My Clinical Trial Experience

To recap: I am enrolled in a phase 1 clinical trial testing a drug which targets a kinase spindle inhibitor.

I spent 3 days in the UW general clinical research center located in the hospital. After screening lab, chest xray, ekg, and physical, my drug was started at 11:34 AM. This is a 24 hour infusion connected to a portable pump so I could be ambulatory.

I had labs drawn every 4 hours then every 6 hours throughout the 3 days. I also had ekg's done every 8 hours the 1st day. All these tests were done exactly at 34 minutes after the hour. The protocol has a very strict schedule that is carefully followed by the staff.

I also was visited daiy by an Oncologist, a Fellow, a Phase 1 nurse, floor nurses, and a MD who specializes in the rights & protection of trial participants. This MD asked me if I had any questions, if anything being done to me was not explained, and if I had any problems with the staff or anything to call him.

For 2 days after I was discharged, I had to return to have blood drawn at the center. The sponsor paid for my entire hospital stay and the extra 2 nights in a motel. I havve to get blood drawn at my home lab twice this week and weekly after. The med is every 3 weeks. After the 2nd infusion I get a CT scan to check progress.

So far the only side effects I have are mild nausea and headache. I also have fatigue but I had that from my previous chemo.

My oncologist believes this targeted therapy aimed at specific molecular structures will someday replace harsh chemo which kills all fast growing cells.

So that is the beginning of my experience as a guinea pig. Not a bad experience at all. I wou;ld encourage anyone who has a chance or need to look into a clinical trial. Every step of the way the trial staff thanked me to doing the trial. They also stated over and over that this is voluntary and I have the right to quit at any time.
There is absolutely no pressure to enroll

A very nice surprise while I was there was a phone call from Ellen (Margaret 321).

Cindy

Cindy - I'm so glad that your experience was a good one with minimal side effects. I'm glad to hear that they are following the protocol so religiously and that you are being watched so carefully. Here's hoping that this drug works for you.
How many rounds will you go through?

Cindy,
I am so happy to hear that you felt that this was a good experience (all thinks considered, of course) I am also happy to hear that you were shown a lot of gratitude for your participation. You do deserve "Queen For The Day" treatment for your willingness to help with this research.

Selfishly, I was also happy to hear that your experience was positive because should I ever need chemo, I have been told that a clinical trial will probably be my best recourse. The thought of chemo is enough to make one weak in the knees, being told that an experimental chemo is your best bet is enough to make them buckle.
Thanks for kindly being so descriptive with your experience!

Please be well!!

Beachball

Dear Cindy,

I'm so impressed by what you're doing: being a trailblazer and also sharing your experience with us at Hyster Sisters. I hope you continue having good results with few side effects and that this new targeted therapy succeeds.

Thank you and good luck!

s Cindy

Murky called it right: trailblazer.
What a valuable service and education you are providing for all of us.
Wishing you all the best.
Keep us up to date.

oxoxoxox karenann

Hi Cindy, Thanks for being a brave trailblazer and so forthcoming with us re your experience with this trial. May any side effects be minimal and only very good results occur. Please continue to drop in when you have time and feel up to it.
s,
peggiesue

Cindy,
Thanks for letting us know how this experience of this trial is like. It sounds like you are in good hands there and they want to make sure you are comfortable every step of the way.

I pray that this treatment is what does it for you. How sweet that Ellen called you.

s
Jane

thank you Cindy, for doing this. Yes, it's for yourself, but it is for all of us as well. It's great to hear that you are in such good hands..I've heard that you get the closest monitoring, the best follow up care, when doing a clinical trial.

I hope this not only blazes a new path for all of us, but is the answer to your prayers, too!

xoxo
k9

I am watching you very carefully because...well, I have begun to think...maybe, just maybe...I could do a trial. So you are my leader in this and so far so good!

YOU GO GIRL!!
I am soo happy that all is going well.
You are our very own personal pioneer!!
Rosalie