Calling all TNs
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QueenKong, so glad you popped in! And very glad you are doing so good. This is a great encouragement to us all! Thanks for sharing your good health.
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Hi QueenKong. So great to see another 3+ year survivor checking back in with us. Thank you for sharing!!!!!
Much love & blessings
G
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thanks for the links for the latest research going on. There was one more useful link posted a few days ago about targetted therapy for tnbc in this group..can anyone forward it again!
Ally...you look fresh and beautiful and so happy that you shared the pictures with us. Must have been quite a moment!!
All the best to the ones whose treatments are on or about to be over..
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It's been exactly one year to the day that my onco doc called me with the bad news. I guess it's my official first "cancerversary," then, right? I'm celebrating with a huge, homemade iced coffee, w00000t! Pretty lame, but hey, after last year's hell, I'll take it!
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Congrats to you arkadapted!!! No more cancer, huzzah!
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i love that word huzzah! :-D.
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Hi everyone...I was diagnosed almost four years ago and doing well. Saw that Queenkong posted. She and I were part of the chemo 2012 group. We all met in Vegas and still stay in touch! This website has been incredibly helpful to all of us! I couldn't have done this journey without all the wonderful ladies I met here online!
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Hopex3: thanks so much for visiting. Folks doing well and keeping cancer at bay are an incredible pick me up I think for all of us. I have a friend who's triple negative and she's 15 yrs out of chemo/rads/surgery and doing great too.
lovemyvizla: can you tell I read a lot? Huzzah is an old time-y cheer! Huzzah to all us cancer fighters!!
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My brother lives near Williamsburg, VA, and the historic reenacters use the term Huzzah. I even have a little tray with that word on it.
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AAAh, a west coaster that's still awake. How are you healing from your surgery? I have some lymphedema in inner edge of the breast where they did lumpectomy/ on the outer side. When I take steroids it gets all red and swollen. I am waiting for referral to see lymphedema Physical therapy. Feeling a little peaked after round 4, but its tolerable and that's a good thing. Blessings to you! A
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Arkadapted so happy to hear this. We are celebrating that one year milestone with you. Congratulations. Looking back at all that you have gone through and seeing where you are now & have yet to go helps so much. Thank you for letting us all know. (((((((Hugs)))))))
Hopex3. 4 years!!!!! Thank you thank you for stopping back to let us know life is moving forward and that you are well. Continued good health to you & lots of blessings!!!!!!
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arkadapted huzzah and congrats. I just passed my 1yr from dx last month.
I was wondering when we count ourcancer anniversary? Is it our dx date? Or our free from cancer surgery date? Or the end of chemo or rads date?
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Congrats and thanks to the longer-term survivors checking in.
Shopgal, I passed my 1 year from diagnosis in mid-April, but my surgery was not until November 2015. My MO said to use my surgery date, but I decided to ignore him ;-). When I realized that the big TNBC study that showed the recurrances slow down after 3 years, and then really really slow down after 5 years, and are basically nonexistent at 8 years, used diagnosis date, I decided that diagnosis date makes sense! Plus, I like that it gets me to the 5 year mark 7 months earlier ;-).
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Thanks, everyone! It still doesn't seem real...
And yes, HUZZAH!!! Reminds me of many (very sweaty) summer excursions to the Bristol, Wisconsin, Ren Faire when I lived in Chicago. W00000000T!!!
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Did all you TN ladies do rads? I've been reading where some women with early BC, lumpectomy, clear margins and no lymph node involvement skip rads. I begin in one week and I'm second guessing this last step in treatment.
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I'm triple negative and am doing rads even though I had clear lymph nodes. Both of my doctors have recommended it for me even with having a BMX. My MO said that I'm borderline and some doctors would not recommend it, but with my age (41) and the TNBC, she thinks it's the best course of treatment. My BS agreed 100% so I'm doing it
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Cathy, I too, had clear margins, no nodes, (and am the same age as you). Had 6 wks of rads. NO big deal, no "promised" exhaustion or other negative effects. I'm 5 yrs out and counting!
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Great news ADarkAdapted
I'm recovering well and a week after surgery now. Just had a phone call from BC nurse, who said she wanted to call me ahead of my Monday appt. to let me know the path report showed a PCR. I've been feeling unlucky these past few months but today I feel as though my luck could be changing. So it's a big Huzzaaaaah! and Wooooot! from me too. Have a great weekend everyone. XX
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CATHY, I had clear margins and rads, this is protocol for IBC.
ADARK AND SCOTBIRD, a big huzzah (yes!) To you both! I think we have our official celebration word!
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Cathytoo, our stats are the same, and I would LOVE to skip rads. However, I'm sure I will get the party line, which is that rads are standard for TN. Can you give me some links to what you've been reading regarding skipping it?
Had taxol #8 yesterday. Got a call from the surgeons office to set up a reexcision pre-op meeting, July 11th. I am happy with the way my breast looks now, how much more tissue is she going to take?
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Scotbird, that's awesome news!
I just got back from my first MO appointment post surgery, and there has been a change of plans. Because I didn't have a PCR (even though my margins were clear and lymph nodes were clear), she wants me to do four infusions of Carboplatin and 6 months of Xeloda. I'm going to do some additional research, but I'll probably go with her recommendation. She had previously decided not to add the Carboplatin to my Taxol since I was BRCA negative, but I have a strong family history of breast cancer, and so she now thinks it's a good idea.
My head's spinning a bit right now. I had ticked chemo off my list and was mentally prepared to start radiation in a couple weeks, and now I've been thrown a curve ball. Also this will delay my reconstruction, but in the grand scheme of things, that shouldn't be a huge deal.
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When I was dx, back in 2009, If you had Mastectomy and chemo for TN, Rads was only given to those who had 4 or more positive nodes. I had 3 positive nodes. 1 was large (2.5 cm). Then about a year or two later the standards changed. and Most people get rads. I was a bit mifffed that I didn't get rads....but I guess things worked out. I'm 7 yrs out now. As far as cancerversary... I always thought that it was fitting to use the dx date because that is when MY "fight" began.
I don't post much anymore but this site was a real godsend when I was going through treatment and then afterwards having a scare or two.
Nowadays just trying to live a good life. Wish I could say that I don't think about cancer anymore, I still do...kinda hard not to when you look in the mirror and your scarred up chest is right there. But as time goes on, things get better and the dr. appointments lessen. You realize that you have given enough of your time and energy to cancer. And it's time to live well.
Big hugs to everyone.
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Yes, HUZZAH to all those celebrating!
Kelly, I'm so sorry for your unpleasant surprise today. I wanted to write to let you know that I also had residual TNBC (.8 cm), and am currently on Xeloda. I just finished round 5 of 8. I don't even feel like I'm on chemo. Since it's an oral/pill chemo, you don't go to the infusion center (just periodic blood checks). And I've had very minimal side effects. I had zero side effects in rounds 1 & 2. In rounds 3,4, & 5, I've had mild/manageable hand/foot syndrome, in my feet only. But I still just biked 15 miles to go out to lunch with friends today, even though this is one of my "worst" foot days. Such a fun, beautiful adventure. I've had zero nausea/diarrhea, etc. I have had some mild headaches (which worried me, so I had a brain MRI, which was clear, phew!). These could be from the Xeloda or from just some regular non-cancer source (migraines?). But basically, I am finding Xeloda to be a piece of cake compared to ACT chemo.
As far as the carboplatin goes, I am also BRCA negative, but with some family history. I had carbo along with my Taxol treatment, but I really don't think it did anything useful for me. I know another woman who just went for a 2nd opinion at MD Anderson. She is anticipating residual (she's having her surgery in 2 weeks but is done with chemo, and there are signs of residual). At MDAnderson, they said that they would not give her carboplatin, given her BRCA negative status. So you might want to get a 2nd opinion on that piece if it makes you uneasy. There could be something specific in your family history that points to carboplatin being particularly helpful, of course! But I think the study that showed the impact of Xeloda on the residual TNBC patients was compelling enough to make me excited to take it.
No matter what, it is definitely jarring to face extra treatment when you thought you were done. But you can look at it in a positive light: the research that shows these extra adjuvant doses of chemo can be helpful is BRAND NEW. So we are lucky to have access to these "insurance/bonus" chemos! Before you know it, you'll be done. Good luck!!
Tulips
PS Navymom and other long-term survivors, thanks for posting! We all really appreciate it!!
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Thank you for your post and advice, Tulips. It's good to hear that Xeloda has been pretty smooth for you so far. I may get a second opinion on the Carboplatin - that's interesting about your friend and MD Anderson. My MO was moved by some research that was discussed at a recent breast cancer symposium - she was on a panel discussing it with several other oncologists from around the country. She is recommending it on a case by case basis. She said looking at my pathology report, she thinks I'm a good candidate. I'm going to do some more research and come up with some follow up questions for her.
And yes, it's so great to see longer term survivors check back in! My mom was diagnosed over 11 years ago (TNBC - pretty much the exact pathology as me), and is also doing wonderfully with no reoccurance.
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Hi Kelly,
Well it sounds like your MO knows what she is talking about ;-). Plus, with your own mother having TNBC, that sure is a strong history. Were you checked for all the genes?
I had a huge multi-gene panel run, and I was negative for the BRCAs and almost everything else, but had a mutation on one gene, RAD50, which is currently considered a "variant of unknown significance". Someday they'll know if this is a harmful or innocuous mutation, but it is considered "likely benign". I, however, am skeptical. My great grandmother died of ovarian cancer. My grandmother died of breast cancer (at an older age) that quickly metastasized to her brain & liver. We don't have the medical records to know for sure that it was TNBC, but she was not on Tamoxifen or an AI, and so I'm guessing she was TNBC. My mother had uterine cancer at age 38, which is NOT supposed to be related to breast cancer, but is a young age for cancer. So overall, I feel like there is a decent amount of family history there, so I bet that RAD50 turns out to be something.
Anyway, I think with a 1st degree relative, it makes a lot of sense that your doctor finds carboplatin compelling. I only hesitate out of laziness--with carboplatin, you are on real chemo. If you just have to do Xeloda, with it being a pill, and your hair grows back, etc, it kind of feels like you are done with chemo and just moving on to a maintenance phase. Xeloda feels like "chemo-lite" to me. However, I should caution that of course there are people who find Xeloda difficult. I may just be lucky. I am 46 and quite healthy otherwise. But it is so great to have my hair growing back (although, of course I hate it at this stage, I think I look like Kramer from Seinfeld, but at least it is hair).
So I guess my point is, obviously don't listen to me! I'm not a doctor. I do always think multiple opinions are good, but it sounds like your MO is a good one! Good luck digesting all of this.
Take care,
Tulips
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Thanks so much, tulips! Supposedly Carboplatin on its own rarely causes hair loss (this is one of the 1st questions I asked!) It seems like the side effects of both of the drugs are usually pretty manageable. I made it through AC & Taxol with very minimal side effects, so I'm hoping for the same.
I did get tested for the full panel and was negative for all. Everyone was really surprised. Like I said, my mom had TNBC, my maternal grandmother had breast cancer (not sure what kind, but it was caught early, and she lived on to be 101, which was 20 years after her diagnosis), and my maternal great grandmother died of ovarian cancer at a very young age. There has got to be something genetic going on, but we just don't know what yet.
Oh, and HA to Kramer. My hair is coming in completely grey, and I'm only 41. I have no idea how much grey I had prior to chemo since I've been dying it for so long. I was not expecting this though! Hopefully it will darken up some. If not, I will definitely be going to the salon as soon as I can for some color. It's just adding insult to injury.
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Kellychannel and Tulips all of what you guys have said, goes with what MD Anderson told me at my 2nd opinion in January. Due to no genetic mutations at all, even if I did not have a complete PCR but had some response, they did not recommend additional chemo after surgery but radiation to not only the breast but the chest lymph nodes and higher neck lymph nodes.
They feel though they may show clear, they can serve as a holding place for microscopic cells. I have clear margins after surgery and my MO said no more chemo, but I probably would have opted out additional chemo personally. I feel if 5 months did not get it, then another month or two won't. Just me though. But who can say if faced with it what we will do.
. I'm on to rads. It's good we now have more options for the first line of treatment. And just saying for my daughters since I have now had breast cancer twice (other breast 24 years ago), I consider them to have a genetic risk, no matter what any test might say.
I have 3 personal friends that are TN, 2 were stage 2 and 1 was a 3. All had node involvement. 8 years ago for them there was not a set protocol for them to have additional chemo after surgery. 2 did not have PCR, one did. All are alive and well. 6-8 years out. But they all did the AC/T combo, surgery (mastectomy) and 33 rads.
They were a great source of encouragement to me, they all said they were told the purpose of chemo was to shrink the tumor and that total disappearance was a bonus. Now we hear a lot about PCR due to studies etc. . But who knows how our bodies will react and fight.
Having IBC I was and am scared to death of recurrence, metastasis and all the rest. But then so are we all. Thats why we have to choose our tx and have confidence in our recovery.
sorry for the mini rant.
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kellychameleon - Just wanted to hop on and tell you that the all grey hair at the beginning is pretty normal. I was only 44 when diagnosed and didn't like that part either. As soon as it was long enough, I began coloring it. For most, including me, it typically returns to your previous color eventually. I can't remember exactly how long it took, but it was good to get back to "normal". My long hair still has more curl then it did pre-chemo, but that's fine.
Wishing all of you ladies currently in treatment better days ahead. Life does get better!
Hugs,
Kathy
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Valstim52: its good you are doing rads. You can beat this. Your are strong and brave! The reoccurance for TNBC goes way down after 8 years, was your previous BC triple negative too? The clear margins are awesome, HUZZAH! Congratulations on being done with chemo too and moving on to radiation! that seems like extra after your BMX but its good to be sure and kill every last cancer cell.
Hopefully rads will be a piece of cake after chemo. Praying for you. Here's a picture of the card that came today from Good Wishes non-profit, I think one of my friends put in for me. I think you need the encouragement as much as me!
Blessings, A
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labscientistmom, my other cancer was triple positive. Did lumpectomy, rads and tamoxifen which was considered experimental at the time. Not much emphasis was put on the hormone receptors or chemo during that time. Not a lot said about recurrence either. I was a a large cancer center too. With a team approach to my dx.
Sometimes I think all the advances though they certainly help, don't help our piece of mind. Always something to fear. This one is better than that one etc, they are all CANCER. Plus I have to view it that way being TN and IBC. Sheesh.
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