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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 10:59PM - edited May 1, 2010 11:02PM 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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Apr 9, 2019 08:35AM Stitch wrote:

Fracking - I know exactly what you mean about the positive vs negative thing.  Many positive cancers worse than my own since I'm I too am braca negative.  Stage 0 DCIS homone negative , comedo, high grade, but as of now still contained in the milk duct.  Even with all those "bad" things associated with my DX, they still recommend only lumpectomy and rads.  So I'm sure my surgeon is going to look at me today like I've lost my mind to be considering BMX.  I don't want rads and I don't want chemo down the road.  They've found something, probably benign in the right one, too.  Probably another biopsy based on the other DX.  I want this over.  Otherwise, I'll live in fear that this will return when hubby has retired and we have less funds to take care of things like me being out of work. 

Yet..... I know that so many have it worse than me, so who am I to be complaining???  

Dx 3/2019, DCIS, Left, Stage 0, Grade 3, ER-/PR- Surgery 4/25/2019 Lumpectomy: Left
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Apr 9, 2019 10:23AM mike3121 wrote:

Fracking: It's not often, maybe never, I get a chuckle on this site.

Update on my wife: She once had 3 BC's at once, one of witch was metaplastic under her right arm. Lifetime AC and radiation got rid of that mess. She burned through the AL's and temoxifin, none of which helped. Next was Xeloda witch worked for a time for about one year then it gradually stopped. Also the cancer then turned to regular old fashioned aggressive TNBC with extensive mets to spine and hips. Next came Halaven (eribulin). It wiped out the cancer after just 3 infusions. She's still clear after 2 PET scans and she's been off all chemo's for the last 21/2 months.

Lately she's been a powerhouse of work, cleaning out all sorts of places. She's even re-learning French via CD. Nail biting time as a PET scan is due next week.

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Apr 9, 2019 10:48AM Stitch wrote:

mike3121 how fantastic and encouraging is this??? So happy for both of you!!

Dx 3/2019, DCIS, Left, Stage 0, Grade 3, ER-/PR- Surgery 4/25/2019 Lumpectomy: Left
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Apr 9, 2019 01:43PM VLH wrote:

Mike, Great news on the Halaven! I know that you and your wife must be on pins and needles awaiting the upcoming test and I hope the results will be favorable.

Stitch, I can certainly understand why you are considering BMX surgery;, even with such an early stage scenario; however, I also understand the recommendation for a lumpectomy and radiation. You may have already discussed all this with your medical team so apologies if this information is redundant, but it's important to know that the mastectomy surgery doesn't provide any benefit in terms of a future recurrence over a lumpectomy and rads. The cancer can recur in, for example, the chest wall, even if your breasts are gone. Assuming your lymph nodes are negative, the BMX would allow you to skip radiation . The trade-off is that BMX surgery is generally a more challenging surgery and recovery than a lumpectomy. Further, if you choose reconstruction vs. going flat, there will be an additional surgery and possibly issues with tissue expanders or abdominal pain if tissue from that area is used vs. implants.

Choosing one surgery over the other will not likely have any significant impact on whether you would face chemo in the future. The breast surgeries and rads are considered a local treatment; that is, they only affect the breast area. In contrast, chemo is considered a systemic treatment that impacts the entire body. Although any tumors obviously need to be removed, it's not the tumors in our breasts that really present a threat to life. It's when the cancer escapes the breasts and metastasize to crucial organs that we're in jeopardy (liver, lungs, brain).

These are general, sweeping statements and I have no medical background. I just know that it can be confusing when we are first diagnosed and it's easy to think ridding ourselves of our problematic breasts neutralizes the threat. I would suggest you instead ask questions like: Are you happy with the size and shape of your breasts? If so, the lumpectomy / rads option probably makes more sense. Will the periodic mammograms cause you great anxiety if you keep your breasts? What support do you have in place if you go with the more difficult surgery? What reconstruction options would be available? Because I'd lost 100 pounds, the quality of my skin meant it couldn't be used to craft a new breast with my own tissue. Implants typically mean an extended period of tolerating having tissue expanders gradually filled.

There's a lot to consider and it can be overwhelming and scary. I hope others will correct me if I accidentally made any misstatements. Whatever you choose, I wish you peace of mind and favorable results.

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Apr 9, 2019 09:55PM Stitch wrote:

Lyn, I appreciate the input, andyou are actually spot on! I saw my doctor today. I felt a very huge relief when she addressed all of my questions and concerns in such a way that I have chosen lumpectomy with rads. It was like this huge weight lifted from my shoulders. Now I’m not looking forward to rads. I have “cheap Irish skin”, so I’m not expecting an easy time of it, but I’m also confident and happy with the decision.

I have a biopsy on the pea size and shaped growth in the right breast on Friday. Once that’s done and comes back benign the surgery is May 25th.

Dx 3/2019, DCIS, Left, Stage 0, Grade 3, ER-/PR- Surgery 4/25/2019 Lumpectomy: Left
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Apr 10, 2019 09:25AM FrackingHateCancerMPBC wrote:

Happy Wednesday morning everyone.

It's the tenth of April here in California. Amazing red low crescent moon at midnight last night. Anyone see it?

I see Stitch is more newly diagnosed than me. OK, my DX was 2/2019. I'll say, I like the idea of offering insights. And Info. I think they are insights and we are here for a reason in this space typing to each other, and we have the opportunity to channel the best of ourselves and the best of the doctors we've encountered. So I'm letting my voice sail.

But right now I have to go do early morning LABS.

Then run off to work, because I'm still in treatment. I'd love to hear more about RADS and BOOSTS etc.

MIKE: As well all of what Mike said. It's slightly in need of decryption for me. I get his wife had MPBC (one tumor but not all of her tumors) but I was lost in some acronyms. AL (is that Andriamyacin red devil stuff they call A? and something else? I can google it later.) LIFETIME does that means the maximum lifetime dose?

SO was the original 4 cm IDC the one that was metaplastic? Then it changed to TNBC? And was the Plastic PR+?

Oh and tell your wife I'm at my desk job goofing off all day so I'll check in (I work at a University) and I speak French!!! If she wants to practice. She could join my French Club on DuoLingo. DuoLingo is the best. It'll just be the two of us until we get others to join. I lived in France near the Swiss border for 7 years. It was long after CHERNOBYL but I've decided to name my tumor the chernobyl shark or something. It's a work in progress. Can you name things after they're out? But of course the only thing that kills a shark is another shark or a giant squid. I should name it chernobyl's mouse or something.

Anyway everyone there blamed their minor and major cancers on Chernobyl, and my husband's French and Swiss friends had an inordinate amount of cancers for 30 year olds. No breast though. Anyway, I digress. Definitely needs a weaker name. Like a chernobyl minnow or something if it's going to be a fish. Any way.

I'm seriously thinking about throwing in some red herrings at this point so I'm less identifiable online. um ...I also speak Arabic and I lived in Canada for five years. These are red herrings so not true.

STITCH: The way I think about lumpectomy is it gives you the most options. Which you want. I wanted an BMX (not a dirt bike of course although that would be fun, are we really calling it an BMX?) as well at first STITCH. So happy with my LUMPECTOMY! So happy I'm having it fixed/filled whatever and that's up next before radiation. You can always get a Mastectomy later if you want one. My two cents! ALso if you are offered even briefly a plastic surgery consult, jump on it. That means insurance will pay and just let the plastics guy do his thing. They live in another plane those guys. You'll thank yourself later. If they don't then maybe ask? Also if it's so small then maybe not even a thing. Mine was 4 cm. So bigger. In 16 days it went from 35mm to 40mm. The plastics grow like well tumors I guess but the SUPER fast growing kind.


Late for work and labs...

Plastic TNBC (MpBC) | 4 cm | AC one dose halted | Lumpectomy | Neg Nodes | BRCA Neg | Stage 2 | Grade 3 | 16 days Dx to LUMP | Dent Repair & Radiation up next...then we cross our fingers and live WELL for 5 years and to infinity and beyond!
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Apr 10, 2019 09:50AM kber wrote:

Hi Fracking.  I named my tumor Boris, for no other reasons other than 1) Boris seemed like someone who would barge in uninvited and take over and 2) I've never actually met anyone named Boris so it seemed "safe".  

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/6/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/27/2019 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 7/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 10, 2019 10:15AM mike3121 wrote:

Sorry Fracking for the confusion but her real story is complex and long.

My dear wife doesn't use the computer much with the exception of Amazon and eBay.

Her case is very complex and it all started in November of 2012. She was diagnosed right off with 3 different breast cancers at once. In her right breast was a large ER/PR+, 100% estrogen, Grade 1 tumor. Inside that was an ER/PR+ 30% estrogen grade 3 tumor. In 9 of her 19 lymph nodes removed was triple negative metaplastic breast cancer with spillover of metaplastic into surrounding tissue. Lifetime AC (maximum allowed without causing heart damage) and radiation got rid of that mess. No taxol as she was highly allergic to it and went into allergic shock and passed out in the infusion room.

Months of various estrogen blockers such as arimidex, aromasin and tamoxifen failed to stop the cancers return. A biopsy was done on a metastasis to her hip which showed it 2% ER/PR+ and the rest TNBC. I'm leaving out some other things like an operations for a huge ovarian cyst and a large benign tumor on her kidney.

She was then put on capecitabine (Xeloda) for about 18 months and that kept her extensive spinal and hip metastasis (from small to medium size) in check. Eventually, it stopped altogether and progression ensued. The Dr. said her spine lit up solid red from top to bottom.

Next, her oncologist tried eribulin (Halaven). He related that it seemed to work well on TNBC and especially when capecitabine failed. Wow, did it work! Her last two PET scans showed her clear of all cancer. She was taken off all chemo 2 ½ months ago and is scheduled for a PET scan one in two weeks.

I recently ordered her some Pimsleur French language CD's. My daughter and her boyfriend are also studying French. Her boyfriend is French Canadian but hasn't spoken it in years. Surprising my wife can read French quit well but has problems with pronunciations.

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Apr 10, 2019 09:53PM FrackingHateCancerMPBC wrote:

Hi guys,

Well today's the day my hair gave up the root. Can you imagine? I was suppose to have two more days! It's on my calendar. April 12th: 2nd chemo treatment: you will lose your hair on this day! So I had the party planned. I bought the clippers, invited my daughter and the cats. Considered doing it last weekend the buzz, but in the end a head of hair is convenient. So I thought, ok, that Friday night we buzz it or on Saturday am. Over milkshakes.

Well, today was the day my hair had in mind. Brushed it out, it'll pull out. But it will also stay put if I don't annoy it. So, whatever. Now I'm walking around with extra deader hair on my head wrapped up in a wig cap. I feel like a bride wearing her wedding dress after the wedding still. I'm going to keep it in that creepy way until the appointed time and I'll shave it Friday pm or Saturday am. I threw the wig in the car this am planning to wear it at work but forgot the wig brush. etc etc etc etc etc

So trial run failed sort of day. Maybe it's on Friday that it falls out just without pulling I don't know. I do have a strange urge to shampoo with elmers glue or something.

Anyway. Today was the day and I can say I shared it with all of you! Mike's wife, Mike, Kber, Stitch, whoever started this thread, VLH, Titan, the moderators, everyone here was there the day my hair called it a day!


My hairs like F*** Chemo, we'll see you on the flip side! And today was the day...

Plastic TNBC (MpBC) | 4 cm | AC one dose halted | Lumpectomy | Neg Nodes | BRCA Neg | Stage 2 | Grade 3 | 16 days Dx to LUMP | Dent Repair & Radiation up next...then we cross our fingers and live WELL for 5 years and to infinity and beyond!
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Apr 10, 2019 11:50PM LoveMyVizsla wrote:

Fracking, there is a link to abbreviations under the forum jump up on the left. Welcome. I actually found it so much easier to not have to worry about my hair. I liked my wig, it was better than my real hair. No need to style it, just throw it on and go.

Diagnosed at 51yo Dx 10/5/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Dx 10/30/2015, DCIS, Right, 3cm, Stage 0, 0/4 nodes Surgery 12/10/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 1/15/2016 AC + T (Taxol) Surgery 8/10/2016 Radiation Therapy 9/6/2016
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Apr 11, 2019 09:38AM Flynn wrote:

Nice to see the thread keeps moving! I’ve been sucked into a Game of Thrones marathon while i’m stuck home recovering from reconstruction.

Hope everyone is doing ok today. Good luck with your wig, Fracking. A baseball cap was my favorite head covering but probably not suitable for work!


Dx 2/2017, IDC, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 AC Chemotherapy 8/31/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 2/1/2018 Whole-breast: Breast, Chest wall Chemotherapy 8/1/2018 Xeloda (capecitabine)
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Apr 11, 2019 09:55AM - edited Apr 11, 2019 09:56AM by Flynn

This doesn't seem to have been picked up much in the press, but it would be a big step forward, if it came to fruition. 10 years seems awfully long, tho

https://www.dailymail.co.uk/health/article-6906383/Women-deadliest-form-breast-cancer-saved-simple-test-scientists.html

Dx 2/2017, IDC, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 AC Chemotherapy 8/31/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 2/1/2018 Whole-breast: Breast, Chest wall Chemotherapy 8/1/2018 Xeloda (capecitabine)
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Apr 11, 2019 10:29AM Mncteach wrote:

Fracking— I am at Taxol #2 today and just reading your posts. Thank you! Your humor really helps brighten my day. I must say, your hair is being very inconsiderate, you had the day marked and the invitations out and it decided to jump ship early!! I have a wig, but don’t wear it. I just didn’t feel like me!


Dx 8/31/2018, IDC, Right, 1cm, Stage IB, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 1/31/2019 AC + T (Taxol)
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Apr 11, 2019 02:02PM LoveMyVizsla wrote:

Flynn, it sounds like they wouldn’t give the women with NUP98 AC, but taxanes. But most of us are getting taxanes (paclitexel, docetaxel) anyway. *shrug

Diagnosed at 51yo Dx 10/5/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Dx 10/30/2015, DCIS, Right, 3cm, Stage 0, 0/4 nodes Surgery 12/10/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 1/15/2016 AC + T (Taxol) Surgery 8/10/2016 Radiation Therapy 9/6/2016
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Apr 12, 2019 08:56AM - edited Apr 12, 2019 08:56AM by Flynn

I hear you but I think AC can bring some pretty serious side effects so I would have been happy to know it was working before completing 4 nasty cycles. Some people do have progression during ac. I think the ability to check for chemo response, via simple blood test, may end up being a good thing for those who would respond better to Taxol & carboplatin.

Dx 2/2017, IDC, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 AC Chemotherapy 8/31/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 2/1/2018 Whole-breast: Breast, Chest wall Chemotherapy 8/1/2018 Xeloda (capecitabine)
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Apr 12, 2019 09:44AM kber wrote:

Flynn, I agree about wanting to be able to judge effectiveness. I had my chemo prior to surgery and one positive effect was we could feel the timer shrinking. It helped me cope with the negative side effects to be able to see and feel the positive effects.

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/6/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/27/2019 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 7/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 12, 2019 09:50AM santabarbarian wrote:

I had Taxotere/Carboplatin...x 6... and based on my chemo group, I'd say I had far fewer SEs than many women on AC/T do. I do not know if that was luck, fasting, other complimentary practices I did, or the chemo simply being mellower?

My MO had concerns about AC's slightly higher incidence of long term side effects.

pCR after neoadjuvant chemo w/ integrative practices 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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Apr 12, 2019 09:53AM PiperKay wrote:

As LoveMyVizsla noted, the article seems to say that some people might be able to avoid the AC combo if it's shown that those drugs don't work on their cancer. But that leaves the taxanes, which most of us get anyway, even those not getting the AC for other reasons. So apparently they can't test (yet) for the taxanes' effectiveness? I had chemo after my tumor was removed, but only taxotere and cytoxan, so I guess there's no way to tell how effective the chemo was? Except if I have a recurrence, it didn't work, and if I don't, it did??? Maybe they could test the biopsied tissue? They didn't do that in the study reported in the article...

Dx 11/2018, IDC, Right, <1cm, Stage IB, Grade 3, 0/7 nodes, ER-/PR-, HER2- (FISH) Surgery 12/8/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 1/16/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/23/2019 Whole-breast: Breast
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Apr 12, 2019 09:54AM santabarbarian wrote:

Flynn, kber; agree... I think it's important to know who is/ is not likely to respond to a given chemo, since there's no time to waste on a bad one... and yes, monitoring a shrinking tumor is very empowering.

The one time I really sobbed during the whole cancer episode was the night I felt it had actually shrunk. I sat there, feeling so relieved and grateful, and hopeful... like OMG I might survive this!! You can deal w any baldness, anemia and pukiness when you know it's working.

pCR after neoadjuvant chemo w/ integrative practices 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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Apr 12, 2019 10:40AM FrackingHateCancerMPBC wrote:

Well, I'm a one dose wonder with CHEMO. AC, so I did get to dance with the red devil but just once...Devil

My tumor type is basically proven CHEMO -resistant. Because it's meta -Plastic. Docs still want me to do it, because it's all they have, and it just MIGHT help they can't PROVE it doesn't they say. Also it is the standard of care. We treat MPNC TNBC just like TNBC, until you have a MET and then we don't.

I'll never get CHEMO for a MET because I don't plan to get one of course, but if I do they'll just radiate it.

So I collected the studies and was like, ok sure, my tumor's out so we CAN'T PROVE this AC is ineffective, but here are the first 15 studies of probably 100 that draw the conclusion that NO chemo works on my tumor type, not AC not T not FEC or whatever they're using in Europe. I mean we have scientists for a reason. It's so they can collect and analyze data form hypotheses, run experiments where needed and show doctors where to go next with treatment when they may not know.


Also you know I'm technically cancer free at the moment, so I feel I'm it METS management. Prophylactic METS management so I never get a MET but still. If I get one they won't bother with CHEMO. Because they know how ineffective it is on my tumor. So why on god's green earth am I putting myself through it now? I read one study it's for the new IMMUNOTHERAPY for mPBC TNCB ( meta-Plastic) where the CHEMO actually just pissed the local chest wall post MBX plastic METS tumor off. Then 2nd dose is immuno-chemo mix, tumor shrinks and leaves. So that was just approved for STAGE Four MPBC (Meta plastic only I think - it takes advantage of the metaplastics high death or kill something something that overexpresses in mPBC and makes it so virulent). So in 5 years that will be standard first line treatment most likely for my TUMOR but not today.

Think they can eventually for newly future diagnosed people make mPlastic TNBC CHRONIC, which I guess means it won't kill you any more if you're careful. But as my DOC likes to say, you'll still be eligible for all the other cancers!

Thing is 5 years is too long. In five years my TNBC mPLASTIC story has played itself out. Half of my tumor type will be dead in 5. or maybe it's 65% . Some numbers go as low as 40%. But that's because when it comes back distally we generally die in 8 months. BUT that said, half the time it's never seen from again!

Like the rare Chernobyl Minnow, now extinct. It crawled out of a swap, into a woman's breast one day to hide. They attacked it with needles, they attacked it with tears, they came at it with ill will and admonitions, , then they danced, cried again to shrink it, attacked it with knives, and finally it was gone.

Then they toxified the place it had been and radiated it. Hoping to kill any small seeds it had laid before it left. They imagined dragons to surveill and keep it away. And giant Squid patrolled the swap now..... And it was never heard from again....


Fracking out, off to DERMO to solve a CHEMO rash before reconstruct and RADS. I will be MARATHONING game of thrones too! MNCTeach and FLYNN. We should do a GOT marathon book club sort of thing. Is it your first time through GOT or are you rewatching/ catching up for premiere? I'll be rewatching for premiere!!!


Plastic TNBC (MpBC) | 4 cm | AC one dose halted | Lumpectomy | Neg Nodes | BRCA Neg | Stage 2 | Grade 3 | 16 days Dx to LUMP | Dent Repair & Radiation up next...then we cross our fingers and live WELL for 5 years and to infinity and beyond!
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Apr 12, 2019 11:08AM PiperKay wrote:

Yay, Game of Thrones!!

Dx 11/2018, IDC, Right, <1cm, Stage IB, Grade 3, 0/7 nodes, ER-/PR-, HER2- (FISH) Surgery 12/8/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 1/16/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/23/2019 Whole-breast: Breast
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Apr 12, 2019 11:20AM santabarbarian wrote:

Fracking, do complimentary practices or metabolic therapies help w metaplastic? High dose C, hyperbaric Oxygen, metfomin, melatonin, hyperthermia, keto, supplements, vigorous exercise, etc? These are some proactive things you might check into.

pCR after neoadjuvant chemo w/ integrative practices 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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Apr 12, 2019 02:34PM mike3121 wrote:

Right to Try laws.

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Apr 13, 2019 01:31PM - edited Apr 13, 2019 01:32PM by FrackingHateCancerMPBC

This Post was deleted by FrackingHateCancerMPBC.
Plastic TNBC (MpBC) | 4 cm | AC one dose halted | Lumpectomy | Neg Nodes | BRCA Neg | Stage 2 | Grade 3 | 16 days Dx to LUMP | Dent Repair & Radiation up next...then we cross our fingers and live WELL for 5 years and to infinity and beyond!
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Apr 14, 2019 04:45PM Flynn wrote:

Fracking, I’ve been catching up on GOT. We watched one show a night thru most of chemo. Kept us busy. We’re looking forward to tonight’s premiere. Good luck with rads- glad you didn’t do allthe AC for no expected benefit.

Dx 2/2017, IDC, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 AC Chemotherapy 8/31/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 2/1/2018 Whole-breast: Breast, Chest wall Chemotherapy 8/1/2018 Xeloda (capecitabine)
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Apr 15, 2019 04:56AM Traveler918 wrote:

It has been so helpful to peruse the forums I just wish I had gotten here sooner.

Smile

I am wondering if anyone has experience or advice for deciding for or against rads. I was diagnosed at 43 following a routine mammogram in the fall--IDC, Stage IIIC, TN grade 3, Ki67 95%. The tumor was 1.4cm and near the chest wall but had spread to axillary nodes as well as 1 supraclavicular node.

I completed chemo in January, dose dense AC+T. My axillary nodes began to soften after the first treatment and no longer felt enlarged after the third. I had a double mastectomy 3 weeks after finishing chemo. I was fortunate to have a pCR, with no evidence of the primary tumor. I had ALND with 21 nodes removed and no cancer present but with scarring evident in 6 nodes suggesting treatment effect.

I am considering opting out of radiation and looking for input. I learned I have a BRCA mutation which made my surgical decision easier. I also found out I have a heterozygous ATM mutation which may place me at an increased risk of radiation sensitivity. This coupled with my concerns about damage to my heart and increased risk of lymphedema make the radiation decision much more difficult.

Am I being irrational to consider omitting radiation?

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Apr 15, 2019 07:43AM - edited Apr 15, 2019 07:43AM by Moderators

Traveler, sorry you have to be here, but welcome! We're glad you've found us and decided to post. We've seen this other thread under the Radiotherapy forum that you may want to visit: I want to refuse radiation after bilateral mastectomy.

If you need some further help navigating the main site or the discussion boards, just let us know, we're here for you!

Looking forward to hearing more from you soon!

The Mods


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 15, 2019 08:29AM santabarbarian wrote:

Traveler,

I was in your shoes pretty closely. I also had a pCR. That is just WONDERFUL!!

I did the rads because statistically the long term disease-free survival rate goes up about 10% with rads for those w pCR.

I was also really worried about long term damage, so I elected to get Proton Radiation. You might want to see if you can get that in your area. You will still have SEs, but the radiation can be more precisely targeted and it does not pass through the heart or lungs.

The risk of trouble with your specific genetic mutation must be calculated, and weighed against survival advantage... can you get the % of problems from your RO or MO?

I would approach it that way, and see what the numbers tell me. Good Luck!

pCR after neoadjuvant chemo w/ integrative practices 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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Apr 15, 2019 09:10AM Flynn wrote:

Traveler, in addition to quoting me the likely benefit of rads, my RO also quoted me the odds of experiencing some of the more serious side effects. I went forward. If you are unsure, i’d get a couple opinions. We’ve actually pursued second opinions on every aspect of treatment b/c we wanted to hear all the pro’s & con’s. Our insurance has paid for the consults. GL!

Dx 2/2017, IDC, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 2/28/2017 AC Chemotherapy 8/31/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 2/1/2018 Whole-breast: Breast, Chest wall Chemotherapy 8/1/2018 Xeloda (capecitabine)
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Apr 15, 2019 09:58AM - edited Apr 15, 2019 11:20AM by Trishyla

I chose not to do radiation after my BMX. My circumstances are a little different than yours.

I was 58, an ex-smoker, did not get a PCR, but I only had a single micromet in one node. I figured I've already done enough damage to my lungs. Not sure they could have handled more from the radiation. I also did 7 rounds of Xeloda afterwards to mop up any stray cells.

I like santabarbarian's suggestion to look into proton radiation. If I had known about it at the time, I would have at least explored that option.

Only you can decide what is the best choice for you. Best wishes for continued healing.

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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