TRIPLE POSITIVE GROUP

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  • suladog
    suladog Posts: 837

    What Lago said!!!!

  • debiann
    debiann Posts: 447
    moni, so sorry to hear about the stage IV dx. Did you do herceptin the first round and tolerate it well? I see many on the stage IV reaching NED with long term herceptin, and of course there is now Perjeta too. Keep us updated on what your treatment plan will be. Prayers for you.
  • thanks lago, I think we all can use those speeches from time to time. We all fear death, and cancer can get us there faster, but reminders help to keep things in perspective. I tend to be negative, because I am a realistic person, keep me positive if you can and remind us always.

  • moni731
    moni731 Posts: 212

    Debbiann- Thanks. Yes, I did some Herceptin, 12, but was allergic to it and my NO thought the risks were too much. Now on 4 years later, she wants to try again. She is bringing my immunologist on for help and Kadcyla.. Just waiting for the receptors report. She's pretty sure it will be triple + . Got the port placed today, along with both. Biopsies . Not a. Happy camper tonight.

  • debiann
    debiann Posts: 447

    First, even with an mx, there is still some breast tissue left, they can't get every single cell.

    Second, if there were any stray cancer cells in you lymph nodes or other organs that have gone unnoticed, you want to rob them of there fuel -estrogen- so they cannot grow.

  • I was diagnosed with triple positive Breast cancer at the beginning of 2013. I went through Lumpectomy, Chemo, Radiation, and Herceptin. I am very greatful therewas a lot to throw at it. I was able to retire from a mega corp on April 1st and was on my first retirement trip.

    Unfortunately I slipped and fell in the shower and broke my Tibia. I had surgery and am no weight bearing for 12 weeks. I. am so frustrated and scared. We are logistically figuring out how to get me home as I am up in Washingt and I live in Southern California. I am on Arimidex and I hope this drug did not lead to the fracture. I am working on telling myself I fought cancer I can fight this.



  • remember your body will continue to make estrogen from your fat cells and other glands in your body. So if you're tumours are estrogen based then you. Need the estrogen killers. Of course we still will make estrogen, even without excess body fat. I sometimes think it's a no win regardless.

  • anyone does 4 cycle of TCH instead of 6 cycle?

    I wonder if 4 is sufficient enough for stage 1, node negative.

  • My OB actually told me not to get Mirena because Mirena can cause bleeding. He said he never wanted to worry if the bleeding was from the iud or something else and then have to subject myself to unecessary biopsies.

    He also did a pap. Which came back with "atrophic changes" atrophy...I cried.

  • Alice12 I wonder the same thing and can not seem to find an answer so if you please share!

  • I only had 4 tch treatments before dr called it because of side effects, feel 100 % better too. It does happen...

  • ang7894
    ang7894 Posts: 427

    I had AC & T did 4 times each every two weeks .

  • specialk
    specialk Posts: 9,299

    Just for purposes of clarification regarding the question of 4 or 6 TC - because you see people doing 4 TC or 6 TC here on BCO and it can cause some confusion - it is important to make the distinction between the taxane regimens Taxotere and Carboplatin, Taxotere and Cytoxan, and DD or weekly Taxol, and those who are Her2+ or Her2-.. Currently, NCCN guidelines indicate the approved combinations for Her2+ are 6 TC Taxotere/Carboplatin (with Herceptin and/or Perjeta), 4 DD Adriamycin/Cytoxan plus DD or weekly Taxol (plus Herceptin and/or Perjeta), weekly Taxol/Herceptin for certain situations, and FEC (plus Herceptin and/or Perjeta), which is usually used by those outside of the U.S. NCCN does not indicate the combination of 4 TC, Taxotere and Cytoxan, without Adriamycin, for Her2+, only for those who are Her2-. Of course, there are some who have to curtail chemo and get less than the usual number of infusions.

  • Jerseygirl927 ang7894 and SpecialK thank you for answers! I am HER2 + stage one no nodes and was told I was doing chemo as an insurance. Just makes me wonder about the real need for chemo. No one said a word about chemo til the HER2 dx. Never understood cause my cancer status didn't change just the HER2. I do Taxotere Carboplatin and herceptin every third week with herceptin only the two weeks in between

  • wabals
    wabals Posts: 192

    Standard of care is Taxotere and herceptin for 12 weeks then herceptin every 3 weeks for the rest of the year. Seems like you are being over treated

  • specialk
    specialk Posts: 9,299

    wabals - Taxol is what is given weekly for 12 weeks as a stand-alone with Herceptin, then Herceptin is continued for the balance of the year - not Taxotere. Taxotere is given with Carboplatin and targeted therapies. Taxol/Herceptin is a relatively new regimen when used for smaller Her2+ tumors and is used with the discretion by individual oncologists. Here is some info:

    http://www.breastcancer.org/research-news/20140207...

    greta - The reason for the addition of chemotherapeutic agents is that is what Herceptin was tested with in drug trials, and it was found to work synergistically, so it is given concurrently with Herceptin for those who overexpress Her2. There may be many of us that don't derive benefit from the chemo portion, but unfortunately there is not currently a surefire way to know who those folks are, so we do what has been shown to be the most efficacious.

  • KateB79
    KateB79 Posts: 555

    My oncologist put it to me this way: we're doing TCHP for six rounds, followed by a year of Herceptin, because HER2+ cancer is aggressive and we're going for a cure, so we need to be aggressive. She gave me the option of AC+THP or TCHP, and my research showed that the latter is just as effective with fewer side effects and a shorter overall duration of active chemo treatment.

    Going for a cure is the only option, in my book. I'm 36, and I will do everything it takes (including ten years of Tamoxifen, since my tumors were 80% ER+, too) for a long and happy life. Would I be happier if I only had to do a total of four rounds of TC? Absolutely. Is six doable? After two (the third is Thursday), I can say this: I wouldn't have chosen it off of a menu, but it's edible.

    I heard someone say recently that doing hard-core chemo like this is akin to killing a housefly with a sledgehammer, and I kind of agree. But, again: curing this thing is possible--even likely. I say blast the hell out of it, pound it to bits with the sledgehammer. Four months, in the scheme of things, is a short time to be "sick."


  • Specialk you really really should be a patient navigator for breast cancer!!!! Thank you! I will continue with herceptin for the duration of a year after chemo and I will be starting tamoxifen as well for at least 5 years.

    KateB79 I know and I feel like a heel complaining about doing 6 rounds!! The SEs have been manageable but sometimes I just get soooooooo pissed about all of it. Having some family issues right now so that doesn't help! Ok time to get off pity wagon and put my big girl panties on! Thanks for info and letting me go off!

  • I'm in the same boat- didn't think I'd have to have chemo until the HER2 positive result. That study is interesting to me because my tumor was small (<1cm). My surgery was Friday so I don't know the margins or final node results yet, but initial tests were negative. I certainly want to be thorough

  • AmyBeader hope your tests results are good news.

    Specialk that website was informative thank you

  • SpecialK-

    You really should be a patient navigator.

    My question for you: What has your followup protocol been since treatment? How often do you see your MO, BS,. scans? Do you just see one of the Drs or still see both?

    Thanks you so much.

  • specialk
    specialk Posts: 9,299

    Thanks guys - I feel like I am kind of doing patient navigator stuff here!

    momwriter - every MO, BS and PS has their own approach, so take my personal situation as an individual scenario. I saw my MO at each chemo appointment, not his NP or PA - the MO himself. If I had any issues in between I did see the PA on occasion, but I can only recall a couple of times - for a UTI during chemo. Part of that issue is that my MO is only at my office on Thursdays, so if a problem cropped up on a day other than Thursday I would have to go to another of the local offices to see him - the problem was handled by the PA though in my local office. I was seen weekly in the office for bloodwork during chemo. During Herceptin only I saw the MO and had an echo quarterly, and had tumor markers done also. After the year of Herceptin was up I continued to see the MO quarterly, with tumor markers each time, for the next year. I then moved to every six months, where I remain, with tumor markers each time. I had a pre-chemo PET scan, and a post-chemo one, and one a year later. I have had several DEXA scans because chemo and Femara pushed my existing osteopenia to the point of needing treatment, and I receive Prolia injections twice a year, ordered by my MO, and given at my cancer center. Prolia has reversed the osteopenia problem and I now have normal density. I saw my BS post-op after BMX, but then required a ALND five weeks later, so saw him post-op after that as well. For the next year I saw him every six months, then moved to annually - which I still do, partly because of my recon issues. I have had 14 surgeries due to skin issues, have lost both TE and implant, so I see a LOT of the PS, and I am looking at more surgery so that will continue. I have also participated in a Her2+ vaccine trial so have been examined by their docs in Washington, D.C., and had copious bloodwork done by them for the first year, then every six months for the following two years. I am now followed by phone and they rely on the bloodwork my MO routinely does. Late last fall I developed intense left-sided hip pain and my MO ordered bi-lateral hip MRIs, a lumbar MRI and a DEXA scan. No mets, but trochanteric bursitis, gluteus medius muscle stress tears, and fluid in the hip joint, so I am in physical therapy which has helped. MO didn't hesitate for a second to order imaging, and I am grateful both for his responsiveness, and for the situation not being worse.

  • KateB79
    KateB79 Posts: 555

    SpecialK, you rock. Thanks, as always, for all the great info.

    GretaGirl, I'm with you. I get pissed off, too! Grrrrrrr. . . . for the cure.

  • specialk
    specialk Posts: 9,299

    kate - thanks!

  • I went for cure and am done with my 12 weekly taxol and herceptin treatments. I had only 1.5mm of IDC (plus one focus of microinvasion) but a high FISH ratio of 4.8 and a large amount of comedonecrosis in my dcis. Literature suggests it has great results, though the sample sizes are small. I'd do it again in a heartbeat, side effects and all.

  • wabals
    wabals Posts: 192

    I meant taxol

  • wabals
    wabals Posts: 192

    Special K

    Actually taxol is given with herceptin for 12 weeks followed by herceptin for rest of the year.

    See ASCO Connection 2014: Her2-positive Breast Cancer Patients With Small Tumors Benefit From

    Low-Toxicity Regimen.

    This is what I was offered at Johns Hopkins and it is the standard of care arm for the ATEMPT Trial. I am in the trial but was randomized to tdm1

  • PatinMN
    PatinMN Posts: 784

    wabals, that's what Special K said in response to your post above on this page, where you had mistakenly said taxotere and Herceptin for 12 weeks plus Herceptin for the rest of the year.

  • specialk
    specialk Posts: 9,299

    minivan - I have CEA and CA 27/29 done and I believe that this is practice-wide where I am seen - so their practice protocol as long as insurance cooperates, but not all oncs feel tumor markers are reliable. I believe they are used by some for trending information, but not to be relied upon for any treatment based on a single result without independent confirmation by other imaging/testing means.

    wabals - please double check my post - I agree with you - my correction was because you had indicated Taxotere when I think you meant Taxol in your post above from 6 hours ago. The link I posted above contains the same info you are citing in your most recent post from 1 hour ago.

  • wabals
    wabals Posts: 192

    I meant to write paxlitaxel which is taxol and instead wrote taxotere. Sorry.