TRIPLE POSITIVE GROUP

Haven't had a recurrence myself, but you're doing the right thing by seeing your doctor. It could very well be benign. Furthermore, if it is a recurrence, it's hopefully just a local one. Take care of yourself, and I hope you get B9 results.

Helen keep walking! It does wonders. I walked during the dead of winter, I think it was the only thing that kept me sane. I think I lost my hair around the third week, I don't remember what day, I just remember it coming out in chunks one day. It was much later than I thought it would be.

Serenity I'd be freaking out too, praying it's nothing. Assuming you had Herceptin? It doesn't say in your signature. Keep us posted.

Songbird,

I'm sorry to hear that Herceptin is killing your bones. On Aromasin, I feel a little creaky, but I'm not in that much pain. I don't have any great advice, though I do feel a bit more limber after I've been swimming. Take care, and hang in there!

Songbird-I had trouble during Herceptin and after. During Herceptin I took Curcumin and Magnesium (Calm Down). One was recommended by the Integrative Doc and one by the Oncologist. Since then I have found a chiropractor that changed up my died and added some supplements from Standard Process. In particular the vitamin she prescribed was amazing. That totally took away my joint pain. Hallelujah!

Tresjoli2, I'm sending you good vibes. We're doing additional stuff here, too--my MO is holding my last Herceptin for two weeks, in case that's causing the leukopenia; she's ordered another CBC for a week from now, and she's going to do a manual slide review. Fingers crossed.

As for hair: enough of mine fell out by day 20 that I buzzed the rest.

Speaking of hair!! For my family Super bowl Sunday has always been big unfortunately that is the day mine fell out in clumps. I cried in my bedroom that night and my family watched the super bowl. No one came in the room to even hug me or say it will be ok. Now it is just a bad memory. And no longer can watch the super bowl.

My hair was/is super thick. I finally decided to buzz it on day 26. There were a couple spots that looked too thin to me.

Oh Ang, I'm sorry nobody came to comfort you.

Tresjoli2, I've got my fingers crossed everything will be fine.

Tresjoli, hang in there! Watch and wait SUCKS (at least for me), but it beats more sinister news. Perhaps your surgeon can give you some answers. Sending a virtual hug.

Serenity now - I'm praying for you that it's B9. It must be scary.

Jump ship - what was the vitamin that helped?

Ang - I'm sorry about your hair and how when we need a hug most, sometimes we just don't get it

AllisonJax it's very unusual for HER2+ to be grade 1, and a bit size too. In your case I would definitely want to do chemo 1st to see the response. BTW my tumor was 5.5cm IDC + 1cm DCIS. I didn't have anything in my nodes either. Unusual but lucky for us it happens.

Keep in mind that grade can be subjective in that the tumor is not homogenous - the particular area sampled in the biopsy may have had a lower grade than other areas of the tumor.

lago - I had 6 or 7 cores taken too (1 sent away for Mammaprint) as my tumor was easily reachable, but I have always wondered if they grade each core - average each of the three factors of grade to reach a number, do a couple and use those, the protocol is not clear. Because different lab equipment is used for receptor and Her2 testing - sometimes as send outs if the lab is not equipped, those samples would be diverted for that testing - or at least part of those samples, so potentially they would not be used for grade. I have also wondered what about people with tumors that are hard to access and they can't get as varied locations, or as many cores? For those who are ER+/Her2- and have Oncotype at least they get some confirmation of receptor and Her2 status, and a score that helps determine aggressiveness.

Ok major migraine, check! But I do wanna update everyone, so sorry if you guys are in some of the same threads. It's been awhile, I was mostly doing research and being anxious of WHEN this new doc was going to accept us. And then anxious for the visit. Stress galore!

Appointment with new Onco went well today. She specializes in BC Mets.

Regimen: Navelbine 2 wks on/1 wk off with Herceptin every 3wks, and Xgeva 6wks. That's IT. What say you?? I don't recall who is on Navelbine, I think I just read about it yesterday. I have to reread some threads, but cannot do it today, that's for sure.Was a bit of a anticlimax, about the Treatment. Xeloda maybe some other time, and she has some clinical trials in mind and biologics in the future. What's biologics, could not understand. She's not into Immunotherapy for Dani's case, it's not proven yet.

Well during the physical, ANOTHER node was found under the axila, REALLY??( what the…) so off for a PET/CT she goes again, probably still this week, waiting for approval. And I guess then it will be definitive. Still have to see Rad Onco this Friday. Maybe they will keep Letrozole. Ibrance is a gonner, she does not think it's helping in Dani's case. Liver depends what this PET/CT shows. If it's next to each other, if it already got larger? Ablation, maybe? Z, I have to ask her about the Alpha lipoic Acid. .

She did see in F1 Dani may have the mutation TP53, she wants to do a BT to make sure it's in the tumor and only in the tumor not in the whole body(which she does not think it is, but just to make sure for the sake of the relationship with kids/sibs, to make sure it's not Genetic).Otherwise she does not think there is much to get to TP53.

Off to Geneticist we went, she will do the BT when she comes in for the infusion. Also of course the newer mutations, like PALB2.

Also in one of the threads I remember much convo regarding Luminal, yep, she weighs this. Dani has Luminal B, and that says a lot about the status.

She can't do Tykerk/Xeloda, bcs in that trial if u were on Tykerb already then it's a no no.

Everyone it's been a long day, but I thought of you guys the whole time. I was able to understand a lot due to our conversations here.

Check on you tomorrow! Great night to everyone.

Guys thank you so much for your support.

I don't even know how to address what's going on. Pet/Ct done. Onco EMAILED me late pm (after I emailed her that PET is done, so she should know) so she wrote that it shows higher SUV everywhere. AND progression. She could have called. I don't understand these ppl. What's wrong with them. Yes, it takes time, BUT when after a 4wk period PET/CT shows such ugly differences I THINK they should take 5 mins and call the person.I can't even…. Anyway she told her to come in for in for BT (which she said it could be next wk, and I am like NO, we will be there early tomorrow!) anywayto make sure about the therapy. Off she went on Friday.

Then we had a meet with Rad Onco for the lesion on the skull that has a life of it's own. They really wanna do Rads, but there will definitely be loss of hair and no regrowth. And it's right at the front close to the forehead. So how do you fix this? So major problem. Dani is really not happy about it. Downright angry. Onco ordered an MRI of the Brain for this week, and THEN if it's still going crazy she might not have a choice, if it's not, Rad Onco is willing to give it a chance with systemic, hopefully. (D is already working on a wig with bangs, she sent me a picture, I guess it's her way of saying she knows she might have to go that way)

Liver: innumerable lesions from 2 discrete ones! And physiologic uptake in the spleen, gastro tract, renal and urinary bladder. What does that mean? The monster is in these areas? I did not get detailed explanation. Could someone explain it to me.And all the bones the SUV is higher by almost double. And the mesenteric left quadrant that I keep telling them it gets bigger all the time.

Seriously, should I go bonkers now?? What is she thinking, this so well renowned new Onco, I have to call her tomorrow and she will run the BT results with me and that's it? I really hope when I call like 9AM and tell secr that I wanna come in, that she will welcome me. It's hard to get all that through the phone!!! So now I worry about this stupidity.

They took her off Ibrance already, she is onlyon Letrozole and Herceptin. Soo nervous. I asked again about biopsy, and Onco was not keen about it. She doesn't think it's gonna show something new. Hmm I don't know, that was before when we only knew of 2 lesions in the liver.

I am stunned really, HOW could this be? And D does not know yet, I could not bring myself to tell her b4 the weekend. Docs, Onco and Rad Onco agreed that thereis no need to tell her at this point, about the enormity of the status. She knows it's not good. She did not even ask me if I got the report. We'll make a plan and then if it makes a difference for her we'll tell her, if not then we would try to push it till next scans. She is busy. Today is outing with the kids. There is not time for this nonsense!!!

I am really shaking, and it's been 3 days already. No one would know. I went about my business, doing what I gotta do. Did not tell my other girls, trying to go easy on this.

AND, wait, you know it's always interesting with us. On the way back, after literally a whole day in the city, we had a cab, and someone rear ended his car, twice, I kid you not, we are ok, the guy had to wait for the police, we left and had to take 3 trains home!!! That was actually funny!!

Hi all, I've mostly been a lurker here for a long time, but truly appreciate all the support and information! I'm almost two years out from my triple pos diagnosis, finished with Taxol, Herceptin, surgery and rads. My problem now is deciding about hormonal therapy and I'm hoping you all can help me with that decision. I'm postmenopausal, tried two different AIs (Aromasin and Arimidex) over about a year total and had debilitating depression and joint pain on both. No question in my or my MOs mind that I had to go off AIs. Tamoxifen is the only other option to try and I'm a little scared given the depth of my depression with AIs. The Tamoxifen threads here are full of people with difficult SEs, but I also realize that those with SE are the most likely to post in a Tamoxifen forum. I am fortunate to be Stage 1, so while hormonal therapy is optimal, the absolute change in my recurrence risk is not that large for me, so there is only so much of a hit on quality of life that I am willing to endure.

Is anyone here taking Tamoxifen without any or at least without many SEs? If you had them, but know now what to do to help (supplements, exercises etc.), what worked for you? Anyone else fail AIs and then do well with Tamoxifen? Do badly and give up on hormonal therapy? I would so appreciate your experiences!