Calling all TNs

lwarstler

Hi everyone...sorry I posted and didn't get back to thank everyone for all their support, all though I did read them briefly, here and there. My SE's were just really bad, so thank you everyone for letting me vent and lending your support. IT was not so much about being HER2+ or - but the idea I was going to not have these awful SE's and then...boom...nevermind...you will. I know many people get DD AC x4 followed by DD t x4. I am doing TAC x6 and if this next round goes as badly might ask my doctor if we can switch. I know my counts might go down without Neulasta, but don't they have other meds they can give to bring them up? Did anyone else not get neulasta after their taxol or adryamiacin? 

Susanella: So sorry you are having to go through this but glad you are here. You are in what was the hardest stage for me...making decisions and developing a plan. It does get better once you have all that in place so just try to hang in there as best as possible. Seems like you are doing a really good job of that. I had the lumpectomy with mine and was at first really nervous because I read about so many that had MX instead. Now that I am in chemo though, I don't regret not doing it. It allowed me to get the cancer out quickly and still start chemo right away. Right now, while going through chemo, I am also glad that I am not struggling with healing from the mx. What I don't know is how I will feel when it is all over. My surgeon suggested that we could still do the mx later instead of just evening out my breasts if I decide I just can't live with them when it is over. For now though, as more reports show there is no greater risk with lumpectomy over mx I am good with it.

mccrimmon324

Lee Ann,

I just finished TAC x 6 in Sept and will be starting Rads next week.  I don't think I would have been able to go thru chemo without the nuelasta shot.  How come you are not getting it?  Is it because of side effects?  I found that my SE's were not as bad as I thought they were going to be on TAC, BUT that just means I really really expected the worse.  I honestly thought I would be sick for the entire time I was going thru chemo.  What were your worse side effects?  Hopefully there are some over the counter remedies that can help you past the worst days.  Good luck with your remaining treatments.  I remember when I first started back in June, everyone said to me "it will be over before you know it" and they were right!!!   

Luah

Kymn: So good to hear from you. Yes, you totally rock that 'do. Stay strong.

Sugar, TifJ: Yes. Moroccan Oil is fab!! I use it all the time on my poker straight, thick, dry hair. 

Heidi:  Once again, thanks for the morning laugh.  

Susanella: Try to take it one step at a time. Get through Friday, get through the final path report, get through your treatment plan... then think about the follow-up.  I'm on an annual schedule for bilat mammos. That meant I had one exactly one-year post Dx, which was only about 4 months post-rads (and a little painful). Because of some findings and to be cautious, they called me back for a 6-month check, which was then all clear. They will watch you closely, I'm sure. 

SlayingTheBeast

Just catching up on everyones posts... Kymn I have never understood how men can leave their wives while they are going through something like this... I watched FIVE on Lifetime and the one story where the husband was leaving his wife while she was getting sick from her chemo bothered me so much. What a dick! Anyway in her story, a little over a year later she was in full remission and he had fallen while hiking and was in a full body cast, so karma is a b*tch and he'll get his eventually. Your hair looks great... am 3.5 months out of treatment and my hair isn't quite as long, and it used to be dark brown and now it's this kind of weird color- Not blonde, but not quite brown. I'm just glad it's growing back, I guess I can dye it if it stays this awful color . And, on a happy note my son turns 1 today!! He is my everything. He has brought me so much joy and purpose. He definitely kept me focused during my treatments. I did get an ultrasound yesterday of the lump under my arm and now they are ordering an MRI because the shape of it has changed- they said the size is the same as my scan in May and the U/S tech said she thought it was scar tissue, but the only way to know for sure is with MRI. SIGH!!! My stomach has been in knots ever since. Hopefully they'll get insurance auth. today and I'll be able to get it done today or tomorrow. I just want to know for sure WTF it is. I have a feeling I'm going to be a nervous wreck every time I get scans and follow up work done. I pray that this is scar tissue and the changes are from radiation or healing or something other than mets!!

michelleo13

Kymn, you look awesome!  Love the hair.

Lee Ann, I had Neulasta with my AC and Taxol treatments.

Another great product for frizzy/curly hair is Curl Keeper. It's manufactured in Canada and doesn't contain any of the nasty cancer-causing ingredients we're all so leery of. You can order online from their website https://www.frizzoff.com/default.aspx. I have naturally curly hair and have used their products for many years.

tisthyme

Hello everyone! I have been reading these posts and am now up to page 120 but thought I should introduce myself.

I am 35 and was dx June 24, 2011, with TN IDC.  I have been through 12 weekly (neoadjuvant) taxol and just had my 1st AC yesterday.  I go in today for my shot. My  current concern is this:  Most of you who recieved AC did so on a DD schedule.  I am scheduled to have them every 3 weeks.  What are the pros and cons?  I see my onc in about a week and would like to mention it to her and perhaps push for a DD schedule instead. Any thoughts??

Although I am not glad to be in this position. I am extremely glad to be in the company of such strong, beautiful and caring women. Thank you!! 

Kymn

good morning ladies, thank you all for you compliments and support. I am making sure I come on and read and keep up with all my girls here, he stole alot from me but no more,You are all so wonderful and I missed you all so much. I am feeling tired today had a really emotional day yesterday am just waiting for my heart to catch up with my head.

Hope you all have a wonderful day

Hugs Kymn

Suze35

Heidi - as always, hah!! 

Kymn - you are a beautiful woman - I would think you CHOSE that hairstyle, it is so flattering on you!!  I can only echo what others have said - your soon-to-be-ex is contemptible.  And down the road, he will have to live with the choices he made, while you get to live happily because of his choices.  I know it is so hard at the moment, and all you need to focus on is getting healthy and coming through this.  The rest will come in time.  Hang in there.

Slaying - I am so sorry you are going through this scare, but thankful your doctors are taking it seriously and setting up an MRI.  We will be here for you regardless of the outcome.  Let us know when you have it scheduled!

tistyme - welcome, although I'm sorry you are here.  Studies have shown that DD every 2 weeks is a bit more effective than every 3 weeks, although I have not seen the actual numbers to tell you how MUCH more effective.  With every 3 week dosing, you would probably not need a Neulasta shot.  However, I would address this with your doctor specifically - ask her why she has chosen this regimen for you.  If you are healthy overall, the DD with Neulasta is the preferred regimen.  Good luck!

My hair - it came back in straight and silver!  I've colored it since, but the new growth is less gray for some reason, and it has a wave to it now.  It is thinning on the Abraxane, but not too much yet.  I've been amazed at how much I enjoy having this cut - when I want longer, I just throw on a wig and have some fun.

minxie

I survived my onc appt today. Felt several panic attacks coming on but I managed to keep them under control. Ugh, I was there for over 2 hours! Anyhow, things look good, he gave me a big hug and congrats since in December it'll be 3 years since diagnosis, which he says is great. Keeping my everything crossed for many more...

I asked about Metformin and he wouldn't prescribe it off label, which is what I figured. He says the main thing is to keep my weight down. I think chemopause has brought me right into middle age with the accompanying middle aged spread. Need to lose 15 lbs

We also talked for a long time about my liver enzymes. They've been tested a few times since BC and they're always a bit high. Thing is, even before BC they were high - after the birth of my first son I had all kinds out whacked out digestive and immune problems. They tested for everything they could find no cause.  Now I'm not sure if every gastric upset I have could mean something in my liver... sigh, always something for me to worry about. I wish I had a better handle on my fears.

I need to try that hair oil! I'm a big frizball these days unless I blow-dry my hair straight.

Lovelyface

Heidi - the Testicle therapy and the funeral procession stories are super hillarious!  Loved them!  Thank you.

Lindsey78

Hi everyone!

My name is Lindsey and my mom was diagnosed with Triple Negative Invasive Ductal Carcinoma at the end of September. She will be 59 in November. Sorry, I will learn all of the abbreviations eventually. : )  She opted for a lumpectomy and the results were node negative. Her tumor was a T-1 and the cancer cells were a grade 3.  She hasn't met with the oncologist yet, but we hope to have an appointment soon. They are recommending 4 rounds of chemo.  It is amazing how quickly we went from knowing little to nothing about 'cancer terminology' to now understanding the meaning of words that were so foreign before. We got our education very quickly.  There are still so many questions. We were counting on having an Oncotype DX test in hopes that it would give some insight to the chance of recurrance, only to find out that is pretty useless with Triple Negative.  Her K1-67 score was 63%.  We found this out today. Which from everything I have read during my hours of 'google' detective work, isn't great. It's actually pretty bad.  

I am trying to stay strong for my mom, and never ever let her see me anything but 200% positive. I refuse to add to her stress or worry by worrying about me. I'm not the priority.. she is.  I hope it is okay that I am posting here. I realize this is for survivors, but didn't know where else to go. Thanks. 

Anonymous

Lindsey- do not worry too much about the Ki-67 score. Mine was 99%! That scared the crap out of me until my Sloan-Kettering surgeon told me that they give very little importance to that number because it is just a measurement of *that particular spot* in the tumor. In other-words, it does not mean the entire tumor was that percentage. I felt so much better about that, as it made sense.

Don't let all the stuff you read scare you. Also, TN are almost always Grade 3. Node negative is always a good thing, as is prompt and efficient treatment. Sounds like your mom is in good hands.

Others will come along soon to offer more reassurance--- I'm typically the jokester in here.

PS- I have an aversion to the term "Survivor"... as do many. Prefer to think of myself as a Veteran... or, just Heidi!

beccad

Tifj, If you have a Sally's Beauty Supply nearby check with them for the morrocan oil products. They carry the One'nOnly brand. I have been using the shampoo, conditioner, and the styling cream, and all 3 are free of any parabens if that concerns you.

Suze35

kathrynn - I will most definitely pass your message along!  I'm going to be at DF Thursday, I have a 3:00 infusion time (so more likely 4:00) if you are around!  I'll have my next month's schedule after this week, I'll PM you and maybe we can get together .

Lindsey - welcome, I am so sorry your mother is going through this.  It sounds like she is in a good position with her Stage, I think you have every reason to be positive.  You are more than welcome here as her daughter! 

OBXK

Heidi - loved the joke

Swanky - great news!

Suzy - so glad you found your chair!



I need a new mattress. I buy them and hate them. Everyone on my house has a bed that was once mine! Hate the Serta pillowtop I bought in Jan. Has divots. Any suggestions?



Saw BS Monday. Taped up. Good knee X-ray at ortho yesterday! Had my eye,that encapsulsted after cataract surgery, treated with the laser today. Fingers crossed. Dentist tomorrow. Oh, how I wish I could go just one freaking week, without visiting a Dr.!!!!



Wishing everyone a great day!!!!

TifJ

Beccad- Yes, I have a Sally's near. I will check it out! Thank you!

Sugar77

Lindsey - welcome to our little group. You are a wonderful, supportive daughter and we're here to help.  

Kymn - thinking of you in this difficult time. You're a beautiful strong woman and he's a jerk.  You deserve so much better.  

TifJ - if you find it at Sally's, please let me know.  I have one near me so I could get a bottle there when mine runs out. 

Hi everyone - hope you're having a good evening. 

Hi everyone 

mags20487

Welcome Lindsey...we are here and welcome those like you who are taking good care of us who are battling this thing!

obkx-- I have a temper pedic that we bought 7 yrs ago and it is still divit free.  No dents where wer lay at all!!  Love it.

Maggie

LRM216

Message to Minxie:

Quite a few gals over on the TNBCfoundation.org site have had elevated liver enzymes and they all lowered their levels with Milk Thistle.  I do not know the dosages used, but all of their onc's allowed them to take it and had no problem with it.  Their liver enzyme levels all dropped to normal.  You may want to look into that - and post on that site to find out how they took it, etc.  Donna, at that site, is a firm believer in it as she recurred and many of her treatments had to be stopped due to the liver enzymes staying at a raised level, until the milk thistle brought it all down and treatments began again (she is done now and thankfully, things are look really good). You may want to post over there using "Need info on Milk Thistle" and I guarantee you they will give you all the info needed.

Wishing you the best,

Linda

Ka-cey

Lindsey,   My dear, you have definitely have found the right place to help untangle all of the information that you will come across when it comes to TNBC.  The ladies here are well informed and will help you and your mom get through this journey. 

Kymn, Your hair is adorable.  I am very sorry that you are dealing with a broken heart.   With all that you have been through, I know that in the future there will be that special someone out there that will be "your soft place to land".  In the meantime remember to breathe.  (Hugs from your fellow Albertan).

Titan & Heidi, You ladies make me laugh.  I love the no BS; just tell it like it is.  You are both my kind ladies.

To all newly diagnosed; I remember in the beginning wanting to know when everything was going to happen and how.  I soon found out that it helped if I just focused on "First things First".  I hope that in some way that helps.

Suze, I'm happy you have found a comfy chair that you can kick back in and work on your cross-stitch.  I currently have 4 projects on the go; my DH says that they will probably go in the spare bedroom with all of the other unfinished projects I've started over the years.  

Tomorrow I have an appt with an ENT.  I have been battling an ear infection since late August and I'm tired of feeling like I'm living under water.

lilredpony

I'm 47, was diagonosed 6/30/11, had 4 rounds of Adriomycin, which did not work, not I'm on Taxol, which seemed to work at first, then stopped, so my dr gave me a higher dose, which seemed to be working again, so now my Dr suggested instead of a higher dose, change the treatment to Taxol and Cartol (sp?) which seems now to send me back to square 1, no go     . I'm Triple Neg stage 1V, scared as anything, but have the heart of a lioness and will fight and ultimately succeed.  God Bless you all here and you are Not alone

jazz3000

Hi lilredpony - You're not alone either. Many warm thoughts and cyber hugs surrounding you from here. Saddened to hear you're going through so much so quickly. You must be so disappointed with the attempts and their failures but take it a day at a time and eventually and hopefully the right therapy will appear.

SlayingTheBeast

Lindsey- I remember when I was first diagnosed, I was so ignorant to the terms, etc. At that time I didn't even know there was more than one type of breast cancer! It's amazing how quickly you can educate yourself when something effects you or your loved ones. The women on this forum seem wonderful and hopefully you will be able to get the answers and support you need. Best of luck to your mom- sending thoughts, prayers and positive vibes her way.

 Suze- Thanks. They've got me scheduled for the MRI this Friday at 2:30pm. Just waiting (sigh!). 

Teka

lilredpony,

Welcome!   Age 45 or 47?

Anonymous

For Kymn:

kathyrnn

Lindsey. There are other members who are her to support family, so know that you R

so you are very welcome here. I remember how overwhelming it was in the beginning. I used the AA approach...."one day at a time", and it really helped.



Lilredpony, sorry you've had to join us, but welcome! Hoping they will find the magic combo for you.



OBXX - I loved your post. I originally injured my back years ago, and I've been on the mattress hunt so long my friends call me the "bed orphan". Anytime a friend buys a new mattress, I go stay at their house so I can try it out. Buying on is a nightmare, because I have to go to store and lay on it for 8 hours reading a book, lol. (not dishing out good money if it's no better than what I have). I had to move to Mom's house to care for her at the same time I was diagnosed, so I definitely wasn't up to mattress shopping. I thought I outsmarted the mattress gods by buying an Aerobed (worked well with a featherbed on top) but the traitorous bastard sprung a leak after 6 weeks. Hence the need to shove a recliner into a Toyota. I'm back to sleeping in a recliner until I have the time and energy to begin the elusive mattress hunt!!!

Anonymous

For all:

Let's all close our eyes and go here!

Luah

minxie: Just want to say congrats on your clean check-up, and your approach on that 3-year TN  milestone. Hope you're breathing a little easier.

tisthyme: Here is a summary of findings on the benefits of dose dense for TNs:  http://jnci.oxfordjournals.org/content/102/24/1845.full  Certainly worth asking your onc about it - though sometimes there are good reasons for going the tri-weekly route.  

Lindsay, welcome. 

And to all the other wonderful ladies on here, hope something nice happens for you today.

SlayingTheBeast

To the newly diagnosed and their family members searching for information I wanted to share this: http://www.sharecancersupport.org/information/about_breast_cancer/triple_negative_breast_cancer/

Anonymous

lilredpony- Do you have horses?