Back on Herceptin + Tykerb

Esther · 10-01-2007, 10:27 PM

I had my first infusion of Herceptin today, since I stopped taking it in
April. I still don't know if the rise in liver functions and bilirubin was a blip
or reallity.

But after checking around a bit, it didn't seem that Herceptin and Tykerb
were contra-indicated, or there is no proof of this. So even though I am still scheduled for a pet/ct on Wed, I went ahead and started Herceptin again anyway.

Herceptin alone kept my liver and bone mets at bay for almost 2 1/2 years, I always felt nervous stopping it. I feel better now that I have my trusty little H in my veins!!!

Whatever else I find out about my liver, I think I will continue to stay on
Herceptin and Tykerb until I find a reason to not do so.

As far as the RFA goes, right now I don't know if there are any liver lesions that need treating, I won't find out until after the pet/ct on Wed. But it does appear that alot of facilities do not like to do RFA if there are other sites involved in mets. Wonder if you can just say you have mets to liver and skate by like that and not mention other sites if they are controlled, or NED.

I am still researching my options at LLUMC, UCLA and Cedars-Sinai. All three of those centers perform RFA for liver tumors. Stanford perfroms Cyber-knife for liver mets tumors as well. I'm getting my information ready, in case I do have the need to move quickly with one of these options.

hutchibk · 10-01-2007, 10:37 PM

I would love to keep up with your research, Esther! In the event that I ever show mets to liver (my bilirubin was ever so slightly elevated 4 weeks ago, but not this week when we did labs)... I need to have my research in order for presentation to my onc. I think he gets a kick out of my presentations, and it really contributes to our game plan.

Best of luck this week.

Carolyns · 10-02-2007, 08:27 AM

Hi Esther,

That is good news that you got what you think you need by adding Herceptin back into the mix. I find that I need to drink extra water and sometimes go on the bland diet (is that what the call it?) from time to time. I am still hopeful that you have experienced a blip on the screen and that you will continue to be stable or improve with this combo.

Brenda - Just like you, I always prepare for my meetings with my doctor and try to come well prepared with questions and findings to discuss.

Love, Hope, Peace,
Carolyn

Lala · 10-10-2007, 06:43 AM

Esther
Wishing you the best in your scans and hoping it shows a clean liver.
I hope you tolerate the Herceptin and Tykerb combo; it certainly is interesting combo. Once again you are paving the way. Stay strong.
Hugs,

Esther · 10-10-2007, 08:00 PM

Well I got back the results from the pet/ct scan and according to the results, my liver does not have progression. There is only one lesion that may be scar tissue and a long shot second small one barely visible.

This after the Feb 04 scans showed "innumerable mets lesions too many to count" on my liver!

I am scheduled to consult with the specialist at LLUMC next Tuesday the 16th of Oct at noon...maybe I should take him sandwich, I'm cutting into his lunch!

I will also check into topo therapy at City of Hope and cyberknife at Stanford. I'll keep the board posted on what I find out in case anyone else is thinking about this.

I may not need these options right now, but I want to be a patient at these centers and know my options, just in case I need them and need to move quickly.

Bev · 10-10-2007, 08:16 PM

Congrats Esther. Sounds like good reults to me. Let us know how it goes. Bev

StephN · 10-13-2007, 01:27 PM

Wow, Esther -
I am so glad that the PET did not show up anything to be worried about right now. I have had liver functions move a bit from time to time, but always an anomoly.

Almost missed this lastest in your ongoing cancer story. Need to check the other forums in this site from time to time! Seems there was some research a while back that showed Herceptin could work well with Tykerb. Hope your other mets are getting "hosed" by the new combo.

retrobetty · 10-22-2007, 03:26 PM

Hi has anyone been taken off Herceptin for long periods of time? I have met on thorasic spine that has not increased in size for the past year and half, I have been off Herceptin for a year. Every doctor keeps calling a me a strange or difficult case. Anyone else been lucky enough to stay off for long periods I am having hard time hearing not to do anything but wait. Hanging out waitting for it to show somewhere else is not my idea of being proactive. Thanks

chrisy · 10-22-2007, 04:12 PM

Esther, good news that there is so far nothing to RFA. Question, have you looked into whether insurance would cover this procedure? I saw a Blue Cross/Blue Shield policy statement which indicated that they would not pay for this procedure or surgery for breast cancer patients. Just asking.

tousled1 · 10-23-2007, 05:18 AM

Esther,

That's great news! I'd take the sandwich and probably one for yourself as well. You can have a "working" lunch as I know you'll have many questions you want answers to.

dajawood · 11-15-2007, 10:06 PM

Ester,

I received the same diagnosis almost verbatium this past April. Your message gives me hope that it may be possible for my liver mets to improve. Thanks for sharing.