Calling all TNs

ALHusband

CarolinaAmy if it were me (or my wife of course), and I could tolerate it, I would try and do it. Leave no room for 2nd guessing down the road.

Geeper

Allydp- I hope the node is swollen due to a minor infection. Please keep us updated.

HausFrauMi- Yoda does rock! I also signed up for the Look Good Feel Good program. Mine is also on the 14th of March. I am also hoping to learn some tricks. 

Polarpegs,TNBCDad, andScotBird - Welcome to this wonderful group of ladies and gentlemen.  

CarolinaAmy-I am glad to hear that your MO allowed you to have Taxol#11 due to neuropathy improvement. I am glad to hear that tumor shrank.   

Allydp

Welcome to all the newcomers to this amazing group.

AL - what a wonderful honor for your wife!

Amy - glad your MO let you move forward with #11, but even more glad your tumor is shrinking!

I put a call into my BS regarding the node and she got me in right away. She was pretty certain I had 3 separate masses that weren't lymph nodes, but rather fat necrosis. Apparently they can be tender, which I didn't know. She still sent me for an ultrasound the next day just to be safe. The tech did in fact see all 3 masses which measured less than 1 cm each. The radiologist then came in and did her own scan and concurred with my BS. 95% certainty fat necrosis. They offered to biopsy to give me the 100% peace of mind or follow up in 3 months with another ultrasound. I chose the follow up. Everyone seems to be on the same page so that's good enough with me. Now to push all this negatively OUT and bring some positivity IN!

LoveMyVizsla

I had surgery in December, doing chemo now. The surgeon got clean margins, albeit narrow. Like 1-2mm. She wants to do a reexcision after chemo, then radiation.

My question is, if radiation takes your chance of recurrence down to 0-10%, then why do I need a re-excision?

bluedog

Great news, Ally!!!!!

Praline

I had my first chemo treatment today. Went in, did blood, talked to the MO, signed my life away (lol)...Then later I had my first round of Taxol. Very uneventful.

I had a chemo brain moment before even getting halfway through my irst treatment. LOL My friend dropped me off and went off to spend the day with her granddaughter .I was to call her when I was done. Then I realized that I had her home number but not her cell number. I had to call someone else and have her send me the number. We call it chemo brain, A friend calls it CRS syndrome- Can Remember Shit.

Shopgal2

ally good news indeed. Keep on with the positivity.

Lovemyvizsla I had a reexcision a month after my initial lumpectomy due to 2 positive margins. I had 2 separate mm sized areas that were sneaky cells hidden in the margin. I actually waited to have an MRI before deciding to do the reexcision and not a bmx. I agree on questioning why reexcision after chemo if there were clean margins.

Meadow

Ally, yes, happiness.

anotherNYCGirl

Ally! Yay for fat!!

SA8PG

Ally great news!!! Totally agree onward and upward with happy thoughts.

Hugs

Geeper

Ally- This is great news!

cassylou

Fantastic news. As you say, welcome that positivity in x

HausFrauMi

I got my port Wednesday. So far not too happy with it. I can't sleep on my side and I can only take Tylenol since I had a gastric bypass 12 yrs ago. So I am tolerating the pain and muscle soreness. It hurts up in my shoulder area. The incision is a bit annoying but that isn't what bothers me the most. I'm a lefty and its on the left which doesn't help either.

Friday 10:30 am 19th first AC tx. Gonna do my best to enjoy the week.

jenjenl

Haus, it will get better as it heals. I think you'll be happy you have it.

Mamiya

Haus, in a few weeks you won't even notice it, really!!!

LoveMyVizsla

It takes a little while to get used to the port. I miss not being able to sleep on my stomach.

Angtee15

Question for my TNBC friends: did anyone get discoloration of their offending breast during neoadjuvant chemo? I just had Taxol #9 yesterday, then AC to follow. I noticed this very pale purple spot over the area were my tumor would be. It's about the size of a baseball and my tumor was 2 cm at diagnosis. The spot came out the week I missed chemo due to a hospital stay. I pointed out to the MO yesterday and she appears stumped. I definitely agree with her that I appear to be responding to chemo and will be getting an ultrasound next next week. But of course the discoloration makes my head go to things like IBC though I don't have any other symptoms besides the discoloration. Damn you Google!

Shopgal2

oh angtee stay off dr Google. It never is good esp for us tn gals. As for discoloration I'm stumped too. My surgery scar did get a bit darker and I had a spot under my boob that must have rubbed while chemo sweating and rubbed a bit of the skin off.

Haus my port ached for a week or so after. Good that you have a few days to heal before your first infusion. For chemo the anticipation before the first was worse than the infusion. Think you will have minimal side effects was my motto and helped me keep calm and de-stress before treatment. Best advice from my mo nurse was to take it one at a time and not how far I had to go. Oh yeah and the best advice I read here was suck on ice during the adriamycin push to guard against mouth sores

Luvmydobies

Ally, so happy for your good news!!! WooHoo!!!

Haus, the port was uncomfortable for me for awhile too. It'll get better! Thinking of you and let us know how you do Wednesday. Hang in there!

laika_in_space

Hi ladies! I finished neoadjuvant chemo (dose dense AC, then 11 weekly carbo/taxol-- I missed the last dose due to low blood counts) in January. An MRI after the AC showed the tumor shrinking. Clinically they couldn't feel any cancer in my nodes and they couldn't see any on the MRI, so they told me the chance was really low that after chemo they'd be positive. I was scheduled to have a sentinal lymph node biopsy and BMX without reconstruction on Friday. During surgery, because the biopsy was positive, they switched to a UMX during surgery and took 20 nodes. So it looks like the tumor shrank on AC and grew on taxol. We're still waiting for the path report to know more details. My question is: are there any survivors out there that had positive lymph nodes after neoadjuvant chemo? I feel like this is a death sentence.

Mamiya

Laika, there are MANY survivors who had positive nodes at surgery, it seems really common.

Meadow

laika, Welcome! We are so glad you are here. Yes, many thousands of women find at surgery there is still remaining cancer cells. Are you having radiation? Rads can clean up these remaining cells. What does your team say?

Honesty2021

Hello all. I have finished to A/c cycles and it feels my tumor has shrunk already. Anyone else?? Also have you heard of it getting larger on taxol??

laika_in_space

Mamiya and Meadow: Thanks for your input! Yes, I'll be having radiation. I'm just so scared that the tumor metastasized while I was on chemo. Since the chemo didn't even get rid of the positive nodes, how could it get rid of any metastasis? Hearing anecdotes of other people with good outcomes despite positive nodes would really help my anxiety, please, if anyone has one, let me know!

Honesty2021: Congratulations on your tumor shrinking on AC! That's great news! Unfortunately, it is possible for it to get larger on taxol-- that happened to me. But hopefully yours will continue to shrink! Hugs!

Peabrain

@Haus - While my port is more comfortable than it was initially, it has never really seated. It really hurts to bump it, or sleep on it wrong and putting a needle in could be quite painful if they weren't gentle. I can't wait to take it out, but my MO has us keep it for an extra six months, just in case.

That said, I am extremely glad that I have it. My MO tries to do all the chemo by vein, but after two treatments, my veins said no and I got a port. Major, major improvement in quality of life (and limb 🙂).

CarolinaAmy

That's really how I feel about it--thank ALHusband. I realize it has no impact on metastasis of this one, but I want to do absolutely everything to avoid a local recurrence or new breast cancer. And there's some data starting to come out that younger women with triple negative who have BMX have somewhat improved survival statistics. I'm going for it

jlstacey

hey CarolinaAmy, I would loveto read that research you mentioned!

CarolinaAmy

jlstacey, I'll look up what I found. I went looking for it after my surgical oncologist mentioned it. He said he believes there will be more of that as time goes by since researchers are finally looking at TNBC. They're starting to go back and look at chronological studies showing the survival and disease-free survival statistics for TNBC women our age who have mastectomies.

I had responded to ALHusband without realizing there was an entire new page in between those posts! So I went back to address everyone else's stuff, then my phone froze up... and now all of that work went down the drain. ARGH! I'll come back in a bit and redo it.

CarolinaAmy

For the life of me, I can't find that stupid study about younger women and mastectomies! Unfortunately, I HAVE come across the stupid study from 2010 about poorer outcomes for mastectomies vs. lumpectomy + rads. Ugh. I don't want to go through the decision process again, but suddenly I'm doubting everything I had decided on. I'm sure that's just part of the process, but it's not pleasant.

I'm having a rough day of it, to be honest. I think it's the "post-chemo freakout". I am more disappointed than I should be that there is still evidence of tumor remaining after chemotherapy. Something in me wonders if it got worse while on Taxol, which seems to happen to some (responds to one chemotherapy drug but not another). I asked about it in another post but would like to ask y'all since it's directly relevant to TNBC--and please feel free to talk me down from being too inside my head.

*****************************

I'm being paranoid. My post-chemo mammogram and ultrasound show "very little tumor burden". That's great, but I think I have been hoping harder than I realized for a pCR, particularly since my tumor was pretty small to begin with.

So many of you have talked about your tumor responding to one type of neoadjuvant chemo and then growing/stalling on another. I have had a gut feeling that AC obliterated my tumor--after my first treatment, my MO couldn't find it. But I wonder if things just stalled or slowly began reforming during 12 weeks of Taxol. I specifically asked if I would get an ultrasound or mammogram between AC and starting Taxol, but my MO said I'd get my mammogram after finishing chemo and that's it. As long as she didn't feel it growing, we keep going.

That's great, but she could barely feel it in the first place; it's way back near the chest wall and no one else was ever able to palpate it. For her to have felt it again, it would have had to be pretty huge. I wish I could know where we were after AC as a comparison.

And the more I read, the more it seems like most women have some sort of mammogram, ultrasound, MRI, or other imaging between the start of chemo and the end of it. Is this at all accurate?

jenjenl

Amy, you'll drive yourself crazy thinking like that. Nothing can be done about that now. There have been women who went in not thinking pcr and it ended up being pcr. Or went in thinking node positive and being negative. Or flip flop. You'll have real facts post surgery pathology. I did not have any imagining when i was so with chemo.

You have your plan, its a good solid plan. Now mentally prepare.

I can say this now 3 yrs out but i hd regretted not doing chemo 1st for a long time and then i realized that i made the decision or acceptance based on what i knew at the time. I was losing my mind. I had to focus on accepting it was done, nothing i thought or proved would change anything now.

You are on the home stretch, focus on that finish line don't go back.

xo