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08-07-2006, 06:14 AM
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#1
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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neuropthy NEED ADVISE AND HELP
I need some advise and help!
Late last night I began to feel some pins and needles feelings in my feet
and now this morning it continues. Also am beginning to feel some of this on the tips of my fingers......
I completed 11 days ago my 4th chemo trt of TCH......have not called the onc
and will see him on Thur. while I have my 12 hercetpin trt.....
How long does this last?
Is there anything that I can take to ease it up?
Is this permanent?
Also - this is rather strange but Now I am becomming very concerned, has anyone experienced the following:
A thin cord like vein under my arm has appeared. At first I thought it was just a muscle strain from swimming. Then in doing some research I discovered something called Mondor Disease.....it says it is self-limited and benign, its significance lies in the clinican's recognition from primary, "recurrent" or "metastatic carcinoma, or an abscess of the breast.
I have put an e mail out to my surgeon to set up an appt. but I was hoping until I see the dr. someone on the site may have some information on this.
Thanks All,
Jean
Last edited by Jean; 08-07-2006 at 06:20 AM..
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08-07-2006, 07:04 AM
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#2
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Jean,
I developed neuropathy while on Taxatore and I still have it. My oncologist put me on Lyrica and it seems to help some. As for the arm - I have what they call "cording" in my right arm and it's due to having 26 lymph nodes removed. I would definitely want to get in to see your oncologist.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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08-07-2006, 08:40 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Jean...
I TOO have and do experience neuropathy. It has gotten somewhat better (when it was REALLY bad, I hated handling money, as my fingers couldn't grip it well). I'm not sure what you can do to prevent or eliminate, but it does/should get better as you get further away from treatment. Take care and God bless.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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08-07-2006, 02:49 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Thanks Kate and Rhonda,
Sent an e mail out to my surgeon and he said not to worry it is not a recurrance
(the cording) under the arm...to put warm compress on the vein and should
calm down in a few weeks.....ohhhhh that sounds soooo gooood.
Therefore back to the neuropthy - do we know anymore about this is it perminate nerve damage?
Thanks again,
Jean
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08-07-2006, 03:03 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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neuropathy
Hi Jean,
Yep, you sound right on schedule with the neuropathy. I started having tingling fingers and toes about that time on TCH. My onc gave me a list of supplements to take to reduce this - I'll try an locate it but off the top of my head, it was B-complex, plus B-6 and B-12, folic acid, Alpha-lipoic-acid, L-glutamine and some others. My neuropathy never got much worse than what I initially noticed. It took a long time (maybe 6-12 months?) to get pretty much back to normal, I still have a little numbness in my toes but I have to really think about it to notice it1. So I think it is reversible if you don't let it get too bad.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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08-07-2006, 07:15 PM
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#6
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Appreciate so much!
Chrisy,
I apprecaite your sharing the information on the vit. - started the B complex
early evening and will pick up the rest tomorrow....if there are any more you can think of let me know.....
Thank you all - it is so wonderful to have you all out there!
Warmly,
Jean
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08-08-2006, 09:48 PM
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#7
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Hi Jean, I don't know what's going on with this board lately, but I post a reply...come back later and its NOT there?
I replied to you about this once...but it must be lost in the twilight zone. As you know Jean I did that TCH regimen also. You are right on schedule for the numbness. I believe it was the forth chemo for me too when I started noticing the numbness in my finger tips, palms of hands and the bottoms of my feet. The finger tips bother me the most by far! Very annoying. I don't notice the bottoms of my feet if I have shoes on...but when I am bare footed in the house I can feel the numbness when I am walking, or when my feet are touching the carpet. (But its NOT bad thank goodness.) In fact if I am NOT thinking about it...I hardly notice it at all.
The worse is the fingers since we use are hands and fingers so much...can't help but notice. Does it get better? I hope so...but some told me it doesn't, who really knows? But we are all different...so its kind of a wait and see I suppose? I know my numbness has stayed about the same since it started. But my last chemo was June 12th 2006...so it hasn't been long enough for me to really know if mine will completely go away. Hopefully yours won't get much worse then mine because even though its annoying at times...it is tolerable. I know I was worried thinking I had TWO more chemo's to go...I thought if it got worse with each one I would be in trouble. But it stayed the same. Very *slight* numbness.
I found that very interesting about that cord like vein you mentioned. I had not mentioned it before, but I had the same type thing except I found the first one right where you bend your arm. (Where they would draw blood.) It was on my right arm and it was really hard to touch. Freaked me out because all my veins are shot. It felt like a hard piece of straw underneath there. If I straightened out my arm you could really see it. After a couple weeks it went away? But last week I went for this V.Q. lung test and the tech needed to find a vein to inject some radioactive dye. I looked at my left arm and I couldn't believe it. There was another one of these HARD cord like looking vein. In almost the same place except this time in my left arm at the bend of it. (Strange?)
For the FUN of it since I did NOT know what it was? The nurse asked if I had any good veins? I said no...but I said I do see THIS ONE. LOL She comes over and looks at it and says, "Wow, that looks good...until she felt it."? She said "Thats not a vein...I'm not sure what that is"? I asked if she was sure? She said she was positive. She agreed it looked just like one...but it was to HARD.
I am glad your surgeon had heard of this before Jean. I have never looked under my arm for one of these...but so far I have found one on each arm...and they were both just as you described. Wish I would of known about putting a warm compress on it. But I do now.
I am going to ask my doctors about this now. I want to know what really causes it. I thought herceptin was causing these? Since I wasn't on anything else but herceptin...I had nothing else to blame it on. I am glad I am not the only one that has seen these. The first one i found I really thought the surgeon left something inside me and it traveled down my vein. lol (Am I a nut of what.) ha
As far as the numbness goes...hang in there Jean...its just part of the tx unfortunetly. From what I understand, Taxotere & Taxol are both good at causing that problem. (I hope this posts makes it this time around?)
Sending you warm healing thoughts.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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08-09-2006, 05:33 AM
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#8
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Senior Member
Join Date: Aug 2006
Location: St. Louis Mo
Posts: 57
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Neuropathy
Hi, I also experienced some numbness and tingling in my fingers and toes. It seemed to be worse for me in the feet and actually created some discomfort when walking. I finished my chemo in Dec 05 and still have some minor numbness in my fingers and still have some in my toes. It seems to be lessening the more time goes by. So I could have some minor permanent damage but I would say the majority of the tingling and numbness is subsiding.
I wish you all the best and hope that you find yours will go away completely after you finish your treatment. All the best, Kool
__________________
Kool
DX 3/05
Stage IIB 1.3cm w/ lymph node involvement
ER+++PR+, HER2+++ G3
Surgery - Left mastectomy 4/05, Lymph node removal 5/05, breast expander removal 6/05, partial thyroidectomy 7/05, Right mastectomy 1/06
Post Menopausal due to hyserectomy 2/03 (took hormone replacement)
Treatment - A/C, Taxol and Herceptin, Herceptin only (finish 10/06), Arimidex daily.
Age 50
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08-10-2006, 07:21 PM
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#9
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Senior Member
Join Date: Mar 2006
Location: (Hill Country) Texas
Posts: 72
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I too have had numbness in my feet and hands. I finished my chemo Nov. 05 and the numbness in my hands and fingers has gone, but not in my feet. I don't have any pain with it. It has gotten a little better, but not much. At one time I might loose my shoe (if I had on slides) and not realize it until I would trip over it. My onc nurse had me start on 150 mg of B6 twice a day. I may try to add the other suggested vit. to see if this will help.
__________________
Jackie
Stage II, Grade 2, DX 4-05
EP +, HER2 +++,
1 node+, 1.6cm
46 yrs. old at time of dx.
Completed Chemo 11-05
Completed 1 yr. Herceptin 8-06
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08-10-2006, 07:34 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Jean
For the neuropathy, I was told by the chemo nurses to take 10g of L-glutamine 3X a day for 3 days before the taxane treatment to continue the day of and after to help prevent the tingling.
I don't know what it would have been like if I did not take it. I did get leg cramps/pain and I did get some tingling in my fingers. It took quite awhile to get all feeling back in my thumbs but they still worked fine.
If you want to try the L-glutamine, you need to buy it at GNC where you can get the powdered version to mix with a drink (OJ or something) as it is impossible to take that many tablets. You will gag.
You probably don't have that many chemos left - maybe 2? You're almost there.
Hugs to you
Becky
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08-10-2006, 09:05 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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L Glutamine
Becky, I also was told to take L-Glutamine 4.5g 3x/day for 5 days then 1x/day thereafter during treatment. Also B-complex, B-6,B-12, Folic acid, Acetyl L carnitine, and Alpha Lipoic Acid.
Definitely get the powder, I found it at my local drugstore.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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