Enhertu A tough drug!

Hi Popit,  

I'm so delighted to see how well enhertu has worked for you. 

I hope you don't mind me contacting you but I'm needing to move onto another (4th) treatment ASAP and that looks like it might be eribulin but it was suggested I ask my oncologist about enhertu. 

I am lobular so I have numerous mets in the liver and a couple in the bones more recently. Lobular has a bad habit of weaving it's way through things.  Are you lobular by any chance? 

Wishing you continued success on your journey.  

Hello HopeSprings,

I’ve had 9 rounds of Enhertu and the next one is due on Friday April 12th, I’ll be on this treatment until it stops working.  I agree with you about the side effects, my legs are so weak that I can’t enjoy walking as I used to but my last scan showed that the cancer had stabilised so Enhertu does seem to be an effective treatment.

It would be great to chat about how we are feeling.

Best wishes

Hazel

Hiya Hopesprings, I am to start on Enhertu 16/05/2024 after Kadcyla but unfortunately my her2 positive breast cancer spread to brain after just 2 cycles. I recieved gammaknife radiation to treat tumor and agree side effects look daunting but enhertu can get through the blood brain barrier so I feel right option. I will let you know if I find any good fixes to side effects. Take care Sarah x

Hi Sylvia,

I am brand new to Enhertu, and I am suffering all of the side effects. I’ve only received one round of treatment but I don’t know if I can stay on it forever. 

it’s been a few months since you’ve posted so I hope things have gotten better for you. 

if you’re still interested in connecting and talking through all things Enhertu, I’m here. 

best, 

jeniene. 

Hi, Jeniene,

I am sorry to hear that you are struggling with all of the side effects. I had my first cycle three week ago, it was rough!! It took me about 9 days to start to do anything productive, I was so wiped out. I have just had my cycle 2 on a lower dose, and so far I feel better so far.  The nausea is not as bad but too early to say on the fatigue and aching.  It may be worth asking to reduce your dose?  I did 123 cycles of Kadcyla/TDM1 and many many other chemo prior to that, but I have never felt so exhausted as I did on Enhertu.  I heard it was tough but it was beyond what I expected and I;ve been doing this for over 23 years. I know its not easy and it can be very lonely, I wish I could say it has gotten easier, but chemo is still a tough road. Nevetheless I'm still going. I was in my mid thirties when I was DX stage 2 Her2 positive Breast Cancer, I hope to celebrate my 60th next year.  Try to focus on each day, and not the road ahead, find things you can enjoy which does not drain you physically/mentally/emotionally.  I love listening to music, it really lifts my mood and takes me to a happy place.  Best wishes, Cath

Catch,

Thanks so much for your swift response. 

I too have been in a long BC journey. I was first DX in 2010 with Stsge 3 HER2-, did a ton of chemo, radiation, and ultimately a bilateral mastectomy. This secondary DX came in 2019. Ibrance and Letrozole, Verzenio, and Xeloda all worked for a while, but now we’re at the Enhertu stage. 

I'm hoping the symptoms are ultimately manageable so I.can get back to some semblance of a normal existence. Music is always good for the soul, so thanks for the recommendation.

So glad to hear about your 23 years. You are an inspiration! 

J. 

Hello HopeSprings and all on this particular journey, I am starting Enhertu after all the other chemos stopped working (have been on them for 3 years now). I now have mets in my brain, bones, pleura and peritoneal. I thought that Enhertu was gentler than the other chemos, so I am sorely disappointed reading your experience.  We don't have a choice anyway, but it's tough.  I'd like to keep in touch too. Warmest wishes to all.

Hi Veronique,

Sorry to hear that your cancer has spread, that must have been scary for you. The stories about Enhertu are dauting but the results are positive for many people. So its good that there is another drug available to try. BTW there's a good support group on Facebook for Enhertu patients.  There are some good tips and advice on dealing the side effects.  Best wishes all. Cath

Thank you. I'll look for the FB group. I have so many questions. Wasrmest

What a beautiful post! You are amazing to to keep finding the will and strength to keep going. I have too, but only over my last three years of chemo (and 25 years ago during my first cancer treatment), and now I am feeling so sick that I am wondering if it's worth it...