TRIPLE POSITIVE GROUP

If HER2 can come back anywhere in our bodies, why do the doctors only check our breasts? If we have to wait for symptoms of distant reocurrence, won't that be too late?

What is the best case scenario we can hope for on triple her2neu 3+++.

I'm new to this group so don't know anything. Everything I read keeps saying how aggressive this diagnosis is. My surgeon last week said my team are looking at this at a curative basis. The trouble is we need to get the big guns out for treatment and it will be nothing but top shelf. So at 52 with 3 kids 19 15 and 11 I guess I know what I need to do. The trouble is I know what kind of top shelf I'd rather be knocking back

Hi everyone! Thank u for ur responses! I am trying to find a compassionate Dr. I do not even have a primary Dr anymore, she pretty much did not want to touch me going thru these treatments. The side effects I have from herceptin are pretty much as I was on chemo, but less severe. The ones I'm having a very hard time with are extreme fatigue, muscle and joint pain, and nausea. This is very hard to go thru alone, being a single parent. I don't have anyone helping me, just myself. It's a complete overload. Trying to find a primary Dr, oncologist, and mental health. I've already switched oncologist once...my entire journey has been horrible...even my plastic surgeon left the state and I had to find another one. I'm just at my lowest low and feel the only way I'm going to get help is from myself. I'm so tired of struggling and being sick. I want my life bk and to feel good.

HelenWNZ

Welcome Helen!

The bad news is that it is an aggressive cancer but the great news is that we've got lots of weapons that work really well in treating it. The standard of care is different in every country but here in the USA they are doing a lot of neoadjuvant ( treatments prior to surgery) treatments. From ElaineThere "The two most common regimens given neoadjuvantly for triple positive are Taxotere, Carboplatin, Herceptin, Perjeta or Adriamycin + Cytoxan and then Taxol+ Herceptin + Perjeta." these are also given adjuvant ly here.

Lots of very smart ladies here to help...ask away....

SusanHG123 I'm still trying to catch up here so this might have already been answered. My MO doesn't do tumor markers for non metastatic. She feels they are unreliable. Think of it this way. We have cancer cells and abnormal cells in our bodies all the time. But our system usually takes care of them and they don't grow up to be dangerous tumors. Tumor markers can't distinguish which of these cells, if any will be come bad boys and set shop up somewhere and become dangerous tumor.

HelenWNZ find out about your treatment options, side effects and of course statistics for you at your age with your diagnosis. August 31st I will be 6 years NED! I did the treatments but they have a few better things now. Stage IIIC you want to fight this hard. Being triple positive you have a lot of guns to fight it too. Lots of reasons to believe you can. My neighbor was diagnosed with triple positive stage IIIB or IIIC just a few months after I was diagnosed. She too is doing well. I do believe she will be on what I call the ESDs (estrogen sucking drugs) for at least 10 years.

Thanks for the welcome everything you have said is exactly the plan that I have been told will be happening to me. I just want to get started now as my nodes were so affected I just know there is plenty of mopping up that needs to be done.

But it is what it is and at 52 with my youngest just turning 11 last week I fully intend to give this my best shot

HelenWNZ you will be surprised on what you can do. I just finished 5 years on the ESD (estrogen sucking drug/hormone therapy)

Babygurlwarren

Let's see if someone from your area pops up. Can't think of anyone offhand.

But... In the meantime you can contact the American Cancer Society and any breast cancer advocacy groups like Komen, Race for the Cure etc. Leaving out all politics an organization like Planned ParentHood that specializes in women's healthcare in under served areas and does lots of breast cancer screening might be able to point you in the right direction.

All the best....

HelenWNZ, welcome to our club! I have a similar diagnosis. 3c and triple positive. The ladies here are teaching me to live with hope. There are many survivors out there. We get everything but the kitchen sink thrown at us. I know the aggressive treatment kills even distant cells. We are survivors! You will meet many women on these boards with more nodes positive than you had who are living large!!!

Hi Helen! Another IIIC triple positive here with many positive nodes (22/25). I'm 46 with 4 kids, the youngest of whom turns 18 in a couple of weeks (i.e., empty nest in the fall!). My 21-year-old daughter spent a semester in New Zealand last year; she was in Palmerston North. You live in a lovely place!

I was diagnosed a year ago as of Saturday. My path was bilateral mastectomy, followed by 4 infusions of Adriamycin & Cytoxan every 2 weeks, followed by 4 infusions of Taxotere & Herceptin & Perjeta every 3 weeks--and Herceptin continuing every 3 weeks until September 2016, followed by 6.5 weeks of daily radiation to my left chest wall and lymph nodes, followed by daily Femara hormonal medication to be taken for 10 years if all goes well.

Note #1: I had daily Neupogen shots for 1 week following every infusion.

Note #2: I was lucky to be given Perjeta adjuvantly, which is not the typical administration. In fact, I was the first patient in my Kaiser center to be given Perjeta in that fashion. Yay! Here's hoping.

Note #3: I've chosen not to have reconstruction done and "live flat."

So that's my path. I wish you lots of luck! I know you'll find support here on the board.

Hi!

I've been doing OS + Aromasin since February 2015. It's OK. I do get hot flashes, but their intensity has decreased the longer I've been on this regimen. Aromasin did make me feel moody, but not since I've been on Celexa. I feel very fortunate to be tolerating this regimen as many ladies do have joint pain and the like. I do feel a little creaky after I've been sitting for awhile. I might look into one of those desks for work where you stand up on the job (my secretary has one). In any case, once I start moving around, the creakiness goes away. Swimming also keeps me limber. Best of luck to you!

I have a friend who has been on Lupron for at least 2 years maybe 3.

My MO likes to take things slowly. I've been on tamoxifen for almost four months with few SEs (mood swings, hot flashes); we're going to add the Zoladex next week to see what happens (she predicts more hot flashes, yay me), but I'll stay on tamoxifen at least until the end of the year.

She does this to increase compliance. If we do everything at once (OS + AI), I'm statistically less likely to complete the course of treatment. I respect this immensely about her.

I asked about Lupron, but she prefers Zoladex. She said that Zoladex is standard; we'd be using Lupron off-label, and my insurance company (an HMO) doesn't like off-label use. Since they paid for adjuvant Perjeta, among other things, I'm not complaining. A friend of mine is on Zoladex and hasn't had any major problems with it.

That said, I'm probably not going to go the AI route. I care too much about bone health, osteoporosis runs in my family, and I'm over it with SEs of all kinds from various kinds of treatments (I'm looking at you, TCHP and chest-wall rads). So I'll likely stay on tamoxifen, with the Zoladex, for the duration. I'm under the impression that they'll test my estrogen levels in a couple of years to see if we've tricked my ovaries into shutting down permanently. I may have this wrong; I'll ask my MO when I see her in July.

Hi Ladies,

I have been away for a month due to an oophorectomy and my BMX. I recovered well from surgery#1, but after my BMX, I stopped breathing, had no pulse, and needed a blood transfusion. I received a sternum rub, which increased my pain level to 10+++. I was on my way to the restroom and woke up with 16 medics resuscitating me. My husband said I was found grey as a ghost on the floor. I am now working on building my blood and getting this anemia behind me. The good news is that my nodes are clear! However, it's been a roller coaster. The first pathology report showed no evidence of cancer. Of course I panicked thinking I lost two breasts for nothing. The BS requested a second analysis, which found the tumor. I'd share more, but need a nap. - Bird