[SoCalGal]

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