Calling all TNs
Comments
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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.
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I have an important question I'd like feedback on... so I was diagnosed with Tnbc a couple months ago. Thankfully, my surgery went well. I had no lymph node or vascular involvement as well as clear margins. All of my genetic testing was also negative. I debated even doing Chemotherapy but was told the protocol was 4 AC and 4 taxol. I have completed the AC - and I'm having thoughts about not doing the taxol? Does anyone have any advice by for me or hasn't anyone just gotten the AC treatments for a similar diagnosis? Any thoughts are welcome! I don't take this lightly. My Dr was even debating the taxol butdecided should go with protocol.
Thank you ladies
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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.htmlFwiw, 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).
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thank you for this
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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!!
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VL22,
Thank you. I’m leaning towards the taxol
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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.
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cccmc2, - I, too, would say to do the taxol. I found it easier than the AC (and I had the dd taxol) and it's worth doing everything possible!!
I am far behind in my posting and responding. I wrote a long post a week or so ago, and somehow accidentally deleted it. SO FRUSTRATING!!
Welcome to all the newbies, and congrats to all those celebrating milestones!!
Hugs to all here. You make this 'journey' do-able! I wish we could all get together one day!!
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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.
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LoveMyVizsla: yes, I had 33 rads. Clear margins first time, but surgeon wanted wider margins, so had re-excision after chemo.
EKG, MRI, bone scan, and CT SCAN of chest, liver, etc. all scheduled this week.
After reading about complications and recovery time involved, I am leaning toward no reconstruction.
Any experience with reconstruction at a later date
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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
https://community.breastcancer.org/forum/82Best wishes,
Jody
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Hi. So I did carboplatin with Taxol during adjuvant therapy. My friend with a recurrence is interested in trying carboplatin. She had ACT prior to surgery. Her mo seems resistant b/c she’s already done AC. That doesn’t make sense to me? I don’t know if carboplatin is best choice for her but I’m not aware of it being risky after AC.
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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
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Flynn - makes no sense. I’d get a second opinion.
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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.
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thanks ladies. I found out that the woman i mentioned had some cardiac side effects during ac and that seems to be impacting the MO’s choice of meds.
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An old friend forwarded me thisarticle. I thought it was interesting.
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could anyone tell me if there is a downtime/breakwhen switching from DDAC chemo to The T chemo or is it just 2 weeks after dda
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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 instead0 -
moth, thank you!
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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
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rdeesides, thanks
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I had a sentinel node biopsy during surgery which was negative. So surgeon stopped there.also no vascular invasion.. And clear margins...Does that mean for sure no other nodes could be involved? I'm always questioning this.... I keep forgetting to ask my onc!
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cccmc2 - from what I've been told, there is never a 'for sure'.
It's always a balance of probabilities. The odds are that it the sentinel is clear, the other nodes are not affected. But there is no guarantee and I read a report which reminded surgeons to do a visual inspection of the area as in this case study the sentinel was clean but something further on was not. We also have lymph nodes in the center of our chest, in the cleavage. Nobody tests those but if you have a tumor in the lower inner quadrant (LIQ), apparently that can be a route of potential spread.
I'll be discussing with my RO whether there is an benefit to doing rads to the internal mammary nodes as I had a LIQ tumor.0 -
Hollywood19, I went straight to taxol after my ac was finished. hope this helps.
val
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valstim52
Thanks, it appears we same type and stage. Did your tumor shrink after chemo
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me again with another question... I notice most have radiation as part of their treatment plan. My onc says I don’t need it. She also says I don’t need a body scan either which I’m confused about. I plan to ask when I see her next week. Just curious for your thoughts. My sentinel node biopsy was negative. Clear margins, Maybe that’s why? I just want to make sure I do all I can
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cccmc2, I'm not having radiation either. My lymph nodes were clear, and I had a BMX. The tumor board met and agreed that radiation wasn't necessary. I also had a pCR and was declared NED. With limited treatment options for TNBC, I worry about not using every tool in the toolbox, so to speak. But I have to trust my team of doctors.
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I had radiation because I had lumpectomy. It’s my understanding that if I had done a mastectomy, I wouldn’t have needed rads.
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My understanding is that radiation is determined by lymph node status, size of tumor & surgery. My lymph nodes were clear but I had radiation b/c of size of my tumor. I had a bilateral mastectomy.
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