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Neuropathy and Taxane Therapy

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trip2 View Drop Down
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    Posted: Nov 08 2012 at 2:54pm
http://www.ascopost.com/issues/october-15-2012/neuropathy-not-predictive-of-outcomes-with-adjuvant-taxane-therapy-in-breast-cancer.aspx
 
Neuropathy is a common and potentially disabling adverse effect of taxane therapy, particularly weekly paclitaxel.
Stage 2 2003
Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mcclure2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2013 at 10:39pm
Speaking of Taxol, I was to  have had 8 rounds of chemo.  I started with 4 rounds of Adriamycin/Cytoxin cocktail and survived those, but when I began round 5 with Taxol that's when all heck broke loose for me.  The doctor stopped all chemo about a month later because of the side effects.  Even tho he stopped it, I would not have taken another round of Taxol.  Pain off the scale, numbness within days of first treatment, difficult standing and walking, etc.  My NNN BC tumor seemed to dissolve after the first 2 treatments with the AC.  At least that was by touch exam.  I went for a lumpectomy with sentinel node dissection on 12/14/12 and the pathology came up "zero cancer".  I am now in 33 rounds of daily radiation.  I didn't want to take the radiation but went ahead and did so.  I was so tired of the pain and suffering experienced during the entire process up to the radiation time that I wasn't sure I had the strength, but here I am knee deep in radiation.  

Just wanted to share  my chemo experience and results with anyone interested.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DArnold Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2013 at 8:23pm
Mcclure....your post reminded me of myself.  I breezed thru dose dense AC then hit my 1st round of Taxol (had to switch to Taxotere due to an allergic reaction to Taxol) but I had horrible leg pain & back pain from the 1st day.  I could barely get from a sitting position to a standing position without being in tears.  I was 46 yrs old going on a 106.  I had read some where that for most people the pain will go away in the 1st yr after treatment has ended.  Those that do not it is more permanent.  So basically I decided I would just live with it and every appt with my oncologist I would mention it but leave it at that.  After a year, I was SICK of being in pain and I think too it was the fact that pain was a daily reminder for me of my cancer to begin with.  I finally had a meltdown and called my dr office.  I said I just can't take it anymore but didn't want to be on pain meds for the rest of my life.  So they sent me to a pain mgmt dr who guess what put me on pain medications.  I actually found out that I didn't need to take the pain medicine nor the muscle relaxer that actually what made me feel better was the anti-inflammatory rx they gave me.  I no longer need to take this daily just when I have "flair -ups".  If I know I am going to be doing a lot of walking, etc I will take in as a precautionary step.  I can tell you it definetely has improved the quality of my life AND both me and my dr are happy that I am not taking actual pain medications Big smile  It may not work for everyone but certainly something that maybe you can talk to your dr about. 
Diagnosed 6/2010 - 8mm triple negative stage 1A no lymph nodes involved. Lumpectomy clear margins, ACT dense dose followed by 36 rads. Crazy tumor markers but scans remain clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CourtneysDad Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2013 at 9:08am
Dear Chemo Therapy patients with Triple Negative,
 
My daughter passed awas from the disease a few years ago. From that experience I can offer the following suggestions:
 
(1) Chemo does not work for Triple Negative at this time. The cancer mutates quickly. We had to keep getting biopsy's done to find the right chemo concoction that would work. It would attack the cancer only to have it come back in a few months. The cancer would mutate and that chemo would now not work. This is what you are experiencing too from what I read in your email. However, this does slow the cancer down. It is a constant battle and you are sick from the chemo all the time.
(2) Radiation does kill the cancer. However, it only works when the cancer is localized. It does kill good and bad cells. My daughter would have burns for weeks from all the cells killed through the treatment.
(3) You might want to contact the hospitals in New York City for doctors. They have the most experience in the country for caring with Triple Negative Breast Cancer patients. There is a large population of affected people and they have many years of experience with it.
(4) You have to catch the cancer before it goes to your lymph nodes. Once in the lymph nodes it will be spread by the blood throughout the body. Even a few cells will do it.
(5) The only way, which I know to eliminate the disease, is to eliminate the source of the disease. The disease in women starts in the breasts and uterous. My sister died of Triple Negative from her uterous and my daughter died of Triple Negative from her breasts. It is radical but one consideration is to have both removed. That is what we have done to our family members, who have tested positive for the disease or were in early stages before getting to the lymph nodes. All have survived for several years & cancer free with this approach.
 
My daughter waited to have her breasts and uterous removed because she wanted another child. Unfortunately in hindsight, I believe this decision cost her life.
 
I wish you well and hope that this helps you.......good luck.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2013 at 6:42pm
Greetings!

One may like to consider reading the posts by Courtney's Dad on Feb 9 at 12:50pm and Feb 9 11:28 pm
(which were posted after the above post of Feb 9   9:08am)
on thread:
   http://forum.tnbcfoundation.org/is-triple-negative-breast-cancer-curable_topic10905_page2.html


Courtney's Dad,
    The most sincere sympathy to you and your family on the loss of your daughter.
                    

With caring thoughts,
Grateful for today............Judy

Edited by Grateful for today - Feb 21 2013 at 9:33pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rosered71169 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2013 at 9:23pm
I was treated at the Cleveland Clinic in Ohio and suffered from severe neuropathy after my first chemotherapy treatment. My sister works for UCLA Medical Center and knew of a treatment that one of the oncologists uses to ward off neuropathy symptoms. I used the following four over the counter medicines every day during chemo and did not suffer any numbness again. Maybe it was a fluke and I wouldn't have had neuropathy again but it was so horrible I didn't want to chance it. Since the meds worked I stuck with the plan and made it through chemo without experiencing neuropathy again.
Melotonin
Alpha Lypoic Acid
Glycosamine
B3
 
IDC 2-21-2012 @ age 42 TNBC, Stage IIA, Gr 3, 1.5cm Tumor Rt Breast, 3 Lymph Nodes, Neoadj Chemo, TACx6,BRCA Neg, Bilateral Mastectomy 7-30-12, 28 Rads, Bilateral DIEP 5-22-13...3 Beautiful Daughters
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2013 at 9:55pm
rosered71169,

Thank you for sharing what your plan was to ward off neuropathy symptoms.
Impressive to go from severe neuropathy to none. So glad to hear your neuropathy was eliminated.
Now, members will have something specific to discuss with their oncologists.
Think there is a difference of opinion among the various oncologists re: what they allow and what
they don't during chemo when it comes to vitamins and supplements.
And as we always add, check with one's own oncologist re: vitamins and supplements especially
during chemo and radiation.


For those preparing for chemo or having chemo now:
Some additional thoughts for consideration, for discussion with the oncologist.
For taxane chemo:
[ paclitaxel (Taxol)      docetaxel (Taxotere)        albumin-bound paclitaxel (Abraxane) ]
- Consider Vitamin B6 100 mg daily.    Check with oncologist.
       Consider starting one week prior to taxane (if possible).
       Continue thru taxane treatment. Some recommend continuing 6-12 months after taxane stopped.
    Vit B6 may decrease/prevent peripheral neuropathy type symptoms.
    Wide range of peripheral neuropathy symptoms from taxanes.
    Many who do get peripheral neuropathy symptoms with taxanes find they do decrease after
        taxane completed. Then there are some who have experiences similar to those posted above.
    Keep provider informed of any neuropathy symptoms.
    Some providers allow other supplements , some allow only Vit B6.
          Most providers do not allow anti-oxidants during chemo.
    If foot/toe numbness, be aware of potential safety (hot water) and balance issues.
    Again, VERY important to check with YOUR oncologist about any vitamin, supplement etc
            during chemo.

One might like to take a look at esp. pp 7-10 (there info and discussion on taxol) on:
http://forum.tnbcfoundation.org/newly-diagnosed_topic9432_page7.html
(There's good info and discussion on the entire thread)


With caring and positive thoughts,
Grateful for today............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2013 at 11:13pm
Arabella, I live in the B'ham area and would be happy to any any questions or concerns you may have.  I finished treatment for TNBC last March and have been doing fabulous ever since.  I'm curious as to what hospital you went to first before making an appointment with the doc at UAB.  

Edited by BamaRachel - Feb 11 2013 at 11:38pm
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2013 at 11:42pm
Hi BamaRachel!  Nice meeting you.  I'll send you a PM.  Thanks for your offer of help.  Kaye
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2013 at 12:43pm
Just to throw my 2 cents into the ring.  I was diagnosed with TNBC 6/11/12. It was stage 3 with a 3.5 cm lump with lymph node involvement.  When I found out I had breast cancer and I knew what drugs they were going to put me on A/C & taxol I visited a Pharmacist/nutritionist/homeopath and Dr. of natural medicine to see what he might suggest as helpful.  He gave me 50 pages of info - some pertinent to my situation and some not.  I decided that there were 4 studies that I felt were important to run by my oncologist to see what he thought.  He told me that he did not feel that the supplements I wanted to take would harm me and was not contraindicated with the Chemo.  One of the studies which was  one on neuropathy - this is what he said "I can NOT recommend that you take this supplement but it does seem to show some promise".  So with the A/C I took  4 omega 3, D3, CoQ10, Buffered C, Probiotic and melatonin.  With the taxol I took 2 omega 3, D3, CoQ10, Probiotic, Acetyl-L Carnitine and Vit. E.  Apparently there have not been enough studies for oncologists to recommend any of these supplements.  The one he thought had some promise was the Acetyl-L Carnitine. The study said "Acetyl-L Carnitine may treat neuropathy in cancer patients on taxol or cisplatin - ALC was found to be extremely effective in alleviating symptoms and treating neuropathy.  Vit. E exerts a protective effect against Paclitaxel-induced Peripheral Neuropathy.
So how did it all work??  I finished my Chemo 12/20/12.  As for neuropathy.......Had very minimal in my fingers......the only thing I noticed was my handwriting wasn't as good as my usual.  Other than that......no pain.........no problem holding anything.......As for my feet........the only thing I felt is that the ball of my foot felt enlarged like it is swollen...........no pain..............no numbness in my toes...I am still feeling the same feeling on the ball of my feet.
 
I had a lot of swelling of my feet/leg actually all over - face was very bloated with taxol and even 3 weeks after my last Chemo I still was short of breath and +2 pitting edema.........so they sent me for a bunch of test to make sure I had no heart problems/lung problems/kidney problems.  All came back negative.  My MRI showed NO CANCER.....No lump left.........Had a lumpectomy and removal of all lymph nodes - surgery 2/12/13. My pathology report showed no cancer.  It looked like I  had 3 lymph nodes that had cancer. 
 
I'm planning on talking with him again to see if he has any suggestions for Radiation which I will be starting sometime this month. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2013 at 8:39am
Randomized Double-Blind Placebo-Controlled Trial of Acetyl-L-Carnitine for the Prevention of Taxane-Induced Neuropathy in Women Undergoing Adjuvant Breast Cancer Therapy

Purpose Chemotherapy-induced peripheral neuropathy (CIPN) is common and leads to suboptimal treatment. Acetyl-L-carnitine (ALC) is a natural compound involved in neuronal protection. Studies have suggested ALC may be effective for the prevention and treatment of CIPN.

Patients and Methods A 24-week randomized double-blind trial comparing ALC (3,000 mg per day) with placebo in women undergoing adjuvant taxane-based chemotherapy was conducted. The primary objective was to determine if ALC prevents CIPN as measured by the 11-item neurotoxicity (NTX) component of the Functional Assessment of Cancer Therapy (FACT)–Taxane scale at 12 weeks. Secondary objectives included changes in 24-week end points, functional status (FACT–Trial Outcome Index [TOI]), fatigue (Functional Assessment of Chronic Illness Therapy [FACIT]–Fatigue), and NTX grade.

Results A total of 409 patients were evaluable (208 received ALC; 201, placebo). In a multivariate linear regression, week-12 scores were 0.9 points lower (more CIPN) with ALC than placebo (95% CI, −2.2 to 0.4; P = .17), whereas week-24 scores were 1.8 points lower with ALC (95% CI, −3.2 to −0.4; P = .01). Patients receiving ALC were more likely to have a > 5-point decrease in FACT-NTX scores (38% v 28%; P = .05), and FACT-TOI scores were 3.5 points lower with ALC (P = .03). Grade 3 to 4 neurotoxicity was more frequent in the ALC arm (eight v one). No differences between arms were observed for FACIT-Fatigue or other toxicities. Serum carnitine level increased with ALC but remained stable with placebo.

Conclusion There was no evidence that ALC affected CIPN at 12 weeks; however, ALC significantly increased CIPN by 24 weeks. This is the first study to our knowledge showing that a nutritional supplement increased CIPN. Patients should be discouraged from using supplements without proven efficacy.

http://jco.ascopubs.org/content/early/2013/06/03/JCO.2012.44.8738.abstract

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote JulieKCA2013 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2013 at 12:38pm
I talked to my doctor about the L-carnatine study.  She advised me that the study did not show any prevention of the neuropathy and actually it may have had some ill effects.  She advised flat out not to take it.  I asked her about L-glutamine and B vitamins (recommended on the forums) as well and she said there wasn't any evidence she knew of for or against and was fine with me taking them.  I also asked her about claratin for  bone pain.  She said everything she's heard of it was from internet lore and they were actually going to do a study to look into it but couldn't figure out to legitimize funding.  I started taking it yesterday the day of my 3rd Taxol treatment.  I receive taxol every two weeks on Tuesdays.  After my treatment I get bone pain on Saturday and residual Sunday.  The second treatment pain was worse that the first.  So I am look forward to seeing how I feel this Saturday especially since we have a baseball game for my son that day.  I am dugout mom and a need every bit of strength to manage those boys.

Courtney's Dad - my deepest condolences to you for the loss of your daughter and sister to this terrible disease.  However,  your post above is inaccurate.  I would just like to reiterate, chemotherapy is HIGHLY effective against TNBC.  I had a 5cm mass and now it is broken up hopefully into what remains is scar tissue.  I will find out at surgery in a month.    Again I send my sympathies to you and your family.  

-Julie


Edited by JulieKCA2013 - Jun 13 2013 at 6:57pm
Dx 3-7-13 TNBC, 5cm pT2N1M0
3-19-13 ACx4, 5-14-13 Taxolx4
7-17-13 BMX ypT1N2M0(.9mm) 4/24 nodes.
10-8-13 completed Rads x 30
12-3-13 completed Eribulin Trial
10-18-13, 3-19-14 Bone/Ct Scan Clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2013 at 1:02pm
Originally posted by Lee21 Lee21 wrote:

Here is a discussion on the use of acetyl-l-carnitine in preventing taxane-induced peripheral neuropathy (http://www.clinicalneurologynews.com/index.php?id=9985&type=98&tx_ttnews[tt_news]=136562&cHash=da03e20e36).
There were actually two trials, the one in the US reported no improvement and possibly worsened symptoms; the one conducted in China reported improvements.
There was an earlier but smaller and non randomized Italian study where they did neurophysiological studies and reported improvement with the use of carnitine (http://www.ejcancer.com/article/S0959-8049%2805%2900429-6/abstract).
One significant difference is that the US trial treated patients for 24 weeks whereas the one in China treated patients for 8 weeks. The Italian study used pre-treatment findings as controls for post-treatment findings.

I think the jury is still out as to whether ALC is useful in preventing taxane induced neuropathy.

12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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