Hello lovely warriors! I hope this update finds you all doing well. I spent most of last week in the ICU with septic shock that no one can tell me where it derived from. The standard answer is “your cancer”. We had just returned from City of Hope the week before with progression news in my bones (Praise the Lord nowhere else) from the PET scan and my onc wanted me to start Enhertu ASAP. But, the hospital stay interrupted that and I had to wait until today for my first infusion. I had my education, did some Dr. Googling and had to stop, so I’m looking for some true insight from those with experience or knowledge of Enhertu. I appreciate your insight more than you can imagine.
Know I pray for you all every day! 🙏🏻❤️
Written by
Saltandlight
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I have been on Enhertu for 18 months staying STABLE.No progression in liver or bones.The only bad days are days 4-7 after the pre-mrds wear off.Then it's nausea and chronic fatigue for me.The drug is strong and I did lose part of my hair but it is growing back.I have had fewer side-effects than with all my prior treatments.
Wow such a long run on Enhertu!! What is your hormone drive? Are you her2low ? My mom is er/pr positive her2low. My mom has been on enhertu for 7 months. Her tumor markers have went from the 600s down to 79.
I think I am HR+ER -.My tumor markers began in 2016 at 1500 which told them I had BreastCancer.It metastisized to bone and liver 2018. I have been on about 7 different treatments.The Enhertu being started in Sept 2024.My tumor markers are now in the low 300 's but have been as low as 150's at different times and have remained stable .There has been no progression in my bones ,breast or liver while on Enhertu.Also the only major side effects were hair thinning and severe fatigue.With all the other treatments I had much worse side effects.
My nephew is an oncologist and he recommended Enhertu.I cannot see him because his practice is in Kentucky but my Moffitt oncologist okayed the Enhertu .
- hair frizzy and a bit less dense though as it's all over it's not that noticeable
- steroids given before treatment plus the glucose drip given with the treatment makes it difficult to manage my blood glucose levels but that's because of another condition I have 'reactive hypoglycaemia '. If you have diabetes be careful to watch for spikes and dips in your blood glucose levels and take preventative measures.
- no progression in the body but I have had 2 recurrence in the brain. They were successfully treated with Gamma radiotherapy so I continue with Enhertu.
- the side effects come on, on day 3. Fatigue and nausea. The latter helped by stopping drinking tea or having dairy products. Initially this was just a few days but as the toxins accumulate over time the side effects have got worse and last longer.
- I used to have the treatment every 3 weeks. To help with the side effects it's now four weeks.. I've had 2 dose reductions to help too.
In summary, it hasn't worked well enough to control the brain mets but Gamma has been very successful in the brain. I was previously on Kadcyla and found that much easier to manage.
Everyone will no doubt have a different experience. To reach the brain the treatment has to cross the blood brain barrier. As its in your bones in your body I would assume it will be successful in treating bone mets.
Thank you-this does help. I’m sorry to hear it didn’t help with your brain mets but glad Gamma did.
I’m not diabetic but did have bad sugar spikes on Piqray so I’ll probably have to start doing the glucose monitor I imagine. Also glad to hear about your hair. Mine is just coming back after losing it all on Trodelvy and I realized I quite like having my head stay warm so hopefully I’ll just experience thinning.
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