Calling all TNs

Meadow and others hitting milestones. Thank you for your posts. It is comforting for me to see posts from those diagnosed years ago moving forward.

1. LoveMyVizsla...Good to see you here. You and I are on our way to the three year mark. You were diagnosed 10/5/15.....I was diagnosed 10/13. I hear different opinions about counting forward. But, if we’re counting from diagnosis...we’re only two months away‼️ Holding my breath. (Just realized that I have my Dx date as 11/13 but that was my date of surgery

Hi all, I don't get to post very often but try to read time to time. I just had my check up with my dr. and I swear I leave there so depressed. I think I should change dr.s but will it matter, will it be more of the same because its TN? Do you ladies leave the your dr apt feeling good and positive? He just goes over my labs which is good but says it's not reliable. He asks if I have pain, I say no. I ask if there's any new info for TN he says no but can do a scan for me if I want which Ive never done. Did he offer it becasue theres a need, he said it isnt recommended. But if it TN then does it need to be caught at earliest stage even tho it could turn mets? Should I get a scan? I don't know how to feel but sad. Ive been trying so hard to move on I even went back to school. I don't necessarily need a Peter Pan type either. Any advice thanks!

I also asked about getting on HRT with bio identical he said it really wouldn't benefit but says to talk to OBGYN. I have mixed views from two different drs. One says do them for better quality of life and the other that is Onco Obgyn says not to rock the boat the verdict is still out there. Are any of you ladies use HRT? Since we are TN. I had hysterectomy last year.

VL22, Thank you for your reply, I had tears as I read it. Your right it is peaks and valley's. I know there are a lot of ladies that do go on for many years without re-occurrence, or none at all. my mother is one that did't have one for 29 years and if she had a bilateral mx she may have never had the other breast affected. So I need to change drs one that can make me feel confident. He didn't tell me I could have spread out my treatments when I couldn't get out of bed. He said it months afterward. Thats just wrong. I only stayed because of insurance at the time.

May I ask how many treatments you did since we are close on our stages? I did 4 out of the recommended 4-6 dd.

Meow - I had dd AC 4 times and then Taxol weekly for 12 weeks. 20 weeks total.

There’s another women who is TN ( her screen name will come to me) who had to quit chemo after her first treatment because of her reaction to it and she’s been cancer free for a few years

My MRI and mammogram came back good today. White counts back down, but because the other numbers are normal they aren’t going to do anything.

It's great to see members reporting good news. Meadow what a great attitude and picture! LoveMyVizsla good news is always welcome have your white counts been mostly low since finishing treatment? I'm trying to figure out what my MO is going to watch as meaningful changes. It all seems random to me.

urdrago71,

I think it is almost standard practice now for TN's to get more chemo post tx if the tumor is more than 1 cm. I am doing Xeloda, but I have also heard of people doing an IV chemo. I figure it's worth throwing everything we have at it.

Rebekah

I am currently taking Xeloda. I start my fifth cycle on Friday. The biggest side effects are hand & foot and "loose stools". The symptoms are pretty manageable and your doctor can adjust the dosing and the schedule if the symptoms are too severe. Check out the Xeloda and TNBC page if you haven't already. Lots of handy hints.

My surgeon removed my port when I had my re-excision, about a month post chemo.

My white counts are chronically low, and were pre-cancer, due to my version of lupus.

cccmc2, My understanding is Xeloda is being used if you had chemo first and then surgery and there is residual (live cancer) found at surgery. You can always ask your MO about it since it seems you had surgery first.

I had 7 mm residual and I am on Xeloda. Starting round 6 tomorrow. It made me stage ypT1b.

I am nearing the end of treatment and I too am wondering what's next? I did ask my MO about aspirin or vitamin D. Sounds like aspirin will be recommended. I know there is a clinical trial going on for aspirin for HER- . It's a pretty high dose 325mg, so not a baby aspirin but a regular full strength one.

Val, I take a ativan before going to appts. I hate that I need to but when I didn't I would be sitting in the waiting room with my heart beating out of my chest.

cccmc2 - I'm in the same boat. I had surgery first because both my biopsy and pathology put me as er+. It was weak but it was there - weak staining of about 10% of cells. The Oncotype put me as under their threshold for er+ and then my MO started treating me as tnbc-like.

I had a lumpectomy so I'm having radiation. I understand that they only do rads post mastectomy if there are lymph nodes or margins are super close to chest wall etc.

I don't think Xeloda is even approved for early stage patients in my province so I doubt anyone will be recommending it to me. I will ask my MO about the aspirin. I think that might be worthwhile trying.

I'll be finished rads in a couple weeks & then I guess we just exercise, eat well, monitor ourselves, go for our checkups and otherwise we go on living our lives.

My mood about this vacillates a lot - sometimes I'm stuck in the "gack, what if it comes back? The odds of it coming back are not insignificant...." and other days I'm more "I'll just assume I'm in the cured camp & will live to a ripe old cranky age" Being busy doing other things helps.

And as much as I appreciate this board, I think I will lock myself out for periods of time (I run productivity apps like RescueTime and Cold Turkey on my devices) because I think I need to stop thinking about it, kwim?

cccmc2, I had surgery first too and was Stage IIA. I wanted a lumpectomy, so had rads. If I had a mastectomy, I wouldn’t have needed rads. If my MO mentioned Xeloda I don’t remember. I do remember her bringing up Zometa, but I’m not a candidate because I have good bones.

Since you guys are my people 😁, do any of you have lymphedema in your arm? I have it in my breast so I know what that Is like, but now I’m wondering if it is kicking off in my arm after I had two mammograms in one day last week. I’m wondering what it feels like. I don’t think I have any visible swelling, but I might have my husband measure my arms to ease my mind.

I only had four removed, but this is just par for the course for me. Both arms are about the same size.

I have lymphedema on my side with lymph nodes removed. It spread to my chest area. I have laser therapy twice weekly. I also have the Flexi touch machine that does at home massage to the affected areas. It's made a difference. We did not notice any lymphedema till my 2 year from dx mark. It was exactly a year after rads.

Val