ZW25 clinical trial - day one
 

FINALLY started the ZW25 trial on Monday. The only curve ball was a 10mg oral dose of decadron aka dexamethasone. I had a rough time managing the panic anxiety that so much steroid causes me. Just kept ativan-ing until I felt okay and had to continue on .25 mg Ativan about every 2-3 hours round the clock.

Yesterday I had a red hot face in the morning, typical for me and steroids. Was still very jittery. More Ativan. And took Zyrtec and some Advil and got thru the day.

Today I feel mostly normal. For sure more fatigue - hard to parse out coming down from steroids and poor sleep from side effects. Will figure out over time.

So far I am greatly relieved to be back on treatment and of course hoping this will work to control/kill Mbc cells and give me back my horizon.

Meantime, I am grateful for the support from everyone here - it means so much to me. Fingers crossed, xxxxxxxxxx...
Much love,
Flori

Re: ZW25 clinical trial - day one
 

10mg of Decadron is a lot of steroid. It doesnt sound like much but Decadron is potent. Since 0.75mg of Decadron (Dexamethasone) =5mg Prednisone, 10mg Dexamethasone = about 66mg, almost 70mg of Prednisone

Paul

Re: ZW25 clinical trial - day one
 

May you get your horizon back! Glad it was manageable. Steroids are wicked. Please keep us posted!

Re: ZW25 clinical trial - day one
 

Good to hear treatment has started at long last!

Hope your feeling better today.

Juls

Re: ZW25 clinical trial - day one
 

So glad your treatment started! Hope you're feeling better today.


Thanks so much for posting, I know we've all been thinking about you!


Carol Ann

Re: ZW25 clinical trial - day one
 

Hope this trial works well for you! Can understand the anxiety and distaste for steroids - I used to go so red, my oncologist always knew that I had been taking them as instructed. My husband christened me "tomato face". Never could sleep either. But they help ease the impact of all the other crap we have to take....
Best wishes..... Pam

Re: ZW25 clinical trial - day one
 

Keeping my fingers and toes crossed that all goes well!

Re: ZW25 clinical trial - day one
 

I'm thinking about you and I hope you have a great experience on this drug

Re: ZW25 clinical trial - day one
 

Go Flori! Thank goodness you understand all these drugs and can adjust appropriately. May things get better soon! Sending lots of good vibes.

Re: ZW25 clinical trial - day one
 

Flori;

I sure hope any se's are manageable and easier than chemo. Thinking of you and hoping each day gets better as your tumour load declines. Virtual hugs.

Cathy

Re: ZW25 clinical trial - day one
 

Glad you got started and hoping for new horizons! Thinking of you.

Re: ZW25 clinical trial - day one
 

Sorry you need that Dreaded Decadron! I can barely sleep when on that stuff. So your fatigue factor is not surprising.

But on the glass half full side - HOORAY for starting the trial at long last. Get out your binoculars and look for that horizon. It is out there for you.

Take those lovely dogs for a good walk and let the fresh air clear your head.

Re: ZW25 clinical trial - day one
 

How often will you get treatments?

Glad it wasn't any worse than it was and I hope it only improves in time while it kicks the cancer's butt!

Let us know how you're doing when you're up to it.

Re: ZW25 clinical trial - day one
 

Thinking of you, Flori. Hoping you are doing ok and this new protocol is very tolerable and crazy effective!

Re: ZW25 clinical trial - day one
 

Always saying prayers for you ladies. And yes may you get your horizon back

Re: ZW25 clinical trial - day one
 

ZW25 round two was not so good, longggg story short, they waited too long to treat me, over 3 hours after having me take premeds, so 10 minutes in I had an infusion reaction and had to stop drip. I'm scheduled for round #3 on Monday. The plan is to give me IV decadron, 10 mg, plus IV benedryl 25 mg, plus I'll take at least 1 mg Ativan. I can't even begin to think ahead to sustaining this kind of regime. BUT for now, will try to see if I can get thru the infusion with these aggressive premeds. I will also have a Dr. in my room, so it won't be the keystone cops routine revisited if I DO have a reaction. Yes, I'm incredibly anxious. But I'd like to give this medicine a chance to knock down some mets. It's gonna be a tough week, treatment on Monday, spect mri brain scan on Tuesday to follow up flair signal, meet with brain surgeon on Wednesday.

Living in the present moment, where things are mostly A-okay. Love to all....Flori

Re: ZW25 clinical trial - day one
 

Flori;

So sorry to hear about the sessions. It is a tough ask. When will you know if they are effective and how so? Also, I assume you don't stay on them indefinitely (like I am the Ibrance/Letrozole) so what happens next? Take care and I hope the se's from the treatment itself is not too bad. This MBC is really a bugger.

Thinking of you,

Cathy

Re: ZW25 clinical trial - day one
 

Flori,

Hope round 3 goes well.
Thinking of you.
Juls

Re: ZW25 clinical trial - day one
 

Hoping #3 goes better and glad you'll have a doc in the room ... praying this works for you!! I think of you every day. <3<3<3


Carol Ann

Re: ZW25 clinical trial - day one
 

Well, Flori, you know how to create a buzz! I can imagine the whirlwind of activity around you in that infusion room, especially because you are in a trial. Keystone Cops! Great mental picture!

I do hope that with subsequent infusions there is some acclimation to the med and you will not require all the heavy 'roids to tamp the reaction. I like your ability to mentally deal with the present and not look too far ahead. Things do change and while multiple rounds of whatever med constitutes ZW25 may look daunting currently, tolerances can occur and you may find it easier. I sure hope and pray so anyway!

You are brave, Flori-girl. I want you to kick that cancer shit back to hell where it came from. May ZW25 help you do just that!

Re: ZW25 clinical trial - day one
 

Hang in there, Flori! Hope the new drug will make your horizon shine bright before you. Sending hugs for the hard moments. Use as needed.

Re: ZW25 clinical trial - day one
 

How ya doing, Flori? Thinking of you.

Re: ZW25 clinical trial - day one
 

Praying for you Flori!

Re: ZW25 clinical trial - day one
 

Hi Flori,

Thinking of you!

Juls

Re: ZW25 clinical trial - day one
 

Hello lovely her2 people, just me on a check in - doing A Okay. Last cycle I managed more aggressively my diarrhea and it seemed to work as far as not being dehydrated. Still don't understand why even half of an Imodium puts me into snoozeville but at least it was a more successful first week. Energy is pretty flat. Skin very dry. And hair is thinning and I don't have enough to spare. Trying to stay very present and just keep going. Scan to see if it's working is on 10/23...

Next round is Tuesday. Hoping for a shorter infusion day, sent them a reasonable timeline (can you even imagine??!!!) and asked for adherence. HA! But seriously, I have a 4 hour block that has to happen, between premeds and the drip. So IMO, no need to add another 3 hours of screwing around and waiting for the pharmacy to choose my order. Hopefully they will get things moving. Being in that dismal room takes its toll. #lostMYgratitude #badAttitude #cancerMODE #sorrynotsorry

Re: ZW25 clinical trial - day one
 

Bless your heart Flori.

I hope all goes well Tuesday and that the scan on the 23rd shows it's working!

As for the delay time for treatment, that's nuts. Back when I was getting treatment it was bad (not as bad as what you described but not good either) and I asked why one time and they said that because of the expense of the drug (herceptin) they wanted to be sure your butt was in the chair before they pulled the drugs. I started bringing it up when I checked in and then again when I was called back and they were administering the "prep" drugs. It seemed to work at times, other times not so much.

Re: ZW25 clinical trial - day one
 

Good to hear from you Flori! Hoping Tuesday goes smoothly for you.
Big hugs, Marie

Re: ZW25 clinical trial - day one
 

Glad to hear from your Flori! I know you are gutting this out and trying to be a patient patient, but really, just how patient can you be? The 23rd is just 10 days away! Will be praying for a great outcome! Hang tough (I know you will) and keep staying in the today. Tomorrow will take care of itself. I am inspired by your thinking, Flori, and trying to apply it in my own life. Good luck on the next round this week. Hope it is shockingly punctual!

Re: ZW25 clinical trial - day one
 

Thank you so much for the update. I have so much hope for this drug for all of us!

Re: ZW25 clinical trial - day one
 

Your sense of humor is awesome....sarcasm at times but ya have to do what ever it takes to get through all the crap. You are an inspiration. Sending strength and hugs your way!!

Re: ZW25 clinical trial - day one
 

Cathy, Laurel, Lucy, Steph, Sassy, Carol Ann, Juls, Lien, Jra, Marie, Donna, Emily Rebecca----and anyone else following along---
MY MARKERS WENT DOWN! A BUNCH.
I'm super encouraged by this bit of good news from my blood work today. Was in a funk, wanting to disappear and then decided to call them to make sure I was a go for tomorrow, no use wasting my resentment.
Tomorrow is cycle #4.
Holding on to this bit of good ju ju for now.
Fingers crossed.

Re: ZW25 clinical trial - day one
 

Yay Flori!!!! That's the best news - big smile on my face right now!!

Re: ZW25 clinical trial - day one
 

Great news Flori!

Good luck for tomorrow.

Juls

Re: ZW25 clinical trial - day one
 

So happy for you Flori!!!! :)

Thinking of you today as you get your next treatment.

Re: ZW25 clinical trial - day one
 

Flori,

I read your post at 4am this morning as was thrilled. It took me forever to get back to sleep! This is wonderful news. I will keep holding my breath and praying until the scan in a few days! Hope they hold to your "reasonable schedule" today and all goes smoothly! Doing the happy dance for you, my friend! Thanks for checking in with such cheerful news!

Re: ZW25 clinical trial - day one
 

YAY!!!!!!! You just made my day, Flori, so happy for you!!


Carol Ann

Re: ZW25 clinical trial - day one
 

F'lori;

Wonderful news!!!! This will make your scans very exciting. So happy for you. We'll share our scan results next week and party together. Yes! Hope you're feeling ok after the treatment. Mine are pills so much easier. What is the protocol for ZW25? I'm on these until I have progression.....which we're hoping is years. Do you get these infusions every two weeks for the same?

Cathy

Re: ZW25 clinical trial - day one
 

Wonderful news! So happy to hear the trial is working for you!

Re: ZW25 clinical trial - day one
 

Tumor numbers, etc. dropping "a bunch" bodes well for a scan that also shows improvement. I just know your horizon is getting farther out with each treatment.

Sending all good thoughts and positive energy that your body will keep accepting this new treatment.

Re: ZW25 clinical trial - day one
 

Oh yes, yes, YES!!