Recurrance Too - Liver

[jessica]

Hey Adriana~
I had two surgical procedures to address the single liver met (in addition to lots o'chemo - 81 total weeks).
The 1st surgical procedure was RFA - Radio Frequency Ablation. It's an out pt. procedure where they stick a "probe" directly into the tumor & blast it with heat. But b/c the lesion was so close to the main portal vein in my liver, the RFA wasn't completely successful, left behind viable tumor tissue that survived & grew again.
So, after another year of chemo & no other recurrences, I had a RIGHT HEPATECTOMY, aka LIVER RESECTION. The entire R lobe of my liver, where the single met was, was removed, along with an adrenal gland - in total 65% of my liver.
The liver regenerates-like magic, Thank God!-but the circumstances have to be just right in order to be the right candidate for the surgery. It's definitely not for the faint of heart - it's BIG STUFF, but it's totally do'able.
There are handful of other women here who've had liver resections too & can attest to how amazingly the body can heal & return to health.
Hope this info is helpful!

[Lolly]

Julie, I'm sorry to hear this. You know you're in my prayers, and I hope and pray you'll get this under control soon. Tykerb is a great hope for many of us.

<3 Lolly

[chrisy]

Well Julie, WHAT THE HECK! (I really wanted to use a different word there...)

I think that's good news that it is still only in the liver and "so tiny" - I say that quoting my UCSF who said that about the 16mm spot that showed up on MY CT. Sounds plenty big to me! But also a bit reassuring to hear that from a top doc. And still confined to the liver means that options such as RFA (or more) may still be available to you.

Also sounds like good news to hit it with new/different targeted therapy if possible - the less heavy chemo the better in my book. Of course, the Tykerb/Xeloda is not without side effects, but my understanding is that it is "easier" than, say, a taxane.

Good luck with the new combo. Please let us know how you're doing - I think about you a lot (having gone to school nearby at ISU) and worry about you!

Take care
Chris

[Esther]

I will be very interested in hearing how others are doing with Tykerb/Xeloda combos, as that is what my onc is rec for me.

Please post updates on this combination.

I started the Tykerb yesterday, and will be adding the Xeloda soon.

[julierene]

Thanks for everyone's kind words of encouragement! It seems almost surreal to me that this spot has been lurking in there this whole time. On several occassions, I have asked about why the spot still looks like tumor on the MRI but wasn't showing up on the PET. He always said "It could be, but let's hope it's not". Apparantly it's hard to tell?


So I have concerns about periodic brain scans. He says no, I say why no do them like once a year? Any time I get a cold or get off-balance, I worry. I get so much dizzier than I used to. I can spin around once, and feel like it was four times. When I am tired, my eyes almost seem to cross. I'm only 32... Does that seem weird or more like my panicing over every little thing?

[Odette]

Dear Julie,

you are not obsessing, you have every right to have a brain scan!!
Just on a good note: the Tykerb is a small molecule that is able to cross the blood brain barrier!

Best wishes,

Odette

[Lolly]

NOT Weird; Julie, I feel the same things, and have to make sure I'm holding the rail going down stairs etc. That's not to say the MRI isn't a necessity, it is. Many (too many) have had NO SYMPTOMS and had brain mets show up on routine MRI's. The good news as I'm sure you know, is they're usually treatable if caught while small and small in number.
Fortunately (!), I get headaches so my onc has been able to order them annually for me just to "be sure" it's not mets. However, am having one this Friday because of dizzyness while sitting, an infrequent but new symptom for me.
Keep insisting you want the scan, it's a must for us HER2+'s.

<3 Lolly