Calling all TNs

Joyce so sorry to hear your news. Recurrence is always terrible but thank god yours is a local one. No doubt it was found early and you will beat it.

Luv - grrrrrrr! This f^%%king disease!! You are in my thoughts - I’m sure you are afraid, angry and just so disgusted. But as others have said, you beat it once. You’ll find the fight to go another round - but so so unfair .

I’m in your pocket

Hugs.

Cccmc2, none of us wants to be a member of this club, but we're here to support each other. ☺️

VL22, are you taping your toe? I didn't realize my toe was broken until I went to the doctor six weeks after a painful late night encounter with a dog crate. The toe healed curled up and finding comfortable shoes is a nightmare.

Jcoll, if I recall correctly, my core needle biopsy IHC test result was equivocal (not definitive) so the FISH was done and showed HER2+. Since the biopsy & solid tumor pathology results differed, my oncologist ordered a Foundation genomic test of the solid tumor. It confirmed the HER2- status.

Lyn

Hello there folks,

I'm posting on this thread, even though technically I'm not TNBC. However, according to my MO, my cancer believes otherwise. I was diagnosed with recurrence in January and have liver, lung and peritoneal mets. The peritoneal part was just recently discovered. I started on Gemzar/Carbo chemo and that didn't work. Then, Ibrance/Letrozole with no luck. Now, I'm being put on Haloven starting next week. I think it's mainly used for TNBC patients, so I figured this was the place to get info. Any suggestions or words of warning before I begin this new course of treatment? Thanks for any insight you can give.

Missy

Hi Georgiabirdgirl,

I'm on the last week of my 1st Halaven cycle. So far, it is far much tolerable than Ecdd and Taxol. SE are quite manageable (fatigue, slight nausea, and with the first injection only : headache and some fever). Worst day for me is the second day after injection. But as of the 3d day, I feel much better. Now it seems I start loosing hair ... but I feel wel. I even started aquagym again.

FYI, I wasn't TNBC originally, we just discovered it recently with a new biopsy.

I send you, and all others here, a lot of hugs.

ccmc2 - with a Grade 3 TNBC I would do (& actually am doing right now) the Taxol.

if it were tiny and grade 1 - maybe I could see someone skipping it, but really, even then I'm pretty sure I would have wanted to hit it hard.

If you run your stats through predict and change the Grade you can see how the outcomes differ. http://www.predict.nhs.uk/predict_v2.0.html

Fwiw, taxol is easier on me than AC was. I feel totally different, and am getting tons of stuff done (I'm doing 12x weekly taxol though, not the dose dense. DD AC kicked me on my butt so hard that my MO said it's better to do the weeklies - same benefit profile apparently, just a headache of it being weekly & going longer).

cccmc2 - I would definitely do the taxol. Like me, you had surgery first. Sure AC could have killed off stray cancer cells, but it is reassuring to have taxol do a follow up since you can’t be 100% sure how your tumor would have responded just to AC. Good luck !!

Thanks for those asking about my banged up toes. I did tape them together and got one of those weird stiff shoes. We know st finished a week camping trip at Busch Gardens in Williamsburg and we did a lot of walking. It was really wonderful!!

cccmc2: I too agree about doing the Taxol. It was a very easy treatment with no side-effects at all for me. I suggest doing the weekly treatments for 12 wks rather than the compressed 4 dose-dense treatments. The over-all dosage is the same, but spreading it out over 12 weeks reduces the likelihood of side-effects. Hardest part was arranging for transportation. They pre-medicate you with benadryl so I was reluctant to drive in my very busy/high traffic area in case I became too drowsy.

Yaelle, I like your term “cruise”, better than journey that most people use.

Cccmc2, personally, I found taxol to be worse than AC. However, I was given an extra week between AC treatments, so every 3 weeks instead of every two. I had some neuropathy with T, progressive weakness (so keep exercising!), nightly fevers, etc. However, I would do it again, and you’re a stage higher than me.

LuvbngGma, I’m so sorry about your diagnosis. Did you not have radiation on the first go around? I don’t understand why you can’t have a second lumpectomy. Is it because of your breast size? I had a re-excision, which is basically a second lumpectomy. I’ll be interested to hear the reasoning. Questions I would ask: did they not get clear margins the first time, are there any other scans that need to be done (PET, CT, etc), are there any clinical trials that would apply to you? I’m thinking you must have had radiation the first time and that’s why they say you have to have a mastectomy, because you can’t do rads twice. Again, I’m so sorry you have to go through this again. Hugs.

Hi Joyce,

When I was diagnosed I read about a woman who pursued recon 10 years out. It was re-assuring as I was told immediate recon was not an option for me at the time. 8 years out and I am not considering it. But it is still nice to know it can be done. I am flat, and live this way most of the time. If I want a conventional look I do have prosthesis. I am happy getting on with enjoying life. There is some information and support at: http://www.flatandfabulous.org and on this forum

Best wishes,

Jody

Flynn, from everything I've read Carboplatin + Gemzar seems what a lot of people get with a recurrence. That's just what I understand from reading these boards. Plus, I did AC followed by Taxol+Carboplatin so I don't see why it can't be done after AC.

R

Flynn, that does seem odd. But it could be what the hormone makeup of her recurrence turns out to be. Lots of questions for her to ask.

An old friend forwarded me thisarticle. I thought it was interesting.

http://www.ascopost.com/issues/may-25-2016/dr-susan-love-time-to-address-collateral-damage-of-breast-cancer-treatment/

hollywood, my taxol was supposed to start 2 weeks after ddAC but I had another bout of super low blood counts so they held me back 1 week. If you're otherwise healthy, I think it will be just 2 weeks.

I was also supposed to have my taxol DD but switched it 12 weeklies instead

Hollywood, I started Taxol 2 weeks after AC, even when I was hospitalized for neutropenia right after my last AC. My white blood cell counts were up after a week of hospitalization so we proceeded as normal and I had no issues.

Hope that helps,

R