TRIPLE POSITIVE GROUP
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Congrats ang7894!
I'm joining this group as well since after my surgery my onco had my lymph node tissue retested for ER/PR and it came back 99% ER positive and (some lower percent [47%?]) PR positive. On my previous biopsies (node and breast tumor) all came back HER2 positive and ER/PR negative. Strange, but I guess false negatives happen because the sample is smaller on the biopsies. So now in addition to Herceptin till December, I'm also taking Tamoxifen (5 years).
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SpecialK~ Thank you so much for your response! The "two rounds" is what the MO is recommending AC <and> T although the study that he quoted showed no difference between recurrence rate for T alone vs. AC + T. Herceptin is included in both regimens, of course. If she has the AC + T now would she still be a candidate for it in the future?
Thanks Again!
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c-squared - there is a lifetime max limit on Adriamycin, and to me (I am not an oncologist!) it is overkill for a mass less than 1cm. I would personally elect a milder regimen with Herceptin.
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I'm sure everyone is aware of the upcoming ASCO cancer conference at the end of this month.
Abstracts were just released to the public. Among them were a couple dedicated towards the HER2 inhibitor, ONT-380, developed by Seattle, Washington based Oncothyreon.
There is investor interest in the company stock [ONCY], as it jumped 75% over the past two days. It might be nothing, since many of the investors are simply speculators with a mob mentality leading to irrational exuberance. BUT, there may be value with this new HER2 inhibitor.
It will be interesting to see what they say about these trials during the conference in two weeks.Here are those ONT380 abstracts:
1. ONT-380 in the treatment of HER2+ breast cancer central nervous system (CNS) metastases (mets).
URL: http://abstracts.asco.org/156/AbstView_156_151078.html2. Phase 1b study of ONT-380, an oral HER2-specific inhibitor, in combination with capecitabine (C) and trastuzumab (T) in third line + treatment of HER2+ metastatic breast cancer (MBC).
URL: http://abstracts.asco.org/156/AbstView_156_148081.html -
forgive me if this has been previously discussed but did or are any of you receiving hormone depression drugs while receiving neoadjuvant chemo such as TCHP to achieve PCR?
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steph - there are only a few that post here that have done TCHP so far, but hopefully they will chime in - did you ask this question on the TCHP threads? Is this something you are curious about or is it being recommended as a way to boost the chances of PCR?
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Steph, I had TCHP and was not menopausal or peri-menopausal when diagnosed, and I did not receive any hormone suppressors.
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did you recieve pcr Cassie?? I am just doing some research I saw karmanos is doing a trial giving hr and her2 pos hormone depression to reach pcr from what I've read triple pos do not get pcr as often as hormone neg do when I asked my oncologist about this she said I'm not worried about it you will get a good response..I am kicking myself I wanted a 2nd opinion but I also wanted to get started there are so many what ifs and I don't want this to come back.So far I am impressed with my results since I can no longer palpate my once very palpable tumor but that doesn't neccessarly mean I will achieve pcr
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hi ladies, hope all of you are doing well. I have a question for you. How long did you take herceptin? My understanding was that herceptin was taken for one year (or equivalent dose) and that would start with the first herceptin we took which was together with other chemo drugs. For example I started tchp in August 14' and was expecting to be done around aug 15. Where I had my infusion this week I asked the nurse, she checked up on my chart and said I was prescribed 17 only herceptin infusions of which I have received 7, so it would be mid December when I am done. I was really bummed as I recall onco saying I would do one year and had a few months left during my last visit. I will see him again at the end of this month but I wanted to ask you in the meantime. Thank
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I think most of us were prescribed herceptin for one year, which works out to about 16 or 17 total herceptin infusions. I had 16 total, 6 with chemo and 10 alone.
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my daughter decided to find out if she is genetically predisposed to this terrible disease, she is 33, my youngest daughter and has 2 babies under 6. When she went to the genetic test center in Boston ma. They were not too concerned about my BC diagnosis, as they were in her fathers melanoma Dx and his mothers ovarian issue? They said if she was triple negative then they were more concerned, what am I missing here? It's bad enough that we have this, but because she is to young, they weren't concerned yet? I know a few people under 35 that already have this disease, what gives? Am I wrong?
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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.
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Stephmoen--I rarely post but read the boards often and thought I'd chime in. I was 37 at diagnosis and highly triple positive (ER 100%, PR 98%, and Her2 3+ by IHC). My disease was bilateral, likely stage 1 on the left and stage 2-3 on the right--staging is complicated on that side, as many of my biopsy cores were DCIS only and I got neoadjuvant TCHP. I had a pCR bilaterally and was not given tamoxifen or an AI with the regimen. My oncologist, widely known in Texas for her breast cancer expertise and part of a large academic/NCI designated center, explained this by telling me that the data has suggested an improved response to chemo and radiation without the hormone suppressors. You might be interested in the TCHP thread as well. I can't think of anyone there who received tamoxifen or an AI while on therapy. Hope this helps!
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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.
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I had 17 Herceptin infusions, including 6 with chemo, every three weeks, and it took just under a year to complete.
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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!
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Hello everyone! I just found out last week that I am indeed triple positive. I am in the midst of getting additional tests (typical- echo,ct,cmp,cbc blah blah). The doc is leaning strongly towards chemo before surgery but indicated we will discuss those options once the tests are completed.
I am at the very beginning of this ride and really appreciate all the time that has been dedicated by each of you to post your experiences,thoughts and suggestions to everyone .
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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.
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An article o Aromatase Inhibitor induced arthralgia and improvement using fish oil supplements. I actually tried this months ago on my own not knowing about the trial but didn't keep it up.
I am currently off my AI because of the side effects.
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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
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I Completed TCHP Mar 16. After my surgery, I will be put on an aromataise inhibitor. Probably in June,, is that what you mean Steph?
PMR53
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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
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sorry, they won't do genetic testing on me because of my age, they tell me mine is probably environmental?
was too sick last 3-4 days, finally starting to feel human. So so we know where the neuropathy comes from with these drugs for chemo?
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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
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SusanHG, glad to hear about the changes. I stopped femara for three months, and my extreme feet pain has not dwindled one bit. I am now back on tamox, for less than a week and am resigned. And I was told 10 years. Shit. So I just did pick up my clinic notes from last visit, and they accused me of not being specific about where it hurts!!! I have told them my feet. And they already know about two shots for trigger thumb. I had just stopped complaining, because they would always deny the issues that A.I.'s have with me! But, they wrote down peripheral neuropathy, which they have been denying forever. And, apparently, fibromyalgia has been added to my list of woes. You know, one of those that cant be proven or unproven. And anxiety. But it's a funny thing, because THEY are the ones who contribute mightily to my anxiousness, mostly because of all of the times they have said, Hmmm, we have never heard of THAT before....I just need to get my act together, fix all the mistakes from there in my medical records, so I can change where I go. Because right now, it is really laughable. Oh yeah, my last visit with gyno there, they actually wrote down "she is having problem with hot flash in vagina" WOW! I don't have hot flashes anywhere anymore, and when I did, they were so mild as to be almost undetectable, so much so that I couldn't understand why everyone made such a big deal of 'em...
I have been wondering where P-brain is too...
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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 ......
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Well, after reading Tomboy's post, I don't feel quite as crazy. I've had 2 injections for my trigger thumb & now facing surgery because it's back & really bad. My MO nurse said she'd never heard of it as a SE, but I know Special K had it & others. I've been on Tamoxifen since Halloween (definitely a trick) & have had a lot of joint pain. The MO said they'd be checking my hormones over the next year & when they're convinced I'm in complete menopause, they'll want to switch me to an AI. Then she started telling me all the SEs. I said "so why would I want to go from bad to worse?" She said it was the recommended treatment. I'm just ready to have my old body back. I'm 51 & feel 81 sometimes. Especially when I sit for very long or lie down & get up. I experience the really sensitive feet too, Tomboy. I didn't realize it was a form of neuropathy until my last MO visit
Susan you have a gift for writing. Put me on the waiting list for your book!
Sorry for all the newcomers to this forum. It's not easy, but having these wonderful ladies to lean on have made it a lot more bearable.
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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
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Susan
So,so happy to see this renewed excitement about your life......
Those of you still in treatment may not be at the point where you can reflect on this but for everyone and every one here who has faced a cancer diagnosis...

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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.
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