need encouragement & your insight

[PamP]

I have been away from this site for several months. I just needed a break from the emotional stuff of reading about this disease.

I have been feeling very well. Thanks to God! But I am so nervous about what might be brewing.

I was dx with ibc in 2001. A year later dx with bone mets. Currently i have been on xeloda/hercpetin for about 13 months. Other than the hand/foot stuff I've been feeling great on this treatment & the pet scans have showed stable with the bone mets: no new spots, other places nothing shows worse.

Here's the worry: the ca2729 tumor marker. I know this blood test is not always accurate, not all docs use it, etc. But here's the deal in my case. It has been fairly indicative for me as far as I know. When i started xeloda it was about 145. then the numbers tood a steady dip for a few months getting down to about 48. then they've been steadily climbing each month now for about 6 months. the last one a week ago was 179, a 35 point jump from the month before. My doc says he's nervous about the climb, but since nothing shows on the scan & I'm feeling okay, he says to stay the course for now, but he's nervous that the cancer is slowly growing somewhere 'sub clinically'.

He wants me to get on tykerb. Since I have bone mets and no 'measurable' organ involvement, according to my oncologist I am not eligible for a trial. But he also said it might be fda approved & available to me .... hopefully within the next several months. Anyone have any info on that? In the meantime, I'm really freaking out about what this tumor marker might mean.

I have been reading the posts the last few days & glad to see familiar names and people doing well. I'm worried about the people whose names I haven't seen..... so sorry to see the post about Judiek.

Thanks. Pam

[StephN]

Pam - have you had a brain MRI? Also, is the CA27-29 the only marker you have tested? No CEA?
One other idea is to have the HER2 serum test, which will measure circulating tumor cells.

Yes, Tykerb is a good idea, but "sub-clinically" has to be determined and, if there is anything, dealt with.

Have you had all your lymph node areas thoroughly checked? PET scan should reveal those, but you did not mention when the last one was done.

Glad you had some stable time to go on with your life.

P.S. Did you notice there is a special forum on this site just for IBC??

[PamP]

Steph -

No I have not had a mri --- does the ca2729 sometimes show for brain mets? I had my last pet scan in Sept, the same week as the last ca2729 - nodes were clear, only sign of mets was in the same spots in ribs, but nothing was worse or new. I'm not familiar with her2serum test. Is that a blood test? What would that indicate that the ca2729 doesn't about tumor cells circulating? thanks. Pam

[StephN]

Hi Pam -

Yes tumor markers can indicate for brain mets. In my case it was the CEA that climbed, not the CA27-29, but it is worth getting a brain MRI as soon as you can.

The HER2 serum test has had a lot of "play" on this board the past few months. Which you missed if you have not been checking in.
Just do a search for "Dr. Carney" and you will find a whole long list of questions and answers. He is the main developer of this test and that thread is extremely informative.

Several of the members here have had this test and it is more accurate than the tumor markers. My med onc ordered that test for me last spring and it confirms my tumor markers in normal range. The test is also being used by oncs to check progress when a patient goes on a new treatment for mets. The blood test will show working or not even before scans.

Take care and keep doing your homework here.

[PamP]

Steph -- thanks for your replies. I will follow up with your suggestions with my oncologists. I did have a piece of good news today. a new ca2729 that was taken last week is down 24 points! I'm going to take that as a good sign.


My doctor has said that the chemo is systemic & if it works on some cells in the body it logical that it will work on all tumor cells in the body. So, if my pet scan is better, then it wouldn't be logical that the chemo -- xeloda for me right now -- would improve my bone mets yet cells somewhere else not detectable would not be also pushed back by the chemo. Make sense? What do you think of that?

Thanks. Pam

[al from Canada]

Dear Pam,

GET that Brain MRI!
First of all, Xeloda, technically speaking is not systemic. It is only supposed to be activated by and changed into 5-FU by tumors. I would be really surprised if it is activated by free-floating micro-mets; so it is not a profilactic treatment.
Second, although the Xeloda (capecitabine) molecule is small enough to cross the blood brain barrier, most HER2 cancers do not respond well to chemo alone; and since herceptin does not cross that BBB, you would not get that double punch effect for brain mets; thus the need for a small molecule like Tykerb.
Conclusion: your onc is only speculating and the only way to be sure is get that brain MRI!
Good luck,
Al

[jones7676]

I did not show an elevated test and recently they found a brain met. You need an MRI in order for them to tell or not. period.