Vent about Permanent Neuropathy
Comments
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I think I am getting relief, I'm afraid to jinx myself. I've been taking Lyrica 50mg 3X a day for almost a month with little effect.
I happened to have an email exchange with an old,friend who has diabetic neuropathy. He said Lyrica worked within days. So I couldn't figure out why I'm sitting here weeks later with no relief. Then he mentioned that max dose is 100mg.
What the heck, I took two caps at lunch and two at dinner last night and two more this morning. I'm waiting on a new prescription so I'm gonna run out if I keep this up.
Anyway I sense less burning and I'm not hobbling around I'm actually walking fairly well. The numbness sensation is still obvious in my toes but the constant burning is lessened. There have been a couple lightening strikes. Boy howdy, they are painful.
Here's hoping that there is no issue with taking the max dose. I really want to see this thru and hope it works long term and isn't a fluke. -
Chicadee- will be interested to hear what your Doc thinks should be a max dose. I tried it several years back and quit d/t dizzy spacey feeling in less than a month, so maybe time to try again.
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I haven't gotten dizzy but I did have a passing sleepy period. I know meds affect everyone different, including not working for us. So we shall see.
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My husband takes 150mg. three times a day.
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Chickadee,
Am also curious to see how you do on Lyrica. I had SUCH a horrible reaction to Gabapentin/Neurontin, I'm afraid to even try Lyrica.
On the 4th day I went up to TWO 300mg capsules, & it just got WORSE. I had blurry/double vision, felt stoned, balance issues, hot skin, chills,felt SUPER LETHARGIC, sleepy, down/depressed, cognitive issues, & I literally PASSED OUT at night while SITTING UP reading a book about an hour after taking it. Was scary. Even worse, I had heart racing.
I stopped taking it! Didn't need to wean off, since I'd only been on it for 4 days.
BUT, I STILL feel the effects from it, 3 days after quitting.
The IDIOT new Pain Management doctor NEVER DID call me back!! She only had her receptionist call me after I made 4 phone calls. Crazy. Receptionist said doctor didn't even check her messages on Friday, & doesn't always check them, she MIGHT check them on Monday but they probably wouldn't get back to me until Tuesday--MAYBE! !!!! THIS is INSANE since I'm a NEW PATIENT trying a new medication! When receptionist finally called me back, she daid doctor said to try taking med at NIGHT! I ALREADY WAS!!!!! I gave the receptionist an earful & told her I was still having heart racing & was going OFF the Gabapentin.
She still wouldn't let me come in for an early appointment (doctor will ONLY see patients every 30 days--period). I told the receptionist that their office was practicing unsafe medical care because patients do NOT have ANY access to the doctor
...they simply suggest you go to the Emergency Room instead!
Receptionist called me back again after talking to doctor & said these things take "time & patience"...she never did call me herself. ..just said I have to wait until my 30 day appointment!
Receptionist also admitted that doctor sees over 30 patients a DAY...!
SO. I dumped her! My other docs I consulted said her policies are UNSAFE & to find a new Pain Management doctor.
Oy!
It was suggested I go see UC Davis NCI hospital in Sacramento. Ya think?! Will get my referal on Wed.
My primary care doctor will probably work w me until I can get in...
I'm sooooo frustrated!!!!
Violet -
That sounds like you were ramped up too high too soon.
You might get some good information talking to a pharmacist in the interim. After all medications are their specialty.
Im gonna check with my oncologist this morning to get her opinion of double dosing what she originally prescribed. At this point I'm only concerned about interactions with whatever new chemo I start next week. -
Sorry to see some new faces here. I agree all are welcome. Violet my other thought when you couldn't get through to your doctor was calling the pharmacist. They can be very helpful with knowledge and recommendations. My mother had trouble with a new med recently and her phrmacist was much more helpful than her provider regarding side effects. For me gabapentin helped for the hot flashes but did nothing for the neuropathy. Someone posted about the 2 hr mark for when they get off their feet. That is mine too. The pain gets worse sooner than that, but that 2 hrs is when I sit down and can't take another step. Much cooler weather here the last few days so I'm back to freezing cold feet and increased pain from them. I hate neuropathy
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One week on the 100mg of Lyrica and I can say that the intense burning of my toes has abated. The lightening strikes are a rare occurrence.
Numbness is still obvious but I don't find myself stumbling or losing balance so much. If anything touches my toes though it makes me gasp. I found if I wore some footsies they cramped my toes together and closed toe shoes were not comfortable. Have to figure out how to enjoy my new shoes. So I'm still mostly in flip flops. -
Debra Barton is a nurse-researcher that has done a lot in this field. Here are links to some good information.
http://www.medtrition.com/_files/live/Chemotheraphy-induced_peripheral_neuropathy-Prevention_and_treatment_strategies.pdf
http://www.ons.org/CNECentral/Conferences/Hematology/ons.org/media/ons/docs/conferences/hematology/2012/Prevention_Management_Neuropathies.pdf
My doc talked with her or her lab to get the info and exact components for the topical cream I am using. Have been on it 4 days - I think it takes a week or 2 to work. Will keep you posted. My pharmacist thinks one of my new meds may have exacerbated the neuropathy over the last few months. -
Lastly, the paclitaxel acute pain syndrome appears to be caused by neurologic injury, as opposed to a pathologic process affecting muscles or joints.
Linda - from the first article above. This is the first time I've read anything, let alone not hearing a word from my doctors, about that horrible Taxol induced pain, around days 3-5. I remember only about two of us in the March 2012 chemo thread suffered from this. I wonder if we were the ones who also ended up with permanent CIPN I just loaded up on Hydrocodone those days.
For those of you that had Taxol, did you experience that pain? It felt like muscles and joints, but per article, was probably neurological injury happening.
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I don't remember how many days after my first taxol but it was either 1 or 2 because my husband and child were both home. I couldn't stand to put any weight on my feet. It was all I could do to get to the bathroom those first few days. I screamed and cried everytime I had to get up. Then the hands started on the second round. Third round put me in the hospital four days later. That was my last chemo. He didn't call it an allergic reaction however my hospital records have it down as an allergic reaction to taxol. I got blisters on my hand and feet during my time in the hospital. They finally started steroids and the pain along with the dilauid kept the pain level down.
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Well, here is my update.
I had my Effexor (venlafaxine) dosage doubled and now am taking 300mg. Don't think this helps with the neuropathy as far as I can tell. I take it to reduce my hot flushes/flashes and for severe depression (in part because I'm grieving for a dying friend.)
I've reduced my Gabaentin again and now take 300mg.
I take 20mg of Amytriptaline at night to help me sleep (used to take 50mg).
I still have pain and I very much doubt that it will completely go away with any of the current meds used.
My strategy is to keep busy during the day to keep my focus away from the pain. And I take paracetamol to reduce some of the pain (not sure what the equivalent of this is in other countries but probably akin to tylenol).
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Kam170-I had sever pain from taxol in 2003 from my first breast cancer, I had slight problems with nueropathy after, then I was diagnosed in 2011 with a new breast cancer and I had abraxane 12 weekly doeses. It was fine until about halfway through. I now have pain an numbness still after 2 years. I am so frustrated. Doctors do not have any answers for me so I live on ibuprofen and naxproxen. They do not recommend any of the meds because of side effects, although I am on effexor. Which doc you yo uall get to presscribe meds? I really feel like I could use an occasional percoset or something when the pain gets really bad. I have been doing a yoga class and a strength class whichboth are very gentle and I can barely walk or bend for 2 days after. Will this get better? I feel like no one beleives me about the pain. I even tried mmj, but the results were too sporatic. Sooooo frustrated! My fingers are numb and in pain as I type this.
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Kittydog and Bak - I have to think we all mentioned this extreme pain from Taxol to our MO's, but they never connected the dots that this might be extreme nerve injury going on? (m=y def of "Extreme" - possible permanent CIPN.)
I'm also connecting some dots on other things, like my sudden inability to sleep in beds with a horrible kidney ache, or hip ache (both sides) after first Taxol and even continuing now. After chemo ended, was sent for MRI of my spine (nothing, thankfully). Is this CIPN, along with the incontinence I had for a few months after Taxol? All those months, I thought it was a bad bed and it took months to settle in on my Sleep Number (very expensive) and I still can't lie down for more than 6 hours.
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I get the feeling that my GP and oncologists are just kind of "humoring" me. In other words, I feel that there isn't much they can do and they know that we have to just deal with it cuz there are no answers for the pain. My docs would give me pretty much whatever I asked for - they say valium might help but I don't like the way I feel when I come off valium - I get very anxious. Amytriptaline helps me calm down and I take that if I need it.
My best friend is dying of liver cancer at the moment and she is in extraordinary pain. She takes morphine and oxycodon but it doesn't last long enough for her. Just knowing what she is going through helps me to deal with my own, probably small in comparison, pain.
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Kam170 -I am reviewing this thread as I cannot sleep. I started to get neuropathy after the very first dose of Taxol- Pacitaxol .That was 7 years ago. It has pretty much changed my life to a very inactive one. Has to quit my job 2 years after BC surgery. Now getting Rads for return of BC to clavicle lymph node. Neuropathy bad to right hand now- and Tamoxifen makes it even worse so have put it on hold fora few weeks. So sick of pain. Wish I could sue that Taxol comany.
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Kam, that sounds so familiar! I have really bad hip. low back pain, in the past scans did not show anything and I am probably going to get another scan soon. When I had taxol years ago I had severe pain all over that lasted a few days and yes I did tell my mo about it. My most recent mo said please do not feel like we are ignoring your complaints, there is just not much help available for this. Yes, I am glad I am alive and do think the treatments saved me so far, but I am certainly paying a big price for living. Being in pain everyday wears on ones soul.
Lifelover-so sorry to here how much pain your friend is in. I often think how others do have it worse and feel so bad for them. I know how miserable I am I just can not imagine what they are going through.
Grammy-I am trying so hard to be active, but it take me days to recover from a yoga class or other workout class. I keep going, just on the chance that one day this will help, but so far I do not see any improvement in my strength or my pain levels. Just gotta keep trying. I tried tanox. and didn't last more than a week on it, way too much pain. I just wish others would believe me, I feel like they look at me like I am lazy and just not trying. If they could walk in my shoes for one day...
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Bak94- yep, no one but other neuropathy sufferers know how the pain does not quit. 24 hrs a day -7 days a week. My family say just take the pills mom. In the end it will come down to quality of life vs length of life. I so miss being able to travel easily.
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I'm sorry for your experience but please don't make light of risking a reoccurrence to avoid a painful side effect. None of this stuff has ever terrified me but I'm pragmatic and will do what I have to do to continue to live. A reoccurrence could lead to death so please consider your wording.
If you already have neuropathy it is likely that the nerve endings are already permanently damaged so it is a painful misery you will have to manage. My current chemo, Gemzar was chosen because it is less likely to contribute to neuropathy. That doesn't mean it won't but I'll take less and keep working on the pain management end of it. -
DebDylan - I have CIPN. I also had A/C then Taxol and Carboplatin. My neuropathy did not start until after the first dose of Taxol. I was never told, nor have I found in my reasearch (though honestly, I can't even remember if I did do research specifically on A/C and neuropathy, but I read constantly about BC related things), that A/C ever caused neuropathy.
I'm sorry you are already getting this SE with just A/C. I don't know what to say except what I have above.
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Cytoxan can also cause neuropathy, but is less likely to do so than taxol or taxotere. Anyone with pre-existing neuropathy is at higher risk for exacerbation or worsening when taking ANY drug that can cause neuropathy - i.e. someone with diabetic neuropathy is at higher risk than a diabetic without neuropathy, etc.
Deb, I totally understand your statement about quality of life. I know that I will die of this disease most likely, and so I am unwilling to take any treatment that will make my time less enjoyable. The neuropathy ended my career and most of my hobbies, and the lymphedema ended most of the rest. I am not actually depressed, and have very good coping skills, focusing on staying in the moment, taking each moment as it comes, finding things to be grateful for and some beauty in each day. And still, I wake up every morning thinking "crap, I am still here, I still have fingers that hurt, arm that hurts and is useless, despite all the care I give it" and the next thought I have is "well, guess I will make the best of it today." That is the only way I get through. I am personally looking forward to falling asleep and never waking up, and I know that in order to get to that point, I will be having a lot more pain and other issues before it is all said and done, but that will likely happen anyway, so I don't want to add to that by taking medications that hurt me more than help me.
Chickadee, I totally get what you are saying as well. Once the horse is out of the gate, it is too late. If you love life and have reasons to live, it is very reasonable to sacrifice some quality of life in order to prolong it. But each person has to determine for herself just how much she is willing to do or endure. It comes down to understanding who is being more selfish - the woman with cancer and miserable SEs or the family that doesn't want to let her go. There are no good choices here.
I chose treatment initially only because I love my family and DH and could not let them down, even though everything in my heart told me it wouldn't help anyway. It probably slowed things down, and I have lived with physical misery for 3 solid years without a break, but my emotional and spiritual health have improved steadily over the last few months. And ultimately, it is the lives that you have touched that is important, it is HOW you live, not how long you live. When I get to the point where I am no longer able to touch others' lives, then it is time to roll over and give up, but until then, I keep getting up each morning, put on my "game face" and doing what I can, even though it is only about 10% of what I did before.
Deb, have you tried gabapentin (Neurontin) or pregabalin (Lyrica) or duloxetine (Cymbalta) or other drugs? Vitamin E, glutamine, other supplements? There is a web site from the American Cancer
Society that has a little info: http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/chemotherapyeffects/peripheralneuropathy/peripheral-neuropathy-caused-by-chemotherapy-preventing-cipn
Another article: http://www.ejcancer.com/article/S0959-8049(08)00335-3/abstract
Here is a presentation done recently, but I am not sure where: http://www.ons.org/CNECentral/Conferences/Hematology/media/ons/docs/conferences/hematology/2012/assessmentandtreatmentofcipn.pdf
And then there is an article that warns us NOT to use some supplements that are unproven because they can make things worse (including excess of some of the B vitamins!)
http://www.ons.org/CNECentral/Conferences/Hematology/media/ons/docs/conferences/hematology/2012/assessmentandtreatmentofcipn.pdf
Some patients get good relief with some of the meds I listed earlier. I see a medical toxicologist who has been MUCH more helpful than the MO, pain specialist, and neurologist all put together! But there aren't many medical toxicologists who actually see patients other than in the acute emergency setting, so I am fortunate to have access to this specialist. -
Linda n-3 you could be speaking from my heart. I so feel the same way
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Linda, thank you.
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Deb- as far as PT helping, I very much doubt it. I actually became unable to walk after 18 months and had conflicting diagnosis. PT and 6 weeks of steroids only made it worse. My muscles became weaker. I wear leg splints for 5 years now. Going in the pool is the only real relief.
Legs stronger after taking Alpha Lipoec Acid daily for 2 yars but now faced w/return of BC and just finished rads to collar bone node. Pain less but left w/very numb thumb and two fingers on my dominant hand. Hurts to even grasp things. Tamoxifen for a month made it worse so quit it until I see MO in a week. I will learn to live w/it again - no death wishes but do not want to tell my son. Kids think you should try everything they sling at you just to live a bit longer regardless of quality of life but I would like to see my grandkids get a good start on life. I would be interested to hear from anyone who has used one of those TENS units.It is supposed to stop the nerve impulses that cause the pain. -
Grammy, was it your feet that interfered with walking? I ask because twice now, the day after my Gemzar infusion my legs felt like jelly with no muscle tone or strength. I could blame it on the Gemzar but I'm suspicious because it was like my brain couldn't tell my legs what to do. That seems like a neuro function. I've recovered each day but its scary as hell.
On another note the sensations in my feet seem to be improving a bit. We upped the Lyrica to 100mg x 3. They are still numb and the toes hurt. I'll take any improvement I can get. -
Chickadee- it was initially my ankles weak.Hard to push the gas pedal on the car. Then it became my whole legs. My brain send messages to lift my leg but nothing happened. I already had the pins and needles sensation for many months before this. I thought I had MS but neuro unsure and finally blamed chemo. I may never know for sure. All i do know is those onc never tell us the whole truth about these drug effects.Initially both my arms got weak too but then got better after I stopped the steroids.
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Scary. I think we can blame the chemo. We need neuropathy centers as a sub specialty. There doesn't seem to be enough emphasis on this awful effect.
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Grammy and others who have had the weakness - I had extreme weakness for about a year, which was so bad that I literally could not FORCE my legs to move or my body to move to even get up to go to the bathroom - had to ask DH to help me. Couldn't move my arms - they just lay motionless even though I would TELL THEM TO MOVE. Pain was deep burning pain in all my muscles, especially upper arms, ribs, thighs and calves. No joint pain that I could absolutely attribute to the whole "syndrome." I just find it interesting that some of you have also had that experience. The MO just kind of blew it off. -
Linda- You are so right. MOs just blow it all off. They do not have to live w/it. I used to wake up every day and still do to some degree w/burning sensation to my whole body even my vaginal area. Now its pretty much feet chest and one arm-hand. Thank god for Ambien ,which at least allows me to get some sleep. I always feel like it getting better until evening-nightime when it comes back w/a vengeance.
I started back on 1200 mg Alpha-Lipoec-Acid today. It may take 2-3 months to really feel effect. That and B12 and Vit D. I wish I could get B12 shots again. That was the only thing that helped w/energy. I get so mad at them when all they can say is " your labs look fine" grrrr. What kind of Glutamine- is it mixed w/anything? -
I definitely have muscle weakness in my legs. I can remember going to my radiation appointments and I would tell myself pick up feet and walk. MO did nothing. Surgeon said to keep walking and I would regain some of it again. Which I did but if I am tired, been on my feet to long it comes back. I also loose my balance easy. My mom thinks I should use a cain but I like my right arm free so I can stead my balance when it happens. Night time is always worse. I hate it but I would rather hurt than feel like a dope head especially having a child who is ten and now one who I have custody of who is 10 too.
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