ENHERTU aka DS8401A
 

Good morning,
In October 2019, I applied to join a phase 1 clinical trial at UCLA of DS8401a w nivolumab for her2+ MBC (Enhertu/Opdivo). Clinical trials are arduous to join. There are so many hoops, so many scans, so much waiting and so many grey zones. Maybe that's another post. Anyhoooo, many scans later, along with 3 more brain mets that needed zapping before they'd accept me, I began treatment on 12/26/19.

The only reason I applied for this trial was for the DS8201A - I did not care about the Nivolumab. Literally the same day I was officially enrolled in the trial, the FDA announced approval of DS8401A, AKA ENHERTU. I felt like someone had run over me in their car. I right away asked for this, but it was not yet available--no one had it on their shelves, and any trial drug was assigned to a trial patient. So I had no choice but to go forward with the clinical trial. I had been washed out since OCTOBER and needed to get treatment or it would be too late.

Side effects have been very hard on me. I've never been easy with chemo, and the nausea was brutal and lasting 14+ days. Still, I went ahead on cycles 2 & 3 and then had the required scans at 6 weeks. The good news is I've had improvement, and my brain MRI was also very good. I could tell after the second cycle that a couple palpable nodes were melted gone. Also my markers had dropped. This is a very effective drug.

After a conversation with my son, who said “I love you mom and will support whatever you decide, but wtf is up with this trial drug - are you just supposed to be sick all the fucking time? QOL was your main goal mom. You should be out dancing" I realized I've got to do something that allows me SOME qol. I don't expect to have energy to dance, but I've got to be able to have a reasonable QOL. That's how I made the decision to go single agent, more flexibility, and more control, and back with my home team of nearly 13 years that I am MBC.

In my effort to take back my life, and get SOME QOL on this regime, I've decided to leave the trial, and return to my local oncologist and continue on single agent Enhertu. I can see from the Enhertu Facebook group that the single agent brings plenty of nausea, so I am not expecting dramatic results, but what I am expecting is small increments of being easier.

Without going in to a blow by blow, I've had to kick and scream for support meds, with everything having to be approved by the sponsor--meantime, they are all living their normal lives, I am at home under the covers, in bed, crying sick. Like having the stomach flu for two plus weeks every cycle.

Plans for this ENHERTU only cycle: I'm going to try VARUBI, a pill taken before treatment and supposed to last 21 days for anti-nausea. I will still have dex and Aloxi as premeds. AND I will stay on oral dexamethasone for several days post treatment to try to better manage nausea, and increase QOL.

The infusion itself is half hour for premeds, wait half hour and then 90 minutes for Enhertu. On the clinical trial, I had to stay the entire day; from 8 until 6 for final labs and wait on results. For my safety but what a long, exhausting day ending with an hour drive in rush hour. UGH.

My biggest cancer symptom is my right quad to the knee being very numb, feeling like it's asleep, bottom of my right foot, too. And right pelvis also numb although it's not constantly annoying to me like my leg/foot. The shooting pains, fire-ants feeling has resolved, and everyone is pretty sure the is a result of L1 which is filled with cancer and also has some tumor into my CNS at that level.

I still do not understand how LMD comes into play--the trial doctor had to really fight for my inclusion, it came down to an amplified MRI to show the LMD was contained to a certain interior level in my cord, and somehow that was deemed acceptable. So far, no doctor has been able to explain the LMD (leptomeningeal disease) in a way that I can grasp. Last June I was told 6 mos. Now I've realized that no doctor really knows what they are talking about, I'm not presenting with typical LMD, don't know what's going on anymore and it's unnerving. And quite frankly very weird. The trial doc thinks I'm nuts for leaving a combo that is working, but she gets to go home every night and be a mom and wife and I stay in every night FEELING NAUSEOUS, WEAK and SICK.

So I am taking back my life, and surely don't want to waste what is left of it so wiped by chemo all the time. I'm back in day by day and most days moment by moment. There are others on this ENHERTU regime who've been on for over a year, one woman for nearly 2 years. And now a handful of us just getting started.

I am reminded of my mom's words while growing up, "Flori, don't write the ending". Hope everyone reading this is doing well, or as I like to say, "good enough". Sending much love,
Flori

Re: ENHERTU aka DS8401A
 

Flori

Glad to hear the good part of the news. Im going by memory but Im pretty sure Varubi works like Emend (Aprepitant) on the Substance P/Neurokinin receptors and may well offer anti-nausea relief beyond Aloxi, that works on Serotonin receptors.

For my own curiosity Ill see what Enhertu is. The Her part of Enhertu makes me think it is a Herceptin like drug. Will find out. Good luck with the treatment.

Paul

Re: ENHERTU aka DS8401A
 

Flori,

You've been on my mind a lot lately so I'm glad to get this update from you.

It sounds like you have a great support system with you son and it sounds like you're being your best advocate, which is all good. And I'm also glad you're not writing the ending. :)

These are all positive things in not the most positive situation. I hope the drugs continue to melt away the cancer spots and that your quality of life improves dramatically.

Thinking only good thoughts and sending the best of vibes your way. Please keep us posted as you can.

Hugs
L

Re: ENHERTU aka DS8401A
 

Hi Flori,
I'm new on the MBC her2+ path, since november last year, and still working my first line of treatment since re-staging. Just wanted to say that enhertu was specifically mentioned by my oncologist as something really hopeful during my last visit.
He referred to a recent (december 2019) publication in the New England Journal of Medicine "Trastuzumab Deruxtecan in Previously Treated HER2-Positive Breast Cancer" by Modi et al.
I really hope it works well for you!
greetings, smim

Re: ENHERTU aka DS8401A
 

Oh Flori,
So glad you checked in. We have all been thinking and worrying about you!
You are such an amazing woman! My Onc tells me Enhertu will be my next chemo too. I wonder if it is easier on the platelets than Kadcyla, as that has been my main issue.

Sending you BIG Hugs!
Kim

Re: ENHERTU aka DS8401A
 

Glad to hear your news, Flori - sounds as if you have been doing it tough, so I hope the new regime gives better QOL.
Best wishes.... Pam

Re: ENHERTU aka DS8401A
 

So glad to hear from you, Flori! Your strength continues to amaze me and I hope the new regimen(s) provide you with a better qol. You rock!

Janis

Re: ENHERTU aka DS8401A
 

Flori, it's so good to hear from you. It sounds like you've been to hell and are heading back now. I hope it gets easier for you and QOL improves. I love your mother's wisdom. Thank you for sharing your experience.....it will help many here.
Love Marie

Re: ENHERTU aka DS8401A
 

So great to hear from you. You are amazing! Thank you for sharing your journey. Wishing you strength, fight and improved QOL! All the best-

Re: ENHERTU aka DS8401A
 

I can't believe these crazy times...hope everyone is staying safe, germ free, and social distancing. It 'aint easy, with the run on food and toilet paper, people seem to have lost their minds.

Anyhoo...thought I would jump on here and say I had very good scans this past week--probably the best I've ever had in 12 years.

Several areas are noted as RESOLVED. You could have knocked me down with a feather, I was not expecting such good results.

ENHERTU is delivering as promised by clinical trial results. And, the single agent was much easier for me to handle.

Stay healthy everyone - stay isolated and wash wash wash your hands. XX

Re: ENHERTU aka DS8401A
 

That's amazing Flori! I'm so glad to hear it and glad you shared it.

All the best to you!

Re: ENHERTU aka DS8401A
 

Great news!

Re: ENHERTU aka DS8401A
 

This is fantastic news! I admire the way you weigh all your options each time and continue the fight. Wishing you "resolved" status all the way to NED!

Re: ENHERTU aka DS8401A
 

Wonderful news, Flori!
So happy for you!


all the best
caya

Re: ENHERTU aka DS8401A
 

Flori, that is wonderful news. This gives so many of us hope that these new drugs are going to be effective for a lot of us.
Marie

Re: ENHERTU aka DS8401A
 

Great news!!! Thanks for the update.

Re: ENHERTU aka DS8401A
 

Flori,
Was thinking about you and everyone on this site and found this.
So very happy for you!!
- love ya, Melissa

Re: ENHERTU aka DS8401A
 

Yes! Yes! Yes!

Re: ENHERTU aka DS8401A
 

Hey Flori-girl!


I had posted a response when you first posted, but I see it is not here. Not sure what I did wrongly. Too bad you missed my stellar, witty and wise words! HA!

I will try again and just say how elated I am to hear of your great response! You needed a break, my friend. Much deserved! Please keep us posted of the effects, both good and bad, of this new and promising drug. Thank God for all the brilliant researchers who continue to bring us drugs to battle this beast. Hopefully, they will shine now to eradicate this Corona beastie.

Thanks for popping on and letting us know how you are doing.

Re: ENHERTU aka DS8401A
 

Coming in on this a bit behind the good news, but this is JUST what I needed! So happy that the pain and suffering is worth the results. You just lucked out to get this new drug and blaze a new path for so many of us who will need this drug at some point.

I recall our dear founder Joe saying that after Herceptin the game would be staying alive and stepping from one new drug or trial to the next as long as we could. You keep rounding third, and trodding a long path after that.

It is not an easy life, but here you are, watching people die of something we never even imagined! Maybe you can make up a dance called "Do the Hunker Down"?