ZW25 clinical trial - day one

[SoCalGal]

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

[donocco]

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

[Laurel]

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

[Juls]

Good to hear treatment has started at long last!

Hope your feeling better today.

Juls

[Carol Ann]

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

[Pamelamary]

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

[Donna H]

Keeping my fingers and toes crossed that all goes well!

[Becky]

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

[Catherine]

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

[Cathya]

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

[sassy]

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

[StephN]

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.

[Lucy]

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.

[Laurel]

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

[Nurse4u2day]

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

[SoCalGal]

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

[Cathya]

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

[Juls]

Flori,

Hope round 3 goes well.
Thinking of you.
Juls

[Carol Ann]

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

[Laurel]

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!

[Lien]

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.

[Laurel]

How ya doing, Flori? Thinking of you.

[jra40]

Praying for you Flori!

[Juls]

Hi Flori,

Thinking of you!

Juls

[SoCalGal]

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

[Lucy]

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.

[Bunty]

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

[Laurel]

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!

[Emily_Rebecca]

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

[Donna H]

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!!

[SoCalGal]

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.

[Bunty]

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

[Juls]

Great news Flori!

Good luck for tomorrow.

Juls

[Lucy]

So happy for you Flori!!!! :)

Thinking of you today as you get your next treatment.

[Laurel]

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!

[Carol Ann]

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


Carol Ann

[Cathya]

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

[Unclaimed]

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

[StephN]

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.

[Becky]

Oh yes, yes, YES!!

[Lucy]

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

[Laurel]

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

[SoCalGal]

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

[caya]

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


all the best
caya

[Cathya]

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

Cathy

[StephN]

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.

[Laurel]

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.

[Donna H]

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

[KatherineM]

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

[donocco]

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

[Lani]

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

Hope this helps!

[SoCalGal]

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

[Laurel]

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!

[Donna H]

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

[Cathya]

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

[Carol Ann]

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

[Pamelamary]

Best wishes, Flori!

[StephN]

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.

[Catherine]

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

[Lucy]

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.

[Laurel]

Ditto what Lucy said, Flori! Thinking about you.

[SoCalGal]

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.

[StephN]

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.

[SoCalGal]

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

[Laurel]

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.

[Lucy]

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.

[Laurel]

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.

[Lien]

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

Love
Jacqueline

[Pamelamary]

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

[SoCalGal]

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!

[Donna H]

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

[Carol Ann]

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


Carol Ann

[Laurel]

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.

[Becky]

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

[Juls]

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

[Laurel]

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!

[SoCalGal]

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

[Carol Ann]

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


Carol Ann

[Laurel]

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.

[Lucy]

Checking in . . . How are you doing Flori?

[Laurel]

Ditto Lucy, Flori! Inquiring minds want to know how you are rolling these days! I figure no news is good news!

[Lien]

Wondering too. How are you?

[SoCalGal]

Had treatment yesterday - ZW #10.

Had to push it up a week bc sponsor didn't have my drug lot ready on time and trial hosts called me to reschedule. Well, first they asked me to reschedule a day later, which I couldn't do - they don't get it. I have to ask others to take me, and everyone can't just move things up a day or two - especially when they weren't even sure WHEN my drug would arrive. I did learn that the clinical trial coordinator stutters whenever he is BS'ing me.

But it prompted this journal entry:

“We don’t have enough of your trial drug lot for treatment on Tuesday, can you come in later in the week?”

The call came on the Friday before my Tuesday appointment. This was an appointment for chemotherapy. I am on a clinical trial drug, which I refer to as TBFW (this better fucking work). I’ve had metastatic breast cancer for the past 11 ½ years. And have been very fortunate that three drugs kept me mostly well for the better part of the time.

In August of last year, when my prior treatment stopped working, I started on the clinical trial. TBFW is made by a company in Canada, and offered at several cancer centers throughout the United States. Locally, the closest facility is USC NORRIS comprehensive Cancer Center. From where I live, this is just shy of an hour in traffic. (My normal oncologist’s office is less than two miles from me). It is not uncommon for women to travel quite far for the right treatment.

When the trial coordinator wanted me to reschedule, not understanding why I couldn’t just move things up a day - acting as if I was moving a nail appointment around - I thought I’d make a list of WHY RESCHEDULING IS NOT SIMPLE.

What it takes to go to chemo - logistics:
1. Ask a friend or my beautiful daughter to take me.
a. This involves picking me up and driving me downtown. We leave around 8:00AM and return by 4 or 5:00. It’s a long stressful day. I’m knocked out with premeds and I’m NOT FUN FLORI.
b. Monitoring my infusion protocol, as I am heavily drugged and unable to ensure they are doing EXACTLY what they should be doing. A shame I have to monitor this at all but believe me I learned the hard way that I must. Now I will add another step to confirm that they have my medicine in their facility.
c. Show whomever is with me how to read and check the schedule and make sure they understand what an advanced directive is and remind them it’s in my bag if need be - DNR.
2. Ask a second person to come halfway through if the first person is unable to stay the whole time.
3. Print out my current infusion schedule, a copy for my nurse, a copy for me.
4. Pack my day bag. (heating pad, blanket, socks, fan, ANTIBACTERIAL WIPES, kindle, headphones, etc.)
5. Pack snacks.
6. Prepare and pack lunch for whomever is accompanying me. Norris food is inedible.
7. Pack water, juice and whatever I might want during my captivity.
8. Go to grocery store day or so before and make sure to stock up in case I am sick and can’t get out for a couple days.
9. Pre-cook several dinners, in case I am too sick to cook.
10. Make sure to get refills on meds, and anything else I’ll need at home in case I don’t feel good and can’t get out.


What it takes to go to chemo - emotional and other preparedness:
1. Make a list of what went right and what went wrong and send out emails to ask trial Dr. and trial coordinator for correction/improvements.
2. Re-read the positive reports on TBFW, to reassure myself that this is worth the fucking hassle and stress.
3. Cry at my support group about how fucked it is to go to USC. How badly they treat the most vulnerable population, what a dirty environment and how dreary grey everything is.
4. Cry with my therapist at how uncomfortable I am asking for help. How hard it is to keep asking. For the past 11 ½ years.
5. Try to forgive myself of shortcomings and reassure myself THAT I CAN GET THRU THE DAY like a grown up.
6. Remind myself I am not at all afraid to die. I am only afraid of the suffering inflicted by the morons at USC.


So, no, I can’t just reschedule TBFW because rescheduling doesn’t FW for me.

[Donna H]

OMG - I absolutely loved that post! You are such a fierce and determined woman!! And you are totally honest about the entire process involved with treatment. I didn't experience nearly what you are going through but wow.....you are correct. Preparing for treatment isn't like a regular doctor's visit or a manicure (LOL) or most anything. Like you, I tried to fill the frig and shelves with food prior....get the laundry and cleaning done prior....pay bills prior.....because there would be multiple days when ya just don't feel like lifting your head off the pillow after treatment.

You would think onc nurses and staff would have a little more understanding of the process.

I admire your determination and your attitude. You rock.

[Laurel]

You absolutely out did yourself on that last post, Flori! I was with ya all the way, captivated. Does sound as though it is a shitshow though, I must admit. There is an annoying indignity to it all, isn't there? You didn't mention how life is going with the Ritalin pumping up your QOL. Is it still helping? I hope there are some true heavens along with the many hells, my friend. Gotta tip my proverbial hat to your intensity and sheer guts. Like Donna said, YOU ROCK.

[Lucy]

Hey Flori,

I hope all is well with you. Let us know how you're doing when you have a minute. :)

[Catherine]

Hugs to you Flori! I love your writing and your honesty. Sending vibes for some good days ahead! You deserve some good days!

[Laurel]

Jonesing for an update, Flori-girl! Figuring that no news is good news.

[SoCalGal]

Hi Gals,
Well...I'm not going to continue with the trial. My decision for a variety of reasons, but rising markers and just can't take the USC Norris environment and the lack of proper medical care. Have been down with a monster virus/strep/raging ear infection and 4 weeks later, UTI aside, I'm healing from the monster virus. My state of mind actually feels good, I just decided to stop the trial so feeling like my life is back in my own hands, and hope this elation lasts. My mind-game has been so seriously deteriorating since starting this trial drug, and I've had so many virus/infections I can't help but wonder if it's all coincidence or if the ZW was making it hard for me to stay healthy. Considering the amount of time spent at home, hard to imagine why else I was getting sick. Anyhow, will be working on my mind game, my purpose for waking up each day and feeling physically better. Scan and back with my home team the end of the month. And brain MRI if my ear would just resolve and my cough would diminish. Soon enough I'll know how bad I am with PETscan results. And then I can hatch a plan. For today, I am happy to feel happy and somehow hopeful that I'll find a way up and out. And maybe even make it back to dance. <3 <3 <3

[donocco]

SCG

Look up copper reduction as a cancer treatment. It has been tried with some success ie Dr. Linda Vahdut. It may be promising/

Paul

[Laurel]

Morning, Flori!

So long to ZW25 and back to some semblance of normalcy! I am saddened to hear this trial was not a good fit for you. I see you had a "cancerversary" this month! Yea for you! Here's to another 12 and another 12 and another....

I hope your home team will have something in its arsenal. I have heard of copper reduction as well and try to avoid it in all my supplements. It is primarily why I do not take a multi-vit as it is nigh on impossible to find one devoid of copper. The other thing of interest may be a sugarless (as much as possible) diet. Some cancers are fueled by sugar, not all, but some. Worth a look.

Let us know about the scan results and where you are in terms of status of the beast. Will pray for a new regimen for you that is effective and tolerable! Back to dance and adding NED to your dance card!

[Lucy]

Sorry the trial did not work for you. One of the hardest things is having no control over things during treatment. I hope the scans are good and that you find a good path forward for treatment of this beast.

[knick]

Sending best wishes for scans and here's hoping for some R&R with your home team. Frustrating how much a trial site can impact the care you receive.

[SoCalGal]

Thanks everyone...will update after scan results and doctor visit on Friday. xoxo

[Cathya]

Hi Flori;

I've been missing your posts. I'm so sorry to hear about ZW25 but it does sound like you've made the best decision to end the treatment. Didn't Dr. Pegram suggest another possible treatment. Since you saw him there could be other developments. I'll look forward to hearing about your meeting Friday.

All my best wishes,

Cathy

[StephN]

Well, Flori, you gave that trial 6 months of your life energy and maybe got a little something besides aggravation. Sorry to hear you got such a bad case of the crud that is going around. Hubby and I were on a 2-week road trip and come home on Easter with colds setting in. Devolved into a bugger of a cough! Taking more than 2 weeks to shake that thang.

The nice weather here is helping, so I wish you lovely gardens and sweet blooms.

[Laurel]

Thinking of you, Flori!

[Laurel]

Hey, Flori!



What's the new plan? It is nearly a month since your last post. Thinking of you!

[StephN]

Thinking of you with warm and fond thoughts. And Seattle memories.

[SoCalGal]

My scan showed quite a bit of progression. Going for brain mri tomorrow plus cervical. Next week thoracic and lumbar spine MRI’s. I dont have pain but have random numbness on my NON-cancer right side (breast, armpit, rib, hip, calf). My onco suggested all the diagnostic MRI’s and when I asked what are we looking for - spine mets?? And she mentioned ruling out meningeal mets I stopped listening and stopped breathing.

Suddenly over-filled with fear and rage. Power worrying about numbness turning into me being paralyzed but not dead. Haven’t said a word to my kids but wrote out birthday cards and put in safe for them. Of all the endings I imagined this was not one of them.

I did go back on Herceptin last Friday along with xeloda. Today is day 7 of a fairly conservative dose of xeloda—the numbness started prior to xeloda. You’d think after 12 years of this beast I’d be better equipt to deal but I’m not. I’m freaked and terrified once again. And ironic that I’m so scared of my own body. I took a bunch of Imodium and went to dance last night. Had a great night. How sick can I be if I can dance? That last sentence is the only comforting thought I have.

[Lucy]

Oh Flori I'm so sorry to hear this. Not knowing is the worst. While you wait for all the test results the imagination has a way of running away from you and a lot of times is worse than the reality. I understand that progression is not a good thing but hopefully once you have all the answers to the tests, a path forward can be determined that will kick your cancer is the backside. Try to breathe and remember what you've said to us before, don't write the ending just yet. We're here for you and praying for you! (Hugs)

[SoCalGal]

Lucy thanks for the reminder, you are right, my mind is racing. Big hugs, Flori

[Carol Ann]

Oh Flori I am so sorry. This totally sucks. Praying for you and that the herceptin and xeloda kick in and knock that progession out and the numbness stops.


Raging right along with you.


Carol Ann

[Lien]

Oh Flori, of course the fear kicks in. And although we both know there could be lots of other explanations for your symptoms, the one we fear most jumps up and takes over. Holding you in my thoughts and thinking that a body that's giving up doesn't dance. It goes in protection mode, conserving energy to fight the beast. Hope I'm right!
Love
Jacqueline

[caya]

Sorry this is happening, Flori. Hopefully the meds will kick in soon. Keep the faith, BH.


all the best
caya

[Laurel]

How sick can you be when you can dance? If only you could dance once again with NED! This latest sucks. Flori, I will keep right on praying as long as you keep right on fighting! Got your back. Please let us know how your scans and MRIs go this week. You will be on my heart.

[JessicaV]

I so hope your scans and MRIs will bring some good news, and that the regime you are on will start to help.
I love to think of you dancing, and it makes me think of Peggy Lee

"I remember when I was a very little girl, our house caught on fire
I'll never forget the look on my father's face as he gathered me up
in his arms and raced through the burning building out to the pavement
I stood there shivering in my pajamas and watched the whole world go up in flames
And when it was all over I said to myself, is that all there is to a fire
Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is.

Wishing you answers, improvements, quality of life, healing, and hope. You are such an amazing woman.

[Laurel]

Fire Dancer! That's our Flori! Nice one Jessica. I enjoyed the lyrics. Now i have to go see if I can find the song on the net to listen to it.

Flori, dance in the fire, because that's all it is....

[Cathya]

Flori;

I am really praying that your new treatments are at least starting to help you get back properly on your feet again.....although the dancing sounds amazing. Please let us know how you are doing and god bless.

Cathy

[StephN]

Dearest friend,

I have been thinking of you and asking the Herceptin Goddess to be good to you. We never know how things will go for us. I have two friends with sisters in latter stages of Altseimer's. Other friends with loved ones with all sorts of other cancers, etc.

Your writing out the birthday cards ahead of time and putting them away says it all. You have a golden heart!

Strongest thoughts going your way for a reprieve.

[Laurel]

Thinking of you, Flori. Ditto what Steph said. You do have a golden heart. Praying for a "reprieve" as well!

[Donna H]

Thinking of you as well....sending cyber hugs your way.