Re: ZW25 clinical trial - day one
 

Ditto what Lucy said, Flori! Thinking about you.

Re: ZW25 clinical trial - day one
 

Had CT scan today. Went online to see my results - I am stable. And I cannot believe how sad I feel.

It’s been a hell of a two weeks with the trial doc ignoring my emails until I had to email the sponsor.

USC is not providing quality care—I am knocked out and do not feel safe with a nurse who never returns to check on me. A friend sat with me, and even when I was feeling nausea and anxiety, call the nurse, ask for more Ativan, express to her I'm not feeling well, don't know if it's the beginning of a reaction or "just" the decadron, she gives me a shot of Ativan and leaves the room! Never takes my vitals or pops back in to see if I'm okay.

So I voice my concern to the dr. via an email which he ignores. Then I send a polite reminder/hey have you had a chance to review my email and what are your thoughts? Which he ignores so today, after the sponsor contacted him he finally replied. So that is what I have as my support and it is SHITTY and not okay and NOT ENOUGH! Shame on them. I am so disappointed with USC Norris and feel so disheartened that I have to remain in their “care”.

Today I asked for a blood draw saying that I am not feeling well, extreme fatigue over the weekend, etc. It took me (6) email back and forth to get the coordinator to get orders for a frickin' blood draw. I wanted my ferritin reserves checked, too but the doctor said no, no reason. So I had to send a lengthy email from home woman-splaining to his mansplaining my history with low iron reserves. Of course, no response to my email - he is evidently passive-aggressive in addition to short and insecure. And he has no idea what it's like to be a patient.

SO---meantime, I'm supposed to go in tomorrow for ZW#8 and *hello* people, I still don't feel good. If this was anything but a trial I would skip a couple weeks and get my feet back under me. There is no wiggle room for that, so I am considering dropping off. My QOL has been really poor on this drug.

sorry for the extreme rant. I should feel more gratitude but I don't. I am just feeling so done.

Re: ZW25 clinical trial - day one
 

Stable is normally a good thing, but you have suffered a lot just to maintain. So disheartened right along with you at the lack of response - for a TRIAL for heavens sake! Any trial is supposed to keep close tabs on every patient and document symptoms!!!!!

The way this sounds, they deserve to get their trials pulled if the sponsor is on their job.

If you pull out of this, do you have a back up? Sending lots of positivity that tomorrow will turn out ok, and you will have the treatment that should be protocol.

Re: ZW25 clinical trial - day one
 

Thank you Steph. And lovely Laurel sorry to take so long to show up. Xoxo

Re: ZW25 clinical trial - day one
 

Flori, my friend, I am glad to hear from you even though you sound frustrated and down. As Steph said, stable is remarkable and would bring a celebration were you not suffering such exhausting side effects. Feeling lousy begets overwhelming discouragement and even despair. A lack of a good quality of life makes living hard and depression seeps in. I have nothing to offer but my sympathy, Flori


I will pray today's infusion goes well. As a suggestion to get what you need out of the staff, do not hesitate to be vulnerable. Let them know you are afraid and that their face popping in, however brief, to check on you is comforting.

Re: ZW25 clinical trial - day one
 

I'm sorry things aren't going any better than they are but agree that stable isn't a bad thing. I hope today was better though.

Re: ZW25 clinical trial - day one
 

Wondering about you, Flori. How did the last infusion go? Have you shortened that already short and passive aggressive doc of yours any further (as in does he still have his head???). LOL.

Seriously, I hope it went better this go-round and that #8 was your magic number to get through to where your body acclimates somewhat to the drug permitting your QOL to improve a bit. I am curious to know when they will scan again to assess the effectiveness? Of course, I am assuming you have stayed the course and are still in the trial. I remember that you said you were considering dropping out due to the crappy QOL on the drug. No one would blame you there, Flori, but I hope you hung in. We all will support you no matter what you have decided. I am hoping to hear from you soon and will continue to hope and pray for good news.


L.

Re: ZW25 clinical trial - day one
 

Hi Flori,
Just checking how you are doing. Drop us a line if and when you feel like it.

Love
Jacqueline

Re: ZW25 clinical trial - day one
 

Ditto Flori.... hope things are improving - thinking of you!..... Pam

Re: ZW25 clinical trial - day one
 

Happy 2019 and thanks for checking on me! <3 I was very swept away by family and visiting cousins and holiday madness and I allowed myself to not think about cancer for a couple weeks...
NOW--catch up: they let me skip two plus weeks ago, because I let them think it was their idea. Saw the trio team today, aka 2 docs and a coordinator. Sat through a lengthy mansplaining session on why I shouldn't get a PETscan, to which I simply replied, "I disagree". Then I 'splained a few things to them about MBC cancer, and how I need to know if my bone mets are improving because CT scan doesn't show anything helpful regarding bone mets and activity. Then more mansplaining to reassure me about how good CT is at finding new bone mets, then my turn: "I'm not expecting new mets, but I want to know what the OLD ONES ARE DOING". Small victories, they agreed to a pet CT in Feb.
Next came a lot of discussion on how there is no data on using Ritalin for CRF (chemo related fatigue) and then my turn, "well two leading docs say there is data, and I've been trying a low dose for a couple weeks, and data or not-a, it's helping me get off the couch and get back QOL! So, tomorrow is ZW25 #8 and we'll see if their nurses wake up or if I have to rattle more cages. So far, notified sponsors, will meet with head of nursing prior to treatment tomorrow, filed a complaint with some patient experience person and am not going down without change in the positive. And one last story...waiting outside today for my car at NORRIS CANCER CENTER. An idiot man is SMOKING a cig, right there, under the sign and standing next to the "no smoking" sign. So I say, excuse me - no smoking here and I give the "no-no" finger wag along with the eyebrows raised to max height---lol, one of my personal favorites. To his credit, he says I'm sorry and puts it out. Two other idiot men turn to me, one with a germ mask, and another looking pretty dead, and say "thank you so much" that smoke was awful. WHY DIDN'T EITHER OF THOSE IDIOTS ASK THE GUY TO PUT THE CIG OUT????? (I know I seem angry and like a man-hater, but I am not. Ask any of my dance partners, there are plenty). So I say to the two sick dudes, do you see why we need a woman president?!!!! Women are fierce. I hope they both live long enough to vote!

Re: ZW25 clinical trial - day one
 

I absolutely love you fierce determination! You are an inspiration!

Re: ZW25 clinical trial - day one
 

Ditto what Donna said. WOW .... you put them in their place! Well done!


Carol Ann

Re: ZW25 clinical trial - day one
 

Hey, Flori! You sound like Flori again!!! Hurrah for Ritalin! Good luck with #8. You failed in your most excellent story telling, which I always thoroughly enjoy, in relating just HOW you made that team think it was THEIR idea to delay your 8th infusion. Inquiring minds want to know! I am sure it will be good for a laugh! Happy you had a great holiday season. Here's to hopin' this is an amazing year for you, my friend. Will look forward to hearing about your PET scan results in February.

Re: ZW25 clinical trial - day one
 

Flori, Flori, morning Glory is back and kickin' ass!

Re: ZW25 clinical trial - day one
 

Hi Flori

Thinking of you.

Keep on kicking.

Think I've joined you with this attitude! My iron fist well out silk glove.
Should be called Battling Bessie now!!

Take care
JUls

Re: ZW25 clinical trial - day one
 

Flori, Flori, Morning Glory! Calling you out, Girlfriend! We are wondering how #8 went and if Ritalin is still giving you some needed QOL? I hope your absence means you are thriving and busy kicking butt and taking prisoners. Still, those of us mere mortals are wondering about your escapades, so please stop by and fill is in. Jealous of your sunny SoCal weather right now, Flori! We are freezing back east presently!

Re: ZW25 clinical trial - day one
 

LAUREL!! I'm alive and well-ish. We are rainy rainy here but please come and visit me--warmer then east coast! And mid-west. Below zero??? Crazy cold.

Did treatment 2 weeks ago and tomorrow is time to go again.
ZW25 #10
Markers stable for the most part. My mood is the least stable, especially the day before treatment. And I had a virus for the past week plus so that does not help my mind frame. Okay, well, enough of that for now. Sending love to all, especially thinking of Juls and Cathy A!

So freezing friends, send me a pm if you want to get sunny!!!
<3 <3 <3

Re: ZW25 clinical trial - day one
 

So good to hear from you, Flori! Hope tomorrow goes by as fast as possible for you and they treat you right!!


Carol Ann

Re: ZW25 clinical trial - day one
 

Hey there, Flori! You sound solid which is good! Number #10 already? I missed one somehow! Never was especially gifted at math. Good luck with it. I hope it is a minor blip on your radar.

We are enjoying a "pseudo-spring" here! I am out in only a flannel shirt, no gloves, not hat! Heading out soon to walk the dog and do not plan on wearing a jacket even as the afternoon wains. Loving this!

My youngest is planning on moving to your big, and oh so far away (can you hear Mom's despair???), state this summer. His girlfriend's family is in San Matteo and he likely will follow her there. That means I will make the 3k mile trip to the west coast to see him. If I am flying all the way to CA, I am going to stay and explore it a bit. Wine, redwoods, coastline and a stop to meet up with Flori! I'll do the wine country firstly and bring along lots of my finds! Yours is such a massive state, it is daunting to plan a trip there! Micah is enraptured with the weather and beauty.

Re: ZW25 clinical trial - day one
 

Checking in . . . How are you doing Flori?