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Topic: Lousy Scan Results & Change to Xeloda /Tykerb

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Aug 13, 2007 10:22AM

Anita1969 wrote:

Hi you guys,

I know I can always count on you for some sage advice, a cyber-tissue and HOPE.

I have lately been on Gemzar and Herceptin. Herceptin for a while. My new ONC did not feel my dose of Gemzar was enough. I had a scan last week. Well, the results are in and she was right. Everything is a little bigger. (Liver mets) So much so that we decided to bale on Gemzar and stop Herceptin in favor of Xeloda and Tykerb.

There is some question about bone mets. I was originally dx 7/06 - Stage IV, Her2+, liver mets and possible bone mets. Bone scan came back clean, CT scan shows bone concerns. In May, I had another bone scan and it too came back clean. Liver biopsy another story. I had a CT on 8/8/07. That is when everything was bigger and the CT continues to show bone mets(?). So ONC ordered another bone scan for next week to get a baseline for these new drugs (and possibly start me on Zometa).

Ladies, I need some positive energy and prayers. I have a little boy, 4 1/2. This diagnosis still (a year later) seems like some outrageously insane awful nightmare. Any helpful hints or things I should be on the look out for with these meds? Tykerb once a day 21 days, 1250 mg; Xeloda 2000 mg twice a day 14 days on, 7 days off.

I am just really frustrated and sad and scared right now.

Anita Log in to post a reply

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Aug 13, 2007 10:32AM debman wrote:

Anita-
I know where you are at. I just got bad news last week and I'm switching to Gemzar next week.

Please just remember, you just need one drug to work and there are tons out there for us. I was on Xeloda for three years (the median to progressing on this drug is 6 months) - it was my miracle drug. I'm now searching for a new one but I KNOW it's out there- I just need to find the right one.

In 5/04, I was told that I would not walk my twins in to kindergarten. At the time of my diagnosis, I had a four year old and 2 year old twins. I AM walking them into kindergarten on 8/22.

Please also remember that as Susan Love states - if just one person beat the odds, there is nothing in your way from being the second. (or something like that)

I'm sending you lots of prayers and positive energy. You CAN do this.
Debbie
Dx 5/27/2004, IDC, 2cm, Stage IV, Grade 2, 1/28 nodes, mets, ER+/PR-, HER2-
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Aug 13, 2007 10:52AM Anita1969 wrote:

Thanks Debbie! I know the odds are not in our favor, but we can't allow ourselves to be counted in the statistics!

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Aug 13, 2007 12:33PM BrandisMom wrote:

Hi Anita!

While this whole BC thing really stinks, I've come to the conclusion that the worst part of all is waiting on test results and deciding on new treatments.

I'm in the same boat with you. My "miracle drug" (Sutent) is finally slowing down on working for me. Doc says it's time to change before things get out of control. It's been 2 years and I was used to that regimen.... I could function on it. Now he's talking Xeloda and Avastin. (I too have bone/liver mets)

Stay positive. Thank God there are so many different drugs out there for us to try! Your onc is bound to hit on the right one for you!

We're all right here with you, holding your hand. It's going to be ok..... it really is!

Hugs,
Debbie
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Aug 13, 2007 01:02PM Isabella4 wrote:

Anita and Debbie and Debbie....just sending great big hugs to you all in your little boat.
Look forward, think positive. Lots of love to you all. Isabella.
Dx 5/14/2003, IDC, 1cm, Stage I, Grade 1, 0/26 nodes, ER+/PR+, HER2-
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Aug 13, 2007 01:33PM katie11 wrote:

Dear Anita,

I am so very sorry you are facing these new fears, but there is still lots of hope for you and all of us. I was diagnosed July 06 with bone mets from the start and the first chemo I had (the red devil, as it's called) led to progression and, like you, I was terrified. I moved onto xeloda and taxotere which had fantastic results for me - bone mets disappeared, shrank and stabilised. I know there are lots of other women on these boards who've also had great results on the drugs you are going to be taking and I am sure they will be along soon to tell you of their success.

No doubt about it, Anita, you will be there to raise your lovely little boy - just stay strong.

Hugs,

Katie xoxox
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Aug 13, 2007 05:16PM WendyV wrote:

Hi Anita,
Well we share a few things in common - liver mets, bone mets, Her2+, in October it will be one year for me - and I have a little boy who will be turning 4 very soon (I also have a 14 and 12 year old!) Your right it is an outrageous nightmare that unfortunately we are all sharing. I don't have experience with Tykerb and Xeloda, but I'm excited that they are in my bag of tricks if the Herceptin stops working. There has been lots of good news about Tykerb and Xeloda and I'm having good feelings about it working for you! Heck your a Mom of a 4 year old little boy, YOU can do anything including kicking cancer to the curb!!! I'll be thinking about you! I'm sending lots and lots of positive thoughts your way!
Wendy
Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.( bone,liver,brain,lung mets) Dx 10/9/2006, IDC, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Aug 13, 2007 05:48PM LinTol wrote:

Hi Anita.
You are certainly not alone in your fears. I have had positive results with my treatment, but I am fearful on needing to switch due to rashes, etc. But my onc is very positive and encouraging stating that there are many options out there. And it seems that most of these are tolerated well.

I have 2 daughters, 3 and 5. And I will be taking my 5 year old to kindergarten in Sept! I pray every day to God to let me be here to raise them.

Positive thoughts and prayers are being sent your way! Good luck with your new treatment! Let it kick cancers butt!
Linda
Linda Dx 5/2006, IDC, Stage IV, ER+/PR-, HER2-
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Aug 14, 2007 06:51AM jacqniel wrote:

Anita - Praying for a new tx that will send the beast packing. Hugs, Jacque

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Aug 14, 2007 08:02AM Shepgirl wrote:

Hi Anita; I really understand the fear- I think we all do.

I noticed your in Rochester, I PM you my phone call and we will chat. Sometimes that helps with the fear.

Shepgirl.
Dx 12/23/2004, IDC, 2cm, Stage IV, Grade 2, 2/22 nodes, mets, ER+/PR-, HER2-
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Aug 15, 2007 01:38AM lesbianb wrote:

Post deleted by bco-administrator

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Aug 15, 2007 01:48AM WendyV wrote:

moderator notified!

Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.( bone,liver,brain,lung mets) Dx 10/9/2006, IDC, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Aug 17, 2007 03:17AM EstherCA wrote:

Anita, I have been on Tykerb/Xeloda for 4 months now and it is very tolerable. Your Xeloda dosage is very high, mine is half that, I take 1000 mg twice a day.

If you start to develop hand and foot sydrome, you can ask your onc about reducing the dosage, there have been studies showing that reduced dosages of Xeloda work just as well.

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