Enhertu

[Gypsypublisher]

Hi all. Wondering if anyone is using enhertu? And if so, your experience. I’m scheduled to start on August 21st. This will be my 6th treatment in 5 years and after 2 different oral chemo, my first infusion. Thank you.

[Adele_Julia]

I am ! Just had my 3rd infusion. So far - great results and minimal side effects. There is a fabulous Facebook group called Enhertu I strongly suggest you join !

[Gypsypublisher in reply to Adele_Julia]

Thank you for responding! I’m not a big fan of Facebook but I think I’ll need to join…

[Adele_Julia in reply to Gypsypublisher]

neither am I but I use it solely to join facebook groups for this wicked disease !

[Laskia]

Is this because you tested as being HER2 Low?

I was recently tested on liver biopsy and was HER2 +1. I think the oncologist said I would be eligible for Enhertu if it is licenced in the UK for HER2 Low.

I'm on my second line (Alpelasib) at the moment. What others have you been on? I didn't even know there were as many as six treatments!

[13plus in reply to Laskia]

How was the liver biopsy? ?My doc has been considering it but I'm not so sure about wanting to do it!

[Verbena1]

Hi, triple positive, I believe this was my 5th line of treatment. I did Enhertu for 5 months or so. The drug worked exceptionally well and shrunk the tumor down within a few weeks. It was miraculous in that way, especially because I was really suffering.

However for me personally, the side effects were severe for 10 days after each infusion. I had the worst nausea of my life and Odansetron didn’t help at all. The other nausea drugs made me feel dizzy or just really bad so I just opted out of them altogether.

Still, as far as effectiveness, it was a life saver and I was grateful to have it.

[Gypsypublisher in reply to Verbena1]

Thank you. I forgot to ask, what are you taking now?

[Verbena1 in reply to Gypsypublisher]

After the Enhertu stopped working, I was put on 2 chemo pills (Xeloda and Tukysa). I think these had the worst side effects of anything I’ve taken thus far. I had 30% of my normal energy and slept constantly. The diarrhea was nonstop.

I’m now about to go on a pill called Oserdu and also hoping to get Cryoblation for the tumor itself, which freezes and removes it safely in about an hour without damaging your other tissues and without deformity.

[Gypsypublisher in reply to Verbena1]

Oh my gosh! I’m wishing the best for both of us!

[Gypsypublisher]

thank you for sharing.

[Marmee8128]

I had my first infusion Aug 2nd. I had been on oral chemos (four types)-this was the first infusion chemo. I was very sleepy the day of and the next day. After 5 days I was wiped out and couldnt even take a shower and I felt wobbly (off balance) for a few days BUT it got a lot better as the days went on. For my experience so far (and I know it's only been one infusion) it is doable and I can be more 'normal'. I am fortunate that I am retired so I dont have to worry about working etc. Good Luck.

[Gypsypublisher in reply to Marmee8128]

Thank you. That sounds like me with the prior treatments. I will make sure I have things in order so I don’t have to worry about the first week. I wish you success!

[Widdershins3]

I loved Enhertu. By far the most effective chemo I've been on and (for me, at least) no loathsome side-effects. My CA-15 numbers just plummeted and I was well enough to get back to gardening, walking and doing artwork. I began to have hope for the first time in years.

Then came a really bad scan--I'd developed one of the most deadly serious side-effects called ground glass opacities in my lungs. My oncologist took me off Enhertu and switched me to Xeloda--my least favorite chemo drug so far--gobs of bad side-effects and no where near the efficacy of Enhertu. The hand&foot syndrome ended my walks and also my artwork. My numbers suck and I have the worst fatigue yet.

Enjoy your time on Enhertu--there's a reason why it earned a standing ovation at the conference where it was introduced. But do watch your lung scans carefully. Best of luck to you.

[13plus in reply to Widdershins3]

Ugh I am very sorry you got this unwanted side effect! And now the hand/foot syndrome with xeloda. I hope it works on the cancer though. Did you have any side effects at all to indicate there was an issue developing in your lungs?

[Widdershins3 in reply to 13plus]

Sorry, I didn't know I had a reply. No, I have a lot of cancer in my lungs and also asthma for 50 years, so occasional coughing is kind of normal for me and I was breathing OK. It was a scan that showed the cloudy "opacities" in both lungs. Cannot express how sad I am to have been switched to Xeloda.

[Gypsypublisher in reply to Widdershins3]

Thanks for sharing your experience. I continue to walk in hope. And I wish the best for you!

[Andersl]

Hi

I have had 2 cycles of Enhertu. My oncologist switched me to this as I relapsed in my liver, brain and lungs after nearly 2 years on Kadcyla.

In the first cycle I suffered abdomen and head pains on day 7.. I also felt very tired for a few days. It was manageable with paracetamoland bed rest.

In the second cycle the side effects started on day 4. Terrible taste in my mouth, nausea, diarrh and fatigue. I was in bed for a week then when I got up I was really weak for another week. I was prescribed different anti empties which helped with the nausea.

I'm due cycle 3 but as you can imagine, I'm very apprehensive.

I have to point out, however, that although I haven't been scanned yet (mri of head and body PET scan due end of August) I do feel as though the liver and lung mets may have gone/reduced in size as the symptoms have significantly reduced.

No apologies for leaving out the bad bits and saying it 'as it is'. This is my experience so far. Others may have very different story to tell.

I wish you all the best and look forward to hearing your experience.

Best wishes xx

[Gypsypublisher in reply to Andersl]

True experiences are important. Thanks for sharing. I hope things get better for you.

[Hopeful4Cure]

Just had 3rd cycle last Friday. Still no nausea, but 5ish days after, I am really tired or it is still the jetlag. No real other issues. Still hoping for a drop in tm's.

[Gypsypublisher]

Thank you. Fingers crossed this will be my experience as well. Have a beautiful day.