CTC test done last Friday!

[Mary Anne in TX]

I had a Circulating Tumor Cells blood test taken last Friday and am waiting the couple of weeks to get the results. I've been so curious about this test and just decided to have it done. I'll let you know the results when I get them. Needless to say, I don't sit still very well! ma

[Joan M]

Mary Anne,

I've been thinking about getting the CTC test, too. Let us know how it works out.

Joan

[Mary Anne in TX]

My onc. really does focus on quality of life and understood that it's awful just doing nothing but worry or imagine. He told me that if it was good I would be hopeful and not worry so much and if it was bad, he could get me back on herceptin. (I do patient far better than healthy person).
Anyway, I'm really grateful that he understands so well and is so supportive of my weirdnesses! ma

[vickie h]

Ma, I didn't even know about this test but will now start praying that your's comes back with good results. I, too, am terrible about waiting......sitting still....waitng....waiting....
Let us know the results when you get them. You are an inspiration to us all.
Much love and Hugs to my friend, Vickie

[Jean]

Dear Mary Anne,
I have a question re: CTC blood test. How accurate is it?

Praying and wishing for you all the way!
Hugs,
Jean

[Marily]

I have been having CTC tests done each month for the past 6 months since stopping Herceptin. The normals run from 0 to 5. Up to this last month my numbers have been either 0 or 1. My Onc took me off Aromasin this past month because I have been taking pain meds to actually have a life, and he was worried since my kidney numbers are going goofy.He felt taking me off the Aromasin would give me less pain side effects.
(this is what happened this time so remember it can happen to you )
I had been waiting for the results and finally called in. I Was told they were on the Dr's desk because he wanted to review them before they called me. I called two days later and the nurse read me the report.
( Remember it is a test that very few know about and I have to tell them each time to order new tubes and what they look like.)
She told me I was now 7.8! HEARING this, I immediately left a note for the Dr (who was out till the next day) "Start me back on Herceptin now!!! I don't care if you put me in the hospital to do so." (I have had two bad reactions to Herceptin in the past)
I got a phone call back the next day and the nurse appologized for reading the wrong numbers. I was really at 0.
So either learn to read your own tests and have them faxed or be certain the person reporting the results knows how.
We had a pretty awful night!! I remained up all night reading and researching what we would have to do at this junction. My husband and son's were put through something that need not have happened.
On the funny side, my 93 year old Aunt who I told ONLY after the good results were KNOWN....said "that JUST is not fair" "I think you should have gone in and tripped that nurse"...lol...
I just replied: "Now after 8 years of this ... you learn to bend with the wind. It blows, we bend forward, and then begin putting ourselves back upright". I have no anger anymore..it is a waste.
I trust the test, but to back it up, every 3 months we do a ct/pet, and the "Bayer" her2 test is also repeated each month. These numbers are gradually climbing toward the high marker but.. I will greet that when the time comes.
I graph all my test numbers and feel it is a good way to keep watch. Hope this answers some of our questions.

good luck with your numbers

Marily

[Ellie F]

Thanks for the really useful info. I had not even heard that a test like this was available and think it probably isn't in England as we are always a few years behind.
Can I ask a question. If the result is zero does this mean that there are no cancer cells swimming around ? if it increases does this mean that they have started growing again? How can it go from zero then they reappear like magic? Do you need a certain number of circulating cells before they can lodge somewhere and grow as secondaries?
Hope this makes sense! love Ellie

[Mary Anne in TX]

I had read a ton about CTCs and realized that it has been around for a couple of years and is used faithfully by some, and of course, not by others. I do CA 27-29 every 2 months (they have been accurate for me all along) but felt like I needed some more information. I did not go off of herceptin willingly.....Mr. Insurance Man made that decision! I guess being a "trust my gut" kinda person (good or bad)....I just "knew" I needed to stay on it! Well, after much worry and not being full engaged in life as I want and need to be (for me and for my GD), I decided to do something about my goofy brain. I re-read the information and decided that since I had been off of herceptin since the middle of December '08, it would be a good baseline if nothing else.
When I read one of the articles and it talked about 0-5 and over 5 CTCs and the predictor of time to progression (I know, it only means averages, etc) I thought that it would at least give me a reason for action....herceptin or a kick in the britches to get back into life full time (what a joke for a bonafided turtle now) but I just wanted to do something. The economy and rearing our GD plus my mom-in-law has begun to require some more life adjustments.
If it turns out 0-1, that will tell my head to knock it off and get busy with life totally. If it is 3 - 4, I'll give my head a couple of weeks to live in cancer fantasy world and then decide. Over 5 and it's look out Mr. Insurance Man!!!! Thank God for great doctors! I love mine! ma

[Shobha]

Dear Mary Ann, praying that you have good results and start living life to the fullest!

This is very good information. I too have trouble staying still and every ache and pain makes me wonder and worry. My onc. is not so easily convinced about tests but I will try to approach her about CTC.

love,
shobha

[Mary Anne in TX]

Happy almost-egg-day to all my egg-cellent friends!

Jean, the best information that I could find indicated good accuracy on the # of CTCs. I think it's the "what does it mean for me" part that has so many differences. I took it to get some peace of mind or to get back on herceptin if necessary. The more CTCs the more likely a sooner progression, I believe. Would be helpful on the "hit um with all ya got" or "minimum is better" question! I guess I'll soon find out!

Shobha, I take articles to my onc to read when I see him. He's been my onc for 3 years, but he's always been open to listening to my opinion....that's the reason I'm still there! He was willing to fight with me for that extra 9 - 10 months of herceptin. I will be forever grateful to my friend who got me to Dr. K.
ma

[Rich66]

"my 93 year old Aunt who I told ONLY after the good results were KNOWN....said "that JUST is not fair" "I think you should have gone in and tripped that nurse""

Ha! She's such a pushover
I do think that even though not all the verdicts are in regarding her2 serum, CTCs and others, an overall picture might be gleaned if they are all used together.

[StephN]

First I must commend Marily on her honest post. This is why we should NEVER talk to the nurses, unless we know them! They change often and sometimes there is a "floater" covering and they know nothing of our case or tests.

Interesting about the CTC blood test. I have gone a similar route, and have used another test ever since my stage IV liver mets in 2002. It has been quite accurate for me. It is the CEA, or Carcinoembryonic Antigen.

Normal is between 0.0 and 2.0 - my number is consistently below .7, or undetectable. The version of this test I have is by Siemens/Bayer Centaur. They say that over 4.0 is abnormal. There was an older version that had 5 as the abnormal number.

The only time my number was out of normal was either with my liver mets or brain mets. It was this number climbing that sent my onc in search of some new tumor activity. I had no brain symptoms, so we first looked elsewhere and came up with nothing. My CEA was tracking my brain mets.

This test and the Her2 serum ELISA so far work for me.

Mary Anne, you need to have a way to gain some peace of mind over this disease. If this blood test helps, than take this as a sign that your cancer days are behind you.

[Mary Anne in TX]

Yes, I totally agree with you....thank you Marily! I got that kind of information when I was first diagnosed in another location before going to San Antonio. It made me feel crazy! Sometimes I think they believe that our information is theirs to do with and share however they will.
From this group I've learned to fight for what I believe I need and to press when things aren't done in the right way. Sometimes I ask myself, "what would so and so do if she was in this situation?" It gives me the courage to be a good fighter when I need to be. I've learned that fighting cancer is not the time to put yourself last.

[hermiracles]

Hope you get some great news MA
Blessings
Hermiracles

[Mary Anne in TX]

I never wanted to be a BIG 0 more than now! And I am! My onc called this afternoon and told me my results came back and it was 0. I asked him 3 times. He finally just read me the report! I celebrated with a great lunch and a nap! I do love good news!
I asked him if that meant that I would be coming to see him less often....No, he said. We will keep checking every 2 - 3 months!!!! Whew!!!! The only thing as good as a great report is a GREAT onc! He's terrific!
Thanks for helping me wait this out and for understanding that any sign of NED is a breath of fresh air!
I began to do as I had promised ya'll and me....I started focusing on my work more and getting the house in better shape! Whatever the future brings, this is a GREAT DAY!
Luv to all, ma

[Marily]

Mary Anne congratulations and big smilies on your news... on the CTC test. go get them girl but don't overdo... ok
hugs Marily

[Rich66]

Did the onc say how often CTC would be checked?

[Marily]

Hi, my Oncologist is checking my CTC every month since I went off both Herceptin and Aromasin...

[mmoons]

Mary Anne-

I was so excited to see your news. That is so terrific!!!!! thank you for sharing this blood test information and more important your Big 0 news!!!!

Maureen

[Mary Anne in TX]

My guess is that we will do it alternating with the scans (June) and other blood work. I forgot to ask! Too wacky excited! I'll check when I see him in June. I do blood work every 8 weeks, maybe then. ma