Recurrance Too - Liver

[julierene]

I just found out today that I have a spot in my liver again. We thought that it was scar tissue because it didn't show up on the pet scan twice. But the last liver MRI showed that it changed size from a ball to a hour glass and it went from 1.3 cm to 1.5 cm in length. All the other spots are gone. But I ended Herceptin/Taxotere in May of 2006 and now April of 2007 I am seeing stuff again. I guess I have to be glad that it's not anywhere else.

So I get to start the Tykerb/Xeloda pills. I'm a little suprised that he isn't doing many of the other traditional progressive treatments. What are your experiences?

[Mary Jo]

I'm sorry Julie but like you, I'm thankful that that was the only place. I'm rootin' on the Tykerb/Xoleda mix to knock it out of the park.

Hugs and God's Peace I send,

Mary Jo

[Vanessa]

I am also sorry to hear about the reoccurance, but I am hoping you knock it back soon. I am still on my initial treatment, but I got the sense that my doctor was going to use traditional approaches before moving on to the tykerb/zeloda.

[jessica]

Hi Julie~
UGH! Spot's back...I'm so sorry. What a bummer.
BUT - Thank God it's just one spot. Thank God TYKERB is available to you. I do hope this combo will make swift work of that damn spot & NED returns quickly.
I did the same dance w/NED & a single liver met recurrence for ~2years. At one point my liver was riddled with lesions & fortunately, responded beautifully to Taxol/Herceptin. I did eventually have a single liver lesion recur.The spot would show on the PET, so I'd go back on chemo. After 12 weeks of chemo, we'd scan again, SPOT gone, NED back! Then after 12 week break from chemo, we'd scan again, SPOT back, NED gone. We even tried RFA, but it wasn't completely successful & the lesion "fired up" again.
Ultimately, I switched oncs/treatment centers & had a R hepatectomy in December of 2005. My liver has been NED ever since. Thank God!
If Tykerb & Xeloda had been available at the time I was deciding about the liver resection, I imagine I would have tried it before going under the knife. However, I love that my liver's NED...I even love the big scar down my belly.
Just want to send you lots of positive vibes & encouragement.
Keep the Faith~

Jml

[Adriana Mangus]

Jessica: Did you have surgery to remove the spot in your liver? Just curious. A friend of mine it's receiving treatment for a spot in the liver....Thanks.

[eric]

Julie,

Caryn also recurred with a very tiny spot on her liver. I was surprised as well when the onc chose tykerb/xeloda but felt really good after listening to him tell us that he thinks she is an absolutely perfect fit for this drug and fully expects this new combo to bring her right back to NED. Hope it does for Caryn, you and all others on it! Friday will complete the first week and so far so good. Early signs had us nervous as she got a bit queasy, more frequent bathroom visits, itching and tingling on tongue, hands and feet, but it hasn't gotten worse as of yet. Her nurse said most side effects don't usually start until second week but we're hoping they don't get any worse. Most importantly...let the drugs work!

Eric

[Debra]

Julie -

As everyone else, I am sorry to hear about the spot on your liver. The frustration for you I am sure, has been kicked into high gear.
I say a prayer for all my "Her2 buddies" every night and will say a special one for you.
I will have my first scans since diagnosis the end of May and I already am making myself sick over what they may find as you know the fear!
Try and stay strong and focus and kicking the %&*@# out of that lesion!

[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

[IRENE FROM TAMPA]

My results from the Tykerb/Xeloda combo :

Started the combo on 8/13/2006 at 1250 mg Tykerb (standard dose)
Xeloda at 3000 mg which is the protocol on the trial.

We reduced the Xeloda to 2650 mg after several months due to much stomach distress with diahhrea/gastritist type issues)

I am currently on 1250 Tykerb and the 2650 Xeloda and was just scanned and one of my tumors has disappeared and the other one has gotten smaller. It is going slow but so far so good. I will rescan in June and we will see what is happening. My tumor markers have dropped also.

I find the combo easy to take (and convenient since they are pills)

The only side effects I have is diahhrea (not like at the beginning) and the hand/foot thing. My feet get really cracked and can hurt and my finger tips get dry and cracked also. I deal with paperwork all day long at work so that does not help the drying. I am buying stock in BAND-AIDS I use so many -lol
I walk around with band aids all over my feet and hands and socks and sandals. My nails have also gotten hallow underneath and have to watch for infections underneath. This may not happen to you since everyone is different or to a lesser extent. My hair is growing back from my last loss too.

Other then this, I feel really good so if that is the only effects I feel, then I am not too unhappy. Just have to deal with the cracking best I can.

I wish you much luck with this combo and know you will tolerate very well.

Let me know how it goes for you please.

and good luck to all of the other ladies starting on this combo also.

Take care Esther.