Re: ZW25 clinical trial - day one
 

Just checking in. When you're up to it Flori, please update us on how you're doing.

Re: ZW25 clinical trial - day one
 

Been wondering, too, Flori. Hoping you are feeling so good you are too busy to pop on.

Re: ZW25 clinical trial - day one
 

Tomorrow is ZW25 infusion #5. Had a stable CT scan at 8 weeks and I was very disappointed that it wasn't a TINY BIT of shrinkage on the lung met. I give up so much in QOL on this regime so don't know if it's really sustainable. I took an extra week, this past week which was GREAT and caught up on some social dancing and socializing.

My regular Onco says I should stay on trial if able, and see how I do. Eh.

I'm being moved from USC Norris' dismal CTU to their dismal day hospital which had patients sleeping in beds with sheets over their heads. I feel like their donors would be appalled.

My daughter said she'll take me tomorrow and if it's just too awful we can leave and I never have to go their again. LOL, she's my mom now. I wish my poor emotional state of mind surrounding this drug and this facility didn't fall on her shoulders, but maybe she needs to see for herself, too. Any how, that's my plan for tomorrow.

Hopefully will find the energy to make a list for the dr visit. He already hates me, so have to tread lightly--not my strong suit.

I AM CHANNELING MY HATEFUL ENERGY INTO SOME GREAT ARTWORK.

Love to everyone here...hold good thoughts for me, tomorrow <3 <3 <3
Flori

Re: ZW25 clinical trial - day one
 

Holding good thoughts for you tomorrow, and everyday, Flori.


all the best
caya

Re: ZW25 clinical trial - day one
 

Absolutely good thoughts for tomorrow. I hate that the process is so miserable and your QOL suffers so. Thinking of you.

Cathy

Re: ZW25 clinical trial - day one
 

To you I send the mostest, bestest, positivest, strongest energy waves I can! My hubby tells me to "breathe before I speak" but you know that is hard for me ; - } Make that list, but try to breathe as well.

Re: ZW25 clinical trial - day one
 

Hey there, dearest Flori, our esteemed and intrepid warrior woman!

Glad you checked in and equally glad you did some living on your extra week away from treatment. Social dancing sounds like fun!

I am truly sorry this course is tough on your quality of life. That makes sticking with the program so much harder. I know you needed that shot of good news where your tumors are shrinking, but stable is good news too as they were actively growing. Yes, pumping you up and searching for the proverbial silver lining!

I'd love to see some of your "angry art!" At least you have the talent to translate your frustration into art. Me? I am forced to work in the medium of profanity lacking any additional skill from which to channel mine! I will say (in my most modest and humble voice) than I can work in profanity with the best New Yorker having studied there in my youth beneath the tutelage of hardened NYC dwellers where the F-bomb is dropped with impunity peppering even the most casual and calmest of speech. It has taken me years to work the New York out of this girl, but it rears its ugly head when I am spitting mad!

I will keep you in my thoughts and prayers today, my friend. I hope this round is easier with less down time.

Re: ZW25 clinical trial - day one
 

Holding good thoughts for you each and every day. You are a rock star.

Re: ZW25 clinical trial - day one
 

Wishing you the best of luck, Flori! I am sorry to hear about the f*ups at the hospital. Hard enough to fight the drugs, the odds, the disease! When you add inefficiency and incompetence into the mix... Grrr!

I finished whole brain radiation a few weeks ago, got put on CMF to treat the lung mets. My kids are both here, spending three months with me, so life is good, though I've lost my appetite and am very tired all the time. The drs have given me carte blanche to eat all the calories I want, but I just don't feel like eating anymore. Weird. If the CMF doesn't work, I don't know what we try next.

Oncologist says keytruda isn't an option, b/c it takes too long to know if it's working, and b/c it can have serious side effects. Also, there isn't much data on its efficacy against her2bc.

I feel like I'm in a Beckett play. "I can't go on." "You must go on!" Let us know how you are doing, Flo. Love, Katherine

Re: ZW25 clinical trial - day one
 

I would question the doctor. Keytruda can have serious even fatal side effects but the side effects are immunological. The T cells become too active and can cause auto-immune disease. If this occurs the Keytruda can be stopped and prednisone therapy started. Sometimes the Keytruda can be restarted again. If Keytruda is used alone as an immunological therapy the incidence of auto immune disease is only about 3%, maybe less. The usual side effects of Keytruda are fatigue, loss of appetite, joint pain, cough, sodium loss and increase of blood sugar. Talk again with the doctor.Maybe Im missing something.


Paul

Re: ZW25 clinical trial - day one
 

zw25 trial also available in Orange County--Hoag Family Cancer Institute Recruiting
Newport Beach, California, United States, 92663

Hope this helps!

Re: ZW25 clinical trial - day one
 

Here we go again...zw#6 today. Can’t believe this doc is so defensive and also he doesn’t get it. “An extra favor” ?!?!?! The team member is the scheduler - not a nurse or anyone trained or allowed to administer meds - dr doesn’t get it! Why don’t patients have a voice to trial sponsors and/or FDA with regard to their experience? How is hospital held accountable for actually providing what is necessary? Going to work on this next week.

Please send me good juju for today. Xoxo

My email to the trial doctor:

I’m not questioning the nurses/hospital’s ability to respond to an emergency.

I’m worrying about being left solo in the room while I’m experiencing an allergic reaction and unable to get help.

Hope to find a way to bridge the patient experience and the clinical trial setting - no one should have to endure this much angst while in treatment. I am a seasoned survivor - my concerns are warranted.

My daughter took a leave from work tomorrow to accompany me.

Fingers crossed for an uneventful infusion.
Thank you.
Flori

The doctor to me:

The nurses in day hospital are available and trained. We are just doing you an extra favor honestly by having a team member stay with you since it puts you at ease. This should be an adequate plan as proposed.
Thanks

Re: ZW25 clinical trial - day one
 

Seasoned Survivor! I like that! I will be praying for you today, Flori. I am home today trying to get a jump on the Thanksgiving trappings, so I will keep you in my heart as I chop, cook, and clean.

I do believe it difficult for anyone who has not experienced chemo to comprehend our fear of it. Indeed, the breast cancer nurses promised me once I began treatment I would feel empowered and actually made He Man, ala The Hulk, muscle clenching moves to demonstrate just how big and powerful I was about to feel. Crap to that. At the time I thought they were all batshit crazy.

Later at my first infusion I vividly recall the bright red 50cc syringe of Adriamycin, known as the Red Devil, that was slowly pushed into my port. It was scary as shit! Then I had to endure a long drip of its evil twin, Cytoxin. Only a mentally insufficient person, or the most naively trusting would not have been fearful. You are injecting poison directly into a port running to my heart. Yeah, sure, have at it. After all I am an empowered super hero! Dumbest damn thing I ever heard of. The way I got through it was to remember whom my enemy really was, cancer, and that I was poisoning it to its death. I guess in that manner of mental athletics I was being a bit of the brave super hero.

You have endured side effects and as a heavily treated "seasoned survivor" multiple reactions to their empowering drugs. I can only imagine the escalation of fear and concern. Fear of the reaction and drug you must somehow embrace to continue your life, and concern no one there truly gives a damn about how you tolerate it excepting within the scope of their trial data. Well, I say keep your "I ain't no lamb to slaughter" attitude. Having your daughter at your side to be your advocate will shift a bit of responsibility off of your tired shoulders. I hope she is a chip off of the old block and will be assertive when necessary!

Wishing you winds of good fortune today, Seasoned Survivor!

Re: ZW25 clinical trial - day one
 

Your spirit and fight are awesome. Sending you good juju today and everyday!

Re: ZW25 clinical trial - day one
 

Flori;

OMG. I haven't been on a clinical trial yet but I have always imagined that they would be bending over backwards to make sure their clients were supported and comfortable. How close is the Newport Beach ZW25 trial Lani mentioned? Perhaps a visit and switch there would be good. When will you know if the trial is working for you. I'm so glad your daughter is going with you. I'm sending you lots of cyberhugs for today and hoping its a much better day than before.

I am to get re-scanned on Jan.4th to confirm that all is ok with me. Have a wonderful Thanksgiving.

Cathy

Re: ZW25 clinical trial - day one
 

I can only echo what everyone else has already posted. I wish we could all show up together to put that doc in his place!!


So glad your daughter could be with you. Good juju today and always! <3<3<3


Carol Ann

Re: ZW25 clinical trial - day one
 

Best wishes, Flori!

Re: ZW25 clinical trial - day one
 

Keep up the good fight! The nerve of that doc! Special Favor indeed. I'll "special favor" him with a piece of my mind. No, he really sounds like his experience is at the research bench and not with actual patients. Bedside manner sucks.
You are doing him a favor by schooling that bunch.
Best holiday wishes coming your way.

Re: ZW25 clinical trial - day one
 

Please add me to the list of your well wishers. You are the most important person in the room. I hope that the clueless doctor and his staff figure that out soon!

Keep taking those tough pills! You are our hero!
Thinking of you and sending love and support!
Catherine

Re: ZW25 clinical trial - day one
 

Just checking in. Hope you're doing well and that the treatments are going better and that the staff is showing more compassion than they have in the past. Please update us when you're up to it.

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?