I’m ten years out after six cycles of taxol/carboplatin for ovarian/endometrial cancer and still I have issues. It is not severe but just enough to be annoying at times. It seems worse in cold weather. It is not disruptive to my life but it can wear on me at times. I guess I look at it as a a price paid for ten years of living with no evidence of disease. I really appreciated this video. Thanks for putting this info out there.
Thank you for sharing your journey and perspective. It’s amazing that you’ve been ten years out with no evidence of disease although the lingering effects are real and life-affecting. You have a powerful outlook. Sending you strength, especially during those cold-weather days!
Thank you so much Dr. I am 55 yrs young and 9 months post chemo for bilateral mastectomy. I have been doing acupuncture for 6 weeks now for neuropathy. its helping I have two more biweekly sessions to complete eight weeks session. will come back and update the results after stoping thanks for all you do you have been such a light on this journey for me and others blessings to you and your family🌹🌻
Thank you for sharing your experience. It's wonderful to hear that acupuncture is helping with your neuropathy. Please do update us on your progress. Your kind words mean a lot. Blessings to you and your family as well.
Exercise can indeed help with neuropathy. Regular physical activity can improve circulation, reduce pain, and enhance overall well-being. You're doing a great job!
Thank you for explaining coasting. It is the first time I hear of it. It would have helped me so much to know that, because I was on paclitaxel and carboplatin and it was so confusing and disheartening when the neuropathy got worse soon after finishing. Exercise absolutely makes it feel much better for me! What also helps is that I bought stimulating insoles and socks from Naboso. They are covered in tiny prickly elements that continuously massage my feet and provide extra feedback from the ground (so I can keep my balance better).
Thank you for sharing your experience. We're glad to hear that the "coasting" explanation helped you. Staying active and using tools to manage neuropathy can make a big difference. The inserts sound awesome. Thanks for sharing that tip with our other viewers. Keep up the good work!
My neuropathy is so bad right now, it’s making me crazy. My fingers and toes are numb and my feet feel like concrete. I’ve had 3 cycles of taxol/caroboplatin. If my feet get any more numb, I won’t be able to walk. I’m really scared that it will never go away.
Be sure to share these concerns with your doctor; there are sometimes options like dose adjustments or medications to help with nerve pain. We hope you can find some relief soon.
Many thanks for another informative and empathic video. I am 13 months post chemotherapy (including docetaxil) and 3 months post my last Herceptin treatment. I had ‘quite bad’ peripheral neuropathy but it has got steadily better. However I still have some numbness in my fingertips (as an avid patchworker and embroidery this make picking up pins and needles difficult) and my toes are still numb. Every so often I get stabbing pains in my fingers and toes. It is encouraging to hear you say this is likely to continue to improve. It was also interested to hear you suggest alternative reasons, having just be diagnosed with secondary hyperparathyroidism. I will discuss this further with my Doctor.
Thank you for your kind words. It's good to hear that your peripheral neuropathy is improving. Continued improvement is possible, and we've seen patients experience significant improvements even after many years. And being evaluated and treated for parathyroid disease is also important. Thanks for sharing your experience here.
I was just wondering about this I am about 18 months after my last chemo, and I feel the neuropathy only in the tip of my thumb. So thanks for addressing this.
We're so glad the video addressed your concerns. It's good to hear that your neuropathy has significantly improved. We know that other people reading this find it helpful too. Wishing you continued recovery.
We're sorry to hear you're experiencing this. We hope this video can provide some helpful information and tips. However, it's important to talk to your medical team about these symptoms, especially since they’re affecting your ability to walk and quality of life.
That was really encouraging as I thought I was stuck with the nerve damage for life. This brings hope. Is it true for nerve damage where lymph nodes have been removed too? Thank you for your encouragement.
We're glad you found the information encouraging! Yes, nerve damage from lymph node removal can also improve over time, although it might take longer. Physical therapy and other supportive treatments can help manage symptoms and promote recovery.
Thank you so much Dr.Griggs for this insightful video! It is very stressful & annoying to live with peripheral neuropathy. After 7 th cycle of Paclitaxcel my P. Neuropathy got worse. I am more worried about risk of falling as my legs give away at times while walking.
Thank you for your kind words. We're sorry to hear about your worsening neuropathy and the challenges you're facing. Please discuss these symptoms with your medical team to find ways to manage them and keep you safe. Exercise is likely to help, and it's also possible that your team will recommend a slight delay or dose change. Remember, you're not alone in this, and we're here to support you.
Thank you for writing with your experience. Trigger finger occurs in up to 5% (1 out of 20 people treated) with aromatase inhibitors. Injections to help relieve the trigger finger are usually effective. We hope this is helpful.
One and a half year since I did chemotherapy,my side effects is numbness toes and fingers till now, please doctor can you explain me why numbness doesn't go away?
Chemotherapy can cause nerve damage that may persist after treatment. As mentioned in our video, nerve regeneration occurs at about a millimeter per month, so it takes a long time. The chemotherapy is taken up by the axons (part of the nerve). The nerves do take a while to recover!
I got paclitaxel weekly with carbo every 3rd week. I didn’t neuropathy in my hands till the last 3 weekly cycles and had to miss my very last weekly cycle. It cleared up very quickly after I finished chemo. However I did develop a vibrating feeling in my feet which started about 3 months after I finished chemo…lasted about 6 months then disappeared. Then reappeared two years later for about another 3 months. Not painful but very annoying and frustrating. Couldn’t really relax with my feet vibrating. Got amitriptyline and this helped a bit. Dont really know anyone else who got a vibrating foot ! So strange x
Thanks for sharing your experience here. Whilst this is not a common report and may not be related to treatment, the timing suggests that it is. We're happy the amitriptyline is helping.
It's 2.5 years since I finished chemo and 2.3 years since I started hormone treatment (letrozole). The peripheral neuropathy in my fingers and feet started to improve a year after finishing chemo but in the last 6 months it's become worse again. Can hormone treatment cause peripheral neuropathy?
Symptoms that occur after chemotherapy may be due to endocrine therapy but a 6-month gap makes it possible that other things are responsible for your symptoms. Talking with your primary care physician would be helpful. They can evaluate you for the presence of thyroid conditions or other underlying conditions.
I had my second dose of chemo Aug 22. For the last week my heels have been burning with pain and I find it hard to walk. When I put cream on them they feel very 'bruised'. I'm wondering if this is neuropathy
It is difficult to say for sure, but these symptoms could be either skin toxicity or neuropathy or even something else. Make sure to tell your team about this before your next treatment.
@@yerbba my chemo didn't happen today after speaking with my oncologist. After telling him of my side effects he decided to lower my chemo dose by 25%. I'm now booked for Sept 19. Overwhelming fatigue, peripheral neuropathy, dizziness, headaches were the main side effects. He said the fatigue I described was not healthy to continue.
I had one treatment of paxitaxal left with neuropathy in my fingers since.it has been since march 2022. The next chemo drug made me so sick i had diahrea for two weeks with iv fluids in every other day. Luckily the cimbo including the red devil worked well and i was able to have a double mastectony. Then 30 radiation tx. And j tried all three AI.S. I AM ON ANASTROZOLE AND THE FATIque is awful and tge joint pain is nearly unbearable. My oncologist said i can take tumeric . That helps a lot. Loratidine hels the hot flashes some and i have to say 3 weeks of steady moderate exercise is helping the joint pain as well. Still awful but bearable for now. What a journey.
What a journey you've been on. Thank you for sharing all that has helped, from turmeric and loratadine to exercise, even if it’s still tough. We hope that combination continues to make things more manageable for you. Hang in there, and thank you for adding your insights for others dealing with neuropathy.
Neuropathy occurs in about 8% of people treated with abemaciclib, so while it can definitely be seen, it's not as common. Always discuss any new or worsening symptoms with your oncologist.
Itching is a somewhat common side effect of paclitaxel chemotherapy. It can occur during infusion or develop over the course of treatment. Management includes moisturizers, antihistamines, and good skin care. Severe or persistent itching should be reported to the healthcare team. While uncomfortable, it's usually manageable with proper intervention.
Enhertu is the brand name of the antibody-drug conjugate fam-trastuzumab deruxtecan-nxki. Neuropathy is not one of the common side effects of this medication.
I still have neuropathy after 18 months. It’s not too bad. Small price to pay for being alive! The bottoms of my feet are very sensitive. I feel every speck of dust inside my shoes. lol
It's great that you’re focusing on the positive, even with lingering neuropathy. Sensitivity in your feet is common after chemo, and while it can be frustrating, it's a sign that your nerves are slowly healing. Wearing cushioned shoes and using creams designed for neuropathy might help reduce discomfort. Thank you for watching!
My last dose of paclitaxol (after 4 AC doses) was May 9th 2023. I had quite a bit of peripheral neuropathy in fingers and toes. I hand sew a lot and I was dropping the needle and pins. Now thought it's just the tips of my fingers, about 1/2 cm and about 1cm for my toes so it is getting better. However, on a different topic, could there be a video about breast cancer hormone therapy treatments and the risk of arthritis. This is something where I have gone from no arthritis to advanced in 3-4 months in my left clavicle with no history of injury. I have done some research and aromatase inhibitors seems like they can increase risk of OA and RA.
Thanks for sharing your experience with the neuropathy. Don't give up hope as it's likely to get better (very slowly). We do have a video on joint pains and endocrine treatments that you can find here: ua-cam.com/video/1j6pCagUeBs/v-deo.html
It makes me very angry that you don‘t teach us how to prevent getting p.neuropathy. I prevented it by cooling down my feet and hands while having chemotherapy by the help of a cooling machine. Also bound firmly my feet and hands while cooling them down. During the week I used a roller with 500 steel needles to stimulate my nerves in the hand and feet.
Cooling techniques and nerve stimulation can indeed help manage neuropathy. It is common to be angry at information you feel is missing from your medical team.
I'm gonna have four cycles of paclitaxol ( after 4 cycles of AC). Do you recommend using cooling mittens and socks during infusion to prevent neoropathy?
Cooling mittens and socks can help prevent neuropathy during chemotherapy. Studies have shown that using cooling techniques can reduce the risk of developing peripheral neuropathy. One study [pubmed.ncbi.nlm.nih.gov/33489425/] found that women who wore frozen gloves and socks during chemotherapy experienced fewer symptoms of nerve damage in their hands and feet compared to those who did not use these cooling methods.
We agree, neuropathy can be incredibly difficult to deal with. We hope our information is helpful and provides some support during this challenging time.
I’m ten years out after six cycles of taxol/carboplatin for ovarian/endometrial cancer and still I have issues. It is not severe but just enough to be annoying at times. It seems worse in cold weather. It is not disruptive to my life but it can wear on me at times. I guess I look at it as a a price paid for ten years of living with no evidence of disease. I really appreciated this video. Thanks for putting this info out there.
Thank you for sharing your journey and perspective. It’s amazing that you’ve been ten years out with no evidence of disease although the lingering effects are real and life-affecting. You have a powerful outlook. Sending you strength, especially during those cold-weather days!
You have explained neuropathy better than anyone has explained it to me. Thank you so much.
Thank you for your kind words. We're glad this video was helpful!
Thank you so much Dr. I am 55 yrs young and 9 months post chemo for bilateral mastectomy. I have been doing acupuncture for 6 weeks now for neuropathy. its helping I have two more biweekly sessions to complete eight weeks session. will come back and update the results after stoping thanks for all you do you have been such a light on this journey for me and others blessings to you and your family🌹🌻
Thank you for sharing your experience. It's wonderful to hear that acupuncture is helping with your neuropathy. Please do update us on your progress. Your kind words mean a lot. Blessings to you and your family as well.
Exercise has absolutely has helped my Neuropath.
Exercise can indeed help with neuropathy. Regular physical activity can improve circulation, reduce pain, and enhance overall well-being. You're doing a great job!
After complettion of my treatment, i am suffering from cramps in my right hand, its very difficult to write and type.
Thank you for explaining coasting. It is the first time I hear of it. It would have helped me so much to know that, because I was on paclitaxel and carboplatin and it was so confusing and disheartening when the neuropathy got worse soon after finishing. Exercise absolutely makes it feel much better for me! What also helps is that I bought stimulating insoles and socks from Naboso. They are covered in tiny prickly elements that continuously massage my feet and provide extra feedback from the ground (so I can keep my balance better).
Thank you for sharing your experience. We're glad to hear that the "coasting" explanation helped you. Staying active and using tools to manage neuropathy can make a big difference. The inserts sound awesome. Thanks for sharing that tip with our other viewers. Keep up the good work!
My neuropathy is so bad right now, it’s making me crazy. My fingers and toes are numb and my feet feel like concrete. I’ve had 3 cycles of taxol/caroboplatin. If my feet get any more numb, I won’t be able to walk. I’m really scared that it will never go away.
You need to talk to your oncologist before your next treatment
@ I did, and he is going to decrease the amount of chemo I get next week.
Be sure to share these concerns with your doctor; there are sometimes options like dose adjustments or medications to help with nerve pain. We hope you can find some relief soon.
@@yerbba we swapped the paclitaxel with docetaxel, for the remainder of my treatment!
Many thanks for another informative and empathic video.
I am 13 months post chemotherapy (including docetaxil) and 3 months post my last Herceptin treatment.
I had ‘quite bad’ peripheral neuropathy but it has got steadily better. However I still have some numbness in my fingertips (as an avid patchworker and embroidery this make picking up pins and needles difficult) and my toes are still numb. Every so often I get stabbing pains in my fingers and toes.
It is encouraging to hear you say this is likely to continue to improve. It was also interested to hear you suggest alternative reasons, having just be diagnosed with secondary hyperparathyroidism. I will discuss this further with my Doctor.
Thank you for your kind words. It's good to hear that your peripheral neuropathy is improving. Continued improvement is possible, and we've seen patients experience significant improvements even after many years. And being evaluated and treated for parathyroid disease is also important. Thanks for sharing your experience here.
I truly appreciate your comments regarding the issues I am experiencing. I learned so much from watching the videos. So appreciative. Thank you.
We're so glad to hear that our videos have been helpful to you!
Thank you, Dr. Grigggs, for the informative advice about chemo therapy and neuropathy (therapy).
Thanks for tuning in!
I was just wondering about this
I am about 18 months after my last chemo, and I feel the neuropathy only in the tip of my thumb. So thanks for addressing this.
We're so glad the video addressed your concerns. It's good to hear that your neuropathy has significantly improved. We know that other people reading this find it helpful too. Wishing you continued recovery.
Thank you so much for this. You explained everything perfectly.
Thank you for your kind words. We're glad you found the information helpful!
I cant walk without support. My feet are numb and heavy.
Things got worse after chemo.
What should I do????
We're sorry to hear you're experiencing this. We hope this video can provide some helpful information and tips. However, it's important to talk to your medical team about these symptoms, especially since they’re affecting your ability to walk and quality of life.
That was really encouraging as I thought I was stuck with the nerve damage for life. This brings hope. Is it true for nerve damage where lymph nodes have been removed too? Thank you for your encouragement.
We're glad you found the information encouraging! Yes, nerve damage from lymph node removal can also improve over time, although it might take longer. Physical therapy and other supportive treatments can help manage symptoms and promote recovery.
@@yerbba thank you.
Thank you so much Dr.Griggs for this insightful video! It is very stressful & annoying to live with peripheral neuropathy. After 7 th cycle of Paclitaxcel my P. Neuropathy got worse. I am more worried about risk of falling as my legs give away at times while walking.
Thank you for your kind words. We're sorry to hear about your worsening neuropathy and the challenges you're facing. Please discuss these symptoms with your medical team to find ways to manage them and keep you safe. Exercise is likely to help, and it's also possible that your team will recommend a slight delay or dose change. Remember, you're not alone in this, and we're here to support you.
3x breast cancer...chemo 2010 & again 2019. Neuropathy in my feet has gotten worse and is now I'm my calves too
We're really sorry to hear about the worsening neuropathy.
Please talk about Trigger Finger & Breast Cancer Treatment I’m suffering
Whats trigger finger and breast cancer got in common. I'd like to know as I have dupuytren's disease
Thank you for writing with your experience. Trigger finger occurs in up to 5% (1 out of 20 people treated) with aromatase inhibitors. Injections to help relieve the trigger finger are usually effective. We hope this is helpful.
@@yerbba thank you for you information ❤
One and a half year since I did chemotherapy,my side effects is numbness toes and fingers till now, please doctor can you explain me why numbness doesn't go away?
Chemotherapy can cause nerve damage that may persist after treatment. As mentioned in our video, nerve regeneration occurs at about a millimeter per month, so it takes a long time. The chemotherapy is taken up by the axons (part of the nerve). The nerves do take a while to recover!
I got paclitaxel weekly with carbo every 3rd week. I didn’t neuropathy in my hands till the last 3 weekly cycles and had to miss my very last weekly cycle. It cleared up very quickly after I finished chemo. However I did develop a vibrating feeling in my feet which started about 3 months after I finished chemo…lasted about 6 months then disappeared. Then reappeared two years later for about another 3 months. Not painful but very annoying and frustrating. Couldn’t really relax with my feet vibrating. Got amitriptyline and this helped a bit. Dont really know anyone else who got a vibrating foot ! So strange x
Thanks for sharing your experience here. Whilst this is not a common report and may not be related to treatment, the timing suggests that it is. We're happy the amitriptyline is helping.
It's 2.5 years since I finished chemo and 2.3 years since I started hormone treatment (letrozole). The peripheral neuropathy in my fingers and feet started to improve a year after finishing chemo but in the last 6 months it's become worse again. Can hormone treatment cause peripheral neuropathy?
Symptoms that occur after chemotherapy may be due to endocrine therapy but a 6-month gap makes it possible that other things are responsible for your symptoms. Talking with your primary care physician would be helpful. They can evaluate you for the presence of thyroid conditions or other underlying conditions.
After treatment, I have focal dystonia
I had my second dose of chemo Aug 22. For the last week my heels have been burning with pain and I find it hard to walk. When I put cream on them they feel very 'bruised'. I'm wondering if this is neuropathy
It is difficult to say for sure, but these symptoms could be either skin toxicity or neuropathy or even something else. Make sure to tell your team about this before your next treatment.
@@yerbba I definitely will thank you for your reply and information 😊
@@yerbba my chemo didn't happen today after speaking with my oncologist. After telling him of my side effects he decided to lower my chemo dose by 25%. I'm now booked for Sept 19. Overwhelming fatigue, peripheral neuropathy, dizziness, headaches were the main side effects. He said the fatigue I described was not healthy to continue.
I had one treatment of paxitaxal left with neuropathy in my fingers since.it has been since march 2022. The next chemo drug made me so sick i had diahrea for two weeks with iv fluids in every other day. Luckily the cimbo including the red devil worked well and i was able to have a double mastectony. Then 30 radiation tx. And j tried all three AI.S. I AM ON ANASTROZOLE AND THE FATIque is awful and tge joint pain is nearly unbearable. My oncologist said i can take tumeric . That helps a lot. Loratidine hels the hot flashes some and i have to say 3 weeks of steady moderate exercise is helping the joint pain as well. Still awful but bearable for now. What a journey.
What a journey you've been on. Thank you for sharing all that has helped, from turmeric and loratadine to exercise, even if it’s still tough. We hope that combination continues to make things more manageable for you. Hang in there, and thank you for adding your insights for others dealing with neuropathy.
Can a combination of Letrozol and Abemaciclib also cause neuropathy?
Neuropathy occurs in about 8% of people treated with abemaciclib, so while it can definitely be seen, it's not as common. Always discuss any new or worsening symptoms with your oncologist.
Thank you so much.
We appreciate you!
Has anyone else experienced itching, but really unbearable itching in the toes from the Paclitaxel?
Itching is a somewhat common side effect of paclitaxel chemotherapy. It can occur during infusion or develop over the course of treatment. Management includes moisturizers, antihistamines, and good skin care. Severe or persistent itching should be reported to the healthcare team. While uncomfortable, it's usually manageable with proper intervention.
Make a video on Her2 positive breast cancer brain mets treatment with enhertu
Enhertu is the brand name of the antibody-drug conjugate fam-trastuzumab deruxtecan-nxki. Neuropathy is not one of the common side effects of this medication.
@@yerbba i want to know does enhertu or tucatinib which one is controlled many years from Her2 positive breast cancer brain mets
I still have neuropathy after 18 months. It’s not too bad. Small price to pay for being alive! The bottoms of my feet are very sensitive. I feel every speck of dust inside my shoes. lol
It's great that you’re focusing on the positive, even with lingering neuropathy. Sensitivity in your feet is common after chemo, and while it can be frustrating, it's a sign that your nerves are slowly healing. Wearing cushioned shoes and using creams designed for neuropathy might help reduce discomfort. Thank you for watching!
My last dose of paclitaxol (after 4 AC doses) was May 9th 2023. I had quite a bit of peripheral neuropathy in fingers and toes. I hand sew a lot and I was dropping the needle and pins. Now thought it's just the tips of my fingers, about 1/2 cm and about 1cm for my toes so it is getting better. However, on a different topic, could there be a video about breast cancer hormone therapy treatments and the risk of arthritis. This is something where I have gone from no arthritis to advanced in 3-4 months in my left clavicle with no history of injury. I have done some research and aromatase inhibitors seems like they can increase risk of OA and RA.
Thanks for sharing your experience with the neuropathy. Don't give up hope as it's likely to get better (very slowly). We do have a video on joint pains and endocrine treatments that you can find here: ua-cam.com/video/1j6pCagUeBs/v-deo.html
It makes me very angry that you don‘t teach us how to prevent getting p.neuropathy.
I prevented it by cooling down my feet and hands while having chemotherapy by the help of a cooling machine. Also bound firmly my feet and hands while cooling them down.
During the week I used a roller with 500 steel needles to stimulate my nerves in the hand and feet.
Cooling techniques and nerve stimulation can indeed help manage neuropathy. It is common to be angry at information you feel is missing from your medical team.
I'm gonna have four cycles of paclitaxol ( after 4 cycles of AC). Do you recommend using cooling mittens and socks during infusion to prevent neoropathy?
Cooling mittens and socks can help prevent neuropathy during chemotherapy. Studies have shown that using cooling techniques can reduce the risk of developing peripheral neuropathy. One study [pubmed.ncbi.nlm.nih.gov/33489425/] found that women who wore frozen gloves and socks during chemotherapy experienced fewer symptoms of nerve damage in their hands and feet compared to those who did not use these cooling methods.
❤
We appreciate you!
Neuropathy & Breast Cancer Treatment is Horrible
We agree, neuropathy can be incredibly difficult to deal with. We hope our information is helpful and provides some support during this challenging time.