TRIPLE POSITIVE GROUP

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Comments

  • Upheld
    Upheld Member Posts: 71
    edited May 2017

    It's wonderful to have other women who are traveling the same road with us. So thankful for this board!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2017

    I have also not seen Taxol combined with Carboplatin in a weekly dose. Generally, for triple positive patients Carboplatin is given every three weeks with Taxotere, combined with targeted therapy such as Herceptin and/or Perjeta, and Taxol or Abraxane can be substituted if the Taxotere is not well tolerated, but the infusion remains at every 3 weeks. Taxol as a stand alone therapy is given in weekly doses over 12 weeks usually for stage 1 (1cm or smaller), or weekly when combined with AC-TH (+P) for larger tumors. These regimens are outlined by NCCN guidelines, pages 56-57, linked below.

    https://www.nccn.org/patients/guidelines/stage_i_ii_breast/#56

  • shelabela
    shelabela Member Posts: 584
    edited May 2017

    I agree with SpecialK, I do not think they give perjeta or herceptin weekly. I would check out the link she posted

  • Upheld
    Upheld Member Posts: 71
    edited May 2017

    Moodyblues, I thought I had posted a reply to your above question, but I don't see it here. I had three tumors in my breast and one in my lymph node. All four tumors were positive and I am triple positive. My tumors are large, so I'll have to have a mastectomy after the 18 weeks of chemotherapy. I will also be on Neulasta while taking the chemo.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2017

    shelabela - they can give Herceptin weekly, and I have actually seen a very few patients who have 52 doses of Herceptin - 12 with Taxol and 40 solo, but it has been quite a while and was definitely prior to the approval of Perjeta.

  • Soxfan75
    Soxfan75 Member Posts: 115
    edited May 2017

    HapB – I was told the same thing that I could get a lumpectomy on the cancer side and not need a mastectomy at all for the same reasons. After talking with the plastic surgeon, I opted for the mastectomy. The PS said I would not be happy with the cosmetic results if I did a lumpectomy because my chest was small (size B/small C) and a lumpectomy would remove almost 50% of the breast tissue. Once I decided to go with the mastectomy on one side, I decided to go with a skin-sparing prophylactic mastectomy on the other side even though there was no cancer there. I look at it this way, this diagnosis will take at a minimum one year out of my life and I'm going to do everything in my power to ensure it doesn't come back and hijack any more of them. I also did it for peace of mind. My surgeons were just fine with the decision but they did make it clear that it wasn't necessary.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2017

    HapB - the Herceptin is given in a weekly dose along with the Taxol, then the dose is increased and given every three weeks for the duration of the year. That is pretty standard for those receiving weekly Taxol plus Herceptin. Generally, those given weekly Taxol as a stand-alone chemo do not receive Perjeta because they do not meet the 2cm or greater size threshold to get Perjeta - it s currently only FDA approved for 2cm tumors, or larger, or for those with a smaller tumor but also have positive nodes.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2017

    HapB - Perjeta doesn't necessarily have more side effects, but they are very similar to the side effects of Herceptin. For some patients who have both drugs simultaneously, the SE are more pronounced because the similar SE are compounded. On the other hand, other than some GI issues and a runny nose most don't have too many issues with either, or both, targeted therapy drugs. An equivocal Her2 result means not negative enough or positive enough to make a treatment decision. Reflex testing to make a better determination (your subsequent FISH), is done and you are barely over the line that is considered a positive result - your docs are advocating Herceptin to be on the safe side and because there is thought to be use in prescribing Herceptin even for those who are lower expressing Her2 patients.

  • kae_md99
    kae_md99 Member Posts: 621
    edited May 2017

    hi all,

    anyone here continued perjeta with herceptin after tchp? i discussed this with my MO and she said it might not get approved by the insurance. i hope theaphinity trial result will make a difference.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2017

    kae - I think there are a few who managed to get this approved, but they may have been particularly high risk patients, or those who did not achieve good results with neoadjuvent treatment. Until the FDA blesses Perjeta adjuvently your insurance company has discretion to disapprove your MO's request. Unfortunately, a lot of this stuff comes down to timing.

  • Soxfan75
    Soxfan75 Member Posts: 115
    edited May 2017

    kae_md99 - I'm in the same boat. I'm doing adjuvent TCHP, but I'm waiting to find out if the insurance company will approve my onc's request to continue the Perjeta with the Herceptin for the full year.

  • kae_md99
    kae_md99 Member Posts: 621
    edited May 2017

    specialK, my tumor is not palpable anymore but recent MRI showed 50% reduction. 2 more cycles to go. both my MO and BS cannot feel the lump anymore.My MO said hopefully those showing on mRI are inactive cells. that is why i want Perjeta to continue as an added insurance if i dont get pCR.Soxfan75, has your MO put in a request for continuing Perjeta already?

  • bareclaws
    bareclaws Member Posts: 345
    edited May 2017

    I'm having Herceptin weekly for a year

  • moodyblues
    moodyblues Member Posts: 470
    edited May 2017

    SpecialK, I looked at your link, I am confused, I wonder if there's a possibility he misspoke, I even repeated what he said to me. What should I do next? Wait till I go in next time and ask again and then question him with a printout of the link or call them tomorrow?

    Soxfan, I appreciate your post as well, they will have to explain to me what is what....maybe they did swithc it. I feel so ignorant about all of this, there is so very much information to read and re-read. The more I read the more insane it all sounds.

    HapB. That is the regimen my first ONCO gave me. I have to re-verify what the second said to me.

    Upheld. Here's to hoping that they know what they're doing!



  • Soxfan75
    Soxfan75 Member Posts: 115
    edited May 2017

    Kae_md99 – I don't know if she's put in the request yet. I'll have to ask her. She said there's a study that will be published in June regarding the use of Perjeta in an adjuvant setting. I wonder if she's waiting until it gets published.

  • Mommato3
    Mommato3 Member Posts: 633
    edited May 2017

    Moodyblues, I've seen a few regimens. The one I've seen the most is Taxotere, Carboplatin and Herceptin (+Perjeta) every two weeks (sometimes three weeks) given neoadjuvant. The other is Taxol and Herceptin (+Perjeta) weekly with Herceptin given every three weeks during and after Taxol. That was the second chemo regimen I was given. TCH(P) usually includes Taxotere but maybe your MO decided that Taxotere would be too harsh. Maybe I missed it but what was the chemo treatment your new MO said you would receive?

  • kae_md99
    kae_md99 Member Posts: 621
    edited May 2017

    Soxfan75, yes it will be published in june 5 i think. i will also ask my MO if its better to put in the request after thestudy to better justify its use.

  • Mommato3
    Mommato3 Member Posts: 633
    edited May 2017

    Perjeta was approved in 2013 for early stage women. FDA approved it to be given neoadjuvant and for tumors larger than 2 cm.

  • Mommato3
    Mommato3 Member Posts: 633
    edited May 2017

    HapB, technically it's FDA approved to be given neoadjuvantly and for tumors over 2 cm. I was able to receive it adjuvantly. Your MO would need to get approval from your insurance company to see if they would allow it. It doesn't hurt to ask.

  • Soxfan75
    Soxfan75 Member Posts: 115
    edited May 2017

    HapB - I also received it post bmx and my MO got approval from the insurance company before we went ahead with it.

  • Mommato3
    Mommato3 Member Posts: 633
    edited May 2017

    Perjeta is given with Herceptin not instead of Herceptin. Perjeta has been a game changer for metastatic BC. I'm not sure what evidence your hospital would be looking for. The trials for Perjeta have all been for tumors larger than 2 cm (I think).

  • stephincanada
    stephincanada Member Posts: 228
    edited May 2017

    habp,

    The abstract from the APHINITY study is coming out next Wednesday, May 17 at 5 PM. If it is positive, perhaps your oncologist can use whatever data is made public to advance your case with your insurer. When Herceptin was first developed, it was only made available to patients with larger tumors. It was then realized that there was no "biologic reason" for Herceptin to be denied to those with smaller tumors. Watch out for the APHINITY abstract next week. Full study should be published June 6.

    Updated to add: The APHINITYabstract will be posted online at 7:30 a.m. (ET) on Monday, June 5.

  • moodyblues
    moodyblues Member Posts: 470
    edited May 2017

    Mommato. my original ONCO (I moved and hadn't started chemo yet) said I would have Taxol, Carboplatin and Herceptin (possibly perjeta), 1 time a week for 12 weeks, he told me that the new onco may have some differences, but not to worry, BC treatment pretty much follows same guidelines everywhere. The new onco said 1 time every three weeks for 6 to 8 treatments with me having the same drugs.

  • kae_md99
    kae_md99 Member Posts: 621
    edited May 2017

    Soxfan75, do you have HMO or PPO insurance?im glad Perjeta was approved for you in the adjuvant setting. are you only getting it for 6 times? along with Carboplatin,herceptin and taxotere?

  • moodyblues
    moodyblues Member Posts: 470
    edited May 2017

    HapB. I didn't want to change my ONCO, but I moved in February and he would be an hour and a half away. :( My original told me that there would probably be some differences in how my new ONCO would do the regimen (dates and longevity) but the drugs would be the same.

  • moodyblues
    moodyblues Member Posts: 470
    edited May 2017

    I just wanted to say thank you for all of you and the information that you shared with me. I haven't even started chemo yet and am feeling a bit melancholy. I sailed through the BX, the MX and the drain tubes, but am feeling so down right about now. I see from previous posts that I WIILL be okay AND I WILL get through this with support. Thank you!!!


  • coachvicky
    coachvicky Member Posts: 1,057
    edited May 2017

    moodyblues

    This journey can be a roller coaster ride of ups and downs. I encourage you to journal at least 3 days a week. You can look for patterns in your moods and maybe see what triggers the ups and the downs.

    The Sunday night before my chemo treatments on Mondays, I got really anxious and cranky. This would start as I began packing and getting ready for the next day. I changed my habit and got everything ready for treatments a little at time and finished by Friday. I was better able to enjoy the weekend. My journal helped me see this trend.

    You WILL get through this and, on the other side, be stronger than you ever thought. It is one step in front of the other!

    Love and Warm Wishes to You!

    Coach Vicky


  • moodyblues
    moodyblues Member Posts: 470
    edited May 2017

    CoachVicky. As always, thank you. I think I will do that. I am so used to being in control and having a schedule or routine everyday, now there is none of that....maybe 'that' is the reason for me feeling a bit out of sorts. I think what I am dreading the most is the sleeplessness, weight gain, and swelling. Many women base their self worth on how good or sh*tty (excuse my language please) they look on any given day, I thought that I was not in that group and now realize I am. I am intelligent and I know that I have more to offer than my looks, but now I am doubting everything about me.

  • moodyblues
    moodyblues Member Posts: 470
    edited May 2017

    kb870. Thank you! Goodness, I am not wanting do do a marathon, but I hear it is like that. Can't I just be a spectator? Please? :):):)

  • Soxfan75
    Soxfan75 Member Posts: 115
    edited May 2017

    kae_md99 – My insurance is a Fee For Service (FFS) with a PPO. The plan for now is to get it with each chemo treatment of TCH, so yes, 6 times. At some point, my onc is going to push my insurance company to cover it for the entire year that I'm getting Herceptin.

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