Share important questions and provide support to others experiencing breast cancer and treatment-related pain.
Posted on: May 12, 2012 11:45PM
I have been posting for some time now, and have finally figured out that my relentless, nearly unbearable limb pain is due to chemo-induced small fiber neuropathy. Not fun. I found a neuropathic pain center in the Netherlands where they are using capscain cream and Normast to treat the problem. Does anyone have any thoughts? I am at the end of my rope.
Posts 1 - 30 (59 total)
May 13, 2012 02:47PM FLislander wrote:
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?
May 14, 2012 08:40AM AnneW wrote:
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.
May 15, 2012 03:32PM - edited May 15, 2012 03:35PM by cinnamonsmiles
I have been suffering from severe PMPS since the moment I awoke from surgery 1/11/11. During my node dissection, nerves were knicked and I have terrible neuropathy from it. I take 2100 mg of gabapentin, 400 mg of a muscle relaxer called Metaxalone, 50 mg of Tramadol as needed for pain ( I try not to take three pills every day as it combines with the other meds and makes me sick),25 mg of amitriptyline (helps me sleep at night and for some is found to combat pain). In the summer of 2011, the pain clinic tried Nerve Block (stillete ganglions) shots the neck (targets my area of nerve damage pain). I only got at most three weeks of relief. One of the doctors then suggested a Lidocaine IV Infusion, given thru iv obviously. I get the most relief from that. I can get four weeks of great releif, then it wears down. I am now at my 7th week, and I notice that I can do more activities, but it gets extremely painful. Yesterday I was in tears again. My right arm is worse than the left, so I wore my sling. My chest felt disgusting. My clothing felt like burning sandpaper on my chest.
I was informed by my newest pain dr. that the IV infusions would not last, eventually they would begin to be less effective. At that point, there are spinal nerve stimulators that can be inserted into the spine that retrieves and sends messages to the damaged nerves causing the neuropathy. First, however, there is a way to do it without putting anything surgical into the spine to see if it works. The second thing would be to surgically implant something into the spine. I am really not looking forward to that, and don't think I would attempt the surgical application of the stimulator into the spine because it appears that I can not have a surgery without complications and don't want anyone messing with my spine. I have chatted with two people online who did have that done and have miraculous results.One man had horrible back pain that was gone with the mechanism.
I do think there was another shot the doctor was going to give in my back to help the arms, chest, and part of the back, but I declined that, staying with my IV infusions every nine weeks.
The pain clinic that I go to doesn't like creams. I can't remember why. I think it had something to do with it being easy to have too much in the system. I did try Lidocain patches under the back of the arms. That was a total disaster. The glue that held them was so incredibly painful to take off the patch that it did 100% more harm via pain than what I had before I put them on.
I wish you luck in your quest to find relief.
May 20, 2012 06:58AM lifelover wrote:
I'm sorry you are going through this. I know how you feel. Please let us know what you decide to do for your pain.
I finished chemo in September 2011 and have what is probably permanent nerve damage. I was lucky to be able to see the top pain specialist in London and he prescribed 30mg of amytriptaline and lyrica (pregabalin). I hated the lyrica and stopped taking it (it made me too sleepy and I couldn't function during the day). I still take the amytriptaline.
I just started gabapentin (Neurontin) and this is recommended when lyrica isn't well tolerated. I'll let you know how I get on.
I also have specialist hand and arm massage and accupuncture for the pain and have good results with this. However, it is not a cure.
May 20, 2012 09:38AM vivirasselena wrote:
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!
May 20, 2012 05:06PM FLislander wrote:
Life lover let us know as I am also on waiting list for meds. I thought physical therapy was going to help me, I started last week. Now I have been in more pain the past 4 days. Just don't know what to do. I have pain through shoulders and arms mainly, occasional in legs. Feel about 40 years older since chemo.
May 28, 2012 02:42PM YY520 wrote:
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?
May 29, 2012 02:34PM vivirasselena wrote:
The excruciating pain in my hand(s) seems to have subsided (knock on wood and praise God)...but the continuous pain in the rest of my joints seems like it's something I can't shake.
The tingling comes and goes......as does the swelling in my hands.
I put up a 14 ft. above ground pool and have committed to swim in it daily and see if it relieves or exacerbates the joint pain.
I'll let you know!
May 31, 2012 09:38PM cinnamonsmiles wrote:
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.
Jun 1, 2012 03:00AM lifelover wrote:
Sorry about the situation with your pain doctor. My pain doctor is a couple of hours away from where I live but I'm fortunate to be near a train line.
I've been on gabapentin for 2 weeks now so it is too early to tell whether it will work or not.
I have shooting pains through my wrists and fingers and my feet burn most of the day. The mornings are the worst - getting out of bed and down the stairs is very difficult because of the pain. It does get better with movement though. So, after a couple of hours of moving around I'm better.
I didn't realise how much the venlafaxine was helping me. It may be that I go back on it but not until I see how the gabapentin is working - and my doc says give it 4-6 weeks. So I'm going to be tough and deal with it.
Jun 2, 2012 12:48AM 3jaysmom wrote:
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
Jun 2, 2012 01:17AM SpecialK wrote:
Here is a link for Normast - sounds promising.
Jun 2, 2012 01:26AM SpecialK wrote:
3jays - the lack of SE's sounds great, and seemingly widespread applicability for so many different kinds of pain. Hope it is something that can help you and your doc is receptive.
Jun 9, 2012 06:16PM lionessdoe wrote:
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!
Jun 9, 2012 06:22PM - edited Jun 9, 2012 06:23PM by lionessdoe
I also have an insulated glove (more like a mitt) I wear to warm up my hand. I have to cut up 20 LB's of cold strawberries tomorrow for my daughter in law's baby shower. I will be in screamie meamie pain afterward and even though it will be 90 degrees I'll be wearing that mitt to lessen the pain. We do what we have to to get through! A real conversation starter when I greet my guests I guess!
Jun 10, 2012 03:44AM planetstrands wrote:
It takes 50 days to properly evaluate Normast, BUT I THINK IT MAY BE STARTING TO WORK!!!!!
I am no longer using the Amatryptolyne, ketamine topical compound and I really think there may be hope. I urge all of you suffering w/ chemo- induced neuropathy to investigate NORMAST. I bought it online, with ease. All sources reccomend the exact same dosage progression. It has no side effects and is a naturally - occurring fatty acid, found in the body. Nine years ago , Neurotin worked, but I needed more and more until it did nothing. Onto Lyrica, anti-depressants, lamictal and even off-label Namenda - nope. I will keep everyone posted... I am throwing a week-long celebration, if I can lose this pain. Please google Normast. The evidence is strong. Love to you all...
Jun 10, 2012 08:08PM Musical wrote:
cinnamonsmiles big hugs to you.
I am really sorry to hear your dramas with one of your team. It sounds like a nightmare and it also sounds similar to what I am going through right now with one of my medical team. I so feel for you with your IV probs. Im the same and its such a drama the only way I can get it done without problems is to have an anaesthetist do it with an ultrasound machine and a little local first, oh and in my FOOT!!!
Ive had neuropathy in my feet before BC. I have numbness shooting pains and BURNING. Its hard to get throguh to people that the burning is not hot but actually burning. The only people who actually 'get it' are those that have it. Unless it comes back, I rate it as far worse than cancer or all the treatments Ive had. I rate it worse than lymphoedema and thats saying something. I was on amytriptilene for 5 or so years and then had to stop because of fluid retention. It dropped my pain level (burning/shooting/aching) considerably.
Beginning of this year I swapped from Tamox to Arimidex and up until around a couple of months ago I was holding my own with the neuropathy. Now with Arimidex its increased it 100% Arrrrrggg!
Jun 14, 2012 02:00PM Lovegolf wrote:
I had pain for 3 years...felt like a hot wire across my chest cutting into me. THE BEST thins I got was a Rx cream that was lidocan/gabapentin & ketelog(sp). The Dr If could change the % in the cream. I could put right where it hurt and have no side effects not sleepy etc. In 15 -20 minutes I could not feel it. At the worst I would reapply every 4 hours.
Since Dec 2011 I have been working out and that has helped. But the compounded cream IS THE BEST. If you want any more information let me know. I can not say enough good about this Rx.
Jun 15, 2012 03:20AM lifelover wrote:
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.
Jun 16, 2012 03:32PM Linda-n3 wrote:
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!
Jun 17, 2012 04:44AM 3jaysmom wrote:
thanks, ladies.. i have fatigue problems with my ms/ hypothyroid, so oral gaba.. etc.. made me too sleepy. Gonna ask pain spec about the topical cream!!!nice "heads up"
to answer your question,life lover, some med i take daily does retard the breathing, a bit, but i can handle it in the doses im using right now. i use a nebulizer for times its bad... 3jays
Jun 18, 2012 07:03AM lifelover wrote:
I saw my GP today and he doesn't recommend a cream with anything in it that will cause palpitations because of my fast resting pulse rate so he's upped my dose of gabapentin from 300mg 3 times a day to 400mg 3 times a day.
I sometimes have such bad pain in my hands that my wrists feel like they are going to break (that's the only way I can explain it in words). Does anyone else have this or is it just me because I use my hands so much (I'm a musician)?????
Jun 18, 2012 09:43AM Linda-n3 wrote:
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.