Calling all TNs
Comments
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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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Valstim52: Sheesh indeed! that sounds like a bum rap to me!! i think you have every right to feel what you do. I have several chronic health issues coming into cancer, so sort of, a little bit understand the feeling of being bombarded. Hopefully with the BMX this time and other supportive /destructive chemo and rads you are beating this! Hope you can not be a slave to fear! This IS super scary, but try not to let it steal your joy.
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huzzah needs to be our groups happy word indeed.
Cathy I had negative nodes and clear margins and did rads. My ro said that it was good to have that added treatment. Other than rads seeming like the movie Groundhog Day it did go by quick despite some nasty skin breakdown the last week due to my larger breast size.
Labscientist i also got one of those cards from good wishes scarves. I really made me feel great.
Congrats to scotbird
kelly hugs to you. As tulips said it may be a good thing to get the extra insurance treatment. It sucks but it sounds like you have a good medical team. Like you my mom had bc and my grandmom, but not tn. Both dx at 69 and I was 44 at dx last year. I also tested brca negative. I wondered for the past year where the heck did my cancer come from. I am trying to take my second chance and do good in my like. I have lost 55 lbs since finishing chemo, am eating clean, working out, and trying to reduce my stress which can be a challenge. What helps a lot post treatment is reading this board and knowing I am not alone. Stay strong ladies. And happy Father's Day to all.
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Cathytoo, I truly feel if I'd not had radiation 24 years ago, with my tiny tumor, clear everything, that I would have advanced to metastasis. Just my feeling, and my MO team at the time words to me. They really helped me to understand, clear nodes do not necessarily mean that there are not microscopic cells waiting to float or grow. And that was 24 years ago before we had all this technology. Radiation is used to mop up or stop the movement from the local area, which includes the chest and neck nodes.
My kids were 3,5,7. They will be 29, 31,33 this year.
This time, due to clear margins, my radiation is added insurance for the what if and just in case that happens in cancer. Additionally since I had IBC and tumors, it's the standard protocol. So many terms they use now, that were not used before, PCR, partial PCR, Then they either got it by surgery or not. Period. chemo was used to shrink, was never expected to get rid of it all. Things have improved, but it's made my personal fear worse.
Just my experience and opinion with radiation. Last time it was a blur, ,my skin got really pink, put cream on, but I had homework to help with a husband that traveled for work, had to be PTA mom etc. A true blur and it was over.
labscientistmom, It's like the big things did not bother me as much, but something chronic and small sends me over the edge. Not fear so much as what else will I have to deal with.
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Regarding radiation: My MO and RO told me I didn't need radiation because I had clear nodes. After reading everything I sure wish I would've gotten it!!!Can't go back now though.
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Valstim52: I do know what you are talking about...sometimes the little things are like Chinese water torture. You feel like you have all the big stuff balanced, but plink, plink, pplliinnkk. If I am not laughing at it, I am crying my eyes out. and so much of the little stuff is just weird....you can't make this stuff up. Blessings, hope you have a nice Father's day Sunday!
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Thank you ladies so much for the very kind comments.
Jen - I'm so happy to hear you're feeling settled and enjoying your new home!
Valstim - I was like you, losing my eyelashes and eyebrows was harder than my hair.
QueenKong - huge congrats on 3 years! Thanks for checking in and providing us with such encouragement.
Adarkadapted - congrats to you on the year milestone!
Hopex - 4 years...congratulations! And how special you were able to meet up with your chemo group in Vegas!! What a wonderful and memorable trip that must have been!
Kelly - my aunt is currently on her last round of Carbo for ovarian cancer. She had one round of Taxol in the beginning, but due to an allergic reaction she's been solely on Carbo since. She has not lost her hair. She said she's noticing a smidge more in her brush, but no hair loss to speak of. This is my aunt's 4th cancer fight, 3 of which have included chemo. She is 74. She said Carbo is a breeze compared to the others. She's a little tired, but that's it. I also did Carbo along with ACT, as I was BRCA+. I believed it helped me achieve a pCR, but I can never say for certain.
NavyMom - so great to hear from you! Glad you're doing so well!
Labscientist - what a nice card!
Thinking of all of you in treatment. Stay strong!
Sending well wishes to all of you celebrating milestones and enjoying life!
xo
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KSteve - Thanks for the encouragement. I've been pretty happy with how quickly my hair's growing back. I'm just starting to get some curliness. I have a feeling it's going to get unruly here pretty soon.
Shop gal - Congrats on the 55 lbs! That's awesome! My MO and my PS want me to lose 20 lbs. I'd personally like to lose more like 30.
Allydp, that's good to hear that your aunt's dealing with the Carbo well. She has been through a lot! I sure wish my doctor had gone ahead and given it to me with the Taxol, but I'm trying not to dwell on that. I was really down in the dumps yesterday. I've made it through all of my treatments/surgery so far with a pretty good attitude and outlook on things, and I feel like I was thrown a curveball that I wasn't expecting on Friday. I'm doing a bit better today. It doesn't help that I'm 2.5 weeks post surgery and still have these stupid drains in. I should be getting them out tomorrow (fingers crossed!), and I think I'll be a much happier person.
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Hang in there Kelly, it's almost done. Those drains are miserable!!!! But they do there job. I have a love/hate relationship with them as I'm sure you do as well. Thank you for being on this thread. I know that you came here for encouragement but I'm believing that your story will also encourage others in their storm. Healing prayers, hugs & love headed your way.
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Thanks so much, SA8PG! That was really sweet. Dumb drains aren't coming out today, unfortunately. I woke up this morning, and they had much more output than the few days prior. My doctor told me to be as sedentary as possible today, and we're going to try again for tomorrow. My kids came back home on Friday (3 and 6 year olds) after 2.5 weeks with grandparents, so I was much more active over the weekend than I have been and probably overdid it. They're in VBS and camp all week, so I'm relaxing and trying to just enjoy peace and quiet. I'm just going to have to keep relying on my husband and family to do the things that I'm used to doing for a little bit longer. It's really hard for me to relinquish those duties! Of course reading your signature, I have it easy compared to you! I can't imagine the level of kid responsibility that you have.
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One year down!! I have no idea where the last year went, but I do have a fine collection of souvenirs/scars.
Thanks to everyone on these forums forthe support, laughs and my sanity. You are the only ones who really know.
Hugs all round!
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Peabrain: thanks for putting in some hope! Huzzah for your first year anniversary with your battle with cancer. Whoot, whoot!
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*HUGE HUGS*Peabrain!!!
Allydp: thank you for the shout-out!
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