Enhertu for Stage 4 Breast Cancer

Posted by kblioce @kblioce, Nov 16, 2024

Hello, I was diagnosed with Stage 4 triple positive breast cancer mets bones 10 years ago. After 6 months, I had no evidence of disease and have taken Herceptin and Perjeta every 3 weeks for the last 10 years and had no progression. My tumor marker started slowly going up for at least a year but that can happen for many reason. Unfortunately, my tumor marker quickly elevated so I had a PET/CT scan this week and the cancer is back in my bones. My oncologist is going to take me iff Herceptin and Perjeta and start me on Enhertu and no other treatment because he says it is shown to work well. Does anyone have experience with Enhertu? I’m concerned that I might need Taxotere or some other more lethal drug. Any thoughts or experiences? Thank you.

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Colleen Young, Connect Director | @colleenyoung | Nov 24, 2024

In reply to @kblioce "Yes, I had my first treatment on November 19th." + (show)

How are you doing with the new treatment?

rosa1935 | @rosa1935 | Nov 25, 2024

Hi. I can’t give you statistics of enertu but over here in uk we have been fighting to have this medication available on NHS but the government and NICE, after numerous nettings with us and hundreds of thousands of people signing a petition, it’s been turned down. But if you go accross the border into Scotland, it’s available in the NHS there!! It’s mainly used for secondary cancers and unfortunately young women here with secondary cancer, won’t survive without it. You are very lucky to have it prescribed for you. Best of Irish ☘️ luck to you. I’m a breast cancer survivor-got my 3 year clear mammogram last May x

kblioce | @kblioce | Nov 25, 2024

In reply to @rosa1935 "Hi. I can’t give you statistics of enertu but over here in uk we have been..." + (show)

I’m so glad you are doing well!! That’s a blessing for sure. I have been reading about the struggle to get Enhertu in the UK. I really hate it for you all. Here in the US, we can thankfully get it but it is extremely expensive. I wish I could sponsor people that can’t get it to be able to come stay with me so you could get it. Many blessings to you and I will be praying that women in the EU will be able to get Enhertu. ❤️

kblioce | @kblioce | Nov 25, 2024

In reply to @colleenyoung "How are you doing with the new treatment?" + (show)

So far, so good. I know chemo is cumulative and the more you have the more side effects you can have. I took for 6 months 10 years ago without any side effects except for my hair falling out. Hopefully, I won’t have side effects this time either. Thank you for checking on me, @colleenyoung.

kblioce | @kblioce | Feb 12 8:52am

I am back with an update. As a refresher, I am Stage 4 triple positive breast cancer Mets bones. I went 10 years NED but was diagnosed in October with a recurrence to my bones. I had 4 treatments of Enhertu and then was scanned. The summary showed “dramatic interval improvement”. Many of my bony metastasis have completely resolved and those still present have improved. I have had some severe pain throughout my treatment. The oncologist cannot pinpoint why. Is anyone else experiencing muscle, bone and joint pain with Enhertu? I will gladly accept the pain if it takes me to NED. I pray those of you taking Enhertu are being healed and are filled with blessings!!

Chris, Volunteer Mentor | @auntieoakley | Feb 12 9:06am

In reply to @kblioce "I am back with an update. As a refresher, I am Stage 4 triple positive breast..." + (show)

I cannot tell you how happy I am to hear that you are getting so much benefit from this drug. The flip side is, I am so sorry you are having these side effects. I pray that you get the NED or even MRD within your treatment plan. You are definitely doing the hard things, and I am grateful that connect members like myself can benefit from the knowledge you give us. Thank you for sharing.
May I ask how many treatments you have left?

kblioce | @kblioce | Feb 12 10:30am

In reply to @auntieoakley "I cannot tell you how happy I am to hear that you are getting so much..." + (show)

I was told that I will be taking Enhertu as a maintenance drug once I am NED until it quits working or a die from something other than breast cancer. I think it will be at a lower dosage but that is a supposition on my part. If the pain eventually goes away, I really have no other side effects except for slight thinning of my hair and some anemia that has just become a side effect. That can be treated with iron infusions, thankfully. I appreciate your prayers!!

trinhttt | @trinhttt | Feb 13 9:00am

May I ask if you were also on any AI like anastrizole besides the Herceptin and Perjeta? I to have triple + and afraid of recurring bone Mets. I’m glad the Enhurtu is working for you.

kblioce | @kblioce | Feb 13 9:57am

Yes, I was taking and still do take Anastrazole (generic for Arimidex). I probably was confusing people when a said I was using Tamoxifen. I was just meaning a took hormone blockers (if that’s the correct terminology). I have taken this with Herceptin and Perjeta. I am also taking Anastrazole with the Enhertu now.

trinhttt | @trinhttt | Feb 14 9:08am

In reply to @kblioce "Yes, I was taking and still do take Anastrazole (generic for Arimidex). I probably was confusing..." + (show)

Thank you. I am glad you are the drug is working. better. May I ask, were you first diagnosed with Stage 4 with bone Mets and now it is coming back to different bone areas? Thanks