Nerve Damage - CIPN & RIBP

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2015
  • bhd1
    bhd1 Member Posts: 3,874
    edited January 2015

    what do you guys do about Cutting your fingernails and toenails? I can't do it anymore

  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2015

    barb, can you use a clipper? Does your insurance cover podiatry for your toes? Can you rub fingernails across a stationary nail file (or very fine sandpaper)? Just some thoughts. An occupational therapist might be able to help you strategize on this and other struggles.

    Hugs,
    Binney

  • bhd1
    bhd1 Member Posts: 3,874
    edited January 2015

    Podiatrist might be good idea. What about fingernails?

  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2015

    How about a sanding block (available at Lowes or Home Depot) with a very fine-grain sandpaper? They're heavy enough to hold still while you just rub your fingers across them, so you don't have to use your other hand at all. Here's one:

    http://www.weekenddetailer.com/meguiars-finesse-sa...

    These everyday self-care issues sure do get frustrating, don't they? Of course you can always get a manicure--schools where they train manicurists are usually cheap, as students do it with supervision.

    Let us know what you discover!

    Hugs,
    Binney

  • bhd1
    bhd1 Member Posts: 3,874
    edited January 2015

    thanks binney. I will try that. Doc says to be careful at nail salons. I am high risk for infection because of chemo. Someone said I can bring my own tools to the salon.

  • bhd1
    bhd1 Member Posts: 3,874
    edited January 2015

    so grateful for the support here. I go to pt for ribp. Therepist does rather intense stretches. This is helping w range of motion. But I worry about my Le in the same arm. Do you think I should wear my sleeve and glove to pt?


  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2015

    barb, this is one of those things that you can only judge by trial and error. Are the stretches causing LE swelling? If so, how about having your RIBP PT consult with your LE therapist?

    LE, as well as chemo, make infection a risk with salon manicures, but there are precautions you can take. Here are the suggestions from the "How you can cope" page at StepUp-SpeakOut:

    Regular Manicures

    • We can continue to get regular manicures. We simply must take certain precautions. It is always better to take your own manicure "tools" with you, and most salons give you a little "box" to keep them in at the shop.
    • Do not allow your cuticles to be cut, but have them gently pushed back.
    • Keep your hands well moisturized between manicures, and gently push your softened cuticles back gently with an orange stick.
    • When coming home from your manicure be sure to give your fingers an "alcohol dip" to make sure they are germ free, and I also cream my hands with Lotromin (anti-fungal cream) in case I could have picked up any fungus.
    • Also, we find the longer you keep your nails, the more little "shovels" you have for bacteria, germs, etc. So, we always keep a nail brush near the anti-bacterial soap and wash and brush under the nails frequently throughout the day.


    Hope some of that helps! Hugs,
    Binney

  • bhd1
    bhd1 Member Posts: 3,874
    edited January 2015

    I have a le therepist but she is not knowledgeable about pt. Thx

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited March 2015
  • Kassjanine
    Kassjanine Member Posts: 1
    edited March 2019

    You cannot believe how much your posting has helped me right now. I am a survivor since 2004 and have had progressive CIPN. It started in my feet to hands where my breast cancer surgeon called it “Stocking Glove Syndrome" and told me it was from the Adriamyacin and Taxol that I had received. I too do not do drugs well and just have learned to live with this with minor relief from topical creams and Tylenol. It has progressed to throughout my body with the left side of my face and chin becoming numb a week after a rigorous dental exam last year. When I went to my primary MD about the numbness she sent me through a slew of tests such as an MRI, extensive blood work, EMG, chest x-ray, gastroscopy, colonoscopy (the same you mention) because my physician did not understand or believe in CIPN so she was hell bent that I had MS. In the end, the EMG showed that I now have polyneuropathy throughout my body. The numbness in the face lessened dramatically through the year. This was last year and now this year I have suddenly developed the numbness and my teeth shifted slightly over. My doctor thought I had a stoke so sent me back to the neurologist (who by the way claims there is no such thing as CIPN). He first wanted me to go to a dentist but also had a MRI of my brain again. I received the results yesterday and it shows severe inflammation of the TMJ joint and nerves. Argh. He is now ordering a bone scan and I am terrified. I am finding comfort in reading so my posts from survivors about CPIN in their upper torso and in their face. My brilliant surgeon who just retired after saving thousands of lives through the years, told me that's “I have seen CIPN throughout the entire body including the face". So even though a am so aftraid of the bone scan, I am taking some comfort in the fact that this is probably just the neuropathy in my face which is getting worse. I think that if I had something more serious such as a tumor growing, it wouldn't have come and lessened last year. The bottom line is there are a few providers who truly understand our condition which impacts treatment as they acted like they did not believe me last year and if I do now have a tumor growing, a cat scan should have been ordered a year ago.


  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Dear Kassjanine,

    Welcome to the BCO community. We are so glad that you found us and are so sorry about all that you are dealing with. We hope that you will find support and helpful information here as you continue to tackle these side effects. Please note that while this topic had been very active, its most recent post was from 2015. If you do not receive timely responses you may want to initiate a new topic on this subject. Let us know if we can be of help in any way

    The Mods

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Dear Kassjanine,

    Welcome to the BCO community. We are so glad that you found us and are so sorry about all that you are dealing with. We hope that you will find support and helpful information here as you continue to tackle these side effects. Please note that while this topic had been very active, its most recent post was from 2015. If you do not receive timely responses you may want to initiate a new topic on this subject. Let us know if we can be of help in any way

    The Mods

  • miss302
    miss302 Member Posts: 34
    edited April 2019

    I also have RIBP & CIPN.

  • maryna8
    maryna8 Member Posts: 1,810
    edited April 2019

    I do not have RIBP, but do have CIPN. Although I have been coming to BC.org for over 4 years, I hadn't seen this thread before. I do hope Cincerely is okay, she is so articulate and is so severely affected.

    I also have systemic nerve damage, not much pain but tingling, sometimes burning. Weakness, which is the thing I hate the most. As Cincerely said, you cannot exercise your way back to strength with this, I tried and injured my knees. I am recovering from shoulder surgery now; rotator cuff, bicep tears, and bone spurs. I am hoping to get some strength back in arm after this. Always optimistic!

    I have stopped telling most people what is wrong with me, nobody understands, except here

    Best wishes!

  • cowgal
    cowgal Member Posts: 833
    edited October 2020

    I finished taxol on December 30, 2019 and had radiation therapy that ended in March 2019. I am left with a couple of spots of neuropathy in two of my fingers and part of the bottoms of both feet. In April, I started having low back pain, sciatica going down my right leg and pain in my right hip and right buttock. It is very painful. I had an MRI that showed some issues in my lumbar and I completed physical therapy. Physical therapy did not help me very much and my physical therapist said I need to get back with my spine doctor to plan surgery. I know that the fingers and feet are from the Taxol but has anyone experienced these other symptoms from chemo or radiation?

  • countca04
    countca04 Member Posts: 44
    edited October 2020

    I finished my treatment of KADCLYA in March 2020 mainly due to the many side effects. Neuropathy of my feet was getting bad, at that time only numbness of first 3 toes on each foot.


    Now, months later I am getting pulsating, tingling effects under mainly my right foot (had right mastectomy ? not sure if any connection)...It wakes me up at night, hence its 1:15 am and thought I would come to this site for some clarity and answers.


    who knows which treatment caused this ? had it all, chemo, Perjetta, Herceptin, radiation.....Kadclya? On letrozole for 10 years apparently.


    thank you for any comments,


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