Vent about Permanent Neuropathy

NotBtoken, I am thinking the same thing. I’m on gabapentin and Zoloft ... wondering if cymbalta could cover for both? I’m going to email my dr. ..

Hi NotNroken

My Dr is very supportive of the switch from Zoloft and Gabapentin to Cymbalta to cut down the # of perscriptions I take (she already called in the Rx). She says to stop Zoloft and start Cymbalta on the same day, wean off Gab over 1-2 weeks, monitor my neurothapic pain, and see her in 2 months! I'm going to give it a try.

Lanne

I was off Tamoxifen for about 4 months (gave myself a vacation). The bone pain stopped but not the hot flashes. I had been taking 900 mg Gabapentin at night and duloxitine (Cymbalta) during the day for pain, along with the Tamoxifen. Apparently, you have to keep bumping up dosages because you build up a tolerance. I have restarted the Tamoxifen at 1/2 dosage (3 weeks ago) and the bone pain is back. I'm losing hair like crazy. I get the fast come/go nerve pain here and there (I call them zingers)but am willing to deal with that for now, just to be off some of the Meds I was on.

Just plain Claritin or Claritin D? I'll give turmeric a try also

actually, it was for pain caused by the drug you take to elevate white blood cells during chemo - residual chemo brain prevents me from remembering the name!

Lann

As for me I seem to be doing a bit better lately. I fluctuate a lot but for whatever reason the burning has decreased, though the weakness persists, but in thinking back to where I have been when at my worst even that is improved. I can remember mornings when I would stumble and hang on walls to get to the kitchen to make my coffee, or awakening in the night and struggling to get to the bathroom. I have not been like that in over a year. I am four and a half years out from my last chemo and I have to believe it will only continue to get better. It is very slow progress but progress none the less.

I went to have testing to see if Vestibular Rehabilitation might work for me. Lisa from San Diego reported on this & if I remember correctly, it helped her. Since I lost all my hair, it stands to reason that the hair in the inner ear was affected. And did it grow back? Obviously they can't see the inner ear, but they have ways to see how your body/brain/eyes/ears are working.

The tests were over 2 hours long and sort of obnoxious - but worth it to me if my balance can be improved. I haven't heard from the doc yet, but the tech didn't think there were any major problems. Still she believes the doc can give me some tips to help my balance. It would be so nice to wash my hair in the shower w/o losing my balance; or walk along with out having to focus continually on my feet instead of the trees or birds or oceans.

i have done vestibular rehab, hard to say if it helped, vfery much based on the therapist. For me what is helping lots is the pt at my cancer center, therapist is much better and she has access to all my tests and treatments. She also suggested i do occupational therapy as that is a separate linenitem under medicare. My therapist there is also bug help. My cancer center is Sloan Kettering and i am really pleased with how they organize things

Mucki - if you haven't been to see a good neurologist, that would be my next step. There are tests they can do to confirm CIPN and drugs for the pain. I was told that nerves connections can improve for several years post chemo - although better may not be back to where you started.

Are you on your feet a lot with your job? Is there lots of walking?

I'm fortunate - I just have dead feet. Sounds funny since we all know the balance & injury issues that come with that, but I don't have pain. It hasn't stopped me from doing much, I just have to do it slowly and watch my feet all the time so I don't trip on cracks I can't feel in the sidewalk.

Hello All,

I have question that may be answered here. I developed neuropathy during chemotherapy. It wasn't painful, but it was tingling and numbness that I felt. It started with my toes and by the end of chemo (8 sessions) it also included my fingers....just tingling and numbness, no pain. Chemo ended November 2017. Well to speed things forward I went to Primary Doctor who prescribed Gabapentin 300mg in February 2018. I waited until March 2018 to try them. It did not seem to help the neuropathy, but did wonders to help me sleep 💤 through the night. Well, I took them on and off from March until recently (the bottle had 30 capsules) I have 3 left. Last night I noticed increased tingling in my fingers but as I had fallen asleep in the lounge chair, I kinda ignored it on the way to my bed. However, today first thing in the morning it was still going on and throughout the day. It is as intense as after chemo. I’m also on Tamoxifen for 6 months now. I did get another manufactures brand this time, and I’m at the end of this bottle. I would appreciate any insight you all may have. Thanks so muc

Well, I think things can be variable : recede and flare up. I have had CIPN in the tips of my fingers and toes since the final chemo. Things were mostly okay, but since Nov. I had increasing tingling. I'm in physical therapy now and am going to get nerve testing. Radiation may have caused minor cording, which can make your hand tingle. Try some moist heat

i do not seem to get any relief from nuerontin, was doing 300 tab 3 times a day

get a referral to neurology to get a good evaluation

Thanks to all of you wonderful ladies for all your replies. I saw the oncologist this week Thursday and he stated it was unusual for neuropathy to be on the mend and then to overnight feel like it did right after chemo. He referred me to a neurologist???? I will keep you all posted. This is quite annoying!!! I’m trying to be patient with my body.

H

Hi ladies humble peace and I have been pming about symptoms and such so I came to his thread. I notice many of you had AC (cyclophosphamide, doxorubicin) then taxol? Anyone have ((Docetaxel(Taxotere) + Carboplatin + Trastuzumab) chemo followed by long term neuropathy? I also had Herceptin but while it says it can cause Neuropathy no one talks about it.

I would be very interested what you guys think of the new webinar on the homepage about neuropathy. He mentioned that certain chemo hits the nerve axon and certain chemo hits the DNA. He described my neuropathy perfectly as it came on about 4 months after chemo and was on both hands and feet.

He didn't have a lot of great solutions though.

I was on arimidex but the bone ache was horrible, I could deal with it in combination with the weakness and tingling in my hands. I tried fears and then moved to tamoxifen combined with effexor.

I have thought about moving back to arimidex because more medications in the SSI category are available. For example Lyrica I don't think I can take with Tamoxifen. I have to say that effexor in the lowest dose does knock out the hot flashes and give a bit of relief of the neuropathy.

Gabapentin was not helpful as a sustainable treatment as it wiped out my feeble remaining chemo brain short term memory. When driving I would pull over and not know where I was going (I am 45)

I also tried chlonadine (I think that is the name) but it made me light headed and I felt faint.

Because I have exhausted what I think I can do pharmaceuticaly on tamoxifen I am branching out to other area.

Right now I am pursuing methyl vitamin B complex and B12 shots and vitamin D . I am also cosidering a more drastic diet change for 12 weeks because I read of a small study where diabetic neuropathy improved quickly with a vegan diet. I could do it for that long but I know that chemo neuropathy is different. I will report back if it helps it isn't a difficult diet for me to try as I am raised in farm country and already don't drink Dairy. I am one of those wierd people that likes almost any kind of vegetable.

I have the option to do either intense tens therapy on my hands or acupuncture will try that in September as it's off my insurance and I am saving up for it.