I need your opinion please

[SoCalGal]

I am not 100% comfortable with my doctor's advice. I went from a confident state of mind to feeling like I am doomed, all because of some little numbers. My markers went up slightly. I don't know if I should listen to my doc or not. He told me to stay on 4 tykerb/4 xeloda and try not to worry. But I am worrying and I wonder if you would give me feedback.

My oncologist says that markers can "bounce around" a little and what they look for is doubling or tripling. He says that in practice, as opposed to the clinical trials, many docs are prescribing 4 and even 3 tykerb pills daily to better control side effects and still successfully manage disease. I was reduced to 4 to "see" if I felt better, and I really do feel MUCH better. But with the markers going up, I think I should just go back on 5 tykerb, tough out the symtoms and make sure it's working. (I don't have a pet/ct until first week in July).

Thanks much. Flori

DETAILS:

3/21/07
CEA= 16.6
CA 15-3 = 36.1

START 5 TYKERB/4 XELODA ON 4/6/07

4/23/07 - 2 1/2 weeks later:
CEA= 6.1 (big drop)
CA 15-3 = 30.1 (drop - good indicator of response)

5/10/07 - Start gluten free, dairy free, vitamins and supplements

5/21/07
CEA= 6.1 (stable which is good)
CA 15-3 = 29.9 (a little lower, good)

5/22/07 REDUCE TYKERB TO 4 PILLS A DAY

6/7/07 - 2 weeks later
CEA= 10.1 (up 4)
CA 15-3 = 32.7 (up 3)

[AlaskaAngel]

Flori, I won't try to answer the question about the number of pills because I don't have the knowledge for that.

But I can say that in general what your onc says about markers bouncing around is correct. For some, markers are quite accurate; but for many they are just generally an indicator -- one more possible tool in the toolbox. Many docs won't do them because patients tend to get easily upset about them. Sequential repeat markers that on the whole tend to continue rising are more of a true indicator of recurrence/mets.

A.A.

[chrisy]

Flori, I second what AA said. My oncs (both of them) don't rely on them and have also told me they bounce around and a small increase/decrease is not unusual. For patients for whom they are used, they look for a trend of significant increases.

[Joy]

which is about all I got...I have heard the same thing from two oncs regarding markers and looking for solid trends i.e. doubling/tripling. I used them for years and they are accurate for me, BUT I could no longer mentally play the rollercoaster game. So I requested that either we don't use them and the doc was cool with that or I just don't pay much attention to what is being drawn anymore. The staff can have the numbers and I don't need them. It has helped my piece of mind quite a bit. I still am crazy from living with MBC, but my craziness is on a more even ride rather than the rollercoaster like before.

Thinking of you so much.

[Adriana Mangus]

Dear Joy: I hear you; most of us do not want to be bother with "Numbers" anymore. This is just from my perspective and my oncologist; Numbers do not matter as much as your energy level, and most importantly "how you feel"

This is me. I don't know that it will help you, but let me try.

No more CT scans, (except the yearly BRAIN MRI),
No more asking for the "number"

I simply go to my doctor, which I adore, I really do, -he's the coolest - everytime he comes into the examination room, he asks the same question: How are you doing Adriana? I always respond. Great!!! Then he would tell me the number which _I swear to God_ I pay no attention anymore! And that's the end of it.

This last time (around February), the tumor marker went up to 67 and I couldn't sleep, eat, nothing; was consummed day and night with the stupid number, so I decided to let my onc. do the "dance"

As long as am in agreement with wich treatment to follow, I nave no problem with it.

It's just too much Joy, I cannot do it - no more "numbers"..

Everything is in my head, that's what I keep telling myself. Pay no attention, but be good to your body and "listen" to your symptoms.

Good Bless You. Hang in there.

[Odette]

Oh Flori,

I see that you are worried. We do not like those markers going anywhere but down down down...
I tried googling margin of error and markers. I did not come up with a definite answer, but it seems like it is very possible that the rise in your numbers is within the margin of error of these kinds of tests.
I also see your logic of going back to the usual dose of Tykerb and maybe reduce it after a couple of months when you had good scans and good markers for a while.
I don't see anything wrong with calling your oncologist and telling him that you'd be more comfortable going back to the 5 Tykerb at least till your scans in July. The Xeloda dose is based on height and weight and you mentioned before that you are thin. Is it possible that he thinks the lower dose of Tykerb is appropriate for you because of that?

The way I (and probably most of us) feel: rather take some immediate discomfort then the anxiety about the future.
Wishing you good luck with your decision and sending GOOD SCANS/LOW MARKERS vibes your way.

Let us know what you'll do,
love and prayers,
Odette

PS. My onc does not even do markers, he just does not believe in them.

[gin-tx]

I think you have to listen to your onc. I asked for a report on my tumor markers when I was at chemo last week, since Sept they have stayed in a fairly constant range, vary a few points but nothing drastic.

This is my 2nd round of BC, first in 1995, had lumpectomy and 36 radiation treatments. I have a new surgeon, onc, and am very pleased with my caregivers. Looking at your history you've had other situations as have I since I began this second journey in April 2006. My gyn sent me to a breast surgeon because of a problem, he thought everything looked normal but recommended biopsy, which I had following week. He called 4 days later and said it was malignant. He was also surprised, wider margins were performed, one sentinel node was malignant, all other areas clean. But it would mean chemo. I got a couple of opinions, by time I got to 2nd onc the cancer had spread to my spine changing me to Stage IV metastatic. I had 9 radiation treatments before beginning chemo, with 9 more to follow. Tumor has shrunk but it will never go away. I have a CT every 4 months, will be getting one next week. It's very important for all of us to be supportive of each other. E mail me if you ever need to discuss further but I'm just a patient like you. I am glad to help you any way can, this is a tough road for all of us to deal with. Your decisions have to come from your doctors.

Are you at Cedars Sinai? My daughter and family lives in Beverly Hills, that is where her drs are located.

hugs,
ginkott1@aol.com

[SoCalGal]

Okay, I'm breathing again. I still don't know if I want to listen to the doc - today I took 5 pills. Can feel my mom laughing and shaking her head...saying "Flori, why do you ask my opinion if you already have your mind made up?" Never did have a good answer for her on that one.

Thank you for your replies. Your feedback really helped me.

Today and tomorrow are graduation days - my nephew today and my daughter tomorrow. Am going to focus on that and how lucky I am for these moments - I fought hard to be here for times like these.

With gratitude,
Flori

[hutchibk]

I will play devil's advocate here a little.... in my case, tumor markers correspond directly to my recurrences and have always been our earliest indication that there is new activity. My onc agrees that they can bounce around and that he follows them for upward trends, because in my case, everytime they have trended upwards, we have scanned and found something new. When I was on Taxol/Herception for the last 8 months, they did bounce up and down in a range of about 10 points over the 8 months. When they trended up for 3 labs without going down, we scanned and found new activity. That's when we changed to Tykerb/Xeloda.

Since being on 3500mg Xeloda and 5 Tykerb a day for the last 5 weeks, my TMs have dropped like crazy. From 45.1 to 37.5 to 17.5 yesterday!! Yippee.

[julierene]

My onc said that the CEA is more used for like lung cancer. All of these types of tests are kinda ify. Mine never jumped like they were "supposed" to. I don't know what to think about it honestly.

[Lala]

I understand that for some people tumor markers are not accurate. There are many reasons the markers can be elevated; one reason is that the cancer cells are dying off at a rapid rate and this can cause the tumor markers to rise temporarily. There is also the possibility of infection.

In my case I use two tumor markers the CEA and CA27-29, both have been very accurate indicators for me. I always have scans to confirm. I have been getting markers every two weeks it seems since my diagnosis.
I am a firm believer that you need to run two tumor markers in order to capture the whole picture.

[gin-tx]

Dear Julierene,

I don't know what a CEA test is, have never heard of it. I've had Muga as I'm on Herceptin and CT as well as bone scan and MRI for my tumor on spine (this is my second episode of BC, first was 11 yrs ago, no chemo, only radiation). I'm sorry I can't help you more. Keep in touch and let me know how things are progressing. So far my CT to abdomen area has not shown any mets to liver, etc.

ginkott@aol.com

[chrisy]

Julirene

My oncs are NOT believers in markers, and have always told me they are not reliable and thus I have to really push to get any. None of the BC markers have ever been any indicator for me (15.3, 29.9 or CEA) as they were not really elevated even when I had extensive liver mets. The only marker that was elevated at that time was 19.9 which is typically used for pancreatic cancer I think - but apparently can also increase with any liver, gastric, or pancreatic cancer. They only ran that one because they were thinking "unknown primary" (since they just KNEW it couldn't be BC mets!). The 19.9 was around 224 before chemo, and dropped back into normal range quickly. Last August it started to creep but was still in the normal range - but may have been an indicator of the recurrence!

Just bringing this up since you have been dealing with liver mets, its a wacky one, but may be worth checking.

[hutchibk]

Are they running liver enzymes with your CBC? I believe that is really supposed to help in showing a little bit more of the puzzle with liver mets.

My doc doesn't rely on tumor markers exclusively, however he uses them as a tool in the overall picture. I am glad that they are a pretty true indicator for me. They have saved my life 3 times now. All of the folks I know at my clinic (who see one of the 12 different doctors) follow their markers and the markers are always a major piece of the puzzle for them...

Lots of differing theories and experiences...