Neuropathy
Comments
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I finished my chemo therapy (taxotere, adrimycin & cytoxin) October 13, 2006. In January 2007 I was told I had carpal tunnel, my left hand (my breast cancer surgery was on the right breast) would totally go numb and I would have pain when trying to releave the numbness, especially at night. I was treated for that and it did help. It is now coming back, but also in the right hand. Also about 3-4 months ago, I began to have pain in the bottom of my feet after sitting for any length of time and when getting up from sleep. I could barely walk. My nurse at my onc. office told me to see a poidiatrist. I did that and the pain is still there, not getting worse, just not getting much better. I have had restless leg syndrome, diagnozed long before the cancer, and it seems to have gotten worse since the chemo treatments. I talked to my nurse at the onc. office, but haven't received any positive answers. Finally, my surgeon thinks it could be neuropathy, and contacted my oncologist. Could neuropathy occur one year after chemo treatment? I did not have these problems while having the treatments. Can anyone relay some useful information regarding this?
Thanks, Joycie
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My goodness Joycie, I could've written what you just did! I finished chemo in July 06 and my hand on the side where they took the lymph nodes out has started going to sleep. It gets numb and then other times it's painful. I've also had swelling in both hands. There's been some tingling all along in my hand but nothing like there is now. I had Neuropathy before I was dx'd with bc but it has never bothered my hands. It felt like I was walking barefoot on hot coals and the Neurosurgeon tried a couple of meds and we found that Lyrica works well for me. I hadn't thought maybe that was also the cause of my hand problems. I had a scare with finding another lump and while I was waiting on test results found this board. Luckily, it was b9 but it sure did scare me. I talked to my onc about my hand and asked if it could be LE, so he's sending me to an LE clinic to have a sleeve but he thought it also might be carpel tunnel. So even though I don't have any answers for you I can sure identify with your questions. lol I do know that you can get Neuropathy anytime because I did. I'm anxious to see if someone comes along and posts some ideas for us. Glad you asked the questions.
I wanted to add that I also have restless leg syndrome and it's gotten much worse. My Neurosurgeon that treats my neuropathy put me on Mirapex for my restless legs and it helps.
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Hazel - Thank you for the comments. I am glad that there is someone else out there that has the same problems. I am on Requip for my restless legs and that has helped. My family doc just add 2mg daily during the daytime. It seems to have helped. I have an appointment with my onc Thursday,m February 28. Hopefully, she will have some answers for me.
Thanks again, and God Bless you,
Joycie
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Ah, these chemotherapy-induced neuropathies. Particularly common with the Taxanes: Paclitaxol and (less so allegedly) Docetaxol. Lots of literature out there, but still not often minded.
I limped along with all the same symptoms for months, numbness of feet, lancating pains of calves and feet, severe pain with temperature change, then onto fingertips, and lastly weakness involving arms, and some disequilibrium. And yes, my symptoms, which I recognized when I couldn't feel my feet placement in the dark, started just after the last taxane dose, but progressed in severity for one full year and then plateaued to a permanent level of impairment.
If you read the taxane package insert, you will see 50% of patient's reported neuropathic symptoms from Paclitaxol, most with improvement, 7% or so with permanency.
Still I hear women say they struggle, yet without the diagnosis, and support needed. Neurontin, Lyrica, many other drugs are out there: each of us respond differently and they are powerful agents. So go slow if you do, lowest dose to try to get relief, then step up.
For Carpel Tunnel Syndrome, splints initially, but surgery may be needed if motor weakness becomes obvious in your hands.
To summarize, yes, there is a swath of time over which these neuropathic symptoms reveal themselves: not all are immediate, but if recognized early, often respond to dose lowering or cessation, and not all resolve quickly, and some plateau as permanent symptoms.
Good luck,
Tender -
Tender,
Thanks for the comments and support. I have a onc appointment coming up this week. Hopefully, she will have some answers for me. The numbness has now gone into the right hand (side of breast cancer).
Thank you again,
Joycie
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Prior to dx, mastectomy, chemo (AC followed by Taxol thenTaxoterre) I had thoracic outlet syndrome with numbness in my hands, icy cold hands, pain in shoulders and forearms, numb feet after sitting for more than 30 minutes. Increased numbness in hands at night. Following chemo, by symptoms are greatly magnified. Internist and podiatrist say that it is from the chemo and could be made worse by the aromatase inhibitor (Arimidex). Oncologist would not confirm that opinion. Chemo finished May 2007. Just stopped Arimidex after 9 months taking it. No relief in symptoms.
At least now I know that I'm not alone with these side effects.
Why isn't my oncologist more forthcoming? I asked for total honesty in all aspects of my prognosis, treatment and side effects. She was not honest about the dangers of Procrit when she suggested I enter the clinical trial. When the dangers were made known in the press, I dropped out of the trial which was administering 4 x the normal dose during chemo. My onc said she didn't blame me for dropping out. She also didn't tell me the dangers of Neulasta.
When I ask her about neuropathy, complain of rapid heart beat, elevated bp, pain in my stomach and esophagus, she tells me to see my internist. She could have told me these are known side effects of Arimidex and chemo. She wonders why I'm seeking a second opinion for my future treatment at a large teaching hospital in San Francisco. Sorry to sound so cynical but I think I need to see her stock portfolio to see if it is weighted heavily on the drug company side.
Age 61, stage 2A, dx 9/06, AC/T dose dense, ER-, PR+, 0/5 nodes. Onogene test score 32 (high risk recurrence). Live in cluster area: Marin County -
Wow! I've had some of the same problems. Did not realize that Arimidex was the culprit, but should have. that explains the shoulder disability after a shoulder replacement and the neck surgery and the neuropathy that seems to be developing in my legs. Onc and Ortho are both hesitant to blame any meds. There are no related ailments in my family history. So far I am controlled on Neurontin and Celebrex. Still have pain, but can function around the house. But am having trouble finding a nursing job that does not require being on your feet all day.
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Hello. I took Taxotere 4 years ago, one of my chemo drugs, in my fight against HER2/neu with overexpression, triple negative(means the cancer can be quite aggressive), with 3 lymph nodes envolved breast cancer. Had bilateral breast mastectomy before chemo. I started having Neurpathy symptoms in my feet and hands, almost from the beginning. Mine has spread into my legs, arms, and groin, I am in "high end" type pain that no medication really gets rid of for me. I have made it four years, plus 9 months, past my surgery. Four years out from my last Sloan Kettering chemo. No recurrence seen. I also took Adriamycin and Cytoxan. During treatment I was given Procrit and Neupogen to build my blood back up and avoid blood transfusions. Now they have found, from material we have read, that Neupogen can cause arthritis in about 7% of patients taking it. Well, something they gave me sure caused an onslaught of it, along with bone pain that continues to get worse, not better, even four years post chemo.
It has been three months since my last oncologist checkup. I had bone scans and CT scans of chest and abdomen, and neck. I started have severe bone pain in two of my mid-back discs about three days ago that brings tears to my eyes and make my hands shake. Is it arthritis or is it recurrence? I go to my general doctor this afternoon to see what he thinks.
AS A SIDE NOTE:
DOES ANYONE, BESIDES ME, REALIZE THAT ALMOST NO DOCTORS ARE REPORTING THESE LONG TERM EVOLVING SIDE EFFECTS TO ANYONE? I am grateful to be in remission but that isn't the end of the story. Because we are living longer, more and more of us have evolving side effects from these chemo drugs and other drugs given along with treatment. They don't have a clue(and do they really want to know? There is a massive number of us who are suffering greatly out here. I, for one, think they need to establish a central reporting data base, to see just how huge/massive this iceberg(word picture of us who suffer post chemo long term side effects that affect our quality of life ongoing, for many years.
Do any of you agree?
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Hello. I took Taxotere 4 years ago, one of my chemo drugs, in my fight against HER2/neu with overexpression, triple negative(means the cancer can be quite aggressive), with 3 lymph nodes envolved breast cancer. Had bilateral breast mastectomy before chemo. I started having Neurpathy symptoms in my feet and hands, almost from the beginning. Mine has spread into my legs, arms, and groin, I am in "high end" type pain that no medication really gets rid of for me. I have made it four years, plus 9 months, past my surgery. Four years out from my last Sloan Kettering chemo. No recurrence seen. I also took Adriamycin and Cytoxan. During treatment I was given Procrit and Neupogen to build my blood back up and avoid blood transfusions. Now they have found, from material we have read, that Neupogen can cause arthritis in about 7% of patients taking it. Well, something they gave me sure caused an onslaught of it, along with bone pain that continues to get worse, not better, even four years post chemo.
It has been three months since my last oncologist checkup. I had bone scans and CT scans of chest and abdomen, and neck. I started have severe bone pain in two of my mid-back discs about three days ago that brings tears to my eyes and make my hands shake. Is it arthritis or is it recurrence? I go to my general doctor this afternoon to see what he thinks.
AS A SIDE NOTE:
DOES ANYONE, BESIDES ME, REALIZE THAT ALMOST NO DOCTORS ARE REPORTING THESE LONG TERM EVOLVING SIDE EFFECTS TO ANYONE? I am grateful to be in remission but that isn't the end of the story. Because we are living longer, more and more of us have evolving side effects from these chemo drugs and other drugs given along with treatment. They don't have a clue(and do they really want to know? There is a massive number of us who are suffering greatly out here. I, for one, think they need to establish a central reporting data base, to see just how huge/massive this iceberg(word picture of us who suffer post chemo long term side effects that affect our quality of life ongoing, for many years.
Do any of you agree?
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Hello, Melp, I too have struggled with neuropathy as a result of taking Thalidomide. I have been dx'd with Multiple Myeloma (2001) and took Thal for over 2 yrs. It kept me alive, but left me with pretty severe neuropathy and other problems in feet and lower legs. Don't know if all come from that, but neuropathy is known side effect. BTW, it was supposed to go away when it was stopped. Ha!
After much trial and error, I have found Lyrica works for me; I take 3- 75 mg capsules. I could not sleep at night, and it has really helped. But I still had nerves "jumping" on the top of my feet. Guess what I found helps that? A little jar of salve called Tiger Balm--buy it at the ddrugstore. I still wake up with leg cramps--don't know how much of all this is the fault of the Thal.
I also have stage 4 breast cancer and am looking at having to choose new therapy. My onc--who has kept me going since '94--has suggested Abraxane which is given IV. I think it is new. Has anyone had experience with it? Unfortunately neuropathy is a side effect, and I don't know if I can take any more of that.
Yes, I do agree. We are alive, but many of these side effects affect quality of life. Anyone have any thoughts on how we could get something going here?
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I am a 2.5 year male breast cancer survivor. I have had neuropothy ever since chemo (taxol and FAC). All the drugs took for neuropothy did me no good. Several weeks ago I started acupuncture at MD ANDERSON. The pain went away but the numbnes and tingling is still there. I can live with the numbness and tingling.
Mike
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I am a 2.5 year male breast cancer survivor. I have had neuropothy ever since chemo (taxol and FAC). All the drugs took for neuropothy did me no good. Several weeks ago I started acupuncture at MD ANDERSON. The pain went away but the numbnes and tingling is still there. I can live with the numbness and tingling.
Mike
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Yes, I think I was developing neuropathy right before being diagnosed for the second time with triple neg bc. My right thigh was having shooting electrical pains and numbing.
My last taxotere was last October, had the neuropathy in feet and hands, then lower legs and it has moved up my body to cause other problems. We went thru all kinds of tests until I saw an article on Lance Armstrongs website which fit me to the bill. I was so happy to finally atleast know what was going on and so doc diagnosed me w/peripheral neuropathy and am on Neurontin and something to help with pain.
I was falling, walking into walls, falling into the tub not to mention other problems. I finally have given up driving for a couple of weeks to see if the meds will help. I just started taking them about 3 days ago. It is even hard for me to talk and write right sometimes. I was really getting depressed cuz no one could figure it out.
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I have had neuropathy in my back and foot since taking treatment but it isn't that bad. During the last 3-4 weeks I have had a lot of pain in my gums. I went to the dentist and he said there is nothing wrong with my gums and that if he were to guess what was wrong with me he would say neuropathy from chemo. Who has ever heard of neuropathy in your gums???? Right now I am living on Advil but if this keeps up I will ask my GP if I can go back on Gabapentin.
Still talking and eatting well!!! Jacqueline
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Hi Joycie.....I finished chemo about the same time you did, Sept. 2006. No neuropathy at all during chemo but about 1 1/2 yr. later it appeared. My onc said that I am just a late bloomer as it usually appears during chemo or shortly after. I am taking Femara and some ladies on these boards have said they think it causes neuropathy also. My onc said if mine doesn't go away she will prescribe Neurontin(gabapentin).
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Here are the side effects for Neurontin.
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From what I'm experiencing I think mine (if that's what it is) is caused by the, A.I. - Aromasin. I'm seeing my Onc. on 8/29. This stuff is torture on the body!!!
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Hi, all, my neuropathy on the bottom of my feet after my last TAC tx. My onc prescribed vitamin B6. His nurse is a BC survivor,she said it was years before she got back to normal.
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Hi all
I've had neuropathy pretty badly at times in my feet since taking taxol -- finished Nov '07. On a friend's advice I tried orthotics in my shoes, as it used bother me particularly while walking. They haven't taken the pain away but they've really helped to ease it as they've made a huge difference to the impact on my feet while walking. I was very surprised that something so simple could make such a difference. For what it's worth ............ Louise
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B6 and nurontin has been helping alot the last couple of days! now the doctor thinks it could be port problems! I don't know anymore......
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Hi Everyone!
I love this board because it keeps me from overreacting. I am four years past chemo and always had some neuropathy but it is getting worse. I agree we should be told about the side effects. I have times when I feel I can barely stand and even shopping is difficult. I have my next appt with oncologist in October and I will see what she says. She is pretty good about giving information. Thanks to everyone for sharing. I hate that so many have problems, but it helps to share.
Linda
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I take Lyrica for neuropathy and it works for me
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Last May 2007 I finished AC then 1 Taxol (with very bad reaction that put me in emergency room in the middle of the night) then 5 weeks on Taxotere. My neuropathy, especially in my feet, was severe. Only recently has most of the neuropathy subsided. I WANT TO SCREAM, "WHY DON'T YOU TELL ME THE TRUTH ABOUT THESE DRUGS." I went to the podiatrist, my internist and my oncologist with complaints about neuropathy. Only my internist said that he felt it was related to the Taxanes. The oncologist said she had never heard of such a thing. When I started chemo I told her I want only the truth. No glossing over, no fudging on the truth.
In spite of my anger and frustration with the cancer clinic's handling of my case, I thankfully have gotten over most of the neuropathy in my feet. Hopefully the neuropathy many of you are experiencing will go away in time.
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Hi, I didn't do chemo, but I do have Carpal Tunnel, both hands, and Plantar Faciitis in both feet......brought on by Arimidex.
I DID skip thru a bit quickly, but didn't see anyone mention Plantar Faciitis as a 'named' condition.
One of my Drs told me it WAS caused by Arimidex. Apparently the drug squeezes out just about every drop of estrogen from our bodies, which is needed to keep the facsia ( the wide band of tissue supporting ligaments, that runs from the heel, under the foot, to the toes) supple. The fascia starts to contract, and as it becomes drier it causes the awful pain. My regular Dr just gave me one of her 'oh, its not YOU again is it ' dismissive consultations and told me to just stay off it for a few days !! I just had to go back for another consultation, because the pain was so bad, and, lucky for me, got a stand in Dr who listened to me, and diagnosed Plantar Faciitis.
What to do??... there really isn't much you can do....my left foot IS easing a little, after about 18 months of agony, but my right foot goes on wreaking havoc. I did go to the pharmacy, and bought off the shelf shoe lifts (have you seen the price of the 'made just for you' ones ??) and they certainly help when I am walking around the shops, or trying to do some gardening. Worth a try before you start to spend.
I have tried Gabapentin, didn't work for me, but does work very well for some. Trying Lyrica now, but after about 8 months I can't see any difference in the pain level.
I was hoping the whole thing would go away, given time, but I was wrong !! We have to learn to live with these very painful, and disabling conditions, plus the total disbelief of all those around us. I am 5 years out, and just have an awful time explaining to family that it is all caused by bc, and its treatment after all this time. I look so normal, apart from being a lot paler than I used to be ( DH says its because I don't spend so much time working outside!!!! I wish) I suppose if one of my feet curled up and dropped off then it would be classed as a 'proper' illness, and then would get help and sympathy, instead of mutterings about sitting around !!
Isabella.
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I was just checking in to see how everyone is doing. Still in remission (6 yrs. the end of July-not a small thing) but goodness, do I suffer high end type pain 24/7. Now I have pain/choking in my esophagus and hoarseness. All the tests, looking for cancer. All clear so far. More neuropathy?? Guess so.
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I have been on Avastin/Abraxane since Feb....get Abraxane weekly with Avastin every other week. I am getting treatment #22 on Wed. and my onco has been talking about this as long term. We are to do scans after 24 treatments which would be in just a llittle over two weeks. Most of the people I have been in contact with on these boards seemed to get a week off,(3 treatments, then a week off),but mine has been weekly. My SEs are hair loss, loss of taste, eyes tear constantly, nails are coming off and ooze a smelly lymph-like liquid which the antibiotic they have had me on for three weeks in not helping, and Neuropathy. The last two side effects are the ones really getting to me. So far the nail issue is bothering me more than the numbness, but I have been very concerned that the neuropathy might not go away after being in contact with several women on other topic sites and now after reading all your posts am definitely concerned. I am going to discuss this with the PA when I have my treatment scheduled this Wed. It is my day to get the "works" as I refer to it when I get everything...abraxane, avastin, zometa, faslodex, but I am thinking I want to do my scans now, not after 24 and see what is happening. I have heard of people getting great results with the A/A combo, BUT at the same time I don't want to be stumbling around and not be able to use my fingers the rest of my life. I have been putting off SSdisability even though they told me I would get it without question when I went to talk to them in June, but that was when I was still working without difficulty. I am a dental hygienist and that is not a profession you can do without tactile sense so I this week I am filing and giving my notice at work. I am fortunate in that I have hit that magic 59 1/2 year mark and will be able to start living off my 401K money until my 5 mo waiting period for SS is over, BUT the fact is I really hate to stop working because I really liked my job . I have many interests and hobbies, but all of them involve using my hands so I hope and pray the neuropathy is not permanant and perhaps stopping my treatments is not the answer, but I do not want to add insult to injury as they say and just continue the treatments without exploring the possibilities and asking some serious quesitons on Wed. I dont know how they will react to my questioning my treatment plan since in the past i just went along with whatever was prescribed. I did have some neuropathy in my feet when on tamoxifen, but that went away.....also had it in hands and arm, but that was due to carpal tunnel and corrected with the surgery I had. I saw where a few of you had problems with arimidex, but that did not cause any problems for me, but then again, I only took it with zometa, not in conjunction with chemo. I am hoping the PA or oncologist will be truthful with me when I ask my What If questions on Wed. I have been dealing with Stage lV for a long time (98) and am not ready to give up, but I have always felt that quality is much more important that quantity. I appreciate the info I have gotten from your posts.
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bump. happy to have found this thread. does anyone have more thoughts on this? please?
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Hi again..I am still on Lyrica and it is still working for me
It certainly is worth seeing a Neurologist
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I quit my chemo after 22 treatments because of neuropathy which I still have, but I do think it is getting better. I think the lack of feeling in my finger tips is due to the fingernails more than neuropathy. I have been taking Vitamin b-6
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I am only 7 weeks out of my last Taxotere, but my neuropathy ( I had one Taxol and it set in in fingertips and toes, so onc switched me for remaining three chemos of taxotere). Neuropathy never worsened on taxotere, but remained tingly and numblike. It appears to have worsened in my toes since my chemo was completed Sept. 10th. I have never experienced pain, just tingling and numbness off and on, but all my toes are completely numb over the past couple of weeks. Is this normal - to go completely numb as they have? When I saw onc last time, they were not totally numb, but she did say the neuropathy would "probably" go away with time. She never intimated it would get worse not being on chemo! Any suggestions, most welcome. Thank you.
Linda
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