CIPN CHEMOTHERAPY INDUCED PERIPHERAL NEUROPATHY

RacheltheMultiTasker

I'm looking for women with CIPN. Mine is from Taxotere. Know that other chemo's have had the same side effect.

I've had it for 18 years. Four LARGE DOSES of TAXOTERE. I'm demyelinated from my feet to the white matter of

my brain. When Pain hits a 20 on the 1-10 Pain Scale, I take a 5mg pill of Oxycodone. Have been doing that for about

7 years now. I also use Bio-Freeze and T-Relief (used to be Traumil). CBD has been recommended. When I looked at the

ingredients, Arnica was one of them. T-Relief has been my Arnica-Go-To. Do 1 hour each of PT and Cog Rehab every day.

Also now am doing 3 10-minute sessions a day for Visual Rehab. Understand that from 40-70% of those who had the

4 Large Doses of Taxotere now have CIPN. Understand there's also a Neurologist in Chicago who specializes in

demyelinated nerves and keeps a Registry on CIPN for a Foundation. Am going to see her in April. Would love to have a

professional discussion of CIPN. Is it really permanent (probably yes) and progressive (any stats on this)? I had to drive from Tucson to Phoenix

to find a Neurologist who would check me once a year to see if I was the same, regressed, or improved. The only ones I could find in my

town would only recommend changes in meds...which I don't need or want. Am highly allergic to boot! Would love to have even a

Discussion Group to see what's out-there and working! We really have become an "orphan" group. Thank you for this website.

It's been a great help over the last 18 years since diagnosis and treatment in 2001.

MinusTwo

Rachael: There are several threads addressing this subject. Below is the link to the one that's most active - Vent about Permanent Neuropathy.

https://community.breastcancer.org/forum/69/topics...

I recently saw something about lazer therapy and sent my neurologist a message to see what she thought. Apparently it's only experimental and not "ready for prime time" yet. You can believe I will be watching.

18 years is a nightmare. I've only been dealing with this for 6 years and fortunately I don't have much pain - just dead chunks of ice for feet and no balance.

RacheltheMultiTasker

Dear Ones, besides Minus Two, who responded to my post.

Do you notice that this is just a "vent"...not titled CIPN. I was hoping we could get one entitled CIPN...because that's what mine is.

Other diseases, besides breast cancer, have permanent neuropathy that gets progressive. Very grateful to Minus Two who gave me the

words to get to all of you. Having 18 years "in" I'm very willing to listen and to respond if asked. I had 2 years of fantastic Cog Rehab.

Got my words and executive function back. Am also hooked into the Foundation that deals with CIPN. Am hoping some one can tell me HOW TO

respond privately to one of you. mega ehugs to all,

MinusTwo

Rachael - what I've found is that most people don't know what CIPN means - including 90% of my doctors & nurses. When I list it as a medical problem, most people just go - well, OK.... Of course that gives me a chance to explain what it is, but that's not good enough.

I even had a podiatrist who turned in to Medicare that my diagnosis was diabetic neuropathy. I've never been diabetic but Medicare won't change it unless that specific doc changes it - and they just don't care enough to bother. Needless to say, I no longer see that doctor but my permanent records are compromised. My only option would be to file a lawsuit against the doctor. Grrrr.

RacheltheMultiTasker

Hi, Minus Two...if that means a double mastectomy...me, too. We turned out to be a high-risk family. Did the genetic counseling. When I meet a new doctor, I actually bring her/him copies of whatever research article is relevant. ...and...you're so very right...most doctors and PA's have never heard of CIPN. Think the initials didn't come up on NIH before about two years ago...maybe three. Don't know exactly. They're now on Medicare's insurance forms as CIPN. I had 2 years of Cog Rehab under Medicare. There's a second tier after the approximate $2000/year one can spend. The criteria is: are you showing progress and still need to continue in rehab. Had an incredible therapist, homework every day, which I still do, and have a neurological psychologist who does nothing but test people with cog problems. Have done the test twice. It's about 5-6 hours long, quantitative and exhausting, but well-worth the time. Second time definitely showed progress. Will see him once a year from now on. Very hard to find him. A walking buddy knew a psycologist during a race event. My buddy asked her. She didn't know, but she said she'd ask around to her colleagues. They got back to me with this neuro-psych man...who's incredible. He issues an 8-9 page report of quantitative data on the testing. His conclusions hit the two areas I was having trouble with...perfectly. I just got lucky. fyi: he did know what CIPN was and recommended the therapist, who also knew what was going on with CIPN and CODED it properly. Are you symptomatic from CIPN? You mentioned balance. That's a for-sure. How about fatigue...and a few other choice items. I found a research article on Neuroregenesis a few years ago. Love it. Wasn't on Rats or Dice & Slice of one's nerves. It was quantitative on real people. Showed an increase in speed of finding words and also some regeneration of myelination. ...about 32 people...treatment...a regular walking program.

MinusTwo

Interesting Rachael. I don't think I have any real cognitive problems, but one of my angers about cancer is ... I will never be able to tell whether many issues were caused by cancer & treatment or aging. Pisses me off frankly, but oh well.

I'm always willing to explore another avenue. Where do this doc & therapist practice?

RacheltheMultiTasker

Both practice in Tucson, AZ.

Dr. Scott Belanger, AZ Neuropsychology Associates--- and Susan Schuster, M.A., CCC-SLP, Cog Therapist. Susan's at Oro Valley Hospital OutPatient Therapy. Scott saw the pix from my brain...could see "disruption" there and reported it in his first report. Not sure if it was a cat scan or an MRI.

MinusTwo

Rachael - that's a bit far for me to travel, but thanks for the references. If I ever get to Arizona again I may try to make an appointment.

Michelle94904

Hi from California - I'm curious about comments here (not permanent but peripheral for the P in CIPN) especially since this group is from October 2019 not 2008. Started TC chemo on 10/1/19 - 4 large doses. Have progressively had pain problems standing up in the morning, then standing up after sitting down at dinner/at my pc/in the car. Getting so bad I finally called the oncology nurse hotline and she said sure sounds like Peripheral Neuropathy which is common in TC chemo treatments. She sent me 3 pages of recommendations, attached, and will talk to the oncologist Monday. So far tried CBD on my feet, which definitely gave a fuzzy-feeling effect but didn't make the achiness go away.

MinusTwo

Updating with the link below - a marvelous podcast that the Mods hosted. Take a look.

https://www.breastcancer.org/community/podcasts/ne...