How I Managed (and STOPPED) My Neuropathy
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- Опубликовано: 4 окт 2024
- 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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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
I'm so sorry for your loss.
im sorry about youre loss ryan ,🙏🏼 i lost my dad to linfatic cancer at 53 , im 42 now and having lot of health challenges
thanks jelena 🙏🏼
💙💙💙💙💙💙
Ryan, I’m so sorry about the illness and death of your wife. I can’t imagine losing my life partner.
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.
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!
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.
Hi Jelena. So glad to see you're looking well. I really admire your bravery and feel inspiration and positive vibes when you explain about life after cancer. So happy you came out of it. I love ❤️ your magenta hair. It's beautiful colour and it suits you. Lovely video. I just had my completion total proctocolectomy with Barbie Butt Surgery recently. On the road to recovery now. Thanks. Rajeev.
Hope your recovery is still going well! Good to hear from you! 💙
Hi Jelena. Thanks very much for your kind wishes. Today (21.09.24) is my first year of my total completion proctocolectomy (with Barbie Butt) and resection of small intestine surgery. As a matter of fact, as I type, at this time last year, I as under general anaesthesia under the care of the st marks team. It was a 9 and a half hours surgery. My butt is nicely sealed. The doctor had a look and she said that its just a half a nail size gap that will close itself naturally. that's what causes slight leaking. my stoma is the one that occupies my time. recently i had my baseplate re-sized as the lower side was cutting the skin and making contact with my stoma, causing pain and bleeding Dansac adopt powder was applied by the nurse and she gave me a stoma ostomy belt. i am so thankful to them got lookng after me. now, yesterday i got e-mix but it says for Livestock so i contacted my ibd dietician nurse to ask is it safe, as it was ordered from her link and in the pets department.. I will keep you updated of my progress. overall, i go for regular walks and focus on healthy eaiting (my stoma nurse gave me some print outs of stoma care and the correct diet) and also i bathe regularly and need to wear flexible pants that are high waist. I find your videos and story very helpful to me. thank you so much fo being my friend. i really love your hair and the funky colors. they really suit make you even more attractive. thanks again, Jelena. Will keep you posted. hope you are keeping well. please take good careof yourself, from one ostomite to another. all the best, (sorry my message is so long.!)Rajeev.
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
Well done and good luck 👍
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👍👍
Thanks! I hope you find some relief.
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.
Thank you for sharing this. May you have a speedy recovery. I look forward to your updates. My husband is on this.
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.
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.
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.
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.
I’ve never heard of that medication before. That’s great it seems to be helping you!
@jillherring8708 hi.may i ask if it helped you gone yours.thanks
Hi is this works
Thank you for posting your videos! I just started chemo last week and I am experiencing most of these symptoms.
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.
You live in Colorado and you know what being in a boat feels like? Wow. I am impressed!!
Btw, your vids are absolutely first rate. Here’s to your continued good health!!
Thanks so much! And Colorado has water - I’ve gone white water rafting here!
Thanks for your tips. I use Cymbalta which is an anti-depressant so I needed that but it definitely helped my feet neuropathy. 😘❤️🇨🇦
Interesting to know!
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
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.
Thank you for this video. It was very informative.God bless you.
You have gave me so much motivation. Miracle I found you!!!!! Thank you so much.
Happy to help! Thank you for watching 💙
My oncology team recommended B vitamins, specifically B6 but all can help. Also icing your hands and feet during Oxaliplatin can help a lot too. I never got neuropathy from Oxaliplatin as I think the icing really helped. However for the last three months I’ve just been on 5FU and have got it in my hands and feet. This drug isn’t meant to cause neuropathy but I definitely have significant symptoms.
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 .
Exaxt same thing happened to me. Very little during chemo, as soon as I was done it all came at full force.
Hi Jelena, Another very helpful, informative and enjoyable video. Thanks very much indeed.
My pleasure!
Sander. The vibration from a electric sander helped my hands a bunch
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.
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 ...
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: ruclips.net/video/h21A49gbryw/видео.html
@@SurvivorJelena thanks my sister .... I hope you are fine and in the best situation ....
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
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.
I hope you get better Tara, I stared to feel the mild symptoms
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 !
hi tara, how you been? i hope well keep taking R alpha lipoic acid and b vitamans seems to work well 🙏🏼
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.
thanks tara
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
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.
@@SurvivorJelena Oh Dear God...
If I have to live with this for another year. 1 year in Nov. I'll never do chemo again!!!
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 🤞🏼🤞🏼
I've been outside gardening barefoot a lot I feel like it helps
I’ve never heard of that…I may have to try it 😀
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.
I’m so sorry for your loss.
@@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!
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.
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
vitamin b complex helped the most for me but not completely.
Thank you for everything! My husband has this from his chemo and he hates it
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?
Cute kitty!
It’s been 4 years and mine has never gone away 😟 rectal cancer survivor
Ugh, that stinks. I’m so sorry.
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.
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!
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
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.
That sucks you’re still dealing with neuropathy 5 years later. I hope your colonoscopy went well!
@@SurvivorJelena Thank you! The Clenpiq worked great and I can wait 5 more years. I think it helped that I also had Zofran!
That’s great to hear! 🥳
Hi Jelena
Hi Ed!
Have you ever tried ice bath or cold plunge? Or epsom salt bath? Cold therapy helps with nerve pain.
🥶🥶🥶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.
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
Oh no, that sucks. Will you be doing the same chemo?
@@SurvivorJelena yes. I will be doing the same chemo
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
How did the PET scan go?
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.
Does the neuropathy ever go away by itself after time or partially disappear?
I was just diagnosed 3 weeks ago. As an IT tech im scared to death how this is going to effect my hands..
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.
🙏🙏🙏
B12 alphoi acid
Hi again Jelena, what is the name of that machine you got at Target?
It’s a hand-held massager. This is the one I got: www.target.com/p/wahl-hot-cold-therapy-massager/-/A-14041863
You forgot THE INFRA-RED LAMP works like miracle for pains and neuropathy!
I’ve never heard of anyone using a lamp for neuropathy. How do you use it?
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?
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.
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.
Oh no, I’m so sorry, Ed. Are they going to have you come in for scans?
@@SurvivorJelena Yes, I’m leaving the beach Monday to go back home for a PET scan. It’s a bit disappointing.
♥️
7
Orale!
Would massaging them mouthwatering feet help any 👣😋
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.
That sounds pretty miserable, I’m sorry you’re dealing with that. I hope the bump in meds gives you some relief.
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
@@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!!!
@@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