Need hope: Neuropathy from chemo

Posted by needshope78 @needshope78, Apr 24, 2020

Is there anyone going through neuropathy from chemo. If so how long until my mother will be able to walk again afterwards. It’s been 8 weeks every week gets worse

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

@loribmt

@tessie63 I meant to comment on your walker named Charlie! That made me giggle. I had named my IV cart Christopher (Walken) because we walked together miles a day in the hospital…thankfully he was on wheels! LOL
Then when I needed a walker for a short while, it was also dubbed Christopher. My chemo nurses at Mayo even printed out a photo of Christopher Walken to tag onto my cart for me so I wasn’t walking down the halls alone. 😀. Then the scary thing was, when my hair started returning I bore a striking resemblance to Chris Walken.
Thought you might enjoy the photos.

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Oh, that is too funny! A great story! All the best to you.
Carol

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@loribmt

I’m so moved by your tender story of love and life with your husband of 54 years. That’s a huge milestone in itself with so many memories of decades spent together. “I am his memory and he is my feet.” This is a beautiful line and reflective of what has made your marriage so successful. It wasn’t always one of ‘memory and walking’, but I’m sure you both always had each other’s back and together ‘made a whole person’ as my husband and I say. ☺️
It’s wonderful that you are living in a setting that works perfectly for both of you. It’s important to feel safe, secure and part of a community. I know you mentioned having a pity party sometimes…go for it! The difference is, you know not to stay too long at that party. 😉
I read a few of your previous posts to see that you’ve gotten introduced to a number of fellow neuropathy members. Sadly, it’s a pretty hot topic in the forum but it lets you know you’re not alone…not that it makes you feel better but sometimes misery loves company. (I really don’t know what that means! My mom always used to say that!

Thank you for asking about my story. In a nutshell, 3 years ago, I was diagnosed with Acute Myeloid Leukemia after being seriously ill for 3 weeks. Many rounds of chemo and a bone marrow transplant at Mayo-Rochester and I’m back to normal…in remission and things look promising! It was an arduous journey but well worth the effort. I’m happy to just be alive every day and I feel it’s my mission to help give hope and encouragement to other members diagnosed with blood cancers and/or facing a bone marrow transplant. ☺️ My husband and I just celebrated our 48th anniversary…we never really know where our life journey will take us but it is very special when it’s spent with someone we love. I wish you and your husband all the best.

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This has been a wonderful place for me to talk about my life now and hear the stories from people who have similar afflictions. Thank you for the volunteer help you give to us all. It makes a big difference in our lives.
All the best
Carol

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@loribmt

@tessie63 I meant to comment on your walker named Charlie! That made me giggle. I had named my IV cart Christopher (Walken) because we walked together miles a day in the hospital…thankfully he was on wheels! LOL
Then when I needed a walker for a short while, it was also dubbed Christopher. My chemo nurses at Mayo even printed out a photo of Christopher Walken to tag onto my cart for me so I wasn’t walking down the halls alone. 😀. Then the scary thing was, when my hair started returning I bore a striking resemblance to Chris Walken.
Thought you might enjoy the photos.

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Okay, where's the LOVE button?! Christopher Walken 🙂

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@valentinaz

Okay, where's the LOVE button?! Christopher Walken 🙂

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Right??!! He’s my heartthrob! ❤️❤️
You might enjoy this video: https://video.search.yahoo.com/search/video?fr=yfp-t-s&ei=UTF-8&p=fat+boy+slim+video+walken+youtube#action=view&id=3&vid=9ad191b648e66e932e5a896bf2022b17

If you’ve seen it before, it’s worth a repeat. 😉

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@valentinaz

Okay, where's the LOVE button?! Christopher Walken 🙂

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@valentinaz @loribmt Did you ever see Christopher Walken in the film "Nine Lives"? Not only do I love Christopher Walken, too, but I enjoyed his role in that film as the cat store owner who is also a mystic-type. It was so sweet and funny.

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@naturegirl5

@valentinaz @loribmt Did you ever see Christopher Walken in the film "Nine Lives"? Not only do I love Christopher Walken, too, but I enjoyed his role in that film as the cat store owner who is also a mystic-type. It was so sweet and funny.

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I did see this, Helen! One of my favorite movies with him. 🙃

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@tessie63

Thank you for replying to my email. Actually, my family doctor did not know that the cyst I had on my ovary had developed into a full grown tumour until I went to see her about my symptoms. She was devastated to find out what had happened and actually blamed herself. She had phoned the gynocologist I saw to ask her if we need to follow this every year with ultrasounds and she said it was too small to amount to anything and that was in 2014 and here we are today. The moral of this story is any size cyst on any organ should always be followed!
I watch a lot of sports on TV. I love baseball and our hometown football team and I have these word games on my I pad that I do every day. I find myself losing so many words now so this helps me with that. Please share your story with me sometime. It helps to know I am not the only one out there that was damaged by chemo.
Hope to hear from you again.
Carol

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@tessie63. I so agree that anything size cyst on an organ should be followed closely! This is especially true for ovaries.

How wonderful that you enjoy sports on TV and your hometown football. Word games are fun and having your iPad handy whenever you want makes it very easy to enjoy those.

I'm a survivor of uterine cancer - 2019 with a recurrence in 2021. At this point my treatments have been surgery (hysterectomy) in 2019 and radiation therapy in 2021-22. I haven't had chemotherapy and at this point I feel my journey has not ended so who knows what will be in my future? I have follow-ups every four months and my next appointment will be at the end of August. My radiation oncologist told me that if I have another recurrence or primary cancer in the pelvic area it would be awhile before anything shows up. They are following a thyroid nodule that showed up in a PET scan last year - it has not changed - and lung nodules that showed up in a CT scan in April this year. I go to Mayo Clinic in Rochester and I've been pleased with my care and knowing that they will follow up when they say they will.

My favorite activities are being outside - thus the name, naturegirl5. I like to putter around in my garden in summer and snowshoe and x-country ski in winter. I live in the Upper Midwest and we have lots of snow so there are always winter activities to do.

What advice do you have for how you have arrived to this place in your life with such acceptance and gratitude?

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@naturegirl5

@tessie63. I so agree that anything size cyst on an organ should be followed closely! This is especially true for ovaries.

How wonderful that you enjoy sports on TV and your hometown football. Word games are fun and having your iPad handy whenever you want makes it very easy to enjoy those.

I'm a survivor of uterine cancer - 2019 with a recurrence in 2021. At this point my treatments have been surgery (hysterectomy) in 2019 and radiation therapy in 2021-22. I haven't had chemotherapy and at this point I feel my journey has not ended so who knows what will be in my future? I have follow-ups every four months and my next appointment will be at the end of August. My radiation oncologist told me that if I have another recurrence or primary cancer in the pelvic area it would be awhile before anything shows up. They are following a thyroid nodule that showed up in a PET scan last year - it has not changed - and lung nodules that showed up in a CT scan in April this year. I go to Mayo Clinic in Rochester and I've been pleased with my care and knowing that they will follow up when they say they will.

My favorite activities are being outside - thus the name, naturegirl5. I like to putter around in my garden in summer and snowshoe and x-country ski in winter. I live in the Upper Midwest and we have lots of snow so there are always winter activities to do.

What advice do you have for how you have arrived to this place in your life with such acceptance and gratitude?

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I am so sorry to hear about your ongoing battle with cancer and I’m sure your treatment with radiation takes a toll on the emotional and physical aspects of your body. It would be nice for you to get it over with already and carry on with life.
I live in cold Saskatchewan, Canada. I prefer the warmer months here but, unfortunately, that is the shorter season here.
You are indeed lucky to be treated by the clinic in Rochester. I was there for the treatment of sarquidosis years ago. Our health care system sucks here! My friend has been waiting for over two years now to have her colonoscopy. For most of us, going to the US is just too expensive. The surgeries here have been held up due to Covid and we are experiencing a lack of nurses and doctors now to man the hospitals. Many were burnt out and just did not return. If your doctor recommends any number of tests you could wait months to get them. It’s
sad for so many who need care now and can’t get it.
I wish you the best of health in the future. You sound like a strong very upbeat person. Remember, we are both on the right side of the grass, for now anyway so we just have to make the best of each day. If I sometimes feel life is not fair I go off by myself, taking a good supply of kleenex, and have a good cry about it. It makes me feel so much better! Keep in touch.
Carol

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Hi! I had chemo in 2020 when I was 73 for ovarian cancer and nobody at the hospital told me to expect neuropathy as a side effect. Worse pain I ever had in my feet and legs! I got a script for Lyrica and within days I was pretty much pain free. Lyrica takes a while to build up in your system before you see results. I stopped taking it when the pain went away. The numbness will probably never go away. Anyway, as to walking - when the pain was under control, about 1-2 weeks while on Lyrica, I could walk short distances and used my cain when necessary. The numbness was an issue though. Because the bottoms of my feet were (and still are) numb my balance was off which made it difficult to walk. I just started back on Lyrica yesterday because of infrequent shooting pain in my feet and legs, and leg cramps at night. I read recently that people also massage their feet and legs at bedtime with Vicks Vapor Rub. I'm going to try that tonight.
If your mother was prescribed medication it could be affecting the neuropathy. You might want to check that out.
I see people on this site have shared a lot of good information. Stay positive. Everybody has a different recovery journey.

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@tessie63

I am so sorry to hear about your ongoing battle with cancer and I’m sure your treatment with radiation takes a toll on the emotional and physical aspects of your body. It would be nice for you to get it over with already and carry on with life.
I live in cold Saskatchewan, Canada. I prefer the warmer months here but, unfortunately, that is the shorter season here.
You are indeed lucky to be treated by the clinic in Rochester. I was there for the treatment of sarquidosis years ago. Our health care system sucks here! My friend has been waiting for over two years now to have her colonoscopy. For most of us, going to the US is just too expensive. The surgeries here have been held up due to Covid and we are experiencing a lack of nurses and doctors now to man the hospitals. Many were burnt out and just did not return. If your doctor recommends any number of tests you could wait months to get them. It’s
sad for so many who need care now and can’t get it.
I wish you the best of health in the future. You sound like a strong very upbeat person. Remember, we are both on the right side of the grass, for now anyway so we just have to make the best of each day. If I sometimes feel life is not fair I go off by myself, taking a good supply of kleenex, and have a good cry about it. It makes me feel so much better! Keep in touch.
Carol

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@tessie63 Carol, Thank you so much for your what you wrote and especially for your final paragraph. It is validating to think about how we are both "above ground" or "The right side of the grass", isn't it? It's a good reminder to me to make the best of every day.

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