Tykerb/Xeloda didn't work...very scared
 

Hi all,

Well, T/X didn't work and I'm very fearful with Tykerb out of the picture and herceptin questionable. We meet with the Onc on thursday to determine the next course of action and I have also emailed Sloan about a second opinion. I hate to burden all of you who are fighting this horrible disease but I'm very scared and want to be as prepared as possible when we meet with the dr's.

Brief history...diagnosed with stage IIIa her2 neu breast cancer (10/03). After dose dense AC-Taxol and radiation, spots were found in her lungs and liver in June. PET only showed in liver but CAT showed in lung as well. Started herceptin/gemzar, which thankfully worked very well and kept her NED from 01/05 until 01/07. She's 44 and in GREAT health besides the cancer.

I welcome any thoughts or recommendations.

Hugs and thanks to all,
Eric

Quick question for Eric...
 

Hi Eric,

Real sorry that T/X didn't work out for your wife, Caryn. In your previous post, you had said that Herceptin was questionable. Why is that?

BTW, as some of you may know, some chemo drugs could be repeated in one's course of action, if only a break between the chemo drug would be long enough in his/her onc's eyes.

I'm on Tykerb / Avastin trial. My onc once said to me that I could switch to Herceptin, should Tykerb fail on me. Hope not!

Best of luck on your wife. Caryn is very fortunate to have such a supporting husband like you! :-)

God bless...

Eric
I agree with JoJo, some chemos can be reused.. what about adding Avastin to the Tykerb, or to Herceptin, and maybe some Abraxane in with it....all of these seem to show great promise on stubborn mets...from my own experience, Xeloda does not work on everyone, cancer gets smart, tiem to throw a new challange to it. I am hoping you get good news. Keeping you both in my prayers.

Answer to Eric, and "Hi, everybody!"
 

Eric,
I am so sorry Tykerb/Xeloda did not work for your wife, but there are many treatment options that she hasn't tried yet. I do not have experience with Tykerb/Xeloda, but her history is similar to mine. I am 45 y. old, diagnosed in April 2005 with Stage 3C, her2+, er/pr-, IBC. Had EC with Taxotere, then double mastectomy, radiation, then spots were found in my lungs and liver, PET scan only showed in lungs, but CT scan showed also in liver. I had Taxotere/Herceptin for 6 months, then changed to Nalvabine/Herceptin, and I have been on it for a year now. Since October 2006 the several small liver lesions are gone, and now the small lungs mets are most gone, I just have 1 nodule (less than 1 cm) for a while now that is almost gone, and 1 lymph node that is stable. And the side effects of Nalvabine are minimal. My hair grew back while on it, no premedication, no nausea, just some neuropathy in hands and feet.
I think Nalvabine/ Herceptin is a very good combo, and it might help your wife. And I do not think that herceptin stopped working for her, Gemzar did. Since Tykerb/ Xeloda is not working, I think she could try Herceptin + other chemo (Nalvabine, Abraxane) or a clinical trial with Avastin. BTW, a second opinion will be very helpful.
I agree with Jojo that Caryn is very fortunate to have a supportive husband like you.
I hope and pray that she will find the right chemo soon. God bless both of you.
KarlaV.
........................................Please Read.............................................. ...................

TO ALL WONDERFUL WOMEN AND MEN OF THIS FANTASTIC SITE

I would like to take this opportunity to say hi and to thank all of you who, even without knowing, have been helping me a lot through my journey during the past 2 years. Above is my history for the first time. I do not post often, but I read your posts every day, and they are a great source of information, inspiration and hope for me. I do not know what I would have done without your help. I learned so much through all of you. You are all my hero, my support group, my family. Thanks a lot. You are all in my prayers.
I will try to post more often from now on.
Also, special thanks to Cristine and Joe for this wonderful and so helpful site.
God bless all of you.

Karla V.

I agree that Herceptin and Tykerb are not necessarily out of the picture for your lovely wife! They can still be used in combo with many other different things. Especially Herceptin - please don't give up.

Eric,

I don't have much to add besides that I am under the impression that Sloan has some Her2+ drugs that are in trials and hopefully will be available and helpful to your wife.

My best,
Jen

Hi Eric!
I agree that it might not be the herceptin that quit working but the chemo. When I first started Taxol & herceptin, after Adriamycin & Taxotere had no impact, I told my doctor that everything in me said that it would take some searching to find the right combination. I did put the decision in his hands, he is wonderful and so smart, but I just felt that I would need lots of trys. Perhaps the reason for my intuition was that as a kid they had trouble finding things that worked for me. I had rheumatic fever as a kid and went daily for antibiotics for 6 months to a year (can't remember anymore). Anyway, it has always taken lots of "whatever" to kill the disease, kill the pain, etc.
But anyway, I think those dastardly little cancer cells are so sneeky and so very different in each of us. Please be hopeful and creative about trying new things!
We'll all be cheering for you two to find just the right combination very, very quickly! I've learned from this batch of warriors that there is always one more thing to try, if we're willing!
Keep the faith and keep us informed.
Praying and believing for you both, ma

I thank you all for your responses. I am hopeful that herceptin will still be in the picture but I got nervous that the Tykerb didn't seem to work and since it targets 2 of the Her's rather than just her2 like herceptin it didn't bode well for either. Hopefully the Onc will agree that Herceptin should remain in the picture. I also forwarded him info about the her2 trials at Sloan so I'll see what he has to say tomorrow.

Hope everyone is having a great 4th!!

Love to all...Eric

Eric, please keep in mind, too, that Tykerb may also not be out of the picture... it is still so very new and more trials are in the works for it to be used in other combos... and potentially WITH Herceptin and a chemo.

Eric;

Have you been using the Serum Her2 test to monitor the effectiveness of Herceptin and Tykerb?

Cathy

Dear Eric
I am sorry that Xeloda/Tykerb didn’t work for Caryn. None the less, Xeloda is not an effective drug for many women and by no means should you give up hope on this. It is very apparent however that a taxane with Herceptin did the trick before. Perhaps the weekly schedule dosing of Abraxane with Herceptin will work well. Lolly is using Abraxane (weekly) with Tykerb and it is going well too. You cannot make the assumption that Herceptin stopped working (just because when Caryn was using it alone she started to progress), she just needed alittle chemo assistance to help push it back again. You have tons of options left but a taxane worked well the first time!
<O:p
Also – what did you mean by “failure” – a lot of progression or just stable with no reduction of tumor load?
<O:p
I am thinking about you and if I come up with anything else, I’ll write. Big hug to you

Well, met with the Onc and happily Caryn is going back onto Herceptin but this time with Taxotere.

Becky - by failure I was referring to Caryn's tumor markers going from the 40's to the 140's and most recently to the 240's. CT scans are planned but onc said that the rise in numbers mean cancer activity even if no progression in disease. Thank you for the continued thoughts...big higs coming your way as well. :-)

Cathya - Caryn's Onc is very skeptical of the Serum test and since the markers have been a pretty reliable tool for Caryn I haven't pushed the issue. Do you see any other reason that it may be worthwhile?

Hi Eric,

Here are some links that I was just studying today from the Chicago Oncology Conference.

I know these are still trials, but maybe you can use some of this info when talking to Caryn's Oncologist.

http://clinicaloptions.com/Oncology/...ules/1004.aspx

http://clinicaloptions.com/Oncology/...ules/1043.aspx

Best wishes,

Odette

Eric;

My cancer is driven by estrogen and her2. I take arimidex for the estrogen and am currently off herceptin for heart reasons. I use this test as an indicator of when I should begin taking herceptin again....in the hopes that it will provide early information on possible metastises prior to a tumor actually developing. I am also intending to use it to see how effective herceptin actually is for me. If my Serum Her2 level drops (depending by what percentage) when I start taking hercepin this will indicate its effectiveness. I just had a test today and expect to begin herceptin shortly.

Cathy