Just found this today, February 2023. This is what I needed to hear. I'm getting, "nothing can be done" from the oncologist without any options. That doesn't help me. At least you say "nothing can be done, but you can do this." Thank you.
I’m glad I happened to view this and learned something regarding my chemo-induced neuropathy in the year 2020 when I was 68 years old, till the present time. Today, is June 06, 2023. Thank you Dr. Leslie. Now, I have the real information that wasn’t discussed with me properly. During my chemotherapy, when I told them I’m having numbness, tingling sensation and pins and needles on my hands and feet, I was told it was because of my Diabetic Type 2 medical status. It was only after I insisted that I never had it before my chemotherapy, and that I am in real pain and it bothered me, that they prescribed Initially Gabapentin then change to pregabalin. Just simply told me to exercise, never had any Physical Therapy after my surgery from breast cancer. I appreciate the way you explain the necessary things to do with my chemo-induced neuropathy and I thank you. Now I know better what to do and I am relieved and hopeful to be able to deal with my neuropathy in a positive way. I believe that it is not too late for me now that I am 70 years and six months old. Again thank you Dr. Leslie. May God Bless you.❤
I asked my oncologist for a referral to a physical therapist who had experience with cancer patients because I heard that they could be helpful with CIPN. I was virtually ignored. Mentioned my struggle with neuropathy to my GP and he wanted to prescribe some drug. I inquired about the drug and it turned out to be pain medication which would aggravate my problem with fatigue. To add insult to injury, I no longer feel pain; I could hold a block of ice with my bare hands, now. The problem, rather, is with numbness and tingling. The point being that the drug would worsen my quality of life while adding zero benefit. I flatly declined. I have a degree of aversion to the medical profession and view their treatments with a measure of skepticism. Maybe I ask too many questions. Maybe I'm just stupid.
Asking a ton of questions is never stupid!!! (And should be respected). Keep pushing for PT, you can get a script from any MD, DO, NP or PA. And keep looking for health care providers that will work with you to create a best plan for you. They’re out there! Hugs!
I appreciate your encouragement and advice about coping with neuropathy which I still have twelve months after completing my course of chemotherapy. I suppose I am lucky to have fairly mild symptoms of tingling in my feet which does not bother me. However, I do have problems with balance, usually now just when I get tired. I just ignore the funny looks I get from people who seem to be thinking that I have had too much to drink and just carry on walking because I am confident that I will not fall over. Luckily, my balance does not effect my ability to ride my horse so I get to exercise my leg muscles that way. Also, I use an exercise bike at home. I am 72 years old.
I also am hearing this in August 2023. I have neuropathy in my hands and feet and I had to research on my own to get information about it. My oncologist never even mentioned that this is possible for me to get. Every part of chemotherapy seems to have made my body so much worse than I expected.
Hey @patwo4259, I am sorry you are hurting. Chemo is tough, but you will recover. Walk, stretch and strengthen, be active as possible. Have one of your docs get you to a physical therapist (physio)
The problem with neuropathy and exercising is it makes me super clumsy and I'm afraid of falling (I have osteoporosis). So what I do is swim, take aqua aerobics classes (hey, if I fall in the pool, no big deal) or I take some Zumba chair classes which are surprisingly quite a workout. I'd love to start walking my dogs again but my balance is still way off so I'm afraid to try it.
Hey @yorkieuniverse1 ! Sorry for the delay in getting back to you. Yes, protecting yourself from falling is incredibly important. I would highly recommend you reach out to a physical therapist to help you get stronger work on your balance, and find it safe and effective ways for you to get stronger. Best wishes to you!
I was going to a public heated pool at least three times a week to exercise to help my fibromyalgia and Lipoedema. But since I have been diagnosed with breast cancer I have been told I can’t risk infection and not to go. I’ve had two surgeries and starting chemo tomorrow. I’ve started the last two days going to a local shopping mall at 7 in the morning when there are few people there to infect me and I can get support from a shopping trolley. Any other suggestions? Looks like I won’t be allowed back in the pool for ages. My fibro and Lipoedema are flaring because of the lack of exercise and now I will be adding in the chemo side effects. Any other suggestions welcome.
You forgot one word after pins, FIRE. Feels like someone is holding a lighter under my toes. Exactly 10 years since my last chemo session, some days it’s so bad that i think why did i survive cancer just to live a miserable life in pain.
I may suggest to invest in an exercise bike or treadmill so anyone going thru chemo can workout at home. Take a multiple vitamin pack, I did say pack and keep mvoving.
Hi ITSMZPOO, I’m sorry you are hurting. CIPN can be horrible. Falling is incredibly dangerous, so if you are falling, it is really important to find ways to work on your balance whether it’s in the water, standing with support or doing sitting exercise. It may be a good idea for you to see a PT to help you. Best wishes!
I've been there too, banged and skinned my knees and shins, and the balance is still off months after the last chemotherapy. Numb feet and tingling hands like they're asleep moments after you use them. Sucks to beat heck.
My oncologist is useless when it comes to side effects from chemo. He disregards everything I say. So I'm pretty much on my own to figure things out. Very discouraging.
Hey @Agnessymon8869! I am sorry you’ve been left to grapple things on your own. The symptoms are real. Talk with one of your nurses about finding a physical therapist (physio) and/or primary physician to help answer your questions and manage your symptoms. Best wishes to you!
Different for every patient I would say I started chemo over a year ago and my numbness just got worse still real bad at the moment feel like my feet are always cold and numb
Sorry to hear you are hurting! Please talk with your medical oncologist or PCP about trying some medications like gabapentin that can decrease the intensity of the pain.
No offense but this was not at all helpful. You simply told us to exercise and said it would not help nephropathy. If anything it was depressing. Sorry I know you tried
Hey John! I’m assuming you a re living with CIPN and all the crap that goes along with it. The purpose of this video is twofold… 1) to provide accurate information so people don’t waste money, time and effort on “cures” for neuropathy that don’t exist, and 2) to encourage people with CIPN to move and exercise as much as possible. I have seen people stop moving, close down and lose even more function and quality of life. That we can prevent and help people recover. Best wishes to you.
@@therecoveryroom2198 There are exercises that one can do regarding neuropathy for the hands and feet. This is what i expected you to talk about. Yes, exercise is great and I do it almost everyday. But what abut the exercises to directly help neuropathy? Thanks for the reply
Just found this today, February 2023. This is what I needed to hear. I'm getting, "nothing can be done" from the oncologist without any options. That doesn't help me. At least you say "nothing can be done, but you can do this." Thank you.
Best wishes to you, Donner!
I’m glad I happened to view this and learned something regarding my chemo-induced neuropathy in the year 2020 when I was 68 years old, till the present time. Today, is June 06, 2023. Thank you Dr. Leslie. Now, I have the real information that wasn’t discussed with me properly.
During my chemotherapy, when I told them I’m having numbness, tingling sensation and pins and needles on my hands and feet, I was told it was because of my Diabetic Type 2 medical status. It was only after I insisted that I never had it before my chemotherapy, and that I am in real pain and it bothered me, that they prescribed Initially Gabapentin then change to pregabalin. Just simply told me to exercise, never had any Physical Therapy after my surgery from breast cancer. I appreciate the way you explain the necessary things to do with my chemo-induced neuropathy and I thank you. Now I know better what to do and I am relieved and hopeful to be able to deal with my neuropathy in a positive way. I believe that it is not too late for me now that I am 70 years and six months old. Again thank you Dr. Leslie. May God Bless you.❤
Hey Espie! Thank you for your kind words and best wishes to you as you heal and regain strength!
Me too, just what I needed to hear. Thanks.
Thank you so much
I asked my oncologist for a referral to a physical therapist who had experience with cancer patients because I heard that they could be helpful with CIPN.
I was virtually ignored.
Mentioned my struggle with neuropathy to my GP and he wanted to prescribe some drug. I inquired about the drug and it turned out to be pain medication which would aggravate my problem with fatigue. To add insult to injury, I no longer feel pain; I could hold a block of ice with my bare hands, now. The problem, rather, is with numbness and tingling. The point being that the drug would worsen my quality of life while adding zero benefit.
I flatly declined.
I have a degree of aversion to the medical profession and view their treatments with a measure of skepticism. Maybe I ask too many questions.
Maybe I'm just stupid.
Asking a ton of questions is never stupid!!! (And should be respected).
Keep pushing for PT, you can get a script from any MD, DO, NP or PA.
And keep looking for health care providers that will work with you to create a best plan for you. They’re out there! Hugs!
@@therecoveryroom2198 Thanks. You're kind and very helpful.
Thank you.
I appreciate your encouragement and advice about coping with neuropathy which I still have twelve months after completing my course of chemotherapy. I suppose I am lucky to have fairly mild symptoms of tingling in my feet which does not bother me. However, I do have problems with balance, usually now just when I get tired. I just ignore the funny looks I get from people who seem to be thinking that I have had too much to drink and just carry on walking because I am confident that I will not fall over. Luckily, my balance does not effect my ability to ride my horse so I get to exercise my leg muscles that way. Also, I use an exercise bike at home. I am 72 years old.
I love how active you (and your horse) are staying Melanie! Keep working on your balance and stay strong!!
I also am hearing this in August 2023. I have neuropathy in my hands and feet and I had to research on my own to get information about it. My oncologist never even mentioned that this is possible for me to get. Every part of chemotherapy seems to have made my body so much worse than I expected.
Hey @patwo4259, I am sorry you are hurting. Chemo is tough, but you will recover. Walk, stretch and strengthen, be active as possible. Have one of your docs get you to a physical therapist (physio)
The problem with neuropathy and exercising is it makes me super clumsy and I'm afraid of falling (I have osteoporosis). So what I do is swim, take aqua aerobics classes (hey, if I fall in the pool, no big deal) or I take some Zumba chair classes which are surprisingly quite a workout. I'd love to start walking my dogs again but my balance is still way off so I'm afraid to try it.
Hey @yorkieuniverse1 ! Sorry for the delay in getting back to you. Yes, protecting yourself from falling is incredibly important. I would highly recommend you reach out to a physical therapist to help you get stronger work on your balance, and find it safe and effective ways for you to get stronger. Best wishes to you!
I was going to a public heated pool at least three times a week to exercise to help my fibromyalgia and Lipoedema. But since I have been diagnosed with breast cancer I have been told I can’t risk infection and not to go. I’ve had two surgeries and starting chemo tomorrow. I’ve started the last two days going to a local shopping mall at 7 in the morning when there are few people there to infect me and I can get support from a shopping trolley. Any other suggestions? Looks like I won’t be allowed back in the pool for ages. My fibro and Lipoedema are flaring because of the lack of exercise and now I will be adding in the chemo side effects. Any other suggestions welcome.
@@karenstandley597🙏🙏🙏🙏🙏 for you ❤❤❤❤
You forgot one word after pins, FIRE. Feels like someone is holding a lighter under my toes. Exactly 10 years since my last chemo session, some days it’s so bad that i think why did i survive cancer just to live a miserable life in pain.
That is right on, @TrondOleJensen! “Fire” is a great descriptor of what many people with CIPN live with. Best wishes to you!
I may suggest to invest in an exercise bike or treadmill so anyone going thru chemo can workout at home. Take a multiple vitamin pack, I did say pack and keep mvoving.
YOU'RE WELL INTENTIONED BUT HOW DO YOU GO FOR WALKS WHEN YOUR FEET ARE SO NUMB YOU KEEP FALLING BECAUSE IT AFFECTS YOUR BALANCE?
Hi ITSMZPOO, I’m sorry you are hurting. CIPN can be horrible. Falling is incredibly dangerous, so if you are falling, it is really important to find ways to work on your balance whether it’s in the water, standing with support or doing sitting exercise. It may be a good idea for you to see a PT to help you. Best wishes!
I find it’s easier to bike ride then walk.
I've been there too, banged and skinned my knees and shins, and the balance is still off months after the last chemotherapy. Numb feet and tingling hands like they're asleep moments after you use them. Sucks to beat heck.
My oncologist is useless when it comes to side effects from chemo. He disregards everything I say. So I'm pretty much on my own to figure things out. Very discouraging.
Hey @Agnessymon8869! I am sorry you’ve been left to grapple things on your own. The symptoms are real. Talk with one of your nurses about finding a physical therapist (physio) and/or primary physician to help answer your questions and manage your symptoms. Best wishes to you!
Thank you doctor. But how long does the pain stay with the patient? Is this a permanent kind of pain?
Different for every patient I would say I started chemo over a year ago and my numbness just got worse still real bad at the moment feel like my feet are always cold and numb
Possible to talk
I am from India
👍
I need to wear Birkenstock sandals all the time i need to walk; even at home.
I have CIPN, really wish I would just die in my sleep some nights.
Sorry to hear you are hurting! Please talk with your medical oncologist or PCP about trying some medications like gabapentin that can decrease the intensity of the pain.
@@therecoveryroom2198 I've been taking 2400 mg of gabapentin for about 6 months now, it seems to be pretty worthless. Thanks for your reply.
Yeah gabapertin just makes you tired
100% reversal of your condition. High dose thiamine hcl . Check out Dr Chandler Marrs and Dr Derek Lonsdale
God heal you all in JESUS CHRIST NAME
Ask your oncologist about cold laser treatment.
I am about to try this as well, fingers crossed!
Sorry to say, I did 9 straight sessions & it did not help at all :(
What kind of neuropathy does this help for
Don't forget taking vitamin Bs
No offense but this was not at all helpful. You simply told us to exercise and said it would not help nephropathy. If anything it was depressing. Sorry I know you tried
Hey John! I’m assuming you a re living with CIPN and all the crap that goes along with it. The purpose of this video is twofold… 1) to provide accurate information so people don’t waste money, time and effort on “cures” for neuropathy that don’t exist, and 2) to encourage people with CIPN to move and exercise as much as possible. I have seen people stop moving, close down and lose even more function and quality of life. That we can prevent and help people recover. Best wishes to you.
@@therecoveryroom2198 There are exercises that one can do regarding neuropathy for the hands and feet. This is what i expected you to talk about.
Yes, exercise is great and I do it almost everyday. But what abut the exercises to directly help neuropathy?
Thanks for the reply