It's back...scared!

eric · 03-16-2007, 06:58 AM

After 2 years of NED (which I'm very thankful for), they found a recurrence in the original spot in Caryn's liver. Didn't show up on the PET but the MRI found it. Onc said it's small, about half an inch, but due to the rising tumor marker he wants to treat now rather than wait. She's so anxious and besides my own major fear, my heart breaks for her and my kids (when they find out).

I guess some things I wonder about is...does this mean that herceptin is no longer an option for her? Although we got very lucky that she reacted well to the herceptin and gemzar 2 years ago, how do I know that she'll react as well to something else?

We have a meeting with the onc on Wednesday to discuss treatment plan and I've also emailed UWA since she participated in the vaccine trial there. Hopefully they can offer us additional options. Dr Webster, who's no longer there, had once mentioned that they can do something should a recurrance take place.

I know there's alot of good out there but I wish I knew what I could do to help accelerate the road to the cure.

Eric

Becky · 03-16-2007, 07:45 AM

Eric

Contact Patty Finkle or Dr. Salazar at UWA. If Caryn responded to the vaccine, then she produced antibodies. I believe that they have banked some of Caryn's plasma that contains those antibodies. Kim from CT (aka Mamacze) was also in the vaccine trial. She and I have spent some time together at ASCO last summer (and met Dr. Webster and Dr. Salazar). Dr. Salazar told Kim that if she should have a recurrence, Kim's antibodies are frozen there and they can be infused. This could be the case for Caryn too. If so, then all you have to figure out is when is the best time to infuse them (probably after chemo is completed I would think so that chemo does not somehow destory the antibodies). Call!!!

Also, it does not mean the Herceptin is not working. It just means that it needs some help. There are lots of weapons out there too (including Avastin which I think might work better for liver mets than any other met because the liver has so much blood. And of course, Tykerb). Also, if there is and has only been one spot - maybe getting that area removed surgically and then chemo afterwards (then the antibody infusion) plus Herceptin etc may put this to rest for good. Don't give up hope as there is no place like hope. There are alot of good options to get back to NED for good.

Big hug for you and Caryn

Julie2 · 03-16-2007, 08:07 AM

Eric,

As Becky said please don't give up hope ,there are lot of things to be hopeful. Please try surgery first as it is a single spot. There are many powerful chemos like Navelbine left. Also Tykerib is available at the right time. All my good wishes to Caryn.

Julie2 · 03-16-2007, 08:12 AM

Eric,

Its me again. Also what is the guarantee that it is active cancer, it could be a scar tissue, since it didn't show up on PET. Did they do MRI at the end of initial chemo? so surgey seems to be a good option to find really what it is.

Julie

MJo · 03-16-2007, 08:16 AM

A woman in my support group has BC mets to liver and bone and is taking Avastin. She is more energetic than the rest of us. There is definitely hope.

MGordon · 03-16-2007, 10:09 AM

... I know it is a tough and scary time!

To answer your question, I think it is up to you and your onc. Lisa's recurrance was to her liver (first, followed by bones, brain, etc) and she was never taken off Herceptin. In fact she was moved from every three weeks to weekly.

Hope this is a scare, and only a scare.

Love and Light
Mel

StephN · 03-16-2007, 10:31 AM

Sorry to hear of the news on Caryn's liver. I was going to mention Avastin, but see it in Becky's post.

If it is only one spot and so small they may be able to ablate it or resect it (see Jessica's posts on resection).

I also agree the you need to call Patty FINTAK at the U of W. She will know who is in charge of of the plasma end of the trial.

Have hope - this is a small bump in the NED road and I am sure will have a good outcome.

Becky · 03-16-2007, 12:13 PM

Steph N is right. Her name is Fintak. Sorry about that.

IRENE FROM TAMPA · 03-16-2007, 01:34 PM

My story is a long one, so I will make it short....

I pray that what I about to tell you gives you both hope. I hesitate sometimes to tell my story because I fear it will discourage someone because I have not been cured. I just felt I wanted to let you both know that life can go on and never, never give up. I can feel your desperation.

I have been a breast cancer survivor for the last 11 years. Mine first metatisized to my liver and I had two tumors there for several years. I was on Herceptin for 6 years after having a stem cell transplant done in 1999 even with recurrences since we believed that maybe, JUST maybe it WAS holding it off some from spreading further. I had the abalation procedure done and unfortunately it recurred in the liver(that does not mean everyone's would do the same) Some people have been successful with this procedure.

. The next year we resected half of my liver and it has been clean since. That was in 2004. I must say that I have had another recurrence in two lymph nodes outside of the liver, but with new treatments I continue to go on.I am on the TYKERB/XELODA trail since last August and so far so good.

What I mean to say Eric and Caryn - I am STILL living after 11 years and hope to go on for many more. Never give up hope. The crazy thing about this is that everyone needs to find what works for them. It's not an easy process to go through and I spend a lot of time checking out new procedures.

I am an example of a person "LIVING" with cancer for the last 11 years (as stressful as that may sound) I consider myself very blessed.

I hope I did not go on too much but just wanted to let you and Caryn know that there is always hope.

My prayers for Caryn. If there is anything or questions I can help you with, please do not hesitate to let me know.

Good luck

jessica · 03-16-2007, 03:02 PM

Eric & Caryn~
I'm so sorry you guys are going through this! This discovery is a scary period, but hang in there, you'll find your way & we are all here to help! You've already gotten some great advice & I just want to reinforce all the great stuff that's been mentioned above & contribute my thoughts & prayers.
Like Irene, my disease has followed a strange and convoluted path. Distal mets, local recurrence, multiple methods of treatment-chemo, RFA, liver resection. NED here & there...Inspite of it all, we are both, like many here, not just LIVING, but THRIVING.
I never abandoned Herceptin. My docs & I like to ponder the thought that the Herceptin has helped control & minimize my disease recurrence & progression. But each time we needed to, we added Taxol , the lesion would melt away, then it was Herceptin solo again. TH has been my "Magic Cocktail" -maybe Gemzar+Herceptin is Caryn's.
It is a hard decision to make-go back to what you know worked before, but what if it doesn't work again and the disease progresses? Or try something new...but what if it doesn't work, and the disease progresses? Not to metion, I'm sure Caryn's gotten quite accustomed to having hair again...It would be such a bummer to lose it AGAIN...It always is, regardless of how many times you've already been bald

The first time my single liver met recurred this is what we did:
Weekly TH x 2 weeks, RFA the lesion, then weekly TH x 2 weeks
My hair thinned a bit, but nothing I couldn't work around. Unfortunately, inspite of the RFA, the spot did pop up again - BUT that is b/c the lesion was so close to the main portal vein that they couldn't get a good burn radius around the spot. As Irene says, Caryn's circumstances (location of lesion) could be totally different and this option is certainly one worth checking out.
Liver resection (aka partial hepatectomy) is also an option. It's a big surgery & docs don't like to jump into it lightly-My docs watched me for a year, on & off chemo, b/c we had to be confident that the disease was truly isolated to that single met. Like Irene, my liver's been NED ever since too

. KK1 recently had the same surgery & she's recovering beautifully, as did I & we've been talking about how to get her back into shape for skiing!

Keep the Faith, Eric. There are still so many options to explore.
Hugs & comfort to you both~

eric · 03-16-2007, 07:29 PM

Thanks to ALL of you!! The support, love and quality information has helped a bit. I'm still scared but less so, and certainly don't feel quite as helpless. I look forward to hearing back from Seattle and happy she did that as the reinfusion certainly couldn't hurt. I also hope that Caryn's Onc doesn't cross herceptin off the board since I believe it's played such a big role for her. Nice to read the quality info and the wonderful success stories.

I am truly thankful for all of you.

I'm not the most religious person but GOD bless all of you and Caryn.

Love and light (hope you don't mind me using that Mel...it always warmed my heart when Lisa wrote it and continues to do so as you honor her greatly)

Eric

kk1 · 03-17-2007, 06:11 AM

Eric and Caryn;

Sorry to hear you had a reoccurrence but as Jessica and the others said there are lots of options depending on the details. The fact that Caryn has been NED for so long before the reoccurrence bodes well that she can return to long term NED.

I just had a liver resection in Jan for a single met and now continue on herceptin--it was a tough surgery but very do able. I have a bunch of research articles on surgical options for single liver mets if you would like me to send them.

kk1

Lolly · 03-17-2007, 05:06 PM

Eric and Caryn,
You can do it again! And as the others have said, Herceptin could still be on the table; I've recurred 3 times, and am still on Herceptin. My onc believes a successful chemo can be revisited also, so each recurrence has been treated with the addition of Navelbine; did finally have to move on to other chemos as this latest recurrence didn't respond as well.
And Tykerb is there as backup!

You've gotten much excellent advice, just wanted you to know you're in my thoughts and prayers as you contemplate options and plan your strategy.

<3 Lolly