Anyone starting brand new drug, Enhertu?

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  • Nkb
    Nkb Member Posts: 1,436
    edited August 2022

    it looks like I will be starting Enhertu now. I would love Any tips you have about this drug.


    SusaninSF- What is BDC-1001?

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  • carmstr835
    carmstr835 Member Posts: 388
    edited August 2022

    I am not happy about this drug. Enhurtu is made with sucrose and it is infused with 5% dextrose and will break my fast. I fast 5 days before my chemo, day of and 24:hours after. This infusion will be infusing sugar in my veins with the sugar chemo. I just messaged my oncologist I don’t want this drug. I am sure he will be very upset with me. I have no idea what he will use as my next chemo, but he might just give up and tell me to find another oncologist. I had such high hopes until I learned of the sugar content. There is no other option. It must be mixed with a liter of 5% dextrose. I called Astra Zeneca they confirmed it.

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  • Kikomoon
    Kikomoon Member Posts: 350
    edited August 2022

    NKB, I had some weird stuff going on with first infusion, but I also have Brain mets so think that was a factor - double vision and painful legs. Since then I vomit on day 4 after the infusion, like clockwork, feel generally fatigued and constipated the first week, have mystery foot pain (probably from so much treatment), but that's about it.

    I want to know if anyone on here is getting Enhertu covered by the U.S. gov't marketplace healthcare plans once out-of-pocket max is reached? I will call individual plans, but having done this for my DH once before, it's hard to get any answers till you're signed up and need the drug. Just getting prepared, as I've started LTD and don't think my employer will want to keep paying for my insurance, as I'm sure I'm costing them a small fortune. I know I have 9 months of Texas Cobra coverage once they let me go but looking at all options.

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  • Nkb
    Nkb Member Posts: 1,436
    edited August 2022

    Thanks Kikomoon!

    I am on Kaiser and it is covered. I am going to use cold caps which I have to pay for until I reach a lifetime of $1600. which won't take long I suspect.

    I hope that it works well for you!

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  • carmstr835
    carmstr835 Member Posts: 388
    edited August 2022

    I spent $3000 this year alone for dignicap. dignicap said when I purchase nine $300 cards.one for each chemo. The rest are no charge.

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  • illimae
    illimae Member Posts: 5,710
    edited August 2022

    kikomoon, I don’t know about marketplace plans but everything is covered by my Medicare and employer (retiree, I medically retired early) Medicare advantage plan.

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  • rosetide
    rosetide Member Posts: 29
    edited August 2022

    Hi Susan,

    I am Chinna. I have been on this discussion board since my 2nd diagnosis with Breast Mets 2016. I read your history and was surprised to see that you have been fighting longer than me lol! Without going into too much detail. I had BC first diagnosis in 2008. Recurrence in 2016. I have been on H&P for 7 years without no new mets and stable. This June 2022 that changed. I have been on KADCYLA since June and just got CT scan results that it is not working. My tumors are enlarging. I was curious to know if you took these routes, and what are the drugs you are taking. I am her2 positive. It was very enlightening to read your post and see that this thing can be beat for a long time...any feedback you can offer would be welcomed. Thank you and Godspeed.

    Chinna

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  • nnguyen
    nnguyen Member Posts: 57
    edited August 2022

    Hello,

    Is anyone on Enhertu with bone met and know (via imaging) Enhertu effectiveness (work or not work) against bone met?

    Thanks.

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2022

    Hi Nguyen,

    I am starting Enhertu in 2 weeks and I am bone only- I asked if bone only disease results had been teased out- they haven't yet- not sure many bone only (for Her 2 low) were in the study. also interesting how well it works on ILC

    I will post when I get results

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  • MarsTheStrong
    MarsTheStrong Member Posts: 1
    edited September 2022

    As Enhertu is an IV therapy, do most people get it with an IV placed each time, or has anyone gotten a port for this medication? It is difficult to get an IV in me and this has me concerned.

    Thanks!

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  • NinaCA
    NinaCA Member Posts: 204
    edited September 2022

    I am taking an IV drug, Taxol, and I decided on a port since I have been getting the drug for 10 months and it's just plain easy once the port is put in. You can do it with an IV in your arm each time if you wish but ask the infusion center where you will be getting Enhertu. I believe it is only a half hour infusion after the first time unless you get other medications too. Taxol was weekly so I had lots of IV's but Enhertu is every 3 weeks so you don't need it as often is I did for Taxol. Since I will be switching to Enhertu I will use my port for my infusion every 3 weeks. My guess is most of the medication I will be receiving in the future will be IV and since I have no problems with it I will keep it.

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2022

    I am going to get it by IV for now and re- evaluate. The chemo nurse said it was t a problem with my veins.

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2022

    I got infusion #1 today- first one is done over 90 minutes. Subsequent ones will be 30 minutes

    pre-meds are oral: Zofran (nausea) and steroids. so far am fine- a little bit of nausea. Will keep track of symptoms and report back. supposed to continue Zofran regularly for day 2 and 3.

    Used a cold cap as well

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2022

    Hi all,

    I am day 6 of first infusion. Lots of nausea and some GI stuff- hungry, can't eat. No vomiting. fatigue. I am happy to read that most people are having fewer symptoms with each progressive infusion.

    I used the Paxman cold cap- first 15 min a bit of a challenge, but RN distracted me - so was fine after that

    Today is the first day I feel pretty good.

    One. question I had - no one has really commented on their labs being so low that they needed to postpone treatment or lower dose. I usually have marrow issues with drugs - anyone else have low HGB, white blood cells or platelets or liver lab issues?

    thanks

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  • concerned_daughter11
    concerned_daughter11 Member Posts: 30
    edited September 2022

    Hi everyone, this will probably be my last post on this site. I just wanted to say thank you to everyone who has been very kind to me as I asked questions for my mom. I'm sorry to say that my mom passed away Tuesday morning due to complications from enhertu. We had alot of hope for this drug, but unfortunately it didn't work for her.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2022

    concerned_daughter11, we are terribly sorry for your loss. May your mother rest in peace.

    The Moderators

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2022

    Concerned-Daughter11- I am so sorry for your loss. mothers are the best and so painful to lose. I am thinking about your today and sending warm hugs

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