TYKERB/XELODA done for me......maybe

[IRENE FROM TAMPA]

Hi all -

I went to my onc yesterday after my scheduled blood work and found that my CEA tumor marker had doubled since my last labs.

CEA - 7.5 UP FROM 3.4
27-29 - DOWN TO 38 (WHICH IS GOOD)

Since I seem to be to be more sensitive to the CEA, we are thinking that my remaining tumor is once again starting to progress. This always seems to be my pattern. In any event, I will see him again next week to talk about setting up scans and next plan of action if we find this is what is happening.

I dont want anyone that is on this combo to get discouraged by this new's but since we "as a sisterhood" share all of our thoughts and feelings, I wanted to get some advise. I have to say that I got a YEAR out of this combo and it's been years since I had that much time on any one drug. SO THAT IS A VERY GOOD THING.

I am considering trying and will speak to my onc about trying AVASTIN (he was on vacation yesterday so I actually was seen by his assistant ) in combination with a chemo.

I have heard good things about Avastin and that is the drug I was going to try before I found the Tykerb/Xeloda trial. Has anyone had any experience with this chemo and/or in combo with something else. The concept of how it works sounds good anyway. I was thinking hopefully staying on the Tykerb and adding Avastin (and maybe something else)
WOW - I never in my life thought I would be discussing so much about medicines and here I am.

I get my best info from this board and I know lots of us have had experiences that not even the doctors know about.

Anything anyone can bring to the table would be great and I will check out with my onc and see what he thinks. I am not even sure if I can be approved for the Avastin since it has not been actually passed for Breast Cancer as yet.

Thank you again ladies and please know that this combo is a very good thing. Like I mentioned, it got me one whole year and could even do better for you.

[Esther]

Irene, I don't have any experience with Avastin, but your comment on how your counts differ on the CEA and CA 27-29 caught my eye.

I've never had the CEA done, as the CA 27-29 seems to work very well for me.

Have the values of the two always differed, or is the CA 27-29 just slower to react to changes in your mets?

[Sheila]

Irene
Although I had to be taken off the Avastin for a month to get dental work done, it seems to be working wonders on me in combination with Taxol and Herceptin...after 3 treatments, I could barely feel the nodes that were the size of large grapes. My onc. also has seen great results with Avastin and Abraxane, which is what she wanted for me, but the Insurance would not pay for Abraxane....what about trying it with the Tykerb...like a Tykerb Avastin trial like Chrisy is on...I am hoping if you go on it, it works wonders for you...just keep and eye on your Blood Pressure. Chrisy and I have both had to go on medication due to elevation of B/P.

[IRENE FROM TAMPA]

Hi Esther -

I asked why my CEA would be higher and my 27-29 actually went down. I know that they tend to use the reliability of the 27-29 more, but for some reason in my case I seem to respond to the CEA better and faster. It could be like you say, the 27-29 just takes longer in my case. If it turns out that I do in fact have progression, they will eventually start to rise. Maybe my tumor has not grown as yet but the activity is starting up again. Through the years, the CEA has proven (for me) to be a good indicator something is starting to happen. I guess I should be grateful for this pre-alert if you would. That is why I insist of having one done at the least every month. This keeps us "ahead" of the game.

Hope you are doing well Esther. I have not been reading the post as often as before, so I tend to forget what is happening with everyone.

[IRENE FROM TAMPA]

Good to hear your combo is working for you.

The last time I was on Taxol (second time around with it) it did nothing at all for me in combo with Carpo/and Herceptin. I was on Abraxane a few year ago and I went 8 months on that one. Good drug too. I liked Abraxane. Easy to tolerate.

I am passing those combo's around in my head also. Maybe they will work better in combo with a different drug this time. Who know's. Have to try to see.

I guess we just have to keep trying to see what will work for a while anyway. My onc. just started on a new trial (it has a number for a name) so am not even sure which one it is. He was so excited about getting it and possibly having it as a back up for me, but since I had a stem cell transplant (back in 99) I could not quilify.

This is a Genetech trial and my trial co-ordinator is very upset that they would dis-qualify a person that had a transplant so many years ago. She was going to check on this.

Keep doing well Sheila

[ellen]

Dear Irene,

I do not post very much but read every day. I am in a trial with avastin and tykerb after six months on xeloda and lots of herceptin. I was also on too many other drugs for me to remember right now. I had to change oncs to get into the trial which is at Memorial Sloan Kettering in NYC. I have done incredibly well. All my markers are now in the normal range after 6 weeks of treatment.

My home onc could not get insurance approval for this combo that is why I went into the trial. They are still recruiting throughout the country for people. Have some minor side effects but am doing well. I became stage 4 with a pleural effusion to my right lung and it recurred and that's when I went to sloan.

I truly believe you just have to find the right chemo. Wishing you all the best,

Ellen

[Barbara H.]

Hi Irene,
My CEA is also the marker that rises. I don't have any ideas for you at this point, but I hope the Avastin or a combo with it works for you.
Barbara H.

[IRENE FROM TAMPA]

I was thinking that since Tykerb has been approved now that I would be able to take it if my onc. recommends. I am not sure about the Avastin but I was so glad to hear that it is working well for you. I am hoping that this will be the way to go for me next if needed.

It is so good to have so many "experienced" voices to listen to.

Thanks again Ellen.

I will be meeting with my onc. Wed. coming and I know he will probably want to set up scans to confirm what is happening.

Wish me luck.

Take care and good luck to you

[tousled1]

Irene,

I can't offer any suggestions on chemo combos but I do offer my support. I will keep you in my prayers that whatever combo you and your oncologist come up with will be the magic bullet.

[sassy]

Irene,

Keeping you in my thoughts and prayers.
________
SeductiveTSKhim live (http://camslivesexy.com/cam/SeductiveTSKhim)

[Joy]

I admit I am a little discouraged for you and ,selfishly, myself and yet I totally get that this has been a long ride for a combinaiton to work. I'm hoping to follow in your footsteps as we have some similarities in our profiles and responses.

Tykerb/Avastin is one I keep in my head for the future. And you did so well on a the trial with T/X that maybe you're just meant for trials-you are cutting edge, my friend. I also think about SIR spheres as a future possibility.

And you know best what are your better indicators of progression, but I'm still gonna hope that all is well!!!!!!

Please keep us posted on all that happens this week and I'm sending you a lotta love!

[chrisy]

Hi Irene,

I am, as you know, in the same Tykerb/Avastin trial Ellen mentioned. It's been an easy combo with only some bp issues that for me have been easily managed. The trials are at UCSF and MSK only, I think.
At 6 weeks and at 12 weeks, scans have shown "stable" for me on this combo. So it has worked in terms of shutting down the growth. I'd of course rather see some disappearing acts and have not given up on that yet.

Research on Avastin indicates that it has not had good success as single agent, but has had fabulous results in combination with chemo's especially as first-line in the metastatic setting. Nonethless, I think this is a viable option for you to try even though you've had a lot of treatment. There are also other trials with Avastin.

Good luck, warrior gal! Keep us posted on what you decide.

[mamacze]

Hi Irene,
I am just heart sick that your markers are on the rise again. I think you should consider the tykerb/avastin trial...I know you won't let a bit of travel stop you...shoot, I made over 10 trips from CT to Seattle for the vaccine trial, and it wasn't bad...if tykerb/avastin is what is best for you now, than I know that you will just do what you have to do to get into that trial...I am sending alot of love and sister worry your way...please keep us posted on your progress...love Kim from CT

[Adriana Mangus]

Dear Irene:

I'm not familiar with CEA I do get the CA 2729 test at least every six weeks.

My doctor mentioned Avastin way before he put me on Navelbine.
I was not aware that it has not been approved for breast cancer.

I was considering Avastin since I had been on navelbine before (2003)
but decided to go back to Navelbine due to tumor marker rising, (May 2007) and it continues working for me.

Whatever the course your treatment takes, please let us know. You have been doing terrific with this past combo. Can you go back to that one after awhile....? since it did work for you.

Sending you positive vibes and a BIG SISTER HUG. Much love to you.

[Shell]

Hi Irene-

sorry to hear about your markers - they've never been reliable for me. You can take avastin and tykerb together - obviously the trial permits it - neither is a "chemo", I think - looking at your signature, you've already tried abraxane, but not taxotere. I progressed to taxotere, so I was skeptical of abraxane, but I am able to breathe again, so am quite pleased...

besides taxotere, what about doxil?

Keep us posted.

Kind regards,

[Believe51]

Hello My Friend, wondering how you are doing and waiting for an update from your journey. I know you may be waiting for results but we will be here when you do get them. In the mean time prayers and hugs are being sent your way today & always.>>Love & Miss Ya>>Believe51