Anne Marie : Well more bad news went... - SHARE Metastatic ...

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Anne Marie

Anneespo profile image
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Well more bad news went for 4 week check up Tuesday and blood work showed CeA level went back up to 120 I have been on xeloda and tykerb for 4 months since my reoccurrence to the lymph nodes in chest wall at first level was 160 than 115 than 15 and now back up to 120 going for another pet scan anybody have these kind of issues

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Anneespo profile image
Anneespo
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Nancyjw profile image
Nancyjw

Dear Anne Marie, Don't give in to numbers -- you are stronger than the numbers. You can see that they go up and down and they can go down again. Don't let your thoughts go down with the numbers. You are a survivor . Someone once said where your mind goes, your body follows. Please try to keep your mind on the good things in your day and stay strong

Sending prayers and hugs your way.

Jan_Schnabel1 profile image
Jan_Schnabel1

Nancy's right Anne Marie. I know because I have to take my own advice. I was on Ibrance for less than 3 months and the numbers that came in at my last appointment on Tuesday prove it's not working and I lost it! I allow myself 24 hours of feeling sorry for myself, then it's back to the battle. So...on to Xeloda, hopefully it will prove to be the answer for me, at least for a while.

Hang in there! They learn more every day!

Jan

Anneespo profile image
Anneespo in reply to Jan_Schnabel1

Xeloda is a well tolerated drug really no side effects and no hair lose. It worked in the beginning real fast than justed stopped . How is ibrance?

Jan_Schnabel1 profile image
Jan_Schnabel1 in reply to Anneespo

Other than it bottoming out my white cell count, I had no side effects with Ibrance, it just didn't work for me. Three months in and my tumor markers just kept rising.

Hopefully the Xeloda will be a better option.

Prayers to all of my thriving friends!

Jan

Rhwright12 profile image
Rhwright12 in reply to Jan_Schnabel1

Good advise Jan! I allow myself a pitty party once in a while then the next day u move on!

-Praying the come out clear!

-Heather

Kats3 profile image
Kats3 in reply to Jan_Schnabel1

Hi Jan,

I've never been on Ibrance because it was just coming out when I was diagnosed and not enough was known about it. I was put on Arimidex, Tamoxifen, and Faslodex shots with limited success. I've been on Xeloda for almost 2 years now with different dosages changed up now and again. It's worked the best for me so far.

I wish you good luck with it. I believe Affinator and Aromasin will be waiting in the wings should I start resisting the Xeloda.

Let me know how the Xeloda works for you.

I'm on 2,000 mgs every day for 1 week and then have a week off. The dosage has been adjusted about 3 times for me. At no time was I on 3 in am and 3 in pm for 2 weeks on and 1 week off as recommended in the dosage brochure. That's when the hand and foot side effects really kick in. I've never experienced that, thank goodness! My Oncologist tries to strike just the right balance of having the medicine work, but also allowing the patient to have as few side effects as possible. He's smart.

Wishing you well! Kats3

Dartyus profile image
Dartyus

Have not had that experience. I am currently taking xeloda. Will be praying for you. It is hard sometimes to be strong. Remember we have God who understands out pain. He is always present and will always see us through.

Aelgersma profile image
Aelgersma

I'll have to look. I have a very high tumor marker

interesting. I was diagnosed in 2013, went through radiotherapy after R mastectomy and letrozole kept all under control till October 2016 when tiny liver met found in 2014 suddenly reappeared and was much larger with CEA up to 60 and CA125 over 40. Been on Xeloda - now in cycle 8 at 2500mg - and liver met greatly reduced and CA125 well down BUT CEA continues to climb after initial decrease and is now 95. Nuclear bone scan and regular CAT scans show nothing at all except the state of the liver met shrinkage. Oncologist puzzled but thinks Xeloda may be generating some inflammation of some sort (I do have arthralgia in feet and ankles) Rather limited here in South Africa to loads of second opinions etc but my oncologist is also well respected in the country so will stick with it and continue to feel OK!

Ibelong profile image
Ibelong

Yes. My markers bounce up and down. Just Friday my last monthly test showed them up. They have not gone up in great numbers so my doc is not doing scans yet. He plans to do another in July. 6 months after my last scan. He said it's hard to tell with markers alone. Since I have no symptoms at this time and all other tests are "good", he feels that it's okay to go without scans unless something comes up. I am being treated currently with Ibrance, letrozole and xgeva after recurrence.

I hope that the precautionary scans you are having will show that you are stable. Crossing my fingers.

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