TRIPLE POSITIVE GROUP

windgirl - 17 Herceptin infusions, one every three weeks, is equal to 51 weeks - so, a year.  You are about 9 months in, why have you only had 7 infusions at this point?

jersey - have you had genetic testing done? The reference to TN is most likely that if she were diagnosed at a young age with a TN breast cancer it is likely a BRCA induced cancer.  

Steph, I did have a pCR, actually.

windgirl, I should be finishing Herceptin after one year, including the doses I got during chemo. In fact, last visit I asked my MO how many infusions he planned on giving me. He said he would check the protocol and give me an idea of my end date.

ok thanks trixiecat and cassiecat..there seems to be quite a few trip positives on here that received complete response although the statistics say it's less than hormone neg I am feeling positive with my treatment plan and drs just from time to time I think well should I have done this instead?? Can't wait until I reach near the end 4 more infusions to go!

Steph -- you'll likely get hormonal therapy after your surgery. I started hormonal therapy shortly before rads. By the way, I also had a good outcome with neoadjuvant chemo -- no active cancer in breast or nodes. It allowed me to get a lumpectomy (took out a golf-ball sized amount of tissue around the surgical marker) rather than a mastectomy (too lazy to do reconstruction right now).

Freygea -- welcome to the group! At first, I was bummed that I was triple positive, but I now see some of its advantages (targeted therapy + various options for hormonal therapy). Hope you get your treatment plan in place soon.

thanks ladies for some reason the nurse did not count the first 6 I got with chemo, but based on your messages and consistent with my understanding they should be included. Maybe she made a mistak

This is what I was talking about I suppose it's a trial so isn't commonly done? I was just interested if anyone else knew anything about it

Title A Randomized Phase III Trial Evaluating Pathologic Complete Response Rates in Patients with Hormone Receptor-Positive, HER2-Positive, Large Operable and Locally Advanced Breast Cancer Treated with Neoadjuvant Therapy of Docetaxel, Carboplatin, Trastuzumab, and Pertuzumab (TCHP) With or Without Estrogen Deprivation

Objective

Primary:

To determine whether the addition of estrogen deprivation to neoadjuvant therapy consisting of TCHP yields a greater rate of pCR (breast and nodes) than TCHP alone when administered to women with operable, hormone receptor-positive, HER2-positive breast cancer.

Applicable Disease Sites Breast - Female

Drugs Involved Carboplatin (Paraplatin)

Docetaxel (Taxotere)

Pertuzumab (rhuMAb 2C4)

Trastuzumab (Herceptin)

Status Open

Location Karmanos Cancer Institute

Weisberg Cancer Treatment Center

Thanks for the link Ashla. I am strongly considering stopping Femera due to the side-effects--which continue to worsen. I have been off twice so far-once for 4 weeks the other for 8. The second time my SEs really didn't change. I have also tried the other 2 options and tamox. I am about done with the increasing joint and bone pain. i also took fish oil--have for years-but nothing changed. My liver panel has markedly worsened as has my blood glucose levels. My MO wants me to continue-as they all do-especially since I did not finish taxol, taxotere, or Herceptin due to toxicity and Herceptin induced heart failure.

I finished 6-weeks of IV iron sucrose infusions and am up to monthly B12 injections. My labs are making a slight move in the right direction after the 5th infusion. Finally. Repeat mid-June to make sure they stay where they belong!

I realized with the continued winding path of cancer treatment and side-effects I needed to do something about my professional position and am moving from Dean to nursing program director. When the plan was actually in place and moving I felt the biggest weight off my shoulders. I will go from admin to faculty with a director role (which I have done before), will be back on academic hours instead of business hours, and not be in meetings 80% of my time. Am in the transition period now. I will get to teach a couple of classes that I love. I can do more editing--which I love, and have been asked to do a bit of consulting on an acute care psych unit. My stress level is already much lower and when the transition is complete will be about 9000% lower. Can you see my smile?

I have read books, caught up on Grey's and Mad Men and Bones. Watched a new series on Netflix and another on Amazon Prime and anxiously awaiting the new season of Orange is the New Black. Planning a few days in Boulder soon to see one daughter, a few days in Dallas to see another any my precious grand, and a few days in the West Texas area to see another daughter--and maybe my son. Still no property settlement-which is fine-despite Dial-A-Dick being married to Mrs. Dick after a lengthy 5-week courtship. Bless her heart. His chapter in my hopefully soon to be started saga of Cancer will be lengthy.

Am I overlooking PBrain? I haven't been a regular due to sleeping like a hibranating beak-but in reading back a bit I haven't seen her post.

Much love to all

Susan & Tomboy....

I hear ya both. Have been having long discussions about AI's with my MO . He's switching me to Aromasin since it's supposed to have less musculoskeletal SEs. Gonna give it a shot but I am ready to go off the ESD's as Lago calls them if it doesn't get better.

Getting a bone scan too.

Susan

Sounds like some positive vibes coming from you. Great news.. Really great news.

Now my admonishment: print out a copy of this post and search out all the others in these forums and get thee to a publisher

The most brilliant, funny , sad, smart, sassy, human and above all touching cancer and life survivorship writing I have ever read.

Tomboy

Got the neuropathy stuff especially on my hands and a serious tremor which is thankfully on my left hand . Trying to figure that out too.

Problem is I can't remember what normal was ......

Ashla and Efcjax. Thanks for the writing compliments. I have thought about printing our my posts just for the history of the disease. I have had a title -or might have one. "And Unfortunately..." My first week of diagnostics out-of-town I had 9 punch biopsies of Mega Mass and several of my axilla. Mega grew during the week of diagnostics and I went from no palpable nodes to several in just a few days. On day 4 I had a missed call from the ratiation oncologist. His message went through the this that and chicken fat of diagnoses. THEN he finished with "And unfortunately, you have metastatic nodes to your axilla. As a nurse you are aware of the staging implications." And he hung up. I was on food and fluid restriction for a PET the next day. I looked at the bottle of well-aged single malt scotch on the table in the hotel and said screw it. And literally had a few swigs from the BOTTLE! Which I had never done in my life. I reported it sometime later but requeste a different RO when I was having diagnostics. And, I have totally ignored his "staging" statement. His report said stage 4 but my MO said he would go with a stage 3ish. I argued the nodes are just that at diagnosis-not mets. And here I still am.

Tomboy. I have trigger thumb also. A friend who is a paramedic and works sports teams has used KT tape on my hand. It really does help. The first time I had decreased or no pain for several weeks. The tape comes in nice colors. If you don't know anyone to wrap--google--and you will find clear directions. I was also given the fibro label. Called BS on that!

I have suggested/recommended that anyone and everyone who works with cancer and chemo be required to take a couple hits of chemo--the worst of the bunch and see how they feel. It won't kill them with 1-2 doses but should make them have a bit of compassion and understanding. My MO and nurses are wonderful--not implying otherwise--but I gave chemo to little ones and did not know of what I spoke. I told those little ones and their parents we could control pain and nausea with medication. What a load of bull butter!

My stick on boobs are starting to give me blisters-after 8 months. Do not want to go back to the 2.5 lb ones-on each side. I would go with a sports bra and be flat but my stomach has grown so much since this adventure.

I spent much of today wandering the psych unit gathering and taking in the environment, listening to staff, and watching. I loved being back in a clinical setting.

And, I am going to Boulder Friday and coming back Monday!!! So excited. My sweet youngest is starting a research gig in public policy for food and nutrition this week--she just finished 1L of law school. Her preceptor also owns a goat farm somewhere in the city limits of Boulder. I plan to pet a goat, buy some goat soap, and enjoy a couple days with my youngest.

Much love to each

Ashla, thank you for that! You know, you would have thought I would have learned not to put off the things that make me happy,but I still do! Like all my responsibilities and chores and all must be done before I let myself play. And I am finally beginning to realize--- those things will never be done.... So I have been letting myself play a little more lately, and I may feel a little sheepish telling you this, but I have found some little miniature toys that I really like playing with... My man is kind of looking at me askance, but when I told him that it is really calming me down, and guess what? I am smoking less when I do allow myself to play with them, well it feels really good to me. My new obsession! So, I am planning to do a set of paintings of them, set up in little vignettes, to make posters out of to sell for this coming christmas! I got sucked in my their little happy faces, and bright colors, so, yeah, I guess for the first time in my life I am seriously... playing with... dolls! They are called shopkins, so cute. Of course I also brought a zombie doll.

Ashla-thank you!

And Tomboy--play with your toys, paint, and create.

I am feeling so much better due to decreasing stress. The pain and crappola remain--but the decreased stress helps so much. I am actually hoping to start sewing again. Maybe this weekend!

fluffqueen -- my Mom can drive me crazy, too. Yours sounds a little passive-aggressive; mine is the same! Ugh.

Since I've started on an AI, I will be having a dexa scan soon to determine a baseline re: bone density. Can anyone explain to me what that entails? Does it take very long? Now that the kids are getting out of school, I have to think about setting up childcare for my medical appointments.

I love my mom, but she sure can make it tough. On Mother's Day, the family was here and talking about my sons upcoming weddin. His fiancé, whom we love, was sitting there when mom asked what the colors were. Mandy says deep purple, and my mom proceeds to say she hates purple. Seriously. I did call her out on that one, told her it was rude and not her wedding. Fortunately Mandy has seen her in action before so nothing really new.

For the dexascan scan, I didn't even have to take off my clothes

has anyone found out what causes the hercepton receptor? Since this is a protein, if you consume more protein, does this affect the receptor? I have been wondering about this recently, or is it something your body produces regardless?

Jerseygirl, you should get yourself the most up to date "Dr. Susan Love's Breast Book", that you can find and read it. You will learn so much, and I really like that she doesn't talk as if she has an audience of third graders. It's that good. Your library should have it, but I really want to get my own hard copy, to mark up the pages!