Calling all TNs
Comments
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Haus, it will get better as it heals. I think you'll be happy you have it.
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Haus, in a few weeks you won't even notice it, really!!!
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It takes a little while to get used to the port. I miss not being able to sleep on my stomach.
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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!
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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
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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!
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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.
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Laika, there are MANY survivors who had positive nodes at surgery, it seems really common.
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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?
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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??
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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!
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@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 🙂).
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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
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hey CarolinaAmy, I would loveto read that research you mentioned!
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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.0 -
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?
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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
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Hi Amy,
Good luck with everything. One thing I want to mention is that I also came across that study about mastectomy having better overall survival for younger women with TNBC vs. lumpectomy. I was SO MAD because all of the doctors (at TOP medical centers) had been telling me there was no difference in outcomes, so they were recommending lumpectomy. Then I read that particular study and I was so mad they didn't tell me! Well, it turns out, that stupid study did not take into consideration BRCA status. DUH! And a disproportionate amount of the younger women were positive for BRCA. And of course, the women who are BRCA positive definitely benefit from mastectomy, because they are more likely to develop another new, fresh breast cancer, so removing the breast tissue drastically reduces the odds of that. I am BRCA negative, so this does not apply to me. When I brought up this study to my MO, he told me that they didn't factor in BRCA status, and I almost didn't believe him because that seems so dumb and such an oversight, but then I went back to the study and sure enough, my MO was right. I was really surprised that the study didn't mention this as the likely explanation for the young TNBC women doing better with mastectomy. Anyway, in the end, I was convinced that there was no extra benefit for me in doing mastectomy. So I chose lumpectomy with radiation, and I'm really happy with my decision so far (but I know people are happy with their decisions to do mastectomy, too).
By the way, of course you may end up with a pCR, and I truly hope so! There are definitely surprises at surgery time. Unfortunately, I got the opposite surprise……I had an MRI after Taxol, and it said there was no mass anymore….we were all sure I was headed to a pCR. Then it turned out I had a .8cm residual mass when I had my surgery. I just finished radiation, and I see my MO next week. I'm hoping to do some additional adjuvant chemo treatment (capecitabine) to really ensure this monster doesn't come back! But my point is, the imaging is really imperfect, and you may really still end up with a pCR. And even if you don't, the majority of women with residual cancer still survive.
Good luck!
Tulips
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Hello all,
LBBC (Living Beyond Breast Cancer) is presenting a program on March 3rd from 6 - 7:30 pm (ET) called "Triple Negative Breast Cancer 360: Waiting for the Future". Below is the description.
During this free program we will explore how, in the future, targeted therapies will change the experience of triple-negative breast cancer (TNBC) - from a "one size fits all" approach to one that accounts for the diversity of medical, emotional and practical needs of people with this diagnosis. The program will feature a panel discussion of leading experts and women with TNBC followed by a Q&A session. Our panelists will discuss this issue from every angle and share their own perspectives. Attendees can also join the conversation by contributing their comments and questions during the Q&A.
You can register by following the link below to attend via web-streaming. (For anyone living in NYC who wants to attend the presentation live, I can also give you those details).
http://www.kintera.org/TR.asp?a=cfLNLWPDLfLEIRMHE&s=hjJWL5PHLhKYJdPSLtE&m=hsIJKZNGKiK0IiL
Oops, the link doesn't seem to be live. Not sure how to do this. If anyone is interested in the program, you can PM me with your e-mail address and I can forward the e-mail with the details and live link to register.
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Kayak2, I just tried that link and it let me register. Thanks. Hope I remember to listen.
Meg
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Yes, Kayak2, thanks so much for letting us know about the program. I registered for it just by going to the website llbc.org.
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Kayak, very cool! Thank you!
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Hi guys and gals....writing from the chemo chair....getting my pre meds then a 15 min wait then the A part....then the C I think she said. Which was opposite of what I'd thought it was. Oh well
Adopted/Rescued the cutest lovable, 1-1- 1/2 yr old Rat Terrier mix. Fawn and White colored. Little 15 lb lap dog mostly house trained too! He came from a hoarding situation. Needs to learn to walk on leash but we will get a lot of practice to make me exercise!! Kids names him Felix.
Will see how we do.....
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Hello all! Thought I would reach out and introduce myself. On my second dx; first time around (4 years ago) was ER+/PR-/Her2-, grade 2, had a high Oncotype score but small tumor so had dd AC x 4 and dd Taxol x 6, followed by rads. Found a new lump in the same area as the previous cancer; we assumed a local recurrence but learned for certain today it's a new primary, this time TN, grade 3. I've already had my lifetime max of Adriamycin, so my MO is recommending TC x 6. After having already had radiation I'll need an mx afterwards. I'm waiting on genetic testing to determine whether I need a bmx or will do umx with DIEP reconstruction (my preference).
My doctors keep telling me how lucky I am to have caught both of these so early and with no node involvement (ITCs last time, and this time, but not enough for micromets) - but I'm just not feeling the luck as I get ready to do this all over again.
I'm still learning alot about TN, as well, and feeling a little less confident about my outcomes as I was before. Looking forward to learning more.
Nancy
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Amy all the advice here is good. We can't turn back time, we can only face forward. The study that was worrying you is known to be flawed as it did not account for BRCA status. My BC also recommends breast conserving surgery not MX: she is a renowned and well-respected expert.
I too had a bad day today - went for my second chemo, couldn't seem to stop crying, really embarrassing as felt I was letting everyone down. Chemo nurses, visiting onc and other patients were all being lovely and supportive but I could not snap out of it. Kindness of strangers just made me feel worse, really really sad. Then when I got home I was angry and snappy with my children and husband and felt even worse again: more tears, ended up sleeping on sofa at 6pm.
Only later I realised I had PMT and had just been feeling hormonal. Big relief, quite looking forward to early onset of menopause now!
Keep smiling at the things you can smile about. Acknowledge all the negative stuff in your head and then just try to breathe: focus on your breathing and let thoughts go if you can manage it (takes practice). I'm thinking of you and sending a big cosmic hug across the Atlantic to you. Just close your eyes, breathe and you will feel it. Lots of love to you all and try not too worry about anything you can't change or influence. XXX
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Amy try to just breathe and take it one day at a time. We are here for you!Thinking of you. XO!
Haus my husband and I had a rat terrier! You're going to love that dog! We sadly lost her at 13 to heart failure but they're hardy dog's. We have three dobermans and she was the "boss"! They were so good with her because she knew how to discipline them. Haha!! Hubby wants another one but not until we dwindle down a little because four dog's were so much work! Enjoy your new addition. Would you mind posting a picture?
Nancy, welcome to the forum but so sorry you're going thru this again. Stick with us and don't google TN because you'll mostly find all the negatives, just like you do when you google anything! Just trust your doc's as they know your particular case better than Dr. Google! This is a wonderful group and we are all here for you! XOXOXOXO!!!
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Nancy, Welcome! I think you will find that TNBC is not as scary as Google.
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I had my second chemo treatment and it was pretty uneventful. Just the usual lightheadedness and shakiness like last time. Chemo nurse says it is the Benadryl and the steroids.
Nancy- Welcome- This is a great place to visit and everyone is so nice.
Scotbird- I am sorry that you had such a bad day. I hope things get better. I am sending prayers and positive thoughts across the ocean.
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Thanks for the warm welcome, all. I learned the first time around that Dr. Google is not my friend!! I do recognize the facts associated with TN and accept them - it is what it is. My first cancer was ER+ with an Oncotype score of 42, or 28% recurrence, so there's always that to contend with, too. In my mind I think maybe the TN and the previous ER+ are going to simply cancel each other out and I'll be home-free after this. (a girl can dream, can't she?) Instead my MO likes to point out I now have two different points of recurrence to watch for. But they're being aggressive, and no one's downplayed this early-stage dx, so I feel better.
Has anyone else here completed TC, instead of the standard AC-T? Therein lies my only concern, as I know the Adriamycin is preferable. Just curious.
Hope everyone is doing well as they start treatment. It's tough, but doable, and in my own experience I can look back now and think, "It wasn't that bad." My husband reminded me that prior to my third AC, I told him I wasn't going, that I was done. But I went - over and over again - and in the end I used my new-found strength to push through some other barriers I didn't think I could do, or simply didn't want to do, including running (I'm training for a half-marathon right now). Funny thing is after all that treatment four years ago, nothing seems really impossible to me now.
*hugs* to you all.0 -
Nancy, I am doing 6 rounds of CT and rads after a lumpectomy. I couldn't do the "A" stuff. I read that 6 rounds of CT instead of the usual 4 is pretty close to receiving the big "A". I have also completely changed my diet and lifestyle hoping that will help keep this beast away. Sending prayers
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