Anyone starting brand drug, Enhertu?

I think extrapolate was actually meant as "elaborate."

I agree chocomousse about HER2 status. Enhertu seems extremely effective against those people who strongly express HER2. I'm just skeptical about the drug company's claims about HER2 low.

@chocomousse Nice news! I have had CtDNA tests for a while now. After my 15th infusion of Enhertu, the results are almost zero. They spiked big time when Truquap failed. These tests are still experimental and they can cost a ton unless your onc (like mine) can get them paid for by Signatera. I am not having issues on the full dose and I am no longer on any supporting meds except for the two hypos of anti-nauseals. I'm going to keep on this plan. New scans in a few weeks. I hope to be a good responder like you. I really don't mind going in for chemo every three weeks. As long as it works!

May have spoken too soon. My 2/2 lab work shows that my CEA went from 2.2 to 2.3 and my CA27-29 went from 27.3 to 30. Also, a 3.2 mg dose of Enhertu every 3 weeks is essentially the same as 4.4 mg dose of Enhertu every 4 weeks. Hoping that the tumor marker fluctuations are just noise or debris dumping given my scan results.

Hello,

I was diagnosed stage IV de novo in October, breast and mediastinal lymph nodes (possibility of lung as well but nodules were too small to biopsy) ER 20%, PR 40% Her2 negative in breast but low positive (+1) in metastasis and high Ki67 80-90%. No gene mutations. At 42, with no family history and doing regular checks, this was the last thing on my mind. There have been a lot of tears but my wonderful husband and our 8yo son keep me going.
Started targeted therapy in November with Kisqali and hormone suppressants but had to pause due to elevated liver enzymes. In the meantime progression was shown in my restaging ct scan so my onco team decided to switch me to iv Enhertu once every 3 weeks. They also suggest stopping the hormone suppressants as they don’t really improve anything.

If anyone can share their experience and advice it’d be greatly appreciated. Wishing everyone a lot of strength and success in their journey!

Elena

Hey @onlywhenitrains !

Thanks for welcoming me and the signature tips 😉
Losing my first line of treatment that fast was a bummer, for sure, but we couldn’t risk permanent damage to my liver. Additionally, the ribociclib/hormone therapy wasn’t enough.. Definitely not the news I hoped for but I’ll do anything to stay ahead of this beast.
My first infusion is scheduled in 10 days, thankfully I already had a port inserted back in October when we still thought I was stage II. We just need to wait a bit cause I’m weaning off the steroids. I’ve never had any chemo so I don’t really know what to expect. Thank you for sharing your experience with me!
Elena

@mbilhae.148 I am going to get my 17th treatment on Thursday. I have not had serious side effects while on Enhertu aside from cataracts from the supporting steroids. Got my eyes fixed and my slightly sluggish digestive issues and bouts of fatigue are in the rearview mirror. But since I'm not HER +, perhaps my positive response won't be long-lasting? I'm definitely more nervous scan to scan than I was when I was on Ibrance, but from what I can tell, Enhertu is the next best thing for me. Not Ibrance 2.0, but as close as I can get. Not sure if I'm typical. All the best to you.

@mbilhae What Enhertu dose are you on now? My first 4 doses were at 5.4 mg which was then reduced to 4.4 mg due to the debilitating side effects/extreme weight loss. I started Enhertu & Perjeta in June and by September, the lymphadenopathy and 1 out of 2 lung tumors had cleared. By Jan. my CT scan showed complete clearance of the adrenal gland tumor and the 2nd lung tumor although we're not 100% sure if it's scar tissue or tumor. If I had been given a PET scan instead of a CT, we would know definitively. So, I achieved a complete response while on the reduced Enhertu dose but I'm also on Perjeta.

I'm on E/P every 4 weeks instead of every 3 weeks now and am still awaiting the results of my Signatera test, which have been delayed. And because of a coverage lapse, they want to push out my next infusion to 5 weeks which is scaring me.

Hi all!

I found this fantastic site years ago when I was going through breast cancer the first time in 2000. I was age 33, stage 2A. I did all the things, was NEAD until re-dx in October 2012 - mets to lungs and bones (all thru spine, hips, pelvis, etc.) at 46 years old. I've been on oral chemo and or hormone therapy all this time, with a pretty good quality of life physically. I have never quit working. Not the first time, and not last 13.5 years. Last year, my bad back (which predates any cancer) flared up with such unbelievable pain it was terrifying. I begged for pain meds from Onc - that went NOWHERE, and she referred me out to Ortho and Pain doc. Ok - cool.

Ortho does MRI and says - wow. Your lumbar spine is so eaten away and actively crumbling, that the rest of your spine in literally collapsing into your lumbar spine. Welp! Like - all the CTs didn't show this. Eye roll. Plus extra fractures other than the obvious as well. I scheduled spinal fusion surgery with him last July. After the recovery, I felt ZERO pain. None. Then…long story short - 5 x 5 centimeter round tumor at L5 pushing into the spinal canal. Hospitalized on Xmas for pain control, got better, and for 3 weeks now I currently have left foot drop, cannot walk properly blah blah.

So - was told a bunch last Thursday as to my new plan:

10 rads starting next Tuesday on the tumor.

Getting a port - I've never had one. (Yes really)

Getting Echo for heart tomorrow along

Abdominal MRI to rule in/out tiny liver mets

If they see them on mri - Liver biopsy

Enhertu Cycle 1, March 13.

Work - have asked for accommodation for now - planning STD giving all your stories. Just can't deal with one more thing at the moment. Also had to out myself at work.

I feel like I went from 0-60 in these last 3 weeks.

Thanks for listening…

LL

@lizlemon2 The Enhertu should clear up everything. It really is a miracle drug. Are you HER2+?

@onlywhenitrains Have you had a Signatera?

@elena_p From what I can tell from personal experience and reading the posts on this thread, it gets better. You sound like you are very strong. Walking to an appointment after all you had been through! For the next round, maybe stock up on foods that you like so that you can get to the kitchen for a small easy snack when the fatigue takes you down. I like cottage cheese and pineapple, peanut butter and jelly on English muffins and yogurt and granola. Salami and cheese. Ice cream. Cold pizza. I've listened to nutritionists talking to patients next to me while I've gotten infusions. Often, they say, "Just freaking eat!" Of course, keep water next to you at all times.

@elenap Eat some sour candy! I try not to eat processed foods, but when I get an infusion, I treat myself to bag of Lay's potato chips. Provided by the hospital. Bread and cheese? If that's what you need, I wouldn't sweat it. I hope you are well enough for your next infusion and the side effects are not as severe as you had after your first.