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Old 04-29-2008, 09:26 PM   #1
halfvass
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Taxol neuropathy--advice?

I've had 5 infusions of Taxol and Herceptin (following dose-dense AC) and I am really starting to get some neuropathy in my fingers. They don't hurt. They are just numb and it is getting difficult to do some tasks with them.
I'm wondering if others are going through this and if they are finding anything that helps. I took glutamine for the first couple of infusions and the numbness went away after 3 days. But both my oncologists said to stop it because it can make tumors grow. I do take B12 and a B Complex. Are there other things that your docs recommend? I really want to complete the course of Taxol and Herceptin but I also don't want permanent neuropathy.
Thanks in advance for all of your input.
Hugs,
Deb
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Old 04-30-2008, 05:23 AM   #2
goops
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One thing that I found that has helped Neuropathy is Aloe Vera juice, it really helped me when I had a small stroke. There was a supplement that my oncologist recommended - I will try to find the name when I get home from work. It was kind of pricey - but I breezed through Taxol until the last few weeks.
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Old 04-30-2008, 05:31 AM   #3
chicagoetc
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Taxol and Neuropathy

I think the peripheral neuropathy is one of (or the) most common side effects to Taxol. I finished Taxol/Herceptin together at the end of February. Side effects included neuopathy (fingers, hands, toes, feet) also accompanied by hypersensitivity to the skin in those areas, soreness and pain around fingernails. I used lots of bandaids and some neosporin(depending on the sensitivity) both on my hands and my feet (depending on the area worst affected).

I couldn't walk more than a half block because of the pain in my feet. I couldn't feel with my fingers...i.e. problems with buttoning, typing, turning pages when reading, opening cans/bottles.

My husband helped by "opening" everything I had trouble with. This was important I think to reduce injury caused by applying too much pressure on areas that were numb.

My doctor took me off the Taxol for 4 out of the 12 weeks. My understanding is that the Taxol is important so I didn't want to wimp out. Basically he understood the side effects without me saying much.

The only noticeable after-effects I am aware of is slight numbness sometimes in my fingers. But that may go away too after time.

Apparently most people probably don't have all these side effects...so you will probably be more fortunate. The good news is that most of the side effects disappear.

I need to type a lot at work. I had problems typing all through the time I was taking Taxol. But not now.

All this to say that the neuropathy is common, something you will want your doctor to be aware of. But nothing to be particularly scared of (I think) unless it becomes extreme.

Also if you are only beginning to notice after several infusions, that may be a good sign as well.

Melanie
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Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
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Old 04-30-2008, 07:16 AM   #4
BonnieR
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My oncologist was the one who suggested I take Glutamine for the duration of my chemo. I did have neuropathy in my left side. It was one reason that she discontinued the T/C component of my chemo after 4 doses. I continue on Herceptin. The neuropathy remains but to a lesser degree. Comes and goes.
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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!
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Old 04-30-2008, 12:13 PM   #5
hutchibk
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To me it is just flat out weird for your onc to follow the belief that oral glutamine supplementation causes tumor growth.

Print this entire article out and take it to him and see what he thinks.

http://theoncologist.alphamedpress.o.../full/12/3/312


Excerpts:

"...Glutamine is a gluconeogenic nonessential amino acid that is<sup> </sup>stored primarily in skeletal muscle and liver [14], and is often<sup> </sup>depleted in stress states, such as malignancy [16]. It serves<sup> </sup>as the primary carrier of nitrogen and is the main energy source<sup> </sup>for rapidly proliferating cells. Rapid proliferation of a tumor<sup> </sup>may deplete glutamine stores and subsequently lead to cancer-related<sup> </sup>cachexia [17]. Studies have indicated that glutamine supplementation<sup> </sup>is well tolerated and potentially effective in preventing side<sup> </sup>effects for patients receiving high-dose chemotherapy and bone<sup> </sup>marrow transplantation [25]. Supplementation with glutamine<sup> </sup>can also protect against doxorubicin-induced cardiac toxicity<sup> </sup>[26] and prevents atrophy of the intestinal mucosa in patients<sup> </sup>receiving total parenteral nutrition [27]. Preliminary animal<sup> </sup>studies suggest that glutamine may prevent neurotoxicity caused<sup> </sup>by vincristine, cisplatin, as well as paclitaxel [28, 29]. Clinically,<sup> </sup>paclitaxel-induced myalgias and arthralgias have been successfully<sup> </sup>reduced by glutamine in breast cancer patients [30]. Glutamine<sup> </sup>supplements may also reduce the severity of peripheral neuropathy<sup> </sup>in metastatic breast cancer patients receiving high-dose paclitaxel<sup> </sup>and hematopoietic stem cell transplantation [18]. Interestingly,<sup> </sup>a byproduct of glutamine metabolism has been identified that<sup> </sup>protects advanced CRC patients from oxaliplatin-induced neuropathy<sup> </sup>[13].<sup> </sup>

In the current study, supplementation with glutamine significantly<sup> </sup>reduced the incidence and severity of peripheral neuropathy<sup> </sup>as well as the need for dose reduction of oxaliplatin in these<sup> </sup>patients (Tables 1 and 3). These properties may increase the<sup> </sup>therapeutic index of oxaliplatin. The potential role of glutamine<sup> </sup>as a neuroprotectant may be better understood in the context<sup> </sup>of the current hypothesis explaining chemotherapy-induced neuropathy.<sup> </sup>A study of circulating nerve growth factor (NGF) levels in cancer<sup> </sup>patients treated with neurotoxic chemotherapeutic agents found<sup> </sup>that peripheral neuropathy worsened as serum levels of NGF declined<sup> </sup>[31]. Moreover, the administration of NGF prevents paclitaxel-induced<sup> </sup>neuropathy in mice [32]. Because glutamine is known to upregulate<sup> </sup>NGF mRNA in an animal model [33], glutamine supplements may<sup> </sup>prevent chemotherapy-induced neuropathy via upregulating the<sup> </sup>NGF level. On the other hand, it has also been hypothesized<sup> </sup>that high systemic levels of glutamine may downregulate the<sup> </sup>conversion of glutamine to an excitatory neuropeptide, glutamate,<sup> </sup>which may also account for the reduced symptoms observed in<sup> </sup>patients receiving glutamine [34]...."<sup> </sup>
<sup>

</sup>"...A major concern is that glutamine supplements might protect<sup> </sup>tumor cells from the cytotoxic effects of chemotherapy. However,<sup> </sup>in the current study, no between-group difference was found<sup> </sup>in the response to chemotherapy (52.4% versus 47.8%; p = .90)<sup> </sup>or survival (p = .79; log-rank test). Although in vitro evidence<sup> </sup>of the dependence of tumor growth on glutamine has deterred<sup> </sup>its application in cancer patients [36], several studies have<sup> </sup>failed to show that supplemental glutamine stimulates tumor<sup> </sup>growth [37, 38]. In fact, accumulating in vivo evidence suggests<sup> </sup>that glutamine may actually decrease tumor growth, possibly<sup> </sup>by upregulating the immune system [37, 39]. The net outcome<sup> </sup>may improve the therapeutic index of oxaliplatin. The overall<sup> </sup>lymphocyte response (i.e., entry into the cell cycle and proliferation)<sup> </sup>has been directly correlated with glutamine concentration of<sup> </sup>the culture medium [40]. In a breast cancer xenograft model,<sup> </sup>the supplemental glutamine group had higher natural killer cell<sup> </sup>activity and nearly one half the tumor volume, compared with<sup> </sup>the placebo group [41]..."
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 04-30-2008 at 12:18 PM..
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Old 04-30-2008, 02:46 PM   #6
chrisy
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Brenda, thanks for posting that article.

I had numb fingers and toes while on T/C/H, and am beginning to experience that on T-DM1 (which I think is similar to Vincristine so it was interesting to see that listed as a neuropathy culprit).

My oncologist also recommended Glutamine, along with B-12, B-complex, B6, Folic Acid, CoQ10, Alpha lipoic acid, Acetyl L carnitine, and some others I can't remember - there was a whole list of things (which I am kicking myself for throwing away!). I took all of them. For me, the neuropathy stopped in its tracks, and although it took quite a while to get back to "normal", it did not worsen after I started the supplement regime.

I'll be following this thread in hopes of more info because I could use it myself now~!
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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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Old 04-30-2008, 06:07 PM   #7
goops
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My Oncologist recommend Glutasolve - he told me to take it twice a day for 4 days with each treatment. He not only recommended it - but gave me samples - here is link:

http://www.amazon.com/gp/product/B000IFD3PG

I suspect it is similar to what you were taking.
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Old 04-30-2008, 07:27 PM   #8
halfvass
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Thanks to everyone for the input. I already have the article one of you posted and I am taking it to the onc. tomorrow. I don't just have 1 onc. telling me not to take it, I have 2!! One is at Cleveland Clinic FL, the other at Mayo Clinic in Rochester. I think they are hung up on a few in vitro studies done in the early 90s that appear to have shown tumor growth. That seems to have been disproved by lots of small studies since so I am challenging them on this. Will keep you posted.

Deb
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Old 04-30-2008, 08:51 PM   #9
Bill
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You go girl! You have your ammo. now.
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