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.