Topic: Neuropathy

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.

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

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

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?

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?

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