Nerve Damage - CIPN & RIBP

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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

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

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?

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

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.

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

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!

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,