TRIPLE POSITIVE GROUP

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Comments

  • specialk
    specialk Posts: 9,299

    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 Posts: 394

    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 Posts: 9,299

    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 Posts: 70

    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 Posts: 394

    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 Posts: 246

    I'm having Herceptin weekly for a year

  • moodyblues
    moodyblues Posts: 393

    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 Posts: 70

    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 Posts: 468

    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 Posts: 394

    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 Posts: 468

    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 Posts: 468

    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 Posts: 70

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

  • Mommato3
    Mommato3 Posts: 468

    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).

  • 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 Posts: 393

    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 Posts: 394

    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 Posts: 393

    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 Posts: 393

    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 Posts: 984

    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 Posts: 393

    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 Posts: 393

    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 Posts: 70

    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.

  • kae_md99
    kae_md99 Posts: 394

    Soxfan75,thanks. pls upadate us on how that goes coz i also want to come can continue perjeta along with herceptin.thanks

  • Mommato3
    Mommato3 Posts: 468

    Moody, I've never seen Taxotere/Taxol, Carboplatin and Herceptin given weekly. It's usually every two weeks (sometimes three) for 6-8 treatments. The regimen that is given weekly for twelve weeks is usually Taxol and Herceptin.

    I received Benadryl with my infusions too. They made me a little sleepy but I felt fine by the time I had to leave. They give you the Benadryl to help counteract any allergic reaction you would have to the treatment.

  • Upheld
    Upheld Posts: 35

    Got the results from my PET scan today.  Besides the three positive tumors in my breat and the positive lymph node, the PET scan revealed a left internal mammary lymph node metastasis.  In addition, a tiny spot was found on my iliac bone (on the sacram) which the radiologist said he could not rule out bone metastases.  The oncologist said he could not say it was cancer mets either as it is not in an area that can easily be biopsied.

    So, his recommendation is to go ahead with the TCHP course of 6 cycles over the next 18 weeks and then another PET scan before a mastectomy to see if the chemo worked.  What are you thoughts?

  • elainetherese
    elainetherese Posts: 1,640

    Hmm... Well, PET scans are notorious for producing false positives. Three PET scans showed "something" on my left femoral neck (hip). However, it never showed up in a CT scan or an MRI. So, my oncologist considers that to have been a false positive.

    I did get a "before" PET scan and an "after" PET scan. The latter showed that the chemo worked! It showed that the active cancer was gone from my breast and compromised node. It gave me the confidence to get a lumpectomy rather than a mastectomy.

    I would do the chemo, and hope that the second PET scan shows that it has worked. ((Hugs))

  • kae_md99
    kae_md99 Posts: 394

    i never got a pet scan. but i do wanna get one after chemo. when is the best time after to get a pet scan after chemo to prevent false positives you think?

  • elainetherese
    elainetherese Posts: 1,640

    kae,

    I don't think that timing necessarily matters. Just make sure that the radiologist knows about all the various surgeries and injuries you've endured because they might light up. For example, the site of my port insertion lit up.

  • coachvicky
    coachvicky Posts: 984

    I get so confused reading how treatments are done.

    I had bilateral mastectomies and then my chemo.

    I read that some get chemo and then surgery.

    Can anyone explain with the difference?

    Thank you.

    Coach Vicky