Thanks for the info. Not sure where Xeloda fits in, but hope it's more mild than the IV drugs. I can't believe only 46 people like this; it's very helpful.
I have CIPN. I did have some numbing and tingling throughout but confused it with my fibromyalgia. In which, it possibly could have been. My last chemotherapy was on 7/6/22 and I didn't start waking up with severe burning in my hands til the end of September this year. The pain was and is horrendous. I have not slept well in quite some time. I am on pain medication due to chronic autoimmune diseases diagnosed years prior to my cancer journey. I was told because my chemotherapy had ended to see my pain doctor which wasn't due to switch back to till mid October. Although, I am still in immunotherapy (Keytruda) till January. It was disheartening to fill left to my own devices and told to go to the emergency room. Through research I have found some neurologists find Alpa Lipoic Acid to be helpful. I am trying the supplement tonight at a low 200mg as I have been left to help my own suffering. The emergency room was kind but referred me to Lyrica which I know from past use the side effects are unsettling to me personally. My question would be have you found success with the supplement I mentioned? Also, sometimes I get swelling in my fingers while pain is high is that common with CIPN? Thank you for your video. It was to the point, well organized, with obvious mention of care for the patients which is a big deal I know to many people. Thank you for your research and honestly it is a devine talent to speak to an audience without medical training and make them feel they were with you every step of the way. Hats off and well done!
I’m 12 years out of chemo and my peripheral poly neuropathy is driving me out of my mind!!! I’m on so much medication and nothing helps anymore I nearly want to just end it. I was on 2 platin based chemotherapy which was Cisplatin and the 5 -FU and now it’s a non stop buzzing and burning and vibrating electrical fire storm in my legs feet and hands. I’m in pain meds, Cymbalta and as much gabapentin that my neurologist can give me. I sleep with feet hanging off my bed because they burn so bad! I have zero quality of life anymore. I just want it to end!!!
Why are there doctors refusing to acknowledge the long term side effects to chemo such as what you are discussing here. I was given 6 injections of what I was told was “hormone” therapy to “treat” my endometriosis but it wasn’t until a few years later when my body began crumbling I did my research on what Lupron really is and it turns out it’s a type of chemo and not one doctor will help me get treatment for my chronic bone or nerve pain.
Every video on neuropathy suggests exercise, but how the heck can you exercise when it feels like pins and needles being driven into your feet with every step? I can barely walk my dog up and down my street before the numbness and discomfort becomes unbearable. My neuropathy didn't really bother me until after my chemo treatments finished. It's been 4+ months since my last chemo treatment and no improvement yet. I can see how people who end up with permanent neuropathy are driven crazy by it. My cancer prognosis is good after all my treatments & surgery, but it sucks that I can barely walk :(
This concerns me since I'm about to start Cisplatin one day a week for 7 weeks alongside 35 radiation hits for oropharyngeal cancer. Why would onocologists not clearly explain the risk of this condition if they know it is likely to occur in most people?
i have such hard time with fatigue and weakness and even one wrinkle in thin shit or clothes drives me crazy, along with hot cold and sweating sensitivity is off chain. My family doc been looking for reason why. I think these cancer doctors HIDE what can happen. I have told mine and always acts dumb or like they know. going to hit these docs hard core now i seen this. i had some and it went away but then AFTER i ha. d finished it slowly started and has not stopped yet, and its been 7 months. and I did not have that much chemo/ra. These kind of things is why I STOPPED. It was killing me fast. my heart enzymes went high which is why so many die of heart issue after cancer.. or during. I stopped and enzymes went back to normal along with blood work, but the fatigue, weakness, sleepiness, sensitivity stayed... ALL these docs seem to think of it MORE DRUGS it seems. it hides symptoms but does more damage. later too. grrrr gab-a-pen-tin LMAO
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Fasting helps my neuropathy.
Keto diet and cryotherapy.
Great video!
My gratitude 🙏
Thanks for the info. Not sure where Xeloda fits in, but hope it's more mild than the IV drugs. I can't believe only 46 people like this; it's very helpful.
I have CIPN. I did have some numbing and tingling throughout but confused it with my fibromyalgia. In which, it possibly could have been. My last chemotherapy was on 7/6/22 and I didn't start waking up with severe burning in my hands til the end of September this year. The pain was and is horrendous. I have not slept well in quite some time. I am on pain medication due to chronic autoimmune diseases diagnosed years prior to my cancer journey. I was told because my chemotherapy had ended to see my pain doctor which wasn't due to switch back to till mid October. Although, I am still in immunotherapy (Keytruda) till January. It was disheartening to fill left to my own devices and told to go to the emergency room.
Through research I have found some neurologists find Alpa Lipoic Acid to be helpful. I am trying the supplement tonight at a low 200mg as I have been left to help my own suffering. The emergency room was kind but referred me to Lyrica which I know from past use the side effects are unsettling to me personally.
My question would be have you found success with the supplement I mentioned? Also, sometimes I get swelling in my fingers while pain is high is that common with CIPN?
Thank you for your video. It was to the point, well organized, with obvious mention of care for the patients which is a big deal I know to many people. Thank you for your research and honestly it is a devine talent to speak to an audience without medical training and make them feel they were with you every step of the way. Hats off and well done!
I’m 12 years out of chemo and my peripheral poly neuropathy is driving me out of my mind!!! I’m on so much medication and nothing helps anymore I nearly want to just end it. I was on 2 platin based chemotherapy which was Cisplatin and the 5 -FU and now it’s a non stop buzzing and burning and vibrating electrical fire storm in my legs feet and hands. I’m in pain meds, Cymbalta and as much gabapentin that my neurologist can give me. I sleep with feet hanging off my bed because they burn so bad! I have zero quality of life anymore. I just want it to end!!!
Why are there doctors refusing to acknowledge the long term side effects to chemo such as what you are discussing here. I was given 6 injections of what I was told was “hormone” therapy to “treat” my endometriosis but it wasn’t until a few years later when my body began crumbling I did my research on what Lupron really is and it turns out it’s a type of chemo and not one doctor will help me get treatment for my chronic bone or nerve pain.
They didn’t tell you it was chemotherapy??? Chemo is poison
is chemotherapy induced neuropathy the same as other drug induced peripheral neuropathy?? (Like SSRI / Antibiotic induced) please let me know ty
Every video on neuropathy suggests exercise, but how the heck can you exercise when it feels like pins and needles being driven into your feet with every step? I can barely walk my dog up and down my street before the numbness and discomfort becomes unbearable. My neuropathy didn't really bother me until after my chemo treatments finished. It's been 4+ months since my last chemo treatment and no improvement yet. I can see how people who end up with permanent neuropathy are driven crazy by it. My cancer prognosis is good after all my treatments & surgery, but it sucks that I can barely walk :(
This concerns me since I'm about to start Cisplatin one day a week for 7 weeks alongside 35 radiation hits for oropharyngeal cancer. Why would onocologists not clearly explain the risk of this condition if they know it is likely to occur in most people?
I'm going on year 3 after treatment and still no change. Only my family Dr. told me my nerves were gonna be damaged for the rest of my life.
Yr lucky you were told. I wasn’t told at all about nerve damage, and my CIPN is permanent. Hopefully yours will eventually fade xx
Medications don't really help either
i have such hard time with fatigue and weakness and even one wrinkle in thin shit or clothes drives me crazy, along with hot cold and sweating sensitivity is off chain. My family doc been looking for reason why. I think these cancer doctors HIDE what can happen. I have told mine and always acts dumb or like they know. going to hit these docs hard core now i seen this. i had some and it went away but then AFTER i ha. d finished it slowly started and has not stopped yet, and its been 7 months. and I did not have that much chemo/ra. These kind of things is why I STOPPED. It was killing me fast. my heart enzymes went high which is why so many die of heart issue after cancer.. or during. I stopped and enzymes went back to normal along with blood work, but the fatigue, weakness, sleepiness, sensitivity stayed... ALL these docs seem to think of it MORE DRUGS it seems. it hides symptoms but does more damage. later too. grrrr gab-a-pen-tin LMAO