Calling all TNs

4everStrong

congrats val!!! good news.. wishing all the best for all of us.

MoreShoes

Valstim, that's exactly what I've been telling everyone. They were happy with the CT scan results (the chemo worked and the tumor disappeared) but I knew that I still had to do a BMX and rads so it was bittersweet for me (TN IBC)

HausFrauMi

Hi ladies! Nothing major going on just not feeling too excited about anything! I have 5 more Taxols left. The neuropathy this weekend has been significantly increased compared to previous weeks where I had a smidge or none at all. I stopped in to my Onc/chemo doc this morning when I had my son's Sleep Dr appt across the hall--conveniently. The PA wrote me a script for neurontin? But I asked if I could try glutamine and see if it makes a difference. So will start with the supplement (in addition to my B6, B12 and multivit, vit D, allergra, prevacid cocktail.....) YAY IF it gets worse I can always fill the rx

Tomorrow will be a lazy napping day after running a lot of errands today. The holiday weekend messes up with my planning and rest days! Glad we didn't travel.

Val--glad to hear the mx went ok. Best wishes on the recovery. I know someone else just had one too====hope all is well. chemo brain and too many missed posts are affecting my brain.

Ready for kids to get out of school and have some time to relax. They have day camps several weeks spread out over the school break. That will help keep the house somewhat cleaner and I can nap in quiet

ScotBird

Val that is fabulous news, you must be so pleased. I'm so happy for you. Kelly hope the surgery goes well, thinking of you. Marsha I thinking your user name should be Looking forward and looking great, and your positive attitude is absolutely inspirational.

The weather in Scotland is gorgeous and sunny at the moment - mini heat wave here - we had a picnic in the park today, that is almost unknown. It really cheered me up. Love to all. X

Valstim52

Hi Everyone

thanks for the well wishes.You all know we take the good news while and when we can, and rejoice with others, cry with others. I love these boards

Kelly in your pocket.

It's getting hot here already, almost 90.

BanR

Ag... I meet a lady in 2013 here in this thread...I posted the same query " what if tumor is chemo resistant, since 7 percent tnbc tumors are, is what i read". She replied back that hers was a chemo resistant one and she had to stop chemo and that was some 3 years ago. I will try to recollect her name and try get you connected with her.

anotherNYCGirl

ks, - i am so sorry that you are dealing with more issues now. The oncs have new and better meds all the time. Tell them you want their BEST stuff!!

kelly.- i hope that your surgery goes smoothly and that you have a quick and easy recovery!!

Val, - happy to read your update!!

avmom, - we all hated those drains, - hang in there, - they'll be out soon!

Hope all here have a good start to June and feel better and better as the month goes along!

Hugs from NYC

Triplegirl

I am sooooo impressed.  Looking good!

Triplegirl

I'm almost identical and have the same question.  Can you gals who didn't have a complete PCR, say what the amount was from original size to the amount they removed at surgery?  I have heard that the residual needs to be quite small.  I guess this is for ladies that had neoadjunct.  Also has anyone had part of their chest wall removed during surgery?  My surgery is scheduled for July 11th and my surgeon is looking to do this as my tumor which is barely shrinking is sitting on my chest wall.

Thanks everyone,  I do read when I can and so appreciate all of you TNBC gals. 

Much love to all and many hugs, Janice

Meadow

Hugs to kelly, hoping surgery was smooth, recovery the same.

simplelife4real

Triplegirl, I did not have a pCR. At surgery, there was no cancer in the breast (originally 2cm), but there was residual cancer in two lymph nodes. The largest cancer was 2.5mm and the other was a "micromet". In 60 days, I will be three years out. My "residual cancer burden" is considered to be very small, but it would have been better for it to be in the breast rather than the lymph nodes. Dr. Mayer at Vanderbilt told me my chance of a local recurrence was 5% and a distal recurrence was 15% with that amount of residual cancer. So far, everything has been good. I've needed two biopsies on two different lumps in my breasts, but both were deeemed to be fat necrosis. Hope that helps some.

Triplegirl

Thanks Simplelife!

It is encouraging to hear positive stories for sure.  I really appreciate all of the information that everyone posts as it helps to not feel alone with the TNBC diagnosis.  I have 2 sisters that had breast cancer and one is still alive but was estrogen positive.  My other sister passed from breast cancer.

The hospital called yesterday to schedule me for another ultrasound on Monday. My oncology surgeon requested it although originally they were going to wait until the 14th.  I still have 4 more Taxol treatments left out of my 12 weekly.  I am a bit nervous as the last ultrasound after A/C hadn't shrunk that much 3cm down to 2.2cm.  The tumor also sits on my chest wall and barely moved away in the last ultrasound.  Surgery is still scheduled for July 11th for a double mastectomy unless something makes them change things. 

I of course am hoping this ultrasound shows shrinkage in a big way and especially away from my chest.  My surgeon was thinking she may have to cut out part of my chest wall and I haven't seen anyone post about having that done.  I know it's not common so again hoping that can be avoided.

Thanks again to all of my TNBC sisters:) 

Keeping my fingers crossed,  Janice

Luvmydobies

I'm praying for you Janice! Hang in there and please update us after you hear the results of the ultrasound. (((((HUGS))))

LoveMyVizsla

A question came up on another thread about post treatment scans. What is the standard for TN? I know my MO says I will have a mammo every 6 months for 3 years, but since my lumps weren't detected by mammo, I will have a yearly MRI too. Is it protocol to get pet scans too

greenae

hi!

My NYU protocol is a mammo and US every year. No scans unless I have a complaint of 2 weeks. 1.5 years out, so far , so good. Feel fine, and trying to Live Everyday! Hugs to All!

Arlene

greenae

It seems, with TN, that if you luck out, and it never returns...you are good to go! If it shows up elsewhere (mets), there is not much that can Give you more than a year, or two. That is the big Sucky part of being TN. I know there is major reasearch going on. I hope and pray the big guns will figure it out. Until then, we have no choice but to live and love everyday. I hope and pray we will all beat this beast!

Triplegirl

Thanks Luvmydobies:)  I will post after I know the results.  I hope sooo much that it's shrinking.....

Janice

Cathytoo

greenae...I'm confused. You wrote that with TN and mets they can only give you one to two years. But, I read about women living many years with mets. What makes the difference

greenae

hi cathy

Upon my dx of TN I started to read and read and read, too much. I try really hard to not read, now. If you are reading of women survivng many years with TN mets, then I am very happy to hear that, and hope progress is being made. I didn't mean to sound like a "downer." My docs check me every 3 to 6 months, and I pray every day to not have new symptoms, and try hard to "live in the moment." My docs do not do scans unless I have symptoms for at least 2 weeks, and that's fine with me. I struggle with anxiety, and false positives would send me to Crazy Town. I wish we could all feel and be Healthy from here on!

Hugs

Arlene

Milwmama

Arlene, I spoke this weekend with a TN survivor participating in the Avon Walk. 6 year survivor, TN and I've read of many more with mets. Keep your chin up and stop reading those negative articles. If that's what you read, that's what you will think. So much good, positive research to read about, or better yet don't. Go garden its amazingly therapeutic. I hope you all have a fantastic week ahead. 😁

Valstim52

I personally know many (more than 15) TN's that are 3 to 15 yeas from dx with mets. I'm a 24 year survivor of another breast cancer, and the statistics were terrible. Yet here I and so many from my support group, some who later progressed to mets are still here.

The internet and research? For me, lots of it is old and who are their base studies? IF you look hard enough you will find things to scare you to death. Plus here on BCO if you go to the TN stage IV forum so many are years out with mets.

. I go to a NCI cancer institute and even they say 5 years is now becoming the norm for those with TN and mets.

Milwmama

And those statistics are based on worldwide where there are many that don't have the best care available, are already sickly when treated, much, much older, etc etc etc. For every percentage one way there is an opposite. I'm taking the surviving percentage. 👍👍

So my funny for today, I'm looking through an Avon catalog and stop at haircare deals, then whoops remember, Ummmm no hair. I'm cured if I can forget I don't have hair right? 😂

Milwmama

http://scienmag.com/asco-finally-targeted-therapie...

Just saw this on FB. Don't know of its been posted here.

Triplegirl

Just an update:)  I had an ultrasound today and the tumor has moved enough away from my chest wall that the Radiologist said my surgeon can get clear margins with surgery.  Yippeee!!!  Made my day.  The tumor has shrunk to about 1.5 cm from original 3.2.  I have 4 more Taxol chemos before surgery so I really hope it shrinks way down to the mm arena and a possible 1 status.  I won't know now until surgery July 11th and the path report after.  Keeping my fingers crossed.  I think it will be close.

Thanks for all of your support.  

Janice

ALHusband

Milwmama thank you for that link! Very encouraging! Triplegirl...GREAT NEWS!!!

Valstim52

Triplegirl, great news. Keep us posted

Milwmama thanks for the link.

yodez75

Hi everyone. Im newly diagnosed IDC triple negative from my core biopsy. Just found out yesterday. I see oncology tomorrow and surgeon on Thursday and radiation oncology next week. I'm doing pretty good...though getting nervous about chemo and everything that is going to be happening to my body. Any words of wisdom yall can share would be greatly appreciated!

Luvmydobies

Janice, I'm so happy to hear your good update!!

Yodez, I'm sorry you have to be here but this is a great place with so many caring women and a couple of great men too! Just take one thing and one day at a time. You have a lot to process right now but thing's will settle down once you get your treatment plan. Make a list of questions for your appointments and write things down as they tell you as well. Chemo isn't fun but it's very doable for most folks. Chin up! We are here for you and will do what we can to help you through this. Hang in there! (((((HUGS))))

Meadow

Ditto what Luvie said!

labscientistmom

Yodez, beware reading about triple negative, lots of depressing and scary stuff. Its a malicious evil parasitic thing from the pit of hell itself, but We CAN FIGHT IT. my oncologist says its very sensative to taxol. ask lots of questions and focus on the good fight. Trust in Jesus, call in your friends and family for support, and if you don;t personally know anyone who's survivor with same diagnosis, get hooked up either here or through your local American Caner society chapter. I have church friend who's triple negative and 15 years out from her chemo & surgery & rads finished. She's doing great! The encouragement from her fills a niche, and lots of others can cover other needs and bless you! I agree, be good to yourself. I am sorry you are here too, but we are all rooting for you and I am praying for all of us.!