Vent about Permanent Neuropathy

I did not get told about anything to lessen the side effects from Taxol.  I only had 3 treatments before it put me in the hospital and took it away.  My CIPN got some better but feet and finger tips are still awful.  I was one that started loosing toe nails 5 months after they stopped chemo.  Lost all finger nails too but lost those right after stopping chemo.  

Give it a try...anything is worth a try.

GwennyMD,  Even tho' I had different chemo agents, your story is so familiar.  My last chemo was 8/19/13, and I had a few good weeks before CIPN began in Sept.  I actually went ion a cross country road trip to move my son out to college at the end of Aug. and am sure I did not have any foot complaints at the time.  My hands are not affected either.  

In the early months of Sept./Oct./Nov. I had pain that felt like cold/crushing.  I had PTx6 with Anodyne Therapy (it uses far infra red.)  At the time, it did not seem to do much but, looking back, by end of Dec./Jan., the pain had given way mostly to just numbness.  

My new theory is that the pain does not just come from damaged old nerves.  I am wondering if the pain does not come from strange and irregular growth of new nerves because they don't get "wired" properly.  This thinking is because a lot of us don't get pain until the chemo is over, when you would expect our cells to begin the repair process.  But the nerves are repairing themselves in a crazy, jumbled way now.  Oh well, just an idea, probably wrong since this does not seem too difficult for science and a good anatomist to check out.  I'm always trying to understand why I am like this (and when you are numb every day, it's just a reminder to keep thinking about these things!)

A few posts back, I listed the degree of numbness in each foot. I think
I am about at 30% for lefty now, and 40% for righty. Left toe feeling
somewhat human, right toe still a foreign object.  So, that is a tiny bit of improvement, I think.

A good night's rest is KEY to having them feel a bit better.

Elimar & SoCallLisa

My post 781 above mentions the freezing therapy I'm using for my Taxol treatments in an attempt to prevent or lessen CIPN.  Already had some nail loss from AC as well.  Several women told me that acupuncture helped prevent neuropathy and nail loss.  I just returned from my first acupuncture treatment ever.  I was concerned that it might be uncomfortable, but I was actually able to relax through the treatment.  Don't know if it will work, but worth the effort is how I'm looking at it.  I will go approx. once a week for the rest of my weekly Taxol, and then maybe every other week post chemo for awhile.   

I had many acupuncture treatments for my feet. They helped some and got circulation higher. The acupuncturist was an MD.

Maybe acupuncture may help. See a recent clinical trial study below.

http://clinicaltrials.gov/ct2/show/NCT02129686

A Pilot Study of Acupuncture for Chemotherapy-induced Peripheral Neuropathy in Breast Cancer Patients

First received: April 30, 2014

Sponsor:

Dana-Farber Cancer Institute

Collaborator:

The Comprehensive and Integrative Medicine Institute of South Korea

Detailed Description:

Chemotherapy
drugs used to treat cancer can cause temporary or permanent damage to
the nerves in the hands and feet, a condition called
"chemotherapy-induced peripheral neuropathy". The most common symptoms
of chemotherapy-induced peripheral neuropathy are pain, tingling,
burning or numbness sensation, which can lead to balance problems or
trouble using fingers or pick up/holding things. These symptoms often
last months to years after the completion of chemotherapy. Medications
and nutritional supplements can ease the symptoms of
chemotherapy-induced peripheral neuropathy, but many patients continue
to experience symptoms despite these treatments.

Acupuncture is an
intervention in which hair-thin, stainless steel needles are shallowly
inserted into specific points on the skin, with the goal of influencing
the body's natural healing system. Acupuncture has been studied in
clinical trials in cancer patients and has been shown to be effective
for various conditions including chemotherapy-induced nausea and
vomiting. A few preliminary studies have suggested that acupuncture may
help to reduce symptoms of peripheral neuropathy, but more information
is needed about the benefits of acupuncture in breast cancer patients
This study is being done to evaluate the potential benefits of using
acupuncture to reduce symptoms of tingling, burning, numbness and pain
in the hands and feet of women with peripheral neuropathy after
completion of chemotherapy for breast cancer.

This research study will
help to determine the benefits of acupuncture for the treatment of
chemotherapy-induced peripheral neuropathy. The study will also look at
two different acupuncture schedules to determine whether patients derive
benefits from lower and higher dose acupuncture treatments.

Has anyone had significant recovery from neuropathy, then had another chemo that has the potential to cause CIPN? My MO said there are several options for treating my cancer now, but all of them include chemo drugs that have the potential to cause CIPN. It took nearly 4 years for mine to settle down enough so that I can do some cooking, some gardening, and I don't have a creepy feeling when touching my DH or my cat, but I still get tingling and pain when on keyboard for prolonged time, like 30 minutes or so. I just cannot deal with the idea that I may get it again and my life my not be long enough to recover from it IF I get it to allow me the pleasure of petting my cat and DH. Is this an unreasonable fear? Am I being unreasonable for declining the chemo? There is just one more drug we are going to try next week that does not cause CIPN, but if it doesn't work, not much left. Looking for ideas, suggestions, support, "devil's advocate questions", etc. I am finding it difficult to see the "big picture" and not seeing a clear path. Thanks.

Linda - what Eli said times two.  I'm so sorry you have to make this choice.  I'm really big on quality of life over just "more time", but I don't know what my choice would be - even though I have thought about it.  When I complained about the neuropathy during my first batch of chemo, the MO gave me the choice at tx #5 and tx # 6 to cut back or skip.  I went ahead w/the full doses since I'm not hormone positive and don't have lots of other options. I still don't know if the neuropathy was worth it.  I agree about the research.  Maybe some of the drugs are less damaging. I think age & family make a difference too so you'll be considering your circumstances.  I'll be 70 this year, and am single, and don't have grandchildren, so some of my choices might be easier.  I'll keep you in my thoughts as you wrestle with this difficult decision.  Please keep in touch.

Dear Linda-n3, 

What a difficult decision, and how well you've expressed what's at stake here. Happy for you that you've made your choice and wishing you good health and many long and happy days with your dear husband and kitty. When all is said and done, these are the things that matter most. Sending love and good wishes. 

Ann

Linda .... A tough decision.  I woke up this morning with my left leg feeling like it was on fire.  Now it's good.  Don't know what I would do in your position.  Hoping the tx you choose is kind to you.  

For any who might not have seen it, here is the BCO recap of the JCO article listing ASCO guidelines about CIPN:

(I think that is my personal best of getting 4 acronyms into one sentence. Heehee!)

http://www.breastcancer.org/research-news/guidelines-address-cancer-survivor-issues

You will notice that using B-12, B-6, L-Glutamine; or the use of acupuncture or anodyne therapy is not mentioned, so feel free to read more on those possibilities in the chance you might like to "guinea pig" yourself on one or more of those.  Above all, don't "settle" with having this SE.  Do keep reporting it to your docs, keep reading and keep trying to find relief.  In other words, try not to give up.

-----------------------------------------

I'm finding that walking barefoot on grass and pavement feel weird on my feet.  

Early on I went to an OT who tried to use some "desensitization" techniques, like touching all kinds of textures, including towels, immersing hands in rice, etc. Nothing really worked, but I do recall the towels were not real fun.

I like to put my feet on cool surface like the metal on chair legs!

Bad burning pain today so I invited " Mary Jane " over.      Feeling much better.