Help! Should last Taxol be cancelled?
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Topic: Help! Should last Taxol be cancelled?
Posted By: blumberm
Subject: Help! Should last Taxol be cancelled?
Date Posted: Nov 09 2010 at 12:09pm
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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! |
Replies:
Posted By: Lillie
Date Posted: Nov 09 2010 at 2:17pm
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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 |
Posted By: 123Donna
Date Posted: Nov 09 2010 at 2:40pm
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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 |
Posted By: Neal
Date Posted: Nov 09 2010 at 3:02pm
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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 |
Posted By: M Alison
Date Posted: Nov 09 2010 at 5:40pm
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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 |
Posted By: TNBC_in_NS
Date Posted: Nov 09 2010 at 5:49pm
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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 |
Posted By: TracyAMac
Date Posted: Nov 10 2010 at 8:42pm
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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 |
Posted By: pamelasue
Date 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. |
Posted By: blumberm
Date Posted: Dec 15 2010 at 9:51pm
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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! |
Posted By: angel/jennifer
Date 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! ------------- 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. |
Posted By: krisa
Date Posted: Apr 19 2012 at 10:51pm
| I ended up with permanent neuropathy. It s something you learn to live with. |
Posted By: Tammy O
Date Posted: Dec 28 2024 at 2:16am
| hello. Do you still read this site. I have neuropathy but no one ever says to me it’s permanent. Even when I’m in a wheelchair! I am now out of wheelchair and using a walker - but am fighting like hell to get rid of pain and be normal again. Would like to connect on advice with your outcome. |