Neuropathic Pain

Hi

I too have had pain since I started taxol, been finished since march. Pain has not stopped, from my heel to my hips, then across my shoulders to both arms. Doctors were not believing me but now I'm pushing for physical therapy. my family dr. Also suggested lyrica , maybe fibromyalgia?

Cindy

I presume by now you've tried all options that are standard in the US? I don't know what Normast is, but never have seen much luck with topical capsacin. That said, you've been suffering for a LONG time. Research the hell out of what they do in the Netherlands, and go there if it feels right.

I have a nerve like that. I tried the lidocaine patches then went to lidocaine creme. Mostly, though, I just took a vicodin when it got too much for me--the med just made me a little drowsy and took my mind off the pain. I just had fat grafting for reconstruction. I told the PS about the wonky nerve, and the she put fat in that area, so I'm hoping the nerve is covered now and feels better. It's a little too soon to tell if it's helped. If you PM me in a few weeks I can tell you whether it worked or not.

I JUST started having unbelievable neuropathic pain in my right hand.  It actually wakes me up!  Horrible.  I feel like my hand is on fire.

It seems to help if I soak it for an hour, but am now on Gabapentin............and lortab.

I finished chemo a year ago, so I thinks it's the Aromasin.

I'm exercising and am a vegan.....but man, I'm almost ready to bag the Aromasin and just take my chances.  This is just plain brutal.  I like Lifelover's idea of massage and accupuncture.  Heck, having needles stuck in this hand couldnt be any worse!

Love,

michele 

Hi there,

I am newly joint your group. I suffer from neuropathic pain right after the first dose of docitacxel which was infused in Sept2011. I also ended up in to febile neutropenia and hospitalised for a week. The doc decided to stop docitaxicel and changed it into pacitaxcel with a weekly infusion regime for 9 more weeks. The SE so bad that I had my nails fallen off, hypersenitive in both amy hands and foot. Now it is 5months since my last chemo. The pain is slowly improving with the gabapentin. Does anybody has the experence that how long it take to completely go away? Do we have to live with it? 

Lifelover: Gabapentin can also make a person loopy just as Lyrica, but everyone reacts differently to meds, so I am hoping that it works for you.

I had another Lidocaine infusion by IV a week ago, so I am feeling much better for now.

My pain doctor was asking me about the spinal stimulator for pain again. Once again, I turned him down.

I am getting irritated with him. I had sentinel nodes removed on both sides and I have signs of LE on the right side (there is no certified LE therapist within three hours of me and it is impossible for me to get there) and he argues with me everytime that there is no problem.

I am very hard to get ivs started. He is very fussy and ass, but hes the only choice I have for pain management right now. He had the iv tubing in the vein, got pissed off about something and literally BENT the tubing while it was STILL in my hand. I saw it rounding and bulging out my vein. What an asshole. I have bruising all over my hand again. If he would just settle down and relax he would get it. This last time he put my bed in the damn hallway (the procedure rooms are very very small). I think this violates HIPPA laws. But what can I do? There are only two pain doctors in my area now.And I don't want to see the other one. The good ones had to leave because of confilct between the hospital and the anesthesia clinic they work for.Even the nurses hate him. We bitch about him in the room when hes gone. We have a saying now...."What goes on in the room, stays in the room." I have to say though, they have the best bunch of nurses I have ever had. I look forward to seeing them.

the neurontin didn't agree with me, bt so little drugs do these days.. im left to use nerveen, a topical gel, on my hands, which are the worst. i'm never w/o warm socks, for my feet, anymore.. very attractive in the summer w/ sandlas. but comfort over fashion, thats' for sure!

  i have a double whammy.. diabetic neuropathy, and taxotere on top of that.. my right hand just "sings" the whole 24 hrs. but i find my compression garments for the le there, eases the pain. i wear gloves, warm ones, when im not wearing those. the warmth helps with the pain, a lot.......3jays

A spinal implant pain stimulator was recently suggested for me. I researched the hell out of it as I have lymphedema and wanted to be sure of the risks and complications. Turns out the makers of the darn thing have a video at their site about contraindications. It is contraindicated for diffuse pain! I learned also, elsewhere on line, that it is contraindicated for lymphedema as it increases lymphatic flow! There is no way I will take the risk of worsening my lymphedema. And why don't the doctors know that the makers themselves don't recommend it for diffuse pain? I have a lousy HMO for the first time in my life. Every single pain management doctor in my network is also a rehabilitation doctor. I've had all the rehabilitation this body will take and the only rehabilitation that doesn't make my pain worse is the LANA decongestive massage therapy. GEEZ! Just folding one load of laundry and I need to put my arm in a sling to relieve the feeling that my shoulder is being pulled out of its socket!

I am happy to see we are finally addressing the pain from treatment! This is a much needed discussion topic for me! 

Thanks Lovegolf, I'm going to ask my GP about a cream with these ingredients.  My hands and arms are quite painful.  Feet too but not as bad as the hands.

I saw my oncologist yesterday and I asked him whether I could stop taking the tamoxifen.  I asked him whether there was any certainty that the tamoxifen would keep me alive significantly longer.  His reply was "without a doubt" the tamoxifen will keep me alive longer (this is my second cancer in 18 years).  He said perhaps next year he will change me to femara (letrozole).  

I asked my oncologist whether the neuropathy in my hands, arms and feet were due to the tamoxifen and he said no, it was due to the chemo.  He said that he expects the neuropathy to resolve within a year.  Last time I saw him he said he expected the pain to resolve in a few months.  They don't really know do they? 

By the way, I've been on a 900mg dose of gabapentin now for a couple of weeks and I feel a bit less pain.  I'm going to ask for an increase in the dosage when I see my GP next week.  I'm also going to ask for an increase in the amytriptaline I take at bedtime - I now take 30mg.

My doctors were concerned about my high heart rate which is due, in part, to the pain medications I'm taking.  I had an echocardiogram and all looked normal so I've been okay'd to take higher doses if I need to.

Does anyone who's taking pain meds have decreased respiratory function because of them?  

I'll let you know how I get on. 

Lovegolf, I was wondering if you are using the cream on your entire upper arms. I have been using a compounded cream with amitryptiline, baclofen, + ketamine in a lipoderm base for my fingers. Not sure if it is helping, but it might be taking the edge off. I still have to limit typing and cannot play piano more than about 10-15 minutes, and then not loudly! But I have severe burning pain in my upper arms that my MO has just blown off that I wonder if this is similar to what you are talking about. It started with burning pain and feeling of such heavy weight that I could not move my arms or get up to the bathroom about 2-3 weeks after my last chemo - legs were affected then, too, but not now. This pain comes back when I am tired. It is not in the muscles, like the kind of soreness that can be managed with massage or ibuprofen. It is just kind of "under the skin" type of burning, with weakness so bad I just cannot make myself move sometimes. This gets better if I am well rested. And I still have searing burning pain across my chest under the surgical area, again worse with fatigue, better when I am rested. So I am wondering if the cream that you are using can be used in larger areas than just fingertips that I am currently treating.



There was a clinical trial by Deborah Barton (google chemotherapy induced neuropathy Barton) and you can get some more info. I think her studies were done in 2010 and I don't think published yet, but my toxicologist contacted her to get info on the ingredients and has it compounded for me.



I have tried several oral meds (gabapentin, duloxetine, venlafaxine, tramadol, etc etc etc - all had systemic SEs that I just could not tolerate). Currently take acetaminophen/hydrocodone once a day to get some relief, and would certainly be interested in topical if it would help!

I put cream above , below and on surgery line as the pain would move.

Lifelover, the amount of medication absorbed through the creams is less than that when taken orally, so you might ask for a pain specialist (although in the UK I don't know how successful you will be) or someone who is willing to try some non-standard approaches. The cream I use has amitryptiline in it, which can cause cardiac problems if too high dose, but in the cream, it has been shown in studies that the amount absorbed is minuscule so affect on heart and other AEs is absent. It may have something to do with the cream itself as to how much is absorbed locally and how much is absorbed more systemically.



That being said, I am not sure how much relief I get, but have less pain with cold - I can now pull something out of my freezer without wearing gloves!



I am an amateur musician, have studied all through school and played in community band & orchestra before, and cannot do that now. Also have trouble typing or doing fine needlework - anything using my fingers. I don't have the wrist pain, but I know how frustrating it can be to deal with this. I tried the gabapentin, but it made me "stupid" in that I couldn't think of words to do my lectures or meet with students or even hold a normal conversation; it might have helped the pain, but I wasn't functional so had to discontinue.



Lovegolf, thanks for the info. Can you pm me with the info on the cream so I can share with my doc? Thanks.