Neuropathy

I know this had been posted before but wanted to ask again. What do you all do for the neuropathy in your hands and feet? Does it get really bad and stay that way? I am having lots of burning and starting with pain now. It seemed the longer I was off chemo the worse it got. I am taking B6, glutamine powder, but I don't see that it helps much. My oncologist I have now and supplement consultant says glutamine powder doesn't work and its a waste of money. He also says neurotin doesn't work either and will not give me a prescription for it. I am sure I can get one from my PC. He doesn't give me any hope for anything that works. I need to hear from some of you on what you do. I am on Herceptin, Taxol and carboplatin. So far I have had some relief from wearing magnatic insoles during the day and infared socks and gloves at night. I am willing to try anything. You all are so good with sharing what works for you. Hugs, Sandy

Hi Sandy, I was having severe pain down my right leg and they tried putting me on the Cox2 Inhibitors, ie: Vioxx,Neurotin, all they did was mess up my stomach. I went to a massage therapist which did help for a long time. I am still on Herc every 3 weeks and now it seems to settle in my hips and this past week my arm on the masectomy side has been numb and tingly. I had another massage on Friday and since last night my body feels like a train hit it. My chest, under arm and everything in that area is sore to the touch, but I feel no bumbs or lumps. It hurts to take a big deep breath. I know when this first started some of the ladies here were on cox 2 meds. I also had a neurpathy test done and it came out normal. I was on Taxotere also, but have been done with that since March 29. I also would like to know how long these symptoms or side effects can happen. I finally have my strength back and feel good until this last week. Might be a good question for Lisa and the booklet they are putting together. Hope this makes you feel not alone and maybe the cox 2 meds will work for you. If any one has anything for me I would appreciate some feedback. Sorry this is so long. Kristen

I have been on taxol, carboplatin, and herceptin for 3 complete cycles of weekly treatements (3on/1off) without having neuropathy or much problems with side effects other then being cold and diarrhea. You might want to ask your onc. about weekly treatments as you will get a smaller dose with less toxic effects. My CA15-3 tumor markers came down to 34.5 (32 is normal) after the second complete round of treatments. They were 345 in March, and 111 in May after completing 22 rad. tx's.

I also have pain in my lungs when I breathe deep. So far my onc. says my lungs sound good. I was treated for bone mets in my spine and also to my chest. Could the rad. tx's have damaged my lungs?

Thanks and God Bless All

I had alot of pains after taking taxol for 12 weeks. I even took some arthritis tests because i hurt so bad. My nurse practioner said there is a syndrome you get when taking taxol. It can last up to a year after taking taxol. I know that seems like forever, but mine went away after 3 months. I thought it would never go, then one morning i got up and could walk. I took Darvocet, its a mild pain pill, for the pain, and I started Celebrex, which is a cox2 inhibitor. One thing about celebrex is that they are studying it to prevent reoccurences in trials. I know they say its helps prevent colon cancer. I know the pain is bad, but it does get better with time.

If you know of a good, reliable accupuncturist near you, give him/her a call. Pain relief is this treatment's specialty.

L-Glutamine DID work for me, but not for pain, rather for the numbness.

Love and light,

Lisa

I started feeling numbness in my fingers after my first weekly treatment, so I was very worried as was my doctor. It got worse up through my sixth treatment, and now the numbness has actually gotten better this last week, but I am doing a lot for it. I take glutamine powder three times a day for four days. I take B6 and go to acupuncture weekly. Research shows borage oil and liploic acid helps diabetes neuropathy and researchers speculate that it may help neuropathy from taxol. I also take celebrex for pain. As for neurontin, the data is extremely clear (ask any neurologist). It helps pain but not numbness. I took a lot of measures, but I was quite frightened when I had numbness from the get go. Also, the sooner you start on whatever treatment the better. I hope you find some things that work.

I am on weekly Herceptin, Taxol and carbo. This is my second time around had 2 cycles of 12 txs. first time. The first time wasn't bad but this is different and its only my first treatment. I don't have joint pain since Flaxseed oil has kept that away! This is my third time with Taxol, the first time I had it every third weeks I had terrible joint pain. Then a friend told me about taking flaxseed oil capsules for her arthritis and it has worked for me. The arthritis docs here are recommending it for their patients. May want to give it a try. Thank you all for the responses and the great article on glutamine powder will have to show that to my oncologist!! Hugs, Sandy

Hi Sandy, I know where you are coming from, I have had 11 doses of the trio now, and my feet and hands drive me crazy. Tried the mega b's with along with my multi, haven't tried the glutomate powder, not sure if it is the same they put in chinese food, if so can trigger asthama, as for the lungs mine were damaged from rads so I have fibrosis which sounds like a crackle, now to top it off I had my flue injection before I started this trio and I have a bad URTI infection compromised by chemo so big chance I will not get it this week. I also having numbing in the area around my neck which is being treated. I had been on Celebrex for years for a connective tissue disorder, still got BC and the celebrex helped give me heart failure so I nos have to steer away from all anti-inflammatories. I also had some numbing in the feet before the taxol/carbo were added, so still looking for answers as well.

Hugs Lyn

Good for you that you use Nikken products. The water is great too especially if you optimize it-drink lots to flush the toxins out. I don't know if you take flax seed oil but mix it with low fat cottage cheese and take at least 4 TBS if not more(Budwig theroy). Fish oil is an anti inflammatory. Take 1 capsule with food for each 10 lbs of your weight or 1000mgs of just DHA. Fish oil will thin your blood which is good as long as your not on blood thinners to begin with (take with 800mgs of vit E succinate). Read "Beyond Aspirin" by Thomas M. Newmark for more anti inflammatory herbs. New research shows that HER2/neu cancer needs an hsp90 (heat shock protein) inhibitor in order for Celebrex to work. It looks like they have them already but not sure if they are in clinical studies yet.