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Help! Should last Taxol be cancelled?

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blumberm View Drop Down
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    Posted: Nov 09 2010 at 12:09pm

My oncologist cancelled my last Taxol treatment today.  I had 4 dose-dense AC and 3 Taxol's so far.  They were concerned about permanent neuropathy.  I am also BRC1 + and Triple Neg.  She said that it was statistically insignificant to receive the last Taxol because it doesn't work will with BRCA!!  What???  I feel like my hole treatment has been a failure if I don't get this last one.  I will always worry if this last treatment would have made a difference with recurrence.  The Dr. said I can reconsider in the next few days and get the treatment as long as I realize that the neuropathy may become worse and permanent.  What to do????  Has anyone cancelled a treatment?  Did it make a difference in your recovery?  How about anyone with permanent neuropathy?  Was it worth getting the treatment?  Help me decide!  Thank you all!

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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2010 at 2:17pm
Dear blumberm,
I cannot say whether getting your last taxol treatment will make any difference or not. I do know I am glad I had all 4 of my treatments. Maybe you need to identify how significant some permanent neuropathy would affect your life.
How old are you? What profession are your in? How bad is the neuropathy now? Things like that.

I was left with some permanent neuropathy, but it was worth it to me. In the past 4 years it has sort of become a part of me. Also, it has diminished to the point that it really is not a problem. I cannot turn pages in a book as I once could, I put my feet on my husbands feet at night and have to ask if he has his sleeping socks on. I can't detect the fabric well. I can't pick up a coin or small flat object as well as I once could, but I am fine. I can type, I can play my piano, I can walk.
I hope this helps a little.

God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2010 at 2:40pm
blumberm,

I've never heard of any studies saying Taxol doesn't work well with BRCA+.  Could you ask your onc which study he's referring to?

I had 4 treatments of Taxotere and suffered some neuropathy.  It's been about a year since finishing treatment and have very little neuropathy left.   Wishing you the best on your decision.

Donna
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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Neal View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Neal Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2010 at 3:02pm
I did not have my last taxol treatment. I am past 25 months with no issues. My oncologist said missing this last treatment would have no effect on my outcome. He also said was not worth the risk of having permanent damage that could not be undone. Hope you have peace with whatever decision you make on your treatment.
DX 09/29/2008 Tn Grade 3 2A 2M/Lumpt. 10/08 SN Negative
ACT/Avastin Trial Placebo/Rad. NED Age 53---2 Sons
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M Alison View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote M Alison Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2010 at 5:40pm

How about compromising by lowering the dose?  I received half doses for the last 2 of my 12 weekly Taxols, due to worsening neuropathy.  This was my doctor's advice and I didn't question it at the time.  My neuropathy disappeared by about one month after finishing Taxol.  I think permanent neuropathy is uncommon, but it does happen.  I've never worried about the half-doses or regretted doing it.  At the time, I was quite sick of the chemo effects and so lowering the dose sounded darn good to me.

Let us know what you decide!

Alison

Age 55, Dx 9-08 TNBC, mast 10-08, stage 2, 1/6 nodes, AC + Taxol + Avastin, rad, BRCA1&2 neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2010 at 5:49pm
Hi Blumberm:
 
I am so sorry you are having to deal with all this stuff... It is hard enough to have the diagnosis without all the darn side affects...I do have peripheral neuropathy in my hands up to my elbows and in my feet.  I too cannot do as much as I did before.  My fine motor skills are damaged but I toughed it out with the Taxotere and finished it all. 
 
B12 helps with neuropathy, so you do what you think is best for you!  You are the only one who knows what you are feeling and if you have the last round, you might be putting yourself in more harm with the neuropathy, but that is your decision.  I am 59 and was diagnosed at 58 years old.  I can still type but I have to take my breaks and move, my hands and feet because they go to sleep more often now. 
 
Whatever you decide we will be here for you, so post when you can let us know how things are going.
 
Your sister on the journey,
Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2010 at 8:42pm
Dear Blumberm

My onc. wanted to give me  two extra doses of Taxatere if the neuropathy wasn't too bad - it was what they call Stage 1 neuopathy - I was ok in terms of being able to do most daily functions (just avoid hot plates etc that I could not totally feel.) My onc gave me the option of 1/2 doses for the last two treatments but I decided to go full dose as I wanted to have everything I could get.. I understand that neuropathy usually improves 3-6 months after treatment but would be concerned if there is indeed risk of it being permanent. My onc. recommended taking  B1 and B6 to help - I think it has but not fully.

Good luck with your decision

Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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pamelasue View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote pamelasue Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2010 at 2:37am
I was diagnosed a stage 3/grade 3 triple negative in NOv. 2004 and had my bilateral mast. done Dec. 9., 2004.  So 6 years out, I'm still doing great!!!  I too suffered from neuropathy as a result of the taxol.  My onc. decided on the last treatment (#4 of taxol) to decrease the dosage since it was obvious to him that I was suffering from neuropathy and he was concerned it would be permament.  Unfortunately it was permament and at the time I was scared to death as I wanted to do whatever I could to get rid of the "beast".  So 6 years later I am doing great despite the reduced dosage, however do still suffer from the neuropathy.  He had hoped it would be temporary for only the first 6months but that isn't the case.  Mostly in the cold weather I hurt and also have not much feeling if I were to cut my finger, etc.  But I can live with this much better than the alternative!  Just be careful and trust your onc. to know what's best for your particular case. 
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blumberm View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote blumberm Quote  Post ReplyReply Direct Link To This Post Posted: Dec 15 2010 at 9:51pm

Thank you all for your comments.  I DID have my last treatment permanently cancelled.  I also was put on Nerontin for the neuropathy, but I still have it.  Next week I will be having a bone scan because they don't know if the pain is from the treatment or something else.  Prayers!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote angel/jennifer Quote  Post ReplyReply Direct Link To This Post Posted: Apr 28 2011 at 11:07am
i too am suffering from the lovely neuropathy and am on  neurontin 3 times daily ,tommorow will be doing emg at neurologist to see how ext the damage is ,i recieved cytoxen and taxotere 4 rounds ,also had the bone scan and it was clear !btw the neuropathy was not told to me when i started my chemo i was only told to expect numbness in fingers and toes not this horrible pain and problems with my leg and balance,but even so i have a great neuro dr to make this bearable!best of luck to you!Heart
tn/2.5 cm stage 1/grade3/0of 3 lymph/bilateral subcu masectomy kept nip/immd recronst./diag 8/10/cytoxen/taxotere 11/10-1/12/2011/ brca post.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2012 at 10:51pm
I ended up with permanent neuropathy. It s something you learn to live with.
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