herceptin failed me...?

Hi there!

I havent been here for along while, trying to forget about the disease. Getting ready to live without therapy after 2,5 years...

Had my last round of adjuvant Herceptin out of HERA trial planned for March 9th.
Was in the 2 yrs. arm of treatment.
About 5 hrs. after my last treatment I was told dx of 3 liver mets after the routine ultrasound in the morning came out "suspect"....

There is no "f" word to describe my feelings of getting stage 4 dx exactly the day I was planned to have last tx!
Had "finish tx" party planned March 12th... didn´t cancel it because I didnt want to sit home knowing there WOULD have been my party.
And it was a WONDERFUL party with lots of friends. The ones who didnt show because "they just couldnt" - and there were some of those - well, we´ve talked since and I understand.
The ones who came and had fun for a loooong evening - I love them for celebrating life with me - no matter what....

Had PET y´day and results say no more spots than the 3 in the liver. Been told they will try "thermoablation" (semisurgical removal with heat) on them.
Surgery cannot be done as spots are on both sides of liver - and btw. thanks but wouldnt need some more weeks of aftersurgical pain right now... *g*

After that another chemo - probably Xeloda w/ or w/out Herceptin (trial "Herceptin beyond progression")

Well - a bummer..... but tell you what: I STILL WANNA SURVIVE!
I want to live my life, cry my tears and most important of all: laugh my laughs!

Thanks for listening and greetings from Vienna, Austria, Europe!
Alice (31@dx, 34 and counting now)

[Isabelle]

Hi,

Don't lose hope yet. Sounds like there is still lots for you to do. I was told surgery to the liver is not a good idea. There are cancer cells in your liver so even if you take at the larger tumors you'll get more cancer and have less liver to function with.


Herceptin works even better in combination with other drugs (I was told by my oncologists in USA at Dana Farber Cancer Institute in Boston) than all by itself. Now that you are stage 4 you will see will learn that there are a number of combos for you to try.

I started with a nice easy combo. that did not destroy my life at all, It was Herceptin plus Navelbine weekly. No hair loss, just lowered white coutns, we lowered dose of navelbine 20% and then I was fine. Within months, no more liver met and much much lower tumor markers. I did this for a year, could have stopped sooner but we decided to go for a year. Now I am on maintenance herceptin every 3 weeks and watching to see.

I would make sure you remind your doctors you want some quality of life. Unless the liver mets are making you so sick right now, say you are planning to be around a long time and don't want to destroy your body and use up all your options right away thank you very much!

You can move on to the big gun drugs when/if you need then.
Hang in there. You will see lots of good stories about herceptin here.

Love,
Isabelle

Alice,

Isabelle gave you great advice. I hear (and read on this site and others) about Herceptin in combination with other drugs doing good things.

Sure that wasn't the news you wanted but there are plenty of us stage IV people out there doing just fine. Take care of your liver mets (show them who's boss) and report back to us so we'll all have a little more hope that this is a disease that can be "treated".

Best to you.

Peggy in Florida

Alice --
My wife is also stage IV and has been for five years now. She recently had a lung tumor show up and went through surgery. The Doctor has her on Xeloda now and is doing fine. Her recent Scan came out clean and the doctor was thrilled. You need to know that they are finding new drugs to fight this disease every day. Take a look at the clinical trials (on this web site) going on for HER/2neu related cancer, especially the vacine trials which are looking very promising. There is a future out there for all of you, we just need time to get these trials aproved by the FDA.

Regards, Bruce

Hi Alice, i get it! It just knocks the wind out of you to hear this crappy news. We know! I was 34 when redxed with stage IV (humongous liver mets, some lung spots), single mom, 2 young girls. i am 37 have two jobs,volunteer at school, have my hair and with the team i have assembled, i am doing well. I also plan on doing well. you are obviously a strong and determined woman-this will make the difference. Esthers' posts, really helped to remind me about the chronic disease mindset. No, we don't want to have a chronic disease, but neither do we want to feel icky all the time. Quality of life IS possible. Plan a lot of fun things with your fabulous friends ALL the time. It makes a big difference. Keep us posted.
love, joy

Hi Alice,

I am sorry to hear that herceptin didn't work for you.

I was wondering if your doctors thought that the laser ablation technique developed by doctors in Frankfurt might be helpful. I know Vienna is a long way from Frankfurt, but the results of the study were so promising (even without herceptin) that it might be worth finding out it anyone in Austria has learned to do it. It only works for fewer than 5 liver mets, none of which are larger than 5 cm in diameter. 'Average survival after the first LITT treatment was 4.2 years.' These weren't HER2 women on herceptin, either.


http://bca.ns.ca/indice/2004/76index.cgi/n...mes/read/285900

Best wishes,
Christine

[StephN]

Well, that IS a bummer to get this news when you are just ending the HERA trial treatment.
Beatrice in Italy had some heat treatment to her liver mets - you can search this site for her fairly recent post.

HEY - if you can count your mets, then they are NO big deal, and you can take care of them - mine were "too numerous to count and two were as big as my fists." Try that for news - and only 6 months after getting off first round of chemos. I kicked those mets out and have been good on Herceptin for close to 3 years now - take heart!
At least your docs are not putting a time limit and percentages on your life expectancy - they are optimistic in your case.

You hate to think that herceptin did not prevent the mets, but we have some VERY aggressive cancer cells in our systems. Those tumors can come raging back, which is why I am a fan of testing and periodic scans. Your mets would not have been discovered until you had some symptoms if you were not being monitored in this trial. Thank goodness for that!

You will get through this and be just fine.

Hello again!

I´m feeling alittle better. Having a cold doesn´t help.... yuk

Regarding LITT (Laser-somthing) that they do in Frankfurt - I read about it.
They also do it in Berlin - and VIENNA!
And to exactly the doctor that is doing them I am sent to!
Thermoablation is done either with microwave *lol*, ultrasound or laser.... depending on location, number and diameter of mets.

I don´t care which method they use as long as it works ....

I hope to get the dates for MRI and such on monday.
Meanwhile I am succeeding alittle at getting back to planning a "normal" life with a chronic disease....

Thanks for all the posts - upped my spirits!
It always helps not to be alone with this as sad as it is to know there´s so many of us....

X
Alice

Sounds like you're in my boat. I'm one of the percentage of women for whom Herceptin does not work alone. For me, at least, it only works with chemo. Although I've just discovered a new liver met while ON chemo and Herceptin.

I think for women like us, the fight just continues. But you've got the right idea. Live life and enjoy every minute possible.

Love and light,


Lisa
Colorado, USA

Lisa - I am so sorry to read your post, but glad you had your party and had a good time anyway. By now, you know half the battle its attitude. Keep fighting the good fight. You are in my prayers. Maryann

My previous post was meant for Alice - chemo brain. Sorry

[Lolly]

Alice, it IS a boost to know we're all in this together, even though none of us wanted to be here in the first place at least we have good company!
You have the right attitude, and will go on to conquer those mets and have a great life. Keep us posted, we need your inspiration!

<3,
Lolly

Hi Alice, it is always a bummer when they kick the chair out from under you. When you say heat, does that mean radiation. I am having radiaiton with Xeloda for a reoccurence in the other breast and at the same time Herceptin and it is making the lump in my neck which is supposed to be nothing to worry about twinge and pinch like it is being attacked so, if you are having rads ask your onc to try the Xeloda with it, can't hurt, look at how many people who have been on chemo and then found out they didn't have cancer in the first place. I always maintain I won't die from cancer, I will probably choke on one of the 22 pills I take in the morning or the 14 at night. I figure I am life support for my pharmacy, at least I got a T-shirt this year from him. Oh by the way I have been getting the wind knocked out of me since 1998, so hang in there.

Love & Hugs Lyn

Alice
Are you taking a hormone inhibitor? At your age I feel it would be to your advantage. Check with your Onc for the one he would recommendif you are not presently on one.
Out of trial Herceptin also has been more effective in combo Tx's.
You really need to stay on it as it sometimes works well after more time. Herceptin alone usually given as a prevention or maintanence therapy.
Warm well wishes and Hugs,
Christine@her2support.org

Christine, I did try homonal treatment. Tam+Zoladex and then Tam alone.
Could go for aromatasinhibitors as HERA doesn´t allow you as long as you are getting Herceptin out of the trial.
Now aromataseinhibitors would be available for me but I was going through living hell on Zoladex!
Cannot imagine to try it again.

So far doctors are still debating on either thermoablation or surgery. Well surgery sound awful to me in spring. I am a scrub nurse in general surgery so I know what liver surgery does to your abdominal muscles. And after having a free TRAM in 2003 my abdominal wall is already weakened.
But I will not say "no" before THEY said they want to do surg.

I was planning to go on several trips in April - taking "time off" after the energy-consuming past 2,5 yrs.
Already paid for a week of Tennis in Croatia and a wonderful week in Lisboa.... well, seems I won´t be able to do either.
Can´t really imagine not doing anything about my mets until May!

It has already been 2 week since I got my stage 4 dx and they are still doing exams and debating....
I am supposed to get the date for my liver-MRI "within the next few days" - only getting the appointment takes 4ever! Being a nurse with one of the best BC Centers in Vienna does help but it just cant change the problems within the public health system....

After easter a specialised Surgeon for liver mets is going to see me - hopefully I will have my MRI until then because I don´t believe he can tell me alot without it....

It sucks - I am having one of the worst flues I´ve had within years besides all of that - but I guess that is nothing to be surprised about. My immune system just couldnt be the same after the shock, could it?

Just hope those suckers aren´t growing like hell until ...

fingers x´ed
Alice

Hi again Alice, I didn't mention that I have and I still am on Aromasin, Taxoxefin was of no use to me because I was not hormone responsive. I was at one stage on Aromasin while waiting for rads to my neck, and I didn't end up needing the rads, the Aromasin knocked it out, but then again I have been on Aromasin and I still am with the reoccurence in my other breast, the cells are similiar to the other side but not the same, not as agressive this time round. I keep my fingers crossed for you.

Love & Hug Lyn