Let's Talk About Chemotherapy - Refusing Taxol Treatment

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Refusing Taxol Treatment

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Category: TNBC Forums
Forum Name: Let's Talk About Chemotherapy
Forum Description: A place to discuss Chemotherapy
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=12905
Printed Date: Mar 26 2026 at 11:37pm
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Topic: Refusing Taxol Treatment

Posted By: Renate
Subject: Refusing Taxol Treatment
Date Posted: Jul 11 2016 at 12:37pm

I have decided that I will not do the 12 rounds of Taxol I am scheduled to start on the 25th. My Oncologist does not yet know about it but I have decided that quality of life is more important to me than living a little longer if that is even the case...how would anybody know. After I had the bilateral mastectomy and the had the lymphnodes removed I was dead set against chemo but let myself by talked into it. I have been miserable with constant pain and then every side effect the AC chemo had to offer. I just have had enough. There is no reason for me to worry about longevity I have nobody here who would really care so why put myself through all that. Just the thought of weekly Taxol treatments for three month while I am stuck inside my house with the walls closing in on me is just too much to even think about. I want to get over the last AC chemo and then start working on getting my health back so I can enjoy whatever time I have left. I am not able to find anything that actually says having Taxol after AC is a MUST HAVE for survival.

I am wondering if anybody has known anybody who decided to do this. I also wonder how it works once the cancer comes back. How much time does one have? I am not afraid to die I am just not willing to be miserable for the rest of the time I have left. I hope this does not offend anybody since everybody here is such a warrior and wants to do everything possible to beat this cancer.

Any information will be greatly appreciated.

Renate

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Dx: 2/12/16, TNBC, left breast&lymph, age 68, Chemo: 5/23 - 7/6/15 4 A/C, 9/26/16 Taxol 7 out of 12 only; Radiation starting 1/9/17 BMX: 3/4/16; Lymph node removal 4/7/16 Staging: Stage 3A, Grade 3;

Replies:

Posted By: MikeW
Date Posted: Jul 11 2016 at 8:23pm

You will notice within my wife's medical history she didn't have Taxol as she's allergic to it and almost died from it. You will also notice the AC plus 7 weeks of rads cleared up the triple negative and her ER+ cancer. She's NED for now. The rads for her anyway nothing but a nasty sunburn. Now the AC what with the nausea, hair loss and general overall weakness was not a walk in the park.

Mike W. Vancouver, WA

My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.

My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.

A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has two cancers, one ER+ PR+ HER2- and another triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.

After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign. Happy dance, she's NED and back on tamoxifen.

Prayers and fingers crossed.

Posted By: Renate
Date Posted: Jul 11 2016 at 8:35pm

Thank you so much for sharing Mike....you just made my day! I am so violently against any additional chemo that it would be impossible to get it into me. I will just take my chances and hope for the best. Once I get over the last awful side effects of the last AC treatment I will work full time on getting my health back and the rest will be out of my hands.

Wishing you and your wife all the best.

Renate

Posted By: GiselaH
Date Posted: Jul 12 2016 at 2:20am

Renate,
I understand not wanting to do unnecessary chemo but chemo might save your life. TN is aggressive and you really should try to fight it so it doesn't come back. AC does the trick for some, for others, it's Taxol.
AC was tough. Taxol on the other hand is a much tolerable experience. No nausea, just tired for a few days.
3 months is not a long time to invest in yourself.
Whatever you decide to do, I respect it but just know that Taxol is really doable

Posted By: kirby
Date Posted: Jul 12 2016 at 5:26pm

Renate,

I had only 4 rounds of AC.....not out of choice but because that was the treatment offered. During that time. I am certainly not advocating for that. Just letting you know. This was 2001, about 4-5 years before they named/specified "our" cancer as TN. I am not sure how much they knew then. I also only had a lumpectomy. Again...that is what was offered. It was only later that they realized what could be the aggressiveness of TN and upped tx to match according to studies. I always considered myself stage 1 but my tumor was 2cm....which some consider stage 2 and as most TN, grade 3.

I took glucosimine/chondroitin for probably the first year after tx for the aches and pains, had regular massage as well as accupuncture.

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kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads

Posted By: Jacklin
Date Posted: Jul 12 2016 at 7:16pm

Hi Renate,

I had an easier time with A/C than taxol, the opposite of Gisela. It seems that each person is different and has different/unpredictable side effects. Given that you've had such a hard time with A/C, perhaps you'll have an easier time with taxol? Like Gisela, I fully respect your decision and don't want to miss any possible treatment that could be thrown at the TN. I understand your frustration with not wanting taxol, chemo is a tough battle and it's hard to keep going knowing how much the chemo is going to take your body 'down'.

I am sorry to hear that there's nobody there to support you, that you are so alone. Have you considered speaking with a social worker at your cancer centre? I am concerned that you are battling cancer by yourself and wish that I were closer so that I could support you, I want someone to be there with and for you. Know that I do care, a lot. You've been so wonderfully open and honest here, supporting each of us as we've been battling the TN too. Just know that I care.

Big hugs,

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Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16

Posted By: GiselaH
Date Posted: Jul 12 2016 at 10:04pm

Renate,

This group of beautiful warriors (and worriers... : ) is extremely supportive. You are not alone even though sometimes you might you think you are.

We are all going through a really difficult time but we still are here for each other.

I am amazed at how caring and non judgmental everyone is on this site unlike other sites on Facebook. You can always vent no matter what.

Have you consider meeting other TN ladies at the hospital where you are getting treatment? Are you religious? Being part of a religious organization helps some people.

Posted By: 123Donna
Date Posted: Jul 13 2016 at 6:39pm

Renate,

We will support you in whatever you decide. You may want to ask your medical team the % with Taxol vs without Taxol benefit. It could help you feel comfortable with whatever you decide. I had Taxotere, but many that had Taxol said it was much easier than A/C. I've always felt having as much information and opinions available to me, allowed me to make a decision I was comfortable with and move forward with treatment decisions.

You might want to go to the "Taxane" section of this article and discuss it with your medical team.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2882502/" rel="nofollow - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2882502/

Please keep us posted.

Donna

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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: MLindaG
Date Posted: Jul 13 2016 at 9:35pm

Hi Renate! I feel your pain with A/C........for me it was horrible! The only good thing for me was my cancer center did not do every two weeks ........it was every three weeks so I was able to recover slightly before the next infusion and I did not have to take the neulesta shot which causes so much pain. I had a lot of nausea and chemo brain. Taxol was better as I did not have any nausea. After all the A/C my tumor was shrinking but not that much........it wasn't until I was about half way through taxol that they said it had shrunk so I'm glad I took it........when I had surgery I had a pcr and I am now 4 years from diagnosis and most of it is just a bad memory!! I only have slight neuropathy in my feet which has been improving gradually. I feel good. Naturally whatever you decide to do I understand and respect. We all must decide for ourselves what we are going to do. I do remember crying the morning of my 4th A/C and telling my dh that I'm not going to get the last infusion. So he talked me into seeing the Dr. (I cried the whole way to the hospital). Then I talked with the Dr. and cried.........then I said OK to the infusion........he did give me a new anti nausea drug which he said was old school and would make me sleepy and I said to him........if I could sleep the next three weeks I will be happy with that! So I did the infusion and actually the 4th time was not as bad as the 3rd...........I kind of slept through the next three weeks!! With taxol my chemo brain improved. I did get a bit of fluid retention towards the end but that was nothing in comparison to A/C. Good luck with everything! I too wish we lived closer as I would love to be there for you like my Sister was for me! Hugs and take care!

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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.

Posted By: kelly1843
Date Posted: Jul 15 2016 at 1:22pm

I just have to add that I also had 4 A/C followed by 12 Taxol, and the Taxol was much easier to handle. Whatever decision you make, I wish you the very best!

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Diagnosed July 2011. Stage 1 tumor, lymph nodes clean. Lumpectomy, followed by four bi-weekly AC followed by 12 weekly Taxol, followed by 34 daily radiations.