dumb test results

Joy · 09-06-2006, 01:18 PM

Hi all, I got my labs back from last week, the day I started Navelbine/herceptin. I wasn't expecting much since we knew the liver tumors were growing and we hadn't checked blood in 3 weeks and we were just starting treatment. I was bummed out though because my CA 27.29 jumped a bunch (which I expected) and my ALT and AST are now at 150 and 155 (not sure which is which) these are up by almost 100 points-totally freaks me out because they just haven't done that throughout the last 3 years despite chemo, more chemo, hormonals, etc. AND to top it all off I had that Circulating Tumor Cell test and, what a surprise. I have more ctc's than they like to see (6/7.5ml-should be 5 or below). All of my reading says that a value>5 means time to progression is faster and overall survival is STINKY. So, now I feel like I'm a goner and I'm all jacked up about it. This just came across my e-mail today.

Circulating Tumor Cells at Each Follow-up Time Point during Therapy of Metastatic Breast Cancer Patients Predict Progression-Free and Overall Survival

Daniel F. Hayes1, Massimo Cristofanilli2, G. Thomas Budd3, Matthew J. Ellis4, Alison Stopeck5, M. Craig Miller6, Jeri Matera6, W. Jeffrey Allard6, Gerald V. Doyle6 and Leon W.W.M. Terstappen6

Authors' Affiliations: 1 Department of Internal Medicine and the Comprehensive Cancer Center, University of Michigan Health and Hospital System, Ann Arbor, Michigan; 2 Department of Breast Medical Oncology, M.D. Anderson Cancer Center, Houston, Texas; 3 Department of Medicine, Cleveland Clinic Foundation, Cleveland, Ohio; 4 Department of Medicine, Washington University, St. Louis, Missouri; 5 Department of Medicine, Arizona Cancer Center, Tucson, Arizona; and 6 Immunicon Corp., Huntingdon Valley, Pennsylvania

Requests for reprints: Daniel F. Hayes, University of Michigan, 6312 CCGC, 1500 East Medical Center Drive, Ann Arbor, MI 48109. Phone: 734-615-6725; Fax: 734-615-3947; E-mail: hayesdf@umich.edu .

Purpose: We reported previously that

5 circulating tumor cells (CTC) in 7.5 mL blood at baseline and at first follow-up in 177 patients with metastatic breast cancer (MBC) were associated with poor clinical outcome. In this study, additional follow-up data and CTC levels at subsequent follow-up visits were evaluated.

Experimental Design: CTCs were enumerated in 177 MBC patients before the initiation of a new course of therapy (baseline) and 3 to 5, 6 to 8, 9 to 14, and 15 to 20 weeks after the initiation of therapy. Progression-free survival (PFS) and overall survival (OS) times were calculated from the dates of each follow-up blood draw. Kaplan-Meier plots and survival analyses were done using a threshold of

5 CTCs/7.5 mL at each blood draw.

Results: Median PFS times for patients with <5 CTC from each of the five blood draw time points were 7.0, 6.1, 5.6, 7.0, and 6.0 months, respectively. For patients with

5 CTC, median PFS from these same time points was significantly shorter: 2.7, 1.3, 1.4, 3.0, and 3.6 months, respectively. Median OS for patients with <5 CTC from the five blood draw time points was all >18.5 months. For patients with

5 CTC, median OS from these same time points was significantly shorter: 10.9, 6.3, 6.3, 6.6, and 6.7 months, respectively. Median PFS and OS times at baseline and up to 9 to 14 weeks after the initiation of therapy were statistically significantly different. Conclusions: Detection of elevated CTCs at any time during therapy is an accurate indication of subsequent rapid disease progression and mortality for MBC patients.

Montana · 09-06-2006, 02:00 PM

Joy,

The study goes on to say "The clinical relevance of these findings are not completely defined and further randomized studies with a larger population are needed."

Don't despair. This was a small study and was dated June, 2004.

margaret · 09-06-2006, 02:14 PM

Joy,
You have a Great name!! It must be difficult for you now especially when you read info like that study. Give yourself a big hug. Let your emotions flow. It's not good to hold them in. After feeling the feelings then try to remember that many times there are studies done to try to prove the value of a certain test so that the company that makes those tests can sell a lot of tests. Their motivation is to try to create a big impact so that more doctors will use their tests. They'll use dramatic points to try to sell their product.
Remember no matter what, no one can predict the future. Find your faith and believe in yourself. With each and every breath that's given there's a choice of what you do with that life force. Find joy in each and every breath and keep surrounding yourself with as much positive energy as possible. Surround yourself with positive, loving supportive people and rest your mind of the fears.
Sending you positive energy.....
Margaret

Julie2 · 09-06-2006, 04:57 PM

Please throw away the ctc test results. You will be fine. Many people on this board proved the statistics wrong.

Julie

KathyH · 09-06-2006, 05:05 PM

Hi Joy!

I can only imagine how unsettling that article must be to you. But is that article about how Joy is going to respond? NO!! Does something that we read in an article change God's plan for us? NO!! You will probably be the patient that proves all that wrong. Statistics like the ones in that article always feed my fear, but for me, fear is just imagining the circumstances ahead without God in them. I will pray that he will hold your hand tightly and help you to focus your thoughts on getting better and being the patient that does so well that they write a journal article about YOU!!

Love, Kathy

RhondaH · 09-06-2006, 05:22 PM

increase the prayers. Take care and God bless.

Rhonda

chrisy · 09-06-2006, 05:24 PM

Dear Joy,
I sure don't blame you for being "jacked up", but I agree with what has been said already. Do not despair, give the new chemo a chance to work.

It's a crappy coincidence, having that information in your face just as you got your test results, but it's not a "sign". It's just "information" - and although I DO think you're very special, I seriously doubt that God sent you that email!
Statistics are just that, this was a small study and you are not a statistic.

Do not lose heart.

I'd recommend a mini-drinkapalooza but since your liver is working overtime already, maybe a little dark chocolate would be better...

take care
Chris

Sheila · 09-06-2006, 06:43 PM

Joy
I can see how overwhelming all this can be, but take a deep breath, relax and let the new chemo do its work...these are JUST statistics....they don't apply to everyone...WE ARE NOT STATISTICS...many on this board have proven
"STATISTICS" wrong over and over again. A big hug to you and get that positive spirit up and running....you are a fighter...and a SURVIVOR!

09-06-2006, 07:03 PM

Joy - Sheila says it all... I too am in your shoes... herceptin not working, mets to liver grown & added mets to brain...(not much left!) oh bone mets appear stable for today!

To DO:
1 - have a brief 'pity party' as I call them (feel sorry for yourself, get mad pissed off...whatever works for you!)
2 - take a deep breath, review the options, talk to your oncs
3 - know that there are MANY at this site who are here to listen, give you support & 'commune' with you...as I have found.

We are not a statistic - we are people dealing with a chronic disease, each one of us unique and special!

Bev · 09-06-2006, 07:11 PM

Let us know how the next results are. I hope you and the chemo kick some butt. More prayers coming your way. BB

julierene · 09-06-2006, 07:39 PM

One of the BIG things that aren't in this are :

1. What chemo/treatment are these women on?

Another BIG PROBLEM is that everyone has a different biology and genetic makeup that makes their cancer cells respond differently to the different treatments. I would make 1 assumption from this study. High CTC's are only indicitating poor survival because they aren't finding the targeted therapies that work for these women.

Once the CTC cell lands, they take on different charachteristics that are more easily combatable for targeted therapies to work. Right now, doctors don't have very good ideas for what drugs work best for people. We have a handful of things we can test for like HER2 and hormone status, but not everyone responds the same even if they have the same markers. It's a big puzzle - STILL. CTC's I have heard are the traveling cancer cells in the blood. High levels of CTC's just mean that the disease isn't under control YET. If you have a treatment that works great for you, you can potentially go back to it later down the line. I responded so well to Herceptin/Carboplatin/Taxol that he wants to use it if I am NED for over a year and a half. My PET was completely clear after only 3 months. My CA 27/28 went from 12 at that point when I was clear, to 9 just 3 months later. This treatment worked REALLY well for me. BUT... I can almost guarantee I had a high level CTC before I started the treatment. I had a Stage 2a that was supposedly clear everything - but the CTC probably is why it traveled. I wish I had that test before to try to have the chance to lower the numbers. But I hear that doctors have theorized that CTC's are in a "stem cell kind of state". During that state, it's hard for the chemo to work because it's not a "fast dividing cell at that point". It only becomes a fast dividing cell when it lands. So don't get freaked, just work on finding a treatment that gives good results on your PET scans.

Tykerb just came out with some really exciting news, have you looked into getting onto a trial with that? What a novel idea of fighting HER2 inside the cell while Herceptin is fighting the outside receptors!!!

http://www.clinicaltrials.gov/ct/sho...225758?order=2 Check this one out.

Hang in there! Julie

sherri · 09-06-2006, 07:54 PM

Dear Joy,

Your name is Joy and you need hope and you will be fine. There are so many new drugs now, why not trying Tykerb? Just be strong, and remeber Cancer is a MindGame! You need your hope more than anytime now. My thoughts are with you.

Big hug,

Joy · 09-07-2006, 08:00 AM

All of you have such great words and wisdom! Thank you so much for your thoughtful and hopeful replies. I'm working those into my brain rather than the other nonsense that has been running around in there.

Sending you all a lot of love!

tousled1 · 09-07-2006, 08:12 AM

Joy,

Your posts to others who are experiencing setbacks in their treatment are always so positive and supportive. Please don't let your test results get the better of you. Statistics are just that - they are not set in stone and change with every new treatment.

SusanV · 09-07-2006, 11:17 AM

Joy,

Just wanting to send you a BIG hug from Pittsburgh. It is also time to circle the wagons, grab your support team at home, family, girlfriends who-ever it is, talk, take a walk, rent a movie, hold hands, and clear your mind for a minute.

TONS of love your way

deb-steph · 09-07-2006, 02:04 PM

you are such an inspiration. new to this site and am amazed at all the support. all the advice you have been given is right on. each of us is different and what will happen with treatment is just as different. we have all been given numbers but that's all they are. hang in there. this could all just be a blip on your screen and next test may be much better. let us know

Lolly · 09-08-2006, 07:35 AM

Joy, I know those dark thoughts can take over sometimes, it happens to all of us, but just remember what a certain famous heroine once said: "...After all, tomorrow is another day!"
You have many options, but first give the excellent combo of Navelbine/Herceptin time to do it's job.
Hope you're feeling better today.

lexigirl · 09-08-2006, 08:12 AM

Joy,

I hope you are having a good day today. There are many prayers coming your way. You are always so thoughtful and positive. I know when it comes to ourself, we sometimes don't take the time to tell God what we want from Him. I think it's ok to let God know that you want and expect full healing to your body. You are so precious. I hope that you are taking good care of you.

Hugs,
Lexi

Ceesun · 09-08-2006, 08:19 PM

Stay tough stay strong, Joy, let the chemo do its job and then re-evaluate Ceesun

Joy · 09-09-2006, 08:37 AM

I am starting to feel much better about things and you all have helped so much. Thank you for reminding me that this is a good treatment (Navelbine and Herceptin) and that this new test doesn't mean a heck of a lot. My outlook has improved and I'm weaning myself off the internet in search of ALL the answers. I think I should live my life instead of reasearching it all the time.

Nobody knows what to say quite like you guys!!!