Calling all TNs

HELLO. OUT THERE. It's been so long. I hope everyone is doing well. Nothing new here. On the 27th I get my last Keytruda. I am not doing Xeloda. In Nov I'll have scans and then we will see.

I'm still doing anastrozole for my stage 4 ER+ bc . Fell and twisted knee a month ago so not able to enjoy autumn in the woods this year.

Any other updates?

Hey Ladies, long time, hope everyone is doing ok, I am doing ok, just had my mammogram all good so far, loving this fall weather, scans Nov10th ughhh

I've not been here in so long that my "bio" page and everything disappeared. Just checking in… I'm going on 16 years NED.

DX September, 2010. BRCA2+. Triple Negative. Stage 1

Bilat MX Oct. 2010. 0/3 nodes. No lympho/vascular invasion noted, and the only thing left in the left breast was .9 x .8 cm DCIS.. no residual invasive cancer found.

4 rounds Taxotere/Cytoxin beginning the Monday after Thanksgiving, 2010. I lost all my hair. Immediate reconstruction with tissue expanders. Exchange surgery 2/28/2011. I also had bilat ooph due to increased risks being BRCA2+.

I have the same implants as 2011, so far, so good. No pain or issues so why go back under the knife? My hair did grow back.

I have been battling osteoporosis, haven't elected to start meds. I'm going to be adding Strontium I think, after a great deal of research. I'm considered severe, FRAX 10 yr probability 21.3%… hip 4.1%. I think I'm going to go another year or so before making a decision on major meds.

Either way, just checking in because I haven't in a while and y'all need to hear from survivors!

@cc4npg WOWZER, 16 years is bonkers!

@gailmary, Unbelievable that you had to do chemo and Keytruda for TNBC. Stupid cancer is not wanting to give you a break, but you have proven yourself a fierce warrior.

Lyn

(Stage 2 Grade 3 TNBC - May 2016, AC+T)

@justsnapd8 Osteoporosis runs in my family, and I am like 5‘2“, 103 pounds. My grandmother had it really bad with compression fractures. My mother was on medication‘s prior to being in an accident that took her life. She was 64 years old. She had ovaries. She never had cancer or chemo. Neither did my grandma. So this is genetic, but it was brought on at an earlier age because of having to go through what I did. You kind of need your ovaries to supply hormones as you get older to prevent osteoporosis. With triple negative, we are told we need to get those removed and so we do to stay alive, and there are no hormones they will give us to replace it. And then we deal with the repercussions. We do the best we can at the time! I blame my early onset osteoporosis on ooph. To be fair, my explain this to me before I got it done. They told me there was a possibility of osteoporosis earlier than normal other things that happen with instant menopause. I would do it again because it may have saved my life. I’m going to give myself a couple more years before I make a decision on medication. I’m adding something called strontium citrate to my daily vitamins. There has been a lot of women who have been able to turn their osteoporosis back to osteopenia or even normal readings with this as well as weight-bearing exercise. I need to start that too even though I get exercise… It might not be weight-bearing. For anyone else reading this with osteoporosis, you have to remember DEXA scan may be skewed. Strontium is heavier than calcium so your DEXA scan may look remarkably better due to it. It makes it hard to read a DEXA scan, so you need to make sure your doctors are aware you’re on it. However, there are many women on inspire who have had amazing results. I spoke with a lady who works at health food store who has actually used this and turned hers around so I think that’s good news. Time will tell.

@cc4npg , best of luck with the osteoporosi s. I imagine i have it too and can't take the bisphosphonates. So I wonder if there is new stuff I could use. Never heard of Strontium citrate. I haven't even had a Dexa scan in years. I'll start there and talk to my endocrinologist about it soon. I do try to get my exercise. Or at least I used to till this dx.

I had a hysterectomy at 27 yrs! Some estrogen till 50. At the time surgeon told me to take calcium, vit D and magnesium. Added K cause I don't seem to make D so I need a high dose. Little production of melatonin too. No wonder I got breast cancer.

I've had no progression with my Er+ cancer . So scans were down to 1x a yr. But how often are you scanning for recurrence of TNBC? I guess it's time I go.

@gailmary, you’ve been carrying a lot for a long time. 💛

It makes sense to start with a DEXA and talk things through with your endocrinologist — especially if bisphosphonates aren’t an option for you. There are other approaches, so hopefully you’ll get some clarity and a plan that feels doable. And give yourself credit for the exercise you’ve managed — especially with everything you’ve been through.

I’m also glad to hear there’s been no progression with your ER+ cancer. That’s really good news. As for TNBC follow-up, it’s definitely worth asking your oncologist what their scanning plan is in your specific situation — practices can vary, and you deserve to feel clear about it.

And @justsnapd8 — pneumonitis and hospital-acquired pneumonia? That’s a lot. I’m really glad you’re on the other side of that now.

Thinking of you All. 💕