Ca 27.29

Mary Anne in TX · 07-07-2006, 10:55 PM

I have had 4 scores of 49, 50, 51, and 48 since my dx in Dec. '05.
Today I got the last score (June 30) and it was 76.
I have had 3 x adriamycin & taxotere - Jan and Feb '06
mas with 7 pos. nodes on April 10 '06
Began Taxol, Carboplatin, and Herceptin in April every two weeks. Had 5.
Will they want to keep watching or what?
The tumor grew and spread during Taxotere and Adriamycin.
Thanks so much for your input!
I'm learning so much!
ma

Sheila · 07-08-2006, 04:20 AM

Mary Anne
They will continue to watch you via scans, Brain MRI's etc, but I don't put alot of faith in the tumor markers...to many of us have false readings, ie high tumor markers when scans show stable....I rely more on symptoms and scans.....
Hope this helps, and welcome to our group!

Mary Anne in TX · 07-08-2006, 05:34 AM

Thanks for your reply, Sheila!

I think I don't trust myself to watch for symptoms, pain, etc.
I thought that my tumor was shrinking when I did the first 3 chemos before surgery and all the time it was growing and changing shape. And what kinds of pain or whatever are indicators of progression?

I have always been such a confident person, but don't seem to be trusting myself to know about all this.

ma

StephN · 07-08-2006, 12:45 PM

Mary Anne -

I had a lumpectomy then had the Adriamycin and Taxotere. These drugs did not work for me either as six months after finishing those rounds my liver was full of tumors and it was starting into my bones.

My tumor markers went real high - higher than yours - during the Taxotere and then came back down to normal after 3 months off chemo. But the markers were elevated at the next 3-month check and this is when the progression was found.

When you are finished with the chemo, you and your med onc will have a consult and set up a plan to follow you. If I were you, I would ask for close followup. Mine ordered a chest x-ray to go with the tumor markers, but the chest x-ray was OK. (Lung is often the first place for mets to appear.) With the elevated tumor marker and physical exam it was off to the CT scan and there were the trouble makers.

Since going through successful treatment of Navelbine and Taxol for my mets, with the addition of Herceptin and still taking that, my CA 27-29 has been very stable. The only problems that have occurred in 4 years were in my brain and the CEA marker was a good indicator of the brain mets.

Until you find out that the tumor markers are NOT good indictors for you, I would keep asking for them.

If your tumor marker seems out of whack and scans are not showing any active disease, there is a new test that looks especially for HER2 cell sheds in the bloodstream. It is the BAYER test.
Hope this helps.

Mary Anne in TX · 07-08-2006, 04:24 PM

HI StephN!

Thanks so much for your reply. As I read your reply it rang so true in my heart. I didn't realize how very much I needed to "talk" with others about all this. I'll ask to see Dr. K this Friday when I go for the next round. I have moved to San Antonio to be closer to care (I'm 3 1/2 hours away). I have a trailer here and a son and grand kids, so have a great reason to want to come! But, what I was finding is that he was wanting to make my treatment convenient for my travel back and forth and I just want to find something that works.

What were your side effects with Navelbine, Taxol, and Herceptin. I'm on Taxol, Carboplatin, and Herceptin now and don't have "dramatic" side effects, but just don't feel good for up to 7 - 10 days after treatment (every 2 weeks). I can work from home, but am getting so worn out with being tired, & the feeling so short of breath. I can hardly walk up a few steps the first 7 days. Gets better the second week, but never anywhere near normal.

I'm willing to do whatever will work. I've only done this since January, but I just want to know that something is working. Oh, I know that's asking a lot!
Thank you so very much for responding.
ma

StephN · 07-08-2006, 10:39 PM

Hi MA -
This web site did not exist and I had to go through all my trials and tribs with my early stage and then moving to stage IV with only a couple of friends here from my cancer center who were also getting bad news when I was. Three of us still support each other as best we can. Long term survivors and have the same med onc.

You also have the added advantage of getting Herceptin early, while I had to wait for disease progression (which was not long).

My treatments were all weekly except for the Taxotere. So, I had little time for the ups and downs of less frequent infusions. Just enough time for the red and white cells to get back up for the next treatment.

Yes, I was pretty tired and got to where my knees would hardly work. We have stairs and I depended heavily on the railing! I also had shortness of breath and my blood pressure was weird as my heart was working trying to move my blood to get more oxygen. This happens when the red count is down and our body tries to compensate. I ate lentils and other foods rich in iron.

Any more questions, just ask and someone will answer.