I need to choose a chemo regime!

Jayloo
Jayloo Member Posts: 2
edited June 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hi everyone, I’m in the UK and I was diagnosed stage 4 a couple of weeks ago with mets to neck, rib and chest wall/lung. I am ER pos, PR neg and HER2 pos. I was originally stage 3 five years ago. My onc said a few days ago his recommendation would be Paclitaxel with Perjita and Herceptin. However, I told him when I had Taxotere five years ago I had a severe allergic reaction and was resuscitated with adrenalin. SO I have now been given the choice of 3 regimes and I want to Decide so I can start ASAP.

I can risk Paclitaxel even tho it’s the same tax family. Onc says good results, and comes with perjita and Herceptin.

OR I can have vinorelbine with Herceptin but not perjita.

OR I can have TDM1/Kadcyla.

Of course, I’m not asking for a decision but, my Goodness, I’d be SOOOO grateful for some thoughts and your experiences on these 3 packages - as bottom line is the choice is mine and the only info I am missing is real personal Experiences.

Thank you for reading! 🙏

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2019

    Jay loo - We're so sorry had to join us, but wanted to say welcome. You are in good company here, and we are sure you'll find real personal stories and many inspirational members who post regularly about their experiences living with metastatic breast cancer that will help you choose the best option along with your medical team.

    Please come back often and let us know how you are doing. We look forward to hearing more from you soon!

    Best wishes,

    From the Mods

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    I did have the paclitaxel/herceptin/perjeta regimen, the paclitaxel was weekly for six months. This regimen had very good results in the recent CLEOPATRA study. I do have a thought on your question - when you had Taxotere, was it dose dense taxotere delivered every three weeks? If so, the CLEOPATRA regimen with weekly Taxol would be a lower dose, more frequently so perhaps would be less likely to trigger an allergic reaction. You might also be able to get an anti allergy med to use that would help? Obviously these are things you can discuss with your doctor.

    The CLEOPATRA regimen got me to NED, my breast tumor can no longer be detected on PET scans , so I am a big fan of that one. But a serious allergic reaction like you had might not make it the best choice for you. How risky does your doctor think it will be

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  • Jayloo
    Jayloo Member Posts: 2
    edited June 2019

    I am so grateful to you for helping - that was very useful information. Yes, I think that is an obvious question to ask my onc, how risky he would consider it. Yes, I had FEC-T back in 2014 and there were weeks between infusions. Very interested to learn about the Cleopatra study and regime - thank you for the heads up. However the takeaway printout the onc gave me def says once every 3 weeks so maybe that regime wasn’t adopted in Scotland, where I am. It would certainly appeal more to me

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    I was checking the article here on BCO re the CLEOPATRA study and it actually was three week cycles with Taxotere not weekly Taxol! Sorry for misinforming you! But, anyway, I did have weekly Taxol with h and p every third week and it worked well for me. I was off Taxol after six months and continue with h&p indefinitely

    Maybe the weekly Taxol is a possibility if it would lessen the risk of allergic reaction. I would ask about it

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  • illimae
    illimae Member Posts: 5,710
    edited June 2019

    Hi there! I have the same subtype as you and had severe reactions to taxotere and taxol. After the first 2 attempts failed to go smoothly, I requested and was approved for abraxane (in the tax family but more expensive to make), which worked very well. I would go this route again for sure. The Herceptin and Perjeta were included and have kept me stable for 2.5 years so far.

    I am not familiar with vinorelbine, sorry.

    For the 3rd option, if herceptin is working or is expected to work, I’d prefer to give it a try before moving on to the other HER2 meds. Since herceptin typically has good results most onc’s recommend it first and save the others for later.

    Good luck to you 🙂

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  • pajim
    pajim Member Posts: 2,785
    edited June 2019

    Jayloo, I'm not HER2+ but the CLEOPATRA regimen, the one in your first choice, is the standard of care. I have a friend who couldn't take Taxol so they substituted carboplatin (with H&P). It worked just as well. And lo not everyone loses their hair LOL. Or Abraxane might work where Taxol doesn't.

    Your second choice might be OK too. The third one is something you should save in reserve. Eventually your first choice will fail (hopefully not for many many years) and you'll want to move to TDM1.

    Welcome here and I'm sorry for the circumstances which bring you.

    https://www.nejm.org/doi/full/10.1056/NEJMoa1413513 is the link to the Cleopatra paper. it's free though you'll need to register.

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  • JFL
    JFL Member Posts: 1,947
    edited June 2019

    Jayloo, surprisingly, having a severe, anaphylactic reaction to one taxane doesn't mean you are necessarily allergic to all of them. I went into severe anaphylaxis when I tried Taxol, within minutes, and had to be given adrenalin. My throat closed up, my face swelled immensely and became bright red and I started vomiting uncontrollably. It was scary and I have kept an epi-pen with me since that day. However, I have taken Taxotere and Abraxane with no issues. For me, I was told that a very small % of people are allergic to the binding agent in Taxol called Cremaphor. Taxotere and Abraxane use different binding agents - Polysorbate 80 for Taxotere and Nanoparticle Albumin for Abraxane. Did your doctors tell you if they thought you were allergic to the Taxotere itself or could it be the binding agent or some other inactive ingredient? Taxol and Abraxane are the same ingredient from the Pacific Yew Tree, while Taxotere is a semisynthetic version.

    As for first line, if you can tolerate it, the taxane combo would usually be the recommended treatment. As for vinorelbine (Navelbine), I am on that now. I am not HER+ but heard it works very well in HER2+ cancer and is primarily used in HER2+ cancer treatment. However, it is usually given later in the treatment sequence. Good luck in making your decision. I hope that whatever you end up taking kicks the cancer's butt!


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