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Topic: Calling all TNs

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 1, 2010 11:59PM - edited May 2, 2010 12:02AM by Titan

Titan wrote:

I think that we tn's need to have a sign up list like some of the other threads have...maybe put your age, and also what treatment you have had or are now having.

What to do you think?

I can start: age 50, diagnosed at age 49 1/2, lumpectomy, 4 AC Dose dense (every two weeks) and 4 Taxol, Dose Dense every 2 weeks. 35 rads (including 7 boosts) mammogram every 6 months for 5 years (I think). see the onc every 3 months for 3 years, see the Bs every 6 months for 3 years (I think). see the rad onc 1 year after rads...probably won't see him any more after that...

I think this may be a good way to get all together...we can still have separate threads..but sometimes it would be nice to just go to one thread and have a cry or concern without worrying about not being on topic

What do you all think? ..

Dx 3/18/2009, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Sep 23, 2021 02:43PM Trishyla wrote:

Good, MountainMia. Hopefully your doctor has some insight for you and you won't have to spend the weekend worrying and wondering.

Keeping my fingers crossed.

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/4/2017 Xeloda (capecitabine)
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Sep 23, 2021 03:56PM Poppy_90 wrote:

I haven’t checked in for awhile, but please keep us posted Mia. I’ll be with you in spirit tomorrow.

Dx 5/1/2020, IDC, Right, 2cm, ER-/PR-, HER2- Chemotherapy 5/28/2020 AC + T (Taxol) Surgery 10/4/2020 Lumpectomy: Right Radiation Therapy 11/4/2020 Breast
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Sep 23, 2021 05:12PM santabarbarian wrote:

Me too!

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Sep 23, 2021 05:18PM MountainMia wrote:

Thanks, everyone. I'll let you know what I find out. I keep flipping between thinking I'm a big whiny baby, and thinking this is important and I need to address it quickly. Not sure which it will be!! :D

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 23, 2021 06:20PM Serendipity09 wrote:

Sending positive thoughts your way for tomorrow's appointment!

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 23, 2021 06:54PM 1414 wrote:

sending you positive thoughts and prayers.

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Sep 24, 2021 06:51AM Martaj wrote:

Thinking of you. Good luck

Dx 7/8/2019, IDC, Right, 2cm, Stage IIIB, Grade 3, ER-/PR-, HER2- (IHC) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 2/13/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (left); Reconstruction (right) Surgery 2/13/2020 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 3/9/2020 Breast, Lymph nodes, Chest wall
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Sep 24, 2021 12:59PM 1414 wrote:

Mountain Mia, Hoping you had a good appointment 🙏🏻🤞🏻

NorCal and Serendipity, Had my appointment with my Oncologist yesterday regarding Xeloda. I’m going to start on 2000mg a day and see how that goes. The goal is to stay on it for a year. Better get the moisturizer ready for my hands and feet! Since I’ve just finished chemo and radiation I keep thinking about it recurring. I don’t know if I could do this again. Does anyone know the rate of recurrence? My doctor doesn’t do scans unless there’s a reason. Have you all had the same protocol?

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Sep 24, 2021 01:05PM - edited Sep 24, 2021 01:06PM by MountainMia

Thanks, 1414! I have diagnostic mammogram and US scheduled for this afternoon, and we'll go from there. And on the dodgy digestion, I got results back from a fructose malabsorption test this morning. Need to see a registered dietician and figure out how to eat.

As to doing scans, I think it's not standard practice to do scans without symptoms. And rate of recurrence? Too f'ing high...

Have you seen the Predict tool? Sorry if we've talked about this before. Since we triple negatives don't do Oncotype testing, we don't get stats numbers from that. You can try Predict to see large-population stats for your characteristics.

https://breast.predict.nhs.uk/tool

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 24, 2021 01:23PM Serendipity09 wrote:

1414 - like Mia said...too high. I wish there was a different protocol. I had a recurrence less then 5 months after BMX and about 1.5 months after stopping X, but was not dx'd until 10 months because my bloodwork was good and there was no "reason" for scans, little did we know! Now I don't trust the bloodwork. I just know to advocate better for myself if something is off; in my case it was a blemish that I should've demanded they biopsy sooner. Again,I hope you tolerate the X well! I stayed off my feet as much as possible and constantly had my feet slathered in Aquafor. I tried Udderly Smooth at first, but for some reason, I don't remember why, switched.

Mia - good luck! Praying all goes well!

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 24, 2021 02:14PM 1414 wrote:

YIKES! Just looked at the Predict webpage. Certainly don’t like those results. On a positive note, coincidentally I have 3 friends all TN, one diagnosed 9 years ago with no recurrence, another 4 no recurrence and the last 2 years. I’m hoping to join this group. As my oncologist said yesterday the landscape ofTN is changing almost daily. I’m willing, as I’m sure all of us are, to do what I need to never see this again! Keytruda and Xeloda here I come😳

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Sep 24, 2021 02:23PM - edited Sep 24, 2021 02:23PM by Serendipity09

1414 - that's awesome about your friends! Gives us hope, doesn't it?! My MO has said the same about TN and I trust her completely. My recurrence was rare, something she had never seen and a learning experience.

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 24, 2021 02:29PM MountainMia wrote:

Right, 1414! It is changing, and the stats from Predict don't include those changes, because necessarily they are a look back at prior treatments. And either way, the majority of TN patients will be treated and never recur, much less die from it.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 24, 2021 02:31PM Trishyla wrote:

Another positive survivor story is the founder of my in person support group. She's a nineteen year TNBC survivor. And a couple of others in our group are ten years plus.

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/4/2017 Xeloda (capecitabine)
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Sep 24, 2021 02:52PM 1414 wrote:

These are the stories we need to hear more of and focus on. Going down that black hole is hard to climb out of. I’m thinking of finding a support group as well. Certainly can’t hurt being with others that get you. I also agree about being our own best advocate. If we don’t speak up who will?! It’s a beautiful day here in DC! I hope you all enjoy your weekend

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Sep 24, 2021 10:44PM MountainMia wrote:

1414 asked about the rate of recurrence for tnbc. This article from 2019 https://healthcare.utah.edu/huntsmancancerinstitut...

says "Sixty percent of patients with triple-negative breast cancer will survive more than five years without disease, but four out of ten women will have a rapid recurrence of the disease. "

So, really quite high. I know I've read this article before, so I'm not sure why I find that stat so breath-taking.

And this article from 2014 suggests it might be closer to 27% https://pubmed.ncbi.nlm.nih.gov/24558065/

And if you keep sifting through publications, you can see a pretty wide range, from about 16% to the high number of 40% with recurrence. I don't have a clue what the real number is, and while this all gives us an idea, as I said before, it's a look back on disease-free survival based on past treatments. What we get today is not necessarily the same (or it might be almost exactly the same, but the averages would still improve.)

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 24, 2021 11:12PM NorCalS wrote:

With Keytruda in the mix for first line treatment, I’m hoping the survival numbers improve.

1414, 2000 mg is doable. I think after I finished my 6 months of Xeloda, a study came out that showed the lower dose for longer period of time may be better for DFS. Also, less side effects with the lower dose/longer time period protocol. The moisturizing helps and so do cotton socks if you start to have problems with your feet. I started wearing my partner’s cotton socks because his were nice and thick.

Dx 6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/24/2019 AC + T (Taxol) Chemotherapy 4/6/2020 Xeloda (capecitabine) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 26, 2021 07:45AM MountainMia wrote:

I had the US and mammogram for the lump in my scar. Called bi-rads 4 (suspicious but not convincing, basically). The radiologist said it looks like fat necrosis but there was something about the mammogram that made her not convinced, hence biopsy scheduled for tomorrow morning. I should get results before the end of the week. It will be stereotactic biopsy, which isn't what I had the first time. I'll admit I'm a little nervous about it, being under compression long enough to do mammographic guidance. But that was how my clip was placed after the first biopsy, so I know I've done it and can do it again. Mostly I'm just anxious about results.

I was able to keep busy most of the day yesterday and not focused on this. We went to dinner at friends' last night. They are Lebanese and we had fantastic food, and they served coffee after dinner. Neither husband nor I ever have coffee later in the day, and both of us slept badly last night! I actually barely slept at all, between the caffeine and the full belly and the bit of anxiety. Hoping to get a good nap this afternoon and sleep better tonight.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 26, 2021 07:58AM Kayce234 wrote:

I'm Kristen. Im 53 and live in Massachusetts. Triple Negative diagnosis 8/24/21....Er/PR positive diagnosis 11/11/11. Past treatment was lumpectomy, radiation and tamoxifen. This time im scheduled for a Single Mastectomy and most likely chemo.

Dx 11/10/2011, IDC, 3cm, Stage II, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/7/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/17/2012 Hormonal Therapy 3/16/2012 Dx 8/24/2021, IDC, Left, <1cm, Stage IA, Grade 3, ER-/PR-, HER2- Surgery 10/20/2021 Mastectomy: Left; Reconstruction (left): DIEP flap
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Sep 26, 2021 08:12AM Kayce234 wrote:

MountainMia....prayers for good results and sending strength and calm vibes 🙏

Dx 11/10/2011, IDC, 3cm, Stage II, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/7/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/17/2012 Hormonal Therapy 3/16/2012 Dx 8/24/2021, IDC, Left, <1cm, Stage IA, Grade 3, ER-/PR-, HER2- Surgery 10/20/2021 Mastectomy: Left; Reconstruction (left): DIEP flap
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Sep 26, 2021 08:47AM MountainMia wrote:

Hi Kristen. So sorry you are back. Looks like your surgery date set. You won't know for sure tumor size until the pathology comes back, of course, so you probably won't know about chemo until then. :(

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 26, 2021 11:25AM Kayce234 wrote:

MountainMia thanks - based on the size on Ultrasound I'll need chemo if it's proven correct by surgery. I'm prepared for it but hoping not to need it. My boys have already decided if I do chemo and if I loose my hair that they will shave it for me. I actually have a photographer friend who has agreed to photograph it if and when it happens. Right now I'm just trying to get all the "what if" scenarios worked out and planned for so once surgery is here I can then focus on healing.

Dx 11/10/2011, IDC, 3cm, Stage II, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/7/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/17/2012 Hormonal Therapy 3/16/2012 Dx 8/24/2021, IDC, Left, <1cm, Stage IA, Grade 3, ER-/PR-, HER2- Surgery 10/20/2021 Mastectomy: Left; Reconstruction (left): DIEP flap
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Sep 26, 2021 11:39AM NorCalS wrote:

Mountainmia - good luck tomorrow. Hugs.

Kayce234 - are you considering Keytruda in addition to chemo?

Dx 6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/24/2019 AC + T (Taxol) Chemotherapy 4/6/2020 Xeloda (capecitabine) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 26, 2021 11:51AM Kayce234 wrote:

NorCalS - not right now that I know of. So far plan is if it's size on ultrasound 12wks of chemo and if bigger a more intense version. Everything is dependent on the tumor size. Hard to plan ahead

Dx 11/10/2011, IDC, 3cm, Stage II, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/7/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/17/2012 Hormonal Therapy 3/16/2012 Dx 8/24/2021, IDC, Left, <1cm, Stage IA, Grade 3, ER-/PR-, HER2- Surgery 10/20/2021 Mastectomy: Left; Reconstruction (left): DIEP flap
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Sep 26, 2021 11:55AM MountainMia wrote:

Yeah, chemo sucks. There is always a month-of-chemo group that you should consider joining, and of course everyone here will help any way we can.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 26, 2021 12:08PM Kayce234 wrote:

MountainMia - I will definitely join when I'm sure when and if. I'm part of a Surgery Month group also. This board got me through everything the last time around. I did have an issue with a sibling finding the board which caused me to leave but am so happy to have found the strength to return for this diagnosis.

Dx 11/10/2011, IDC, 3cm, Stage II, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/7/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/17/2012 Hormonal Therapy 3/16/2012 Dx 8/24/2021, IDC, Left, <1cm, Stage IA, Grade 3, ER-/PR-, HER2- Surgery 10/20/2021 Mastectomy: Left; Reconstruction (left): DIEP flap
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Sep 26, 2021 12:35PM MountainMia wrote:

Ugh, siblings. Can't live with 'em, can't kill 'em. ;-) Yes, I'm glad you'll be able to get support here again.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 26, 2021 12:48PM Poppy_90 wrote:

Mia: thanks for the update. I’ll be keeping you in my thoughts.

Kristen: I just wanted to reach out from one triple negative Kristen to another. I’m so sorry you’re back.

Dx 5/1/2020, IDC, Right, 2cm, ER-/PR-, HER2- Chemotherapy 5/28/2020 AC + T (Taxol) Surgery 10/4/2020 Lumpectomy: Right Radiation Therapy 11/4/2020 Breast
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Sep 26, 2021 02:22PM LW422 wrote:

Mia--hugs to you. I hope all goes well tomorrow and I'll be waiting to hear "NEGATIVE!" Take care.

Dx 1/20/2021, IDC/IBC, Right, <1cm, Stage IIIC, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/8/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Sep 26, 2021 02:37PM RuthATO wrote:

Hi there! Back on breastcancer.org as I've developed lymphedema but I was here many years ago. Just looked at that predictor tool and thought I'd give you a good news story:

In Nov 99 I started my journey: 5 cm tumour, 17/20 positive lymph nodes, Grade 3, TN (actually wasn't a thing then - herceptin was just getting started). Surgery, chemo and radiation which ended on my 43rd birthday in 2000. My oncologist actually told me a couple of years ago that my risk of recurrence was very low at this time but I remember being frightened of every pain, headache, backache, etc.for many years.

I hope you get as much help from these forums as I did!

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