HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 07-24-2011, 10:06 PM   #1
7andcounting
Senior Member
 
7andcounting's Avatar
 
Join Date: Jun 2011
Posts: 107
Afraid what oncologist may tell me this week

Hello,

I have been on Navelbine for almost 4 weeks. I have been experiencing a lot of neuropathy in my hands and I am wondering if when I see my oncologist this week if he is going to say I have to come off Navelbine due to this.

I was told that neuropathy can render your hands useless. My onc had told that if I got it I would feel it coming on over time, yet I have had it ongoing for this entire week since my treatment.

Is it reversable? Does anyone know if I am experiencing this now if it is only going to get worse and worse.

I greatly appreciate anyone who has experienced neuropathy and dealing with it to tell me what they did.

Thanks,

Joyce

P.S. I am taking Glutimine and Vit B-6
7andcounting is offline   Reply With Quote
Old 07-25-2011, 05:50 AM   #2
Pam P
Senior Member
 
Pam P's Avatar
 
Join Date: Sep 2005
Location: MN
Posts: 731
Re: Afraid what oncologist may tell me this week

Joyce - I don't have answers to your questions. I have experienced neuropathy to varying degrees - but not to disabling - some numbness and some burning feelings off & on with different chemos I've been on. Each time it has gone away, although with some people it is permanent. If the navelbine is working otherwise I hope you are able to stay on it. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
Pam P is offline   Reply With Quote
Old 07-26-2011, 11:38 AM   #3
tricia keegan
Senior Member
 
tricia keegan's Avatar
 
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: Afraid what oncologist may tell me this week

Hi Joyce, I had severe neuropathy at one point during my chemo, (Taxol)my onc prescribed Lyrica and thankfully a few months after chemo ended the neuropathy stopped too little by little.

A friend of mine was not so fortunate and had it in her feet and has had to walk with a cane ever since, if you'd prefer to stay on this drug and it's working for you perhaps your onc can suggest Lyrica or something similar to help!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
tricia keegan is offline   Reply With Quote
Old 07-26-2011, 08:13 PM   #4
CoolBreeze
Senior Member
 
CoolBreeze's Avatar
 
Join Date: Dec 2009
Posts: 562
Re: Afraid what oncologist may tell me this week

I also suggest l-glutamine. I'm not some supplement/naturalist person (to say the least) but this supplement has been studied and has proven to help prevent neuropathy with taxanes. I took it with my first round of chemo and am taking it with Navelbine now, and it's been a month of weekly infusions and I barely have any.

I get a little around the second day but I take 4 grams of l-glutamine 3 x a day before, during and several days post-chemo and it seems to be keeping things at a minimum. Most people don't take enough.

As always, talk to your onc but it won't hurt you.
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
CoolBreeze is offline   Reply With Quote
Old 07-26-2011, 08:53 PM   #5
ElaineM
Senior Member
 
ElaineM's Avatar
 
Join Date: May 2006
Posts: 3,142
Wink Re: Afraid what oncologist may tell me this week

You can also try vitamin B 6. That works for some people.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
ElaineM is offline   Reply With Quote
Old 07-26-2011, 09:54 PM   #6
BonnieR
Senior Member
 
BonnieR's Avatar
 
Join Date: Jun 2007
Posts: 2,210
Re: Afraid what oncologist may tell me this week

I had neuropathy mostly in my feet and my onc recommended Glutamine which I took daily. Ask about it.
But my onc did stop my TCH early due to the symptoms and just proceeded with the year of Herceptin.
Keep the faith.
__________________
Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
BonnieR is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 02:24 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter