Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

Wondering too. How are you?

Re: ZW25 clinical trial - day one
 

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.

Re: ZW25 clinical trial - day one
 

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.

Re: ZW25 clinical trial - day one
 

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.

Re: ZW25 clinical trial - day one
 

Hey Flori,

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

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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!

Re: ZW25 clinical trial - day one
 

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.

Re: ZW25 clinical trial - day one
 

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.

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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.

Re: ZW25 clinical trial - day one
 

Thinking of you, Flori!

Re: ZW25 clinical trial - day one
 

Hey, Flori!



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

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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.

Re: ZW25 clinical trial - day one
 

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)

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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


all the best
caya

Re: ZW25 clinical trial - day one
 

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.

Re: ZW25 clinical trial - day one
 

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.

Re: ZW25 clinical trial - day one
 

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....

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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.

Re: ZW25 clinical trial - day one
 

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

Re: ZW25 clinical trial - day one
 

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