Big Liver Met & Herceptin Resistance

[Redwolf8812]

I'm having a bad morning. Found out that I progressed on Xeloda and Herceptin. Liver met is @11cm x 9cm, in addition to a new satellite met, and I'm feeling discomfort in the liver area. I'm starting a parp trial on the 5th. I had a bone scan on Thursday and they took extra pics of the rib cage. Sigh.

I know that others have beaten back liver, and other mets, or at least stabilized, but it appears to have happened to those who don't experience resistance to herceptin.

I'm just feeling hopeless.

[Becky]

Don't give up hope. Xeloda doesn't work for everybody and it might not be the Herceptin's fault. Herceptin does help but doesn't always do the job alone.

You will find a combo that works well for you. This just wasn't the one.

[sarah]

Hello Red Wolf,
Sorry you're feeling hopeless but a lot of people will answer who've been through this and come out the other side.
However I just read an interesting post on the site and wondered if you'd seen it and whether it would apply to your situation or not. Here's the post:
First scans since finishing last round of chemo
it talks about irradiating mets.
Don't despair.
hugs and love sarah

[NEDenise]

Penny,
I'm so sorry you got bad news. I totally understand how disappointed and discouraged you must be feeling. May I recommend that you give yourself a day or two to feel the disappointment...cry...rage...feel sad. Experience the pain and disappointment. Then, get back in the fight.
I can tell from your posts, and our PMs that your faith is strong.
Use that faith, and remember... "I can do all things, through Christ who strengthens me."

So many of our HER2 sisters have had similar disappointments and are still with us, and going strong. There are so many avenues open to you...lots of drug and treatment combinations to try still! And you are being treated at a cutting edge facility.

Penny, God is good, all the time.
Trust that He is with you on this journey...no matter where it takes you...feel Him right there next to you. Let Him carry you now, if that's what you need! Far from being hope "less"...your hope is in the Lord, my friend!! Your hope is limitless! You can do this!

You'll be in my thoughts and prayers! Keep us posted on your care plan.
Denise

[Rich66]

Just a reminder there are directed therapies you might consider:
http://her2support.org/vbulletin/sho...053#post221053

[CoolBreeze]

11 x 9 cm may be too big for ablation - I think 3 cm is about the limit, but I hope I'm wrong. However, there are chemo techniques where they can direct chemo directly to the liver. I'm blanking on the name right now, damn chemo brain. And, I've seen dramatic changes on different chemos so hopefully something else will work for you, shrink it down so you can do a targeted therapy. While you may be resistant to herceptin, you probably aren't resistant to all chemos.

I know it's scary. I find out the results of my scan on Wednesday and since I've not been able to do chemo for several months, I'm quite nervous as well. I hope you find something that helps.

[Lauriesh]

Hi Penny, just wanted to offer encouragement that hopefully the Parp trial will be the one that works for you.

I also wanted to add that when I was diagnosed a year and a half ago with an 11 cm liver tumor, I tried to do everything I could do to help my liver.
I started taking milk thistle, and cut out alcohol, trans fats, artificial dyes, and excess sugar. Anything that I could find on the internet saying it was hard for the liver to process, I cut out.
I also read that the best foods to help the liver are onions and garlic, and vitamin A foods, (carrots and sweet potatoes) so ate (and still eat) tons of it.
I am not saying that is what "healed" me. I did do chemo and Herceptin, and had a good response, but I was so desperate when I found out how big my tumor was, I wanted to do anything I could to help my liver function better.
I had liver ablation done when mine had shrunk to 3 1/2 cm. The interventional radiologist said that she has done rfa on larger tumors, but the success rate falls, as you get larger than 3 cm.

Laurie

[Kmswilson]

i started out with an 11x12 cm liver tumor, and several 6 cm and 3 and 4 cm along with countless small tumors. Basically, my liver is full of it. That was a 13 months ago. I've been dancing with it for the last year on several chemos and herceptin, and now I'm down to a few 3 and 4 cm tumors along with countless small ones, though they have reduced some in number, there are still too many to count. I've had progression and regression, back and forth. I figure I'm going to dance with it as long as I can, and if I can keep dancing or even get some stability, I'll take it until they find our cure! That being said, since I recently had brain mets and finished WBR, I'm now waiting to start on Tykerb and Xeloda to see how that combo does for me. Tykerb since I need something for the blood brain barrier, and my onc said since I'd shown some resistance to Herceptin, maybe the Tykerb will shock it a little. I'm a little worried since Ive been off chemo for 6 weeks now and have a week and a half until I get started again. And a little worried about the toxicity warnings about liver for Tykerb, but I'm trusting that the right combo is out there for me, I just have to find it and trust that all will be well. I hope the same for you. This can be so scary and disheartening. Hang in there.

[chrisy]

Hi Penny,
Sorry you are getting this news. Surely not what you wanted to see.

I'm not a doctor, and of course everyone responds differently. But from the history you posted, it seems to me that there are many options available to you. It's not an easy road, but you just need to keep plugging away looking for the right combinations that will work for you. The parp inhibitor may work well for you, and in a trial you are monitored very closely which I think is always good.

I view your comment about herceptin resistance differently. Most people do eventually develop resistance to herceptin, but the way my onc put it was "the disease has figured out a way to escape the herceptin" but there are many studies confirming that continuing herceptin in conjunction with a chemo or other agent is still synergistic. That is, you will get better results keeping herceptin in the mix even if it is not sufficient to control the cancer by itself.

As Rich notes, there are also other targeted agents, most notably Pertuzumab which should be approved (I hope!) by this summer and TDM1 which probably is still at least a year away but is available in trials. Both of these are very exciting therapies, and basically all Her2 directed agents are developed with those whose cancers have developed resistance to herceptin in mind.

The word Coolbreeze was looking for is chemoembolization, where they deliver chemo directly to the tumor via the blood vessels within the liver. I'm not sure it's widely done in the US tho, but may be worth checking into.

So, do not lose heart, you have options and the right opportunity will present itself to you.

[Pray]

Penny, I also am so sorry about your news. Please know you are in my prayers. I will continue to pray that your drs. come up with the right combination to help you fight to beat this.

Your friend,

Nancy

[Mtngrl]

Dear Penny,

If you haven't tried guided imagery you might give that a try. You obviously need a different drug combo first of all, but if you can give your mind a job to do too, it certainly couldn't hurt.

Hugs and prayers. . . .

[Redwolf8812]

Thank you all for your words, advice, and prayers. You're all correct, of course. There is so much more to try. I met with the oncologist today who is running the parp trial. The bone scan was good. The extra pics they took were because the big "goombah" (doctor's term, not mine) in my liver was blocking their view. LOL. So, praise God, it's still just in the liver right now. No need to panic yet, I guess. I start the trial on Monday.

I was told I'm not eligible for surgery or radiation until it shrinks, though.

In the meantime, I'm gonna tell everyone I'm eating for two!

[chrisy]

Hmmm...
I didn't know goombah was a medical term!