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Old 08-06-2014, 12:03 PM   #1
sarah
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losing feeling in finger tips on taxotere

Hello,
An HER2+ woman in our support group is losing feeling in the tips of her fingers and toes and the onc is suggesting stopping treatment. She's only a few into it and was supposed to have 9 now talking about 6. She gets it and Herceptin every 3 weeks. I was on Taxol every week for 6 months had severe nail problems and other things but not this. she's nervous since this is a recurrence and it's beyond the breast now - sternum area and hip. anything to do about this finger and toe problem? she wears the cold gloves. Is there less problems like this on Taxol than Taxotere and where does Abraxane fit in? do you think she should ask about doing it weekly?
thanks
sarah
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Old 08-06-2014, 12:55 PM   #2
linzi
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Re: losing feeling in finger tips on taxotere

A friend of mine lost feeling in her toes after 12 weekly Taxol. Another friend also had neuropathy problem with taxol and her ONC switched her to Abraxane and it was ok for her. Wish the best for your friend.
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Old 08-06-2014, 03:48 PM   #3
Andrea Barnett Budin
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Re: losing feeling in finger tips on taxotere

For what it's worth, I had the same. And then my finger nails turned black and lifted off the nailbed.

I forged on. In '98-'99 I got 4 wks on and then 2 wks off. That was the protocol. And I remained on for about 9 mnths. Worst 9 mnths of my life, but
-- I went into remission! Felt like Taxotere nearly killed me and -- helped save my life.

Plus my supplements, meditation, guided imagery, the power of my thoughts, Love, gratitude....................
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 08-06-2014, 04:36 PM   #4
linzer
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Re: losing feeling in finger tips on taxotere

Is she taking L glutamine? Here's a link to a study out of Dana Farber:

http://www.dana-farber.org/Health-Li...-Symptoms.aspx

I'm in my 3rd week of taking it (started week 6 currently finished week 9) and I've had very mild neuropathy that lasts about 1-2 days per cycle and not even all day - very transient. She needs to make sure it is high grade / pure (which can get expensive).

Also, a B complex vitamin with high doses of B-6 and B12 also taken daily helps as well. Good luck to her!

Linda
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Old 08-07-2014, 01:21 AM   #5
Pamelamary
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Re: losing feeling in finger tips on taxotere

Neuropathy is common with all the taxanes, but the damage isn't necessarily permanent. The doctors need to be kept aware of the extent of the problem., but it is a case of balancing cost/benefit...The nails aren't the problem; that will heal, but nerve damage is more significant. After 2 years, I still fumble a bit with buttons and ear rings. What is important is to keep the once informed.
Best wishes.... Pam
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Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 08-07-2014, 05:44 AM   #6
sarah
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Re: losing feeling in finger tips on taxotere

Hello,
Thanks for these answers. I think they must be worried about nerves and feeling. I basically lost my nails on Taxol, particularly on my feet and my feet and ankles swelled up and I had horrible skin problems but they weren't too worried so I think I may have continued to have feeling in the tips of my fingers and feet. I had mentioned Abraxane to her to ask about, so it's still around and used.
She's also lost a ton of weight, very,very skinny although she's now worked out how to eat on the 3rd week to gain back the weight she loses in the first 2. She has tremendous mouth sores and none of the usual stuff has worked, she's tried everything plus she can't bear to look at food. She walks 7 km fast every other day!!! ah those Vikings!
Thanks again will mention the advice you've posted.
health and happiness
sarah
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Old 08-07-2014, 01:25 PM   #7
CoolBreeze
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Re: losing feeling in finger tips on taxotere

I second the l-glutamine. I had the same problem and the l-glutamine stopped it in it's tracks. I've been on 7 chemos and have slight neuropathy but very mild, nothing that interferes with my life.

As for the mouth sores, I brushed with biotene and used biotene mouthwash. I assume she has tried the magic mouthwash the doctor can give her?

I am too thin too, and eating has become an issue for me. I have chemo induced anorexia but I eat enough to keep my weight in the mid-90s. Best I can do.
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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.
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Old 08-08-2014, 11:48 AM   #8
sarah
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Re: losing feeling in finger tips on taxotere

thanks, cool, will pass this along
be well and hope you get your appetite back
wishing you good health
sarah
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