Let's Talk About Chemotherapy - What road do I wish to travel :(

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What road do I wish to travel :(

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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=10921
Printed Date: Mar 26 2026 at 9:06pm
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Topic: What road do I wish to travel :(

Posted By: sandra2201
Subject: What road do I wish to travel :(
Date Posted: Feb 13 2013 at 11:38am

The more I read to more confussed I get. Had TNBC in 2005 Stage 1b kinda large 2.5 cm no nodes involment, so I went ahead and did chemo 8 rounds and 7 weeks of radiation. Have been fine for over 7 years. Now a NEW TNBC in my left breast. They confirmed that is was new and NOT a reacurrance. Really small only .3 by .5 cm also no node involement. Had surgery and the doctor said she was glad to have given me a second dye. She had a hard time seeing it since the biospy took so much of it already. Did the Savi (internal) radiation for 5 days. Originally my onc wanted to go AC and taxteral 8 rounds but after the report he changed to 4 rounds of a drug I never heard of carboplatin with taxol. Those two drugs together cause kidney, eye, hearding and neropathy problems. He said it was up to me and when I told him I didnt want to he now wants to see me. Are they just pushing drugs on everyone? Plus you can only use carbonplatin once....so if anything happeneds I feel like I will be screwed! Having a hard time getting to a place of peace with anything I deside. Anyone every hear about those drugs or have used them?

Replies:

Posted By: TriplePositiveGirl
Date Posted: Feb 13 2013 at 3:19pm

Sandra,

Just a question, but is chemo even necessary in your situation? Since the cancer was so small, and you had the internal radiation, and no node involvement, I was just curious why they thought chemo was necessary. You might want to seek another opinion on this too. I did have carboplatin along with gemzar, not taxol. I found the chemo to be very tolerable, as chemos go. I don't know anything about the combination of carbo and taxol though.

Best Wishes,

Lisa

Posted By: debB
Date Posted: Feb 13 2013 at 7:54pm

Hi Sandra,

I did Cisplatin, a cousin of Carboplatin, so to speak, on a clinical trial. I did not have it in combination with Taxol but I did have Taxol with my initial chemo. I found the Taxol itself to be much better than the AC and did not find the Cisplatin to be horrible either. I did experience ringing in my ears with each infusion but the worst of it was always gone in a few days. I made sure that I pushed plenty of fluids (including Gatorade, not just water) and had no kidney problems. My neuropathy did get a little worse with the Cisplatin, but not horribly so.

SO very sorry you are having to go through this again. I am assuming that you have had the BRCA testing done. A second opinion would certainly be worth the peace of mind that you might gain.

Hopefully some others will chime in also.
Deb

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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial

Posted By: 123Donna
Date Posted: Feb 13 2013 at 9:21pm

Hi Sandra,

I had Carboplatin with Gemzar with my recurrence. I thought this combination so much easier than Cytoxan/Taxotere. I was able to work full time and did not lose my hair. My friend that has a gynecoogical cancer had Carboplatin and Taxol. She did very well on it, never lost her hair (thinned a lot), and was quite active during treatment.

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: sandra2201
Date Posted: Feb 21 2013 at 5:59pm

Thanks for responding. I told my onc I was not doing chemo again. It's not the immediate effects since I really didnt have that much the first time. Its I dont really want more posions in my system and could cause more harm than good. I have been checking out the three (that i found) web sites that you get to input your stats in and get an percentage of survival with and without chemo. Doctors said 75% clean in 10 years with no chemo (but smallest turmor size was 1cm) another had 88% and the last one had a quote as shortens the life of a 58 yr old by 1.2 years with no chemo and improval of only 6 months with chemo. We just all need to be strong and live. Thanks for your support.

Sandra

Posted By: Grateful for today
Date Posted: Feb 22 2013 at 12:43am

Sandra,

Thank you for letting us know your decision.

There are so many difficult decisions with TNBC.
I think in such times one trusts one's "gut" "intuitive" feeling after looking at the available information
and then makes the best decision. From your posts, it sounds like your "inner wisdom" spoke to you.

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

Posted By: 123Donna
Date Posted: Feb 22 2013 at 8:52am

Sandra,

Wishing you the best.

Donna

Posted By: TriplePositiveGirl
Date Posted: Feb 22 2013 at 12:18pm

Hi Sandra,

I completely understand your thought process and I am of a similar mindset. I wish you all the best for a long and healthy, cancer free future.

Regards,

Lisa

Posted By: btstark2003
Date Posted: Feb 23 2013 at 10:36am

Hi Sandra,

Sounds like a great decision to me. I had adjuvant chemotherapy that was pretty rough after both my first and second occurrences (Stage 1 and then Stage 2a), and it did not prevent a recurrence just a year later in both cases so I feel like I went through all that sickness and toxicity with no benefit. I'm not saying I made the wrong decisions - I followed my doctors' advice for my particular situation and was just very unlucky, but had my tumors been smaller like yours I think I would have made the same decision as you.

Don't get me wrong - Chemo has done me a lot of good on my third and fourth occurrences (see regimens below - I have had both carboplatin and taxol at various times) so I am not against chemo at all - it's saving my life right now. I just question whether the benefit outweighs the risks with adjuvant chemo for early stage node negative TNBC when surgery and radiation have already been successful and the patient is NED. When you have chemo treatment with no tumor remaining to follow, you just have no idea if the chemo is effective against your particulars flavor of TNBC or not.

So glad that your second occurence of TNBC was caught when it was still tiny! And please don't ever waste any emotional energy second-guessing your decision.

I hope that you are feeling strong and embracing an anti-cancer lifestyle to ward off recurrences in a natural way! I will say prayers for your complete healing.

Peace and hugs,

Beth

-------------
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda

Posted By: sandra2201
Date Posted: Feb 23 2013 at 1:57pm

Beth, it sounds like you have had a rough time going thru chemo and having a reacurrence. That just does not seem fair. You go thru all the steps they tell you and then WAM you get it again. I have had a bad case of the "what if's) this week. Maybe I should do the 4 rounds of Carbonplatin and Taxal (maybe I can ask for something besides Taxol). One does not have to finish all 4. Its better than the 8 I had last time. I have contacted MD Anderson in Houston for a second opinion. But maybe its better to just do it so I dont second quess everything and do all I can do to prevent anything from showing up somehere else. That is after all what the goal is.

I am starting to take more vitimans like b complex, mushroom complex and Astragalus which are really good for your immune system. Just read an artical about mushromm and astragalus. Have you ever heard of them?

I also wish you the best of luck, and know you are not alone out there.

Sandra

Posted By: sandra2201
Date Posted: Feb 23 2013 at 2:01pm

Lisa, I too was wondering if chemo was need for something so small. My surgon said she would not do chemo, my radiologist said she would not, but the onc guy said he would have even his sister do it since you "never know". As I posted earlier I have contacted MD Anderson in Houston for a second opinion. I hear some people have the chemo and are fine some do not and are also fine. I just dont want the "what if's) to creep back into my mind. Heard alot of people talk about carboplatin and gemzar I will look into it.

Sandra

Posted By: DebWarrior
Date Posted: Apr 10 2013 at 5:53pm

Hi Sandra,

I'm curious what you found out from MD Anderson. I'm in a similar situation with a new TNBC, 6 mm. Doc is recommending carboplatin and taxol and I'm not sure whether to do it. What did MD anderson say?

Debra

Posted By: sandra2201
Date Posted: Apr 11 2013 at 8:08am

Dear Debra, I went to another doctor in my area and they showed that a tumor as small as mine chemo had no benefit so I didnt do chemo. That being said my other doctor said that carboplatin and taxol were just as strong and A/C and I checked the US trail data base and found that they dont really have data on triple neg tumore and carboplatin and taxol it is still ongoing. If you are going to use those two be aware of the side effects an start taking mushrooms complex and astragalus and fish oil. All can be found at the health food store. Carbopolatin will interfer with your nevers in your fingers and feet. Last time I went thru chemo (7 years ago) I ended up with osteroarthritis in my finger joints and didnt want to make it worse. A great book to read is Natural Strategies for cancer patients my Dr Russell Blaylock. There are alot of things you can go before chemo starts and during that can help with protecting your body from the the bad drugs they want to give you. Ongologist dont really know about nutriitional things you can do for yourself to help fight your cancer and make chemo work better.
I hope this helps is some small way I wish you luck in whatever you deside. But a tumor yours size chemo should be used if it is 6mm and not .6.
Sandra