Calling all TNs

Danni1

Hi All,

I just found this thread and wanted to let you know the latest on the Iniparib or Parp Inhibitor trial.  I am part of the expanded access group and started taking gemacitibine, carboplatin and Iniparib two weeks ago.  I have been told that the parp inhibitors were not very effective for line one people (those that have not had chemo before).  It is still reported to be effective for some line two and three people and they are still allowed to have it as long as their oncologist approves it. My doctor approved it so I'll be starting my second treatment next week.  Please let me know if anyone else is continuing.  Positive thoughts go out to you all. 

curecx2011

Jen- sorry to hear this...treatment has come far, and you just need to keep your head high- it will all work out this is a UGLY diease. But new things come out all the time. We all have t ramin HOPEFUL there WILL be a CURE for this ugly disease SOON...God Bless.

Lovelyface

Does anyone know the answer to this, please?  Does one have to be 100% negative for all 3, ER, PR, HER2 in order to be TN.  If you are 5% positive for a hormone, would you then be regarded as a TN or not?  My onc. just doesn't answer this question well enough for me to understand.  I am 5% positive for PR, so am I a TN or not?  I really would like to know.

jlynnbain1031

hi everyone. i finished up chemo 7 weeks today. i am debating on rads or double mastectomy. my surgery is set for march 8th for the double mast. and immediate reconstruction with tissue expanders. i am having the gene test done this tuesday and a week later should have results. not sure what to do. do i just do radiation or go on with the the surgery ? who knows, i may need rads after surgery and i may need mastectomy after rads. i am triple negative. i had 2 of 4 nodes positive. i did 4 rounds of cytoxin/aramyicyn then 10 of 12 taxol. i did really well during all of it but couldn't finish the last two taxol cause of the neoropathy setting in. it is about gone in the fingers but the feet are still pretty bad. not horrible but as soon as i get up to walk, it takes a few minutes to get use to it. so what i really want to know is anyone did the surgery without the gene test and what is it like to have the double mast. and immediate reconstruction with te. i am scared and can't make up my mind. i have talked to my doctor and she is great. she says wait for the gene test results and if negative, no need for mast. if positive then definetley. i l love my doctor to death, but what if i get it back in the scar after the mast.? i just don't know what to do. i have been on here for about 7 months. you can find me under "just diagnosed with IDC and scared "! i have been following and posting for a while. can someone please tell me about laurajane ? is she ok. haven't heard or seen from her. i followed her until december and then nothing. praying for all of you and any input would be great as to what i should do. scared to make the wrong decision. thanks all !!

Titan

Jody...Laura is partying in NYC right now!    She seems to be doing pretty well..

mitymuffin

Jlynnbain1031, is a lumpectomy plus radiation not an option for you?

Babs37

Jenn- So so sorry to here the bad news. My thoughts are with you. (((hugs)))

So, came back yesterday from my surgery. Slept all day tuesday after the surgery but felt pretty good yesterday. It went really well and does not hurt that much. Yesterday, I only took Tylenol. I have 2 drains and will have them for the next 2 weeks. Overall it's less painful then I expected so very happy about that! I don't know yet how many nodes they took out. I should know in 2 weeks when I go see my doctor. And I should know the results of the biopsies of everything in 4 weeks. Meanwhile, very happy to be back home and reconnecting with you guys.....................

Hugs to everyone. XX

jlynnbain1031

so glad to hear laura is doing ok. i had the lumpectomy before chemo. after clear margins, i started chemo then was suppose to start rads after and decided with both my great grandmothers having bc that i just wanted the mastectomy. with the surgery right around the corner, i am started to get a little scared and not sure if i just want to do the rads or surgery. such a hard decision. i have heard that the tissue expanders are really uncomfortable and hurt. decisions decisions ! i talked with the doc and will at least wait until the genetics are back. i have to make the decision soon though. thanks for letting me vent !!

TifJ

Lovelyface- I am 3% ER+ and my onc considers me TN. It was explained to me that anything under 8% in TN. I have also heard 5% and under. So I don't know what to think. I have not been offered any hormonal treatment.

Luah

jlynnbain: How old were your great grandmothers when they were diagnosed? If post-menopausal, it may not signal a genetic link (as BC is "fairly common" in PM women), but I agree with your doc... wait for your test results, then decide. In my experience with this disease (and in life, lol), any time I've been stuck on a decision, it's because I was lacking a key piece of information - so all may become clearer to you soon.   

cc4npg

Jody:  Decision, decisions... questions and uncertainty.  That about sums up the feelings while you're waiting for surgery and wondering what is the "right" thing to do.  Originally, when I was dx, I was going to have a unilateral mx and that was mainly because I was so tiny that a lumpectomy wouldn't have a good cosmetic look.  However, like you, I was waiting for BRCA results (being dx at 43).  I thought I would be negative, since there was no family hx, but ended up positive... which changed everything.  I had decided to do bilateral mx if positive and glad I did.. I have no regrets there.  Before going any further though, let me point out that between lumpectomy and mx, there is no difference as far as survival.  IF you are BRCA+, then that is what increases your risk for contralateral BC and OV CA.

There are pros and cons to each procedure (lump vs mx).  Neither one totally wipes out the chance for recurrence because as you pointed out, you can have a recurrence along the scar or with any tissue that was missed during mx.  So really it's a very personal decision with the only thing tipping the balance between the two being your BRCA status.  Lumpectomy has shorter recovery time, you get to keep your natural breasts/nipples, cosmetically looks better because no large scars and natural tissue still, and the only numbness you'll have will probably be where the small scar is.  However, with lump, if clear margins are not obtained during the first procedure, you may have to have additional surgery.  You will also need rads if you have positive nodes.  Your skin does suffer from rads... it changes it.  People with rads have less options with immediate reconstruction, since the skin has changed, and that really affected my personal decision as well as being BRCA+.  You get a better overall result when you choose mx w/immed recon.

With mastectomy... it's a whole different ballgame.  It's a bigger surgery and as with any surgery, you have to watch for signs of infection as well as longer healing time.  You lose all the tissue the surgeon can find.  The incision is much larger.  Sometimes the nipple can be spared, sometimes not.  (I had nipple sparing)  You lose sensation to the majority of your chest after surgery, at least for a while, and some of the numbness lasts forever.  I was fortunate and have a good amount of sensation in my non-cancer side nipple, while my cancer side is completely numb, but many women lose all sensation.  Don't let that really scare you, because now after 4 months I can say I've either gotten used to the numbness or some of the feeling around the breast has come back partially.  Nerves grow VERY slowly when coming back and it can take months or even a year to get back whatever sensation you'll have.  If you have bilateral mx, with immed recon, then both breasts will match or have a much better chance of matching.. whereas unilateral is a bit more tricky to match up, and can be very difficult to achieve the look you want.  Mx is a more painful procedure to begin with... more healing time.  Everyone heals differently and everyone reacts to pain differently.  You'll have drain tubes with mx, which is probably the worst of the whole ordeal in the beginning and feels so much better once out!  TE's aren't comfortable either... they make your chest feel very tight, like you have a steel bra on.  Some people refer to them as hub caps!  They do not give!  They are not natural looking (at least on most of us) and you have to remember they are only expanding your skin for the end result of implants.  The end result WILL look more natural.  (If you haven't already done so, go to the picture forum that some of the women here help with and see before/during/after pics)   Your skin after mx will be thinner.  I'm thin anyway and mine is pretty thin... my exchange is Monday and my PS has told me that I am at risk for some ripples or divots just because of my skin being thin, BUT they can do fat grafting if it's a problem once things settle.  If you choose mx, you will also need to do gentle exercises after surgery to get all range of motion back which does hurt some to begin with but most surgeries require gentle stretching to get back range of motion.  And you don't do the stretching right after the surgery either.. you have to wait for them to tell you it's ok.. usually after the drain tubes are out.  Sleeping is uncomfortable for a while (get a recliner and pillows).  Driving takes a little while before you can do it, again because of range of motion.  

Again, I was BRCA2+ and I do not regret the bilateral mx at all.  I also suggest getting on some of the mx threads here and reading up.  I started one in October last year for those having mx's that month and I bet there are others since that time.  Best of luck in your decisions... and just know that the worrying before the actual surgery is WAY worse than the event itself!

laurajane

Well I have been having these dreams that my petscan is clear but the last two nights I've had this dream that my onc is explaining to me that I have mets and that I am not dreaming and the dreams that I was clear were just dreams. I've woken up drenched in sweat. When I got up this morning I could hardly breathe. Thank goodness for Xanax. I don't get the results until next Tuesday. I just have to be all right. My son lost his dad about nine years ago and he was crying so hard last night because he is so scared he will loose me too. Man, I've got to get a grip. I don't mean to be so selfish and I've got to catch up on the posts but I just felt if I don't share my fear with someone I am going to go even crazier than I alreay am. I know I am trying to stay positive and please don't anyone else say that to me today. When I try and express my fears all I hear is "Think Positive" as hard as I am trying to I am still bloody scared.

tnbcRuth

Angelisa-that was a great synopsis of what to expect on both sides of the fence.  Be sure to copy and save somewhere.  I was thinking about responding, but just can't pull even a paragraph together yet.  Better yet-start a new thread for LvsM, and that can be the permanent opener...

Laurajane-we are here for you.  ((((Laurajane))))

lrr4993

laurajane -

You are not being at all selfish. That is what we are here for - express your fears, vent frustrations, whatever!  You can't be positive all the time, even under the best of circumstances.  I too had a dream last night about being told I had mets.  I am not waiting on scan results, but have my first follow up with my onco next week . . . I guess it is anxiety about that.  I woke up feeling terribly scared and depressed this morning because of it.  I am so tired of thinking about cancer. I too try to tell myself to quit going through the "what ifs" and worrying about horrible things that have not and may not happen.  But, as you said, no matter how much you tell yourself that, it is just scary to deal with this.

I hope your scans turn out clear.  You deserve it and it would do us all some good around here to hear good news!

I also hope your son is okay.  What a scary situation for such a young child.  I know this will sound weird, but I am so thankful that I do not have children because it would be heartbreaking to have to put them through all this. 

cc4npg

laurajane:  TNBC is bloody scary and we all have our moments of meltdown where the fear just overwhelms us!  My initial thought is that your subconscious is working overtime on worrying about results, thus giving you the dreams.  Have you ever had dreams that were premonitions?  You're no doubt concerned about results, and BC leaves all of us with a lingering fear of tests, aches and pains.  Waiting on results is extremely hard for us and no one can understand the things that go through our minds except someone who's been through it.  I really believe your mind is just working over time and it's nearly impossible to control your subconscious.  Let us know how it goes Tuesday!  Quite honestly, I would be on pins and needles too even if I put a good, strong appearance on for the rest of the world!

jlynnbain1031

thanks so much for all the information. cc4npg...you could have a phd in breast cancer. lol ! that info helps me alot i am just going to keep going with the flow and try to take one thing at a time. i just feel like i need to get something done like now. i feel like waiting for either rads or mast. is going to make me have a reocurrence quicker. although like we all know, TN usually if it comes back is distant. i have already had the visit with the plastic surgeon and the breast surgeon and another thing that i don't like about having this surgery is the thought of them taking all the lymph nodes and then worrying til pathology comes out, lymphendema, not being able to ever sleep on that arm again. ugh. heck, i thought that was what chemo was suppose to be for. killing anything that may be left after lumpectomy and now you have to worry that it could still be in the lymph nodes. the gene test will be how i decide. luah...my great grandma on my dads side was 53 when she died from bc and my great grandma on my moms side was around 67 years old. i also have great aunts on my dads side with a hystery of bc. off course they were all post menopause. i was diagnosed at 38. my doctor did seem to think mine was not basil. i guess that is a plus, right ? thanks again to all of you for the info. i knew if i came back to these boards, i would feel much better.

laurajane

PET SCAN CLEAN!!!!!!!!!!!!!!!!!!!!!

I called my onc just now and told her I couldn't wait until Tuesday and she said she was happy to share the news that my petscan was clean. Wow!!!!! They finally found a chemo that actually worked on the cancer. Hallelujah! I am so happy to know that I have more than a few months. I can't explain my fear after doing AC and Taxol and both not working to slow this monster down I believe the Carbo/Gemzar has worked. I have been feeling so rough and was afraid it was the cancer and now I know it is SE's from the chemo. I am going to LIVE!!!! I am going to beat this. There is hope! Love you guys, thanks for letting me share.

TifJ

Laurajane- What wonderful news!!!! I am so happy for you!! Sounds like you need to go out and celebrate!!

Tiffany

cc4npg

Great news laurajane!!  SO happy for you!  See, this is what cancer does for us.. it makes us so afraid of everything.  Our minds keep trying to link an ache or a pain to cancer and personally I believe our minds are extremely powerful.  Sometimes we can make ourselves feel sick when nothing is wrong, or at least that's been my personal experience with my family.  And I'll say it again, before our dx we would have never jumped to an ache or pain being cancer related but now we definitely tend to.  Anyway, it's wonderful they found the right combo for you!  There's always hope!

Suze35

Laurajane - I am so happy to hear your news!! It is wonderful!! I can relate to the raw fear in your earlier post. I am there right now.



The headache/pressure in my head has now been here for 7 days. I've tried everything hoping it is sinuses, including a neti pot. My onc is having me get a brain MRI next week. I can't think of anything else it could be, and I am here in NYC doing what I can to forget. I'm sleeping like crap, having horrid dreams, and tear up at everything. Until I get the results, this is how I am. Thinking the worst. I hope in a weeks time I will be able to call this my first scare, and let everyone say "I told you so."



Babs - congrats on getting through your surgery with flying colors! It must be such a relief to know it's out!

Anonymous

Oh LJ- your news made my day and I shed some happy tears! Prior to that post I was going to say that your "dream" sounded more like a nightmare. Now, you can sleep well tonight because you are dancing with NED!

We will have a lot to celebrate in DC during Cherry Blossom if you still are planning to make it!

laurajane

Suze- praying for you big time! Have fun in New York is easy to say but when I was there my fear prevented me from enjoying it to the fullest. I hope you can overcome that and have a blast. I know, easier said than done.

Heidi - you are right, nightmare is more accurate. Yes! Looking forward to celebrating in D.C.

Funny how a few weeks is so much worse than a few months which is so much worse than a year or two. I need to stick to each minute is precious. I have wasted minutes worring and I should be rejoicing to have these minutes. 

cc4npg

Suze35:  What is your BP and pulse like?  You're not diabetic, are you?  So many things can cause headaches.  When is your MRI scheduled?  Yes, we will all be glad to hear everything with you is fine!  I don't think I'm alone in saying that when one of us is having a scare, it affects the rest of us.

lrr4993

Happy tears here too, laurajane.  That is so great!!  I am so relieved and happy for you!  Do something fun for yourself today to celebrate - you have earned it.

SusanHG

Hello I just read about this thread on another thread.  I recently joined this board. I am 42 years old, and  I was diagnosed December 15th with DCIS, then had MRI with a 4 cm. area of enhancement.  Thank goodness I didn't know any better because I just assumed it was from the hematoma from the biopsy.  Well, it wasn't.  From my lumpectomy on January 20th, it was mostly DCIS with a 3 mm TN tumor hidden away in there (they did not see this on mammogram and MRI appeared to be completely ductal)  I am right now in the middle of decision making, getting three opinions on everything because I am getting conflicting info on everything from whather I should get another lumpectomy to get clear margins or just get a mastectomy (I have large breasts and am BRCA negative) to whether or not I should go for chemo, probably TC.  My first onco said chemo.  She then sent me for a second opinion at Roswell Park Cancer Institute and they said no chemo.  I have been having cramping groin pain for months now (since September) and have had every test in the book.  Just recently finished testing with an MRI and boy do they find everything!  I have many ovarian cysts on both ovaries, uterine fibroids, and a divot on my hip joint.  So, now I am freaking out again.  I am really starting to get tired of this rollercoaster ride!  So glad for all these boards.  You guys are keeping me sane!  Also, I had a Mirena IUD inserted in August.  Nothing but problems since! I had it removed as soon as my biopsy came back.

jlynnbain1031

congrats laurajane. i have been following you for awile now and i am just thrilled to hear your news.

TifJ

Did anyone have TC for Tx and develop a dry cough? I got one after tx 2 and still have it 8 weeks PFC. Of course, it makes me nervous and every scenario is running through my mind. Anyone have any thoughts on this? I told my onc about it several times and he didn't seem concerned-wel, I am!!

Babs37

Laurajane- I AM SO HAPPY FOR YOU!!!!

Suze35- My thoughts are with you. Sending you hugs and hoping you can enjoy the rest of your trip. But I understand you are scared. (((hugs)))

mitymuffin

Oh LauraJane!!!! Hallaluah! I'm so happy for you. I'm so very glad.

LRM216

Wonderful news, Laurajane and I am so happy and relieved for you.  Decades and decades of more clean tests!

Linda