Calling all TNs

MBJ

My friend who is Stage IV with Mets to the bones and liver finally got back to me on what chemo finally worked for her (she tried a few).  Abraxane is kicking it's a$%#!  Her cancer markers went from 1300 to 300 over the last month and a half.  I am so happy for her and how well she is doing. Just wanted to share this to give those of you with mets or who are resistant to chemo hope!!!

kittycat

Hi girls! Long time no talk! Just wanted to send warm wishes out to my TN sisters!

Titan

KC!  How are you?   Missed you and glad to hear from you...

Titan

I just got another PM from the SPAMMER...I just told "IT" to f*** off...it was fun!  .."just send $100.00 and blah blah blah".

I don't have a $100.00...and if I did it would go in my gas tank..ha ha.

Fighter..13 weeks hey?  Good stuff...Some of the aches and pains from chemo are receding somewhat right?  Getting hair, eyelashes, eye brows......good for you... it's like coming out of this dark area called chemo to becoming YOU again...I like it...

slcst12

Hi girls!

I've not posted here in a while, but wanted to shout out a HUGE thank you to everyone on this board. When I first got diagnosed, I came here and found you. And though I don't post too often, I have found the advice, and information contained in your posts to be very valuable.

I am officially done with chemo. Today was my last day (I did DD AC and DD Taxol). I know (logically) that my hair won't even think about growing for at least another 2 weeks (since that's how long it took to fall out the first time), but I can honestly say, I'm looking forward to a little "Human Chia Pet" action.
Huge Hugs Ladies!!

ForMyBoys

I've been lurking for a bit, but not posting because I am still not sure of my TN status. Biopsy Path said "weakly positive for PR--needs to be re-tested at excision", so Onco has been saying I will get hormones and he considers me positive. I thought the anti-hormones just worked on the ER, for which I tested neg., and I told him this. He kinda blew me off, but he is a good Onco doc.

I had neo-adjuvant chemo and had a complete response (WOOHOO!!!!), but that also means there was nothing there for them to test for receptor status. So then BS said weak PR was a false positive and no hormones (supposedly discussed it in clinic with Onco).

 Saw Onco yesterday and he talked of starting me on 5 years of anti-hormones. What?!?!?! He said he doesn't recall the conversation with BS. He took another look at my path report from the biopsy and decided to request the biopsy be re-tested.

It is all a bit frustrating. Don't want to take 5  years of needless med if I don't need it. OTOH, if I DO need it, I need to know that.

Can I hang with you guys unless/until I find out I am/am not TN?

I had BMX w/o reconstruction on March 29th and should start rads in 1 to 2 weeks.

Lynn18

ForMyBoys:  Welcome!  Congrats on your complete response, but I see your dilemma:  nothing to re-test.  It's also hard when your BS and onc don't agree on things, mine disagreed a lot.  The fact that you had a complete response makes it more likely you are TN, I would think.  There are others here, I believe, that started out TN but were later classifed as weakly ER or PR+, maybe they can respond to your post.  In the meantime, you are welcome to hang out!

ForMyBoys

Thanks Lynn18!

TifJ

ForMyBoys- I am 3% ER+. I am being treated as TN. No follow up meds for me. I have read that some weakly positive ER or PR are getting meds. I guess it depends on your oncs point of view! My dr. feels Tamoxifen would do me no good. Hope you get an answer soon!

Kymn

good morning ladies, had myy 3rd treatment yesterda, am now down with the FEC part of this yeah no more red devil for me. So far SE are managable Onc added in some other anit nausea meds for me and it seems to be helping yeah last go around i was so sick and a just pathetic lying in bed crying I hate being that girl, this time just the normal tired no motivation to do much but thats ok, better than dry heaving and crying all day long. Next three will be doxotaxol, supposed to be easier according to most woman but some do find it harder with fatigue and bone pain, hope i am in the first catagory.My parents are down for thsi round, first time i have seen them since being diagnosed, i think it was a bit of a shocker to really see what it is their daughter has been going through. They were traveling in arizona when i was diagnosed and I just told them to finish their trip as i didnt know what they could do for me at that point I still hadnt done surgery at the point and was clueless on this process. In hindsite i would have like them here and was secretly hoping they would have just come but I have learned through this that I have to ask for what I need and not assume people should just be able to figure it out. Had so many friends just dissapear during this,it hurt, but the ones that did step forward with their love and conern have really touched my heart.randon acts of kindess have taken on a whole new meaning to me.I had to PVR the royal wedding for my parents lol, so guess i will be watching that today might have to pop and extra sleeping pill this afternoon and have a nice long nap lol.

Hugs to all that were in the chair with me this week, hope you SE are minimal

Kymn

MBJ

slcst12:  Congratulations on being done!  Come on over to the Hair, Hair, Hair thread to encourage the chia pet hair!!!  Big hugs!!!

formyboys:  Welcome to the thread and from what others have posted here, if you are just slightly positive their doesn't seem to be a huge benefit.  What you could ask your onc to do is test you to see if you would respond.  Why go through all of the side effects if there is a possibility that there won't be any benefits?    I forget what the test is called, as I didn't require it, but maybe someone else can chime in.

Kittycat:  How are you doing?  Good to see you here and hope all is going well.  Are you all done with radiation and has your skin responded well to your treatments?   

Towny

Dear everyone thanks for your support. I am doing well. I am tired from rads and I really have not felt anything from the xeloda. I hope it is all working. My blood is good. Will see doc again.. See one every week a rad onc or just the onc.  So I feel like I am in good hands.  I will be getting on a PARP trial for TNB if this does not work!! Make sure you TN check this out and talk to your onc about PARP inihibitors... there are trials in the phase III stage.. That means FDA is next if all goes well. I use to have alot of joint pain!!! Started taking Tumeric every day a couple of times a day and now no problems.. I do squats and walk a lot!!! I was so happy when that went away!! So give it a try. You can buy it at Walmart or Target in the supplement section. It is a spice so it does not hurt you!!! My onc knows I take it... All you ladies need to ask about your breast if you still have them. Are they dense... this is the reason so many of us have been dx with late stage cancers is because the mammograms could not see through dense breasts!!! Please check out DENSE NY or areyoudense.inc on facebook... write your politicians ask your docs!! This has to change.. To live through this nightmare we all must change this world somehow. Dense breast bills are being passed  through out the country!!! This is important. Look it up.

One more week of rads. and we will see how it is all going. I am praying for the bad juju to go far away.

MBJ

Towny:  I hope that everything you are doing continues to work for you and thank you for the link. 

FloreneB

I'm new to this journey - just had first chemo 04/27/11.  I want to learn all I can about the beast called "triple negative" breast cancer because I want to kick it's butt!  I'm so sorry to hear that there so many of us in this battle, but maybe we can all draw strength from each other.

timekpr

Seems like there are a few of us on this thread who are "weak positives" - in my case its the less than 25% PR+

 I'm more than a month post MX and my Onco (who is wonderful, BTW) still isn't sure what to recommend. He's not advising any hormonal therapy with now 4 tests at 3 labs all agree that I am ER neg. 

I was stage 1, sentinel nodes clear.  At this point I'm not doing any chemo even unless he can come up with something that has a documened statistical chance of extending my life, which I think is reasonable. (I'm just not willing to take poison with out proof it might help.)

Any Stage 1 triple neg decide to skip chemo? 

Anonymous

timekpr- no chemo AND no rads? Please excuse my frankness, but IMO you are playing with fire.

Suze35

Welcome all newcomers, and I'm sorry you have to be here.



timekpr - have you had an oncotype done? I know they typically don't do it for TN, but with a weak PR, maybe your MO will get one. Even though I had plenty of nodes, my MO is having one done for me because my ER was 3% and she wants to see Tamoxifen will be of help. Not sure exactly how she gets that from the oncotype, but that's what she said. I respectfully agree with Heidi. For TN, chemo is the standard of care for tumors over 5mm (0.5 cm). The nasty thing with TN is that it doesn't seem to care if you are node negative - I read an interesting study that suggested TN through Stage IIIa had similar recurrence rates, irregardless of nodes. Chemo is the best option, and TN typically responds well. We (usually) only get one shot at this, if it comes back, it is chemo for life. However, this is a very personal decision that only you can make, just please be sure to read and be as informed as possible.





Day 3 of rads for me. My RO kindly ordered a cervical MRI for me (MO is out of the country until Thursday). I've had a stiff neck with pain for a week now, and he said while he really didn't think it was cancer (clear PET 3.5 weeks ago), there was no reason for me to worry and it was justified. I really like my RO, very understanding. So that will be Wednesday...fingers crossed that I remain the queen of false alarms!

So has anyone else had an oncotype done? As I said to timekpr, my MO ordered one (and insurance agreed!). I'm interested in what it will show...

Lynn18

Welcome, FloreneB and timekpr

Suze35:  That study sounds interesting.  I have seen TNs progress even though they had negative nodes . . . I am glad you like your RO, I really like mine.

I have never had that oncotype test but I will ask my onc about it . . .timekpr, I have not seen many TN's skip chemo.  There are two that I can think of and each of them had it came back very quickly, even though they were early stage and no nodes.   

Anonymous

Yep... it's the nodes "discrepancy" that really scares me. You'd think, being node negative, that you could breath a little easier. But TNBC doesn't seem to care if you have negative nodes.

When I first realized that recurrence occurred regardless of nodal status I was really freaked. My husband said something that really put it into perspective for me (and some of you in here have heard me say this before--- despite the fact that I am no longer as vocal as when I was first diagnosed on most topics--- because I try not to rehash stuff over and over).

Anyway, he said " think of nodes wrt a car wreck. If you got in an accident, wouldn't you rather have been wearing your seat-belt? You're still in a wreck, but your luck is better if you were wearing your seat-belt". I really liked that analogy and, more importantly, it helped to allay my fear(s).

Edited to add: yes, LVI is also a big factor to consider.

Lynn18

I wonder if the people  who have progression after clear nodes had LVI?  Is that part of the equation? 

I feel like I need to add some good news--according the the Triple Negative Breast Foundation, most TN patients do not recur.   For our friends who do have recurrence, I am hoping for some targeted treatment, like Parp, very soon.

Luah

My onc said LVI typically goes hand in hand with nodes. I had both, so I'm willing to hope it's all a crap-shoot anyway. But you're right Lynn, most TNs do not recur. Sadly, we come across them here, of course; the others have moved on and don't visit much, if at all (though some of us hang around as exceptions).

Lynn18

Luah:  I had both also.  I guess many people do move on, I love hearing from people who are a few years out from diagnoses, though.

Suze35

Luah - I made a promise to myself that every year I go cancer-free, I will post to give hope to others in my situation. I hope I am able to do that.

Lynn - my MO said the same as Luah's - LVI goes hand in hand with nodes. I had both, obviously. But you can have LVI with no nodes, so I do think that is part of the equation. All of my doctors are pretty much amazed I'm still Stage III. I've had this very aggressive cancer (even by TN standards!) in my body for 8+ months, and it is still localized. Is it because the initial round of chemo did have a response until the end, or as my RO says, does it just like where it is? I am obviously still very high risk, and am under no illusions, but there is so much we just don't know about the impact of biology, diet, exercise, immune system response, etc... Which sucks, ugh.

BarbaraJo50

timekpr,

I always thought I would never do chemo. I wasn't going to put that poison in my system. If I had cancer I would just let it take its course. Boy was I wrong. I love my oncologist and I think she is brilliant. I swear her knowlege saved my life. I had surgery after chemo and was declared no evidence of disease on 10-21-09. Radiation after. It can be a very hard but I know you will make the right decision for you.

Heidi, first time I heard the seatbelt/car wreck story. Thanks.

Babs37

Because cancer can spread through the blood, even node negatives, TN or not, can turn in a stage IV. I read alot on the other threads and I saw some ER+, PR+, HER+, node negative, start their journey at stage IV. That is why we do chemo, to kill whatever escapes through the blood vessels too.  

dlcw

Can I ask what 'LVI' means?  Is that something you find out from your post-surgery pathology report? or would that have been in the path report from my core-needle biopsy?  Just curious what it means.

dlcw

Titan

timekpr..what was the actual size of your tumor?  I think that chemo is recommended for most tumors over 1 cm...Of the two years I have been on this board I have heard of only one (1)..just one tn not having chemo...her tumor was very very tiny (under 1 cm)..there are  few ladies on here that still had chemo even if their tumors were tiny...this thread is not a chemo vs. not chemo thread..there are enough of those on this board..but I would research very very carefully about your decision to not have chemo.....

Whatever you choose we will be there to support you..just please make a informed decision by talking to your oncs...ok......?

Titan

Oh..and I still haven't got my path report yet. 2 years out..still too chicken...I don't know if I had LVI or not..do I want to know...maybe..maybe not...

 Cancer sucks

Titan

Welcome Florene!...You can learn alot here!  If you don't know how to swear we will teach you..(right Heidi..) ha ha

Good for you sclst12!  Let's us know about that hair..do you have some?  Put that aloe on your head and massage it...and you can probably start taking Biotin now also...if your onc says its ok...don't be surprised though if you have hair showing up in some weird places that it wasn't b-4..very weird

I also lost my eyelashes and brows AFTER chemo...but they came back quickly

BernieEllen

morning all, don't know if this will help but nine years ago i would not touch any drug.  Then i had a major breakdown - Bipolar - now take daily meds to keep my head together.  Had first A/C ten days ago.  My point is you cannot see my bipolar but the decision to take the drugs far outweighed the alternatives.  Now using the same approch to the chemo.