Anyone starting brand drug, Enhertu?
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@weninwi I totally understand. I stopped Enhertu because I was in bed more than I was out, and the nausea was horrific. Knowing I really needed a port as well was another deciding factor. It’s a hard decision to make, so I am here if you have any questions, but it’s definitely not easy. I know there were other things I could try, but it all had to do with infusions and chemo, and I just didn’t want to. The one thing for sure I know is every person must make the decision on their own. I am at peace with my decision. The other thing, which I won’t be considering for me, is you can start and stop hospice if something comes down the pike or you change your mind. I did decide to do it to have them available at any time.
I’m sorry the steroid gives you such issues too. I hope it can be a low dose to help with your lungs.
I’m doing okay so far. It’s been a little over 17 weeks since I stopped treatment. I’m still maintaining my weight and am able to eat. Those are the things I’m looking for in starting to decline because the mets are in my stomach. I am having slightly more pain but still not bad enough to go on pain meds. The hospice nurse comes once a week to take vitals and discuss anything I may need. It’s been such a nice break from having to travel to the doctor’s office. I don’t regret the decision I’ve made and know it’s definitely not for everyone.
Hugs.
Kris
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Kris,
Today I am officially off Enhertu due to progression in the liver. My oncologist thinks I should consider next treatment, but says the decision to stop treatment is up to me. Treatments offered: Doxil, or Taxol, or Eribulin, or study #1 with high dose tamoxifen, or study #2 with DF1001 (Her2 directed antibody) given alone or with Nivolumab, or with Nab paclitaxel, or with Sacituzumab Govitecan-haziy. My oncologist needs to determine if I'm even eligible for either study as there are very specific criteria. The pneumonia that showed up on CT in my upper left lung is mild and my oncologist thinks "watch and follow" is reasonable approach vs treating with steroids given that Enhertu has now been stopped. She will refer me to a pulmonologist for a second opinion. I had hoped for stable scans so I could stay on Enhertu, which I've tolerated well, and so my husband and I could have gone to AZ for a month of two. I'm pretty heart broken, sad. I plan to meet with my priest to discuss the possible decision to stop treatment and go on Hospice. Not sure what decision I will make.
Wendy
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@weninwi I’m so sorry, Wendy, you had to stop the Enhertu. I know some really hard choices are ahead. As I started to think about stopping, I was still on Orserdu. I knew it had most likely stopped working, as my tumor markers were rising, and knowing I was not looking forward to Enhertu, I had time to process what I wanted to do. I started thinking about it the last month on Orserdu and the two months on Enhertu. That is definitely not the same as stopping a medication and having to decide whether to keep going right then and there.
I will tell you we have a spring/summer place in North Carolina, and I am hoping to get up there in late February or early March, of course, depending on how I’m doing. All I will have to do is be discharged from the hospice here in Florida for 24 hours and be readmitted to the hospice in North Carolina. When I first got off treatment, I did meet with a palliative care nurse from the hospice in NC, and so I already know who it will be. If you make the decision to go on hospice, you can have it wherever you are. I say that to see if maybe that would be able to help you get to Arizona. One other thing with hospice is you can go on and go off if you decide to change your mind and try a treatment.I hope you can go on another treatment if that’s what you want. And I am here for you if you decide to go on hospice. It’s such an individual choice. I shed a lot of tears when deciding.
You are in my prayers. I’m sending you a big hug.
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@weninwi im sorry Enhertu did not last for you, and you are navigating uncertainty and life choices with a heavy heart. It’s not easy, and is complicated with many factors. I am glad your faith tradition sustains you and your priest can support you and be a good listener and advisor. I see that your MO has offered you some treatment options. Since Enhertu stopped working for me, I have changed three more times, and I am on a mix of Carboplatin and taxotere (docetaxel) a similar drug to taxol. I have shared on the taxotere thread what that is like, and can also DM you anytime. Happy to share if you choose docetaxel , if that is helpful. Each change has brought initial tears and tiredness, sadness and helplessness. And then the hopefulness sets the course, and onward to live another day, another three month bucket list and laughter and joy kicks in.
Kris’s support and experiences choosing to end treatment will serve you well too. So much love surrounds you here. Soak it in as you can. @kbl thank you for sharing your journey and process, so intimate and heartfelt how you have processed your choices and how you are in this hospice part of your life. ❤️❤️❤️❤️
Big hugs to all. Rhonda
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Rhonda,
Thank you so much for your kind comments. I'll check the Taxotere discussion. My MO specifically said she was offering me single drug treatments, not combos, and I didn't ask her why. I will ask her about Docetaxel, but will have to be careful with my wording given past problems with communication. I did ask about Trodelvy (was not offered) because many women start it after Enhertu and she said she thought it was more difficult to tolerate. Of the three choices she gave me I'm more inclined at this point to choose Eribulin, but neuropathy is common and can be significant and I already have neuropathy. The other thing about all these chemos is the high likelihood of loosing my hair. I've never lost my hair yet, it's thinned, but I still have hair. I know it's vanity, but I cry about this as it is one visible sign of some normalcy. I really liked your description of the process of adjustment when starting a new treatment (tears, tiredness, hopelessness, then hopefulness, joy and another 3 month bucket list!). I hope I reach that point again as I think reaching a decision about Hospice will take more than a week or two.
Wendy
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Wendy I understand so well about the normalcy of having hair ! I lost mine twice and it’s growing back again now that I’m off Trodelvy. I bought a wig, which I named Leah .. lol..and she has been a good companion these last 6 months. But I am loving that my hair is growing back, every day I check how much more I have lol. Yesterday talking to my MO she asked about hair loss and I took my wig off to show her how much has grown back! Small things are large and can be adjusted over time, we are asked to accept and release, relax as we can and accept all over again. What a journey. Hugs - Rhonda
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@rlschaller Thank you, Rhonda. 💕
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