жыл бұрын

@@SurvivorJelena Yes, I’m leaving the beach Monday to go back home for a PET scan. It’s a bit disappointing.

@terryrestoule2684 Жыл бұрын

I had stage 3 rectal cancer in 2020. I had capox as my chemo therapy. During the time of the infusions, I had severe neuropathy in my hands (not much in my feet). Thankfully, the neuropathy ended with my chemo. During chemo, I found that the only way to control my neuropathy was to keep my hands warm. The best way that I found to do that was to wear vinyl gloves. I would put them on and the pain would go away completely in about 30 minutes. They also gave me full fingertip use. I was even able to play the mandolin while wearing them. Hope that this is useful.

@SurvivorJelena Жыл бұрын

Interesting! I’ve heard of icing, but never of keeping the hands warm to keep the neuropathy away. I’m glad it worked for you!

@anamjaved5532 10 ай бұрын

@onlyhereonce7290 2 жыл бұрын

When I was first diagnosed with colorectal cancer I didn't know anything about Neuropathy. I was just noticing that my neuropathy was going away after 6 months of not having chemotherapy. Then I was diagnosed with nodules in my peritoneum. So, cancer is back. And I'm back on the chemo train. ugh

@SurvivorJelena 2 жыл бұрын

Oh no, that sucks. Will you be doing the same chemo?

@onlyhereonce7290 2 жыл бұрын

@@SurvivorJelena yes. I will be doing the same chemo