Feeling so desperate - Liver mets back

[Missyw]

Hi everyone,

My head is still reeling. After almost three years NED my liver met is back. Can anyone with liver met experience give me advice? I want to explore resection. Has anyone done Cyberknife? Dr. is recommending navelbine. Is this enough? How well does it work? Is it well tolerated? We have to tell our kids (13 and 17) this weekend and I just have to find a way to feel some sense of hope. Right now I am lost and overwhelmed with grief.

Thank you so much. Missy

[Believe51]

Oh Missy, I am so sorry to hear of this news. I wish I had the answers for you but I do not. I do however, always have time to add another prayer to my list. I will have you on my mind and deep within my heart as you search for the answers. There are many members here that have encountered liver mets that I am sure will come to your rescue. Just remember that I am right here in your corner.>>Believe51

[lexigirl]

Sending you a hug and prayers right now. I hope that your tx will kick the heck out of the pesky liver met.

Hugs and Prayers,
Lexi

[Shobha]

Missy, I am praying for you to get the right combination of drugs and make the liver mets disappear. I know many brave ladies in this group have done it. May you have similarly great result!

[jones7676]

So sorry to hear your news. I hope they can match you with a good treatment that is very effective and works well. I will be thinking of you.

[schoolteacher]

Missy,

I am sorry to hear your news. I will be praying for you. I don't know anything about the medicine they are wanting to give you.

God Bless You.

Amelia

[vickie h]

Missy,
Please don't be too frightened, though I know that is easier said than done. I am on Navelbine and have been on it before. It was the first time I was ever NED, so it is a great treatment and very easily tolerated. There was a bit of hair loss, but I kept most of my hair and never had any nausea, etc. My energy levels were quite good, also. I think it is an excellent choice for you and would also research whether a resection is a possiblity for you. I have not had liver mets, but I have been in chemo for over 5 years now, non-stop except for a couple of 6 week breaks. I was only NED once (On Navelbine) but there continues to be more options added all the time.
I know how fear takes over when this happens. Breath deep and keep up the fight, you're going to be just fine. I am praying for you, sweet sister, and we are all here compassionately reaching out to form a protective blanket of love around you. We love you very much, Vickie

[norwegian]

Dear Missy!
Yes, I've posted this poem before,- but how can I not give it to you now that you feel so miserable. I wish you all the best!!

IT'S THE DREAM
It's the dream we carry in secret
that something miraculos will happen
that it must happen-
that time will open
that the heart will open
that doors will open,
that the rockface will open
that springs will gush-
that the dream will open,
that one morning we will glide into
some little harbour we didn't know was there.

[Lori R]

Missy,
I am so sorry to hear the bad news. I too am a liver met SURVIVOR and so I can completely relate. I even have a 16 year old daughter.
I believe I am a year behind you, but I do participate on this site daily as there are other Liver met survivors that provide A LOT of hope in terms of their successful battles against this X#@! disease.
Chrisy has been on the TDM1 trial and it has kicked those mets to the moon.!!! I believe there is a trial that is open as a 2nd line treatment. I mention this because I hope it provides encouragement that while it must be horribly frightening to have the mets back, there is more than one option available. (always looking for those back up plans)
Please mention this trial to your Onc and they can help you decide if the Navelbine (which is also good news as MA said is very manageable and worked for quite a while!!) or the TDM1 would be in your best interest. Also, I believe Kim-CA has a liver resection a long time ago. I haven't seen her post on the site lately but I "think" I have the right person. Her picture was of her on a beautiful horse!

Would it be helpful that prior to sharing the news with your children that you have a game plan in mind? That way, you can be more upbeat and confident? The discussion you refer to is the one that makes me lose sleep at night. The hardest part HAS to be the impact the news has on our families.

I am sending you a warm, comforting hug. If you want to call someone and cry (or cuss), let me know, I'd be more than willing to listen.
Love and Hugs....Lori

[hermiracles]

So very sorry to hear this news Missy - love hope and prayers to you Sister.
May the Force be with you.
Blessings
Hermiracles

[StephN]

Dear Missy -
Sorry to hear the stubborn bugger is deviling you again. We have had members here use resection or ablation for single tumors with good success.

My liver was "shot through" plus I had a couple of large tumors. Chemos were the only choice in that case. Check my signature below. I have not had ANY sign of liver tumors or any other problems in 7 years after that one BIG fight. Navelbine was part of my drug routine - on a weekly basis.

Tell your children there is a lot of hope - you just need to go after the cancer again while it is small.

[chrisy]

Hi Missy,

Well, I know that feeling...and it sucks. For me, having it recur stole my dream that maybe I had been "cured"... I really just want to give you a big hug right now and wrap you in love.

Still, there is MUCH hope and many options for you. You've fought it before, and you will again. I can tell you are not ready to give up; please also try not to lose heart.

There are many folks here living with liver mets, some who have been lucky enough to slap it down once for the long term, others who have had to slap it again...and again...and again.

As my oncologist puts it "because you have such little disease" you have time to consider other options. It's hard for us to view anything shy of NED as "little" but the point is, if you are healthy you have more options and more time to make your decision.

If it were me, and a single liver met, I would definitely explore "local" options: RFA, Cyberknife, or resection. Get it while it's small. But I would back it up with systemic treatment, too. Resection is a pretty big deal; the others are, I understand, much more tolerable.

Lots of people have had liver mets RFA'd (Irene from Tampa is a vet), I know of one who had Cyberknife (Esther/luv2ski), and Kim in Ca had a resection (which turned out to be necrotic tissue left over after chemo). I'm sure any of them would share their experience.

I've been in a T-DM1 trial for just over a year, and have had really good results. In fact, I think I've been NED since about October but I don't want to jinx it!

This might be something you'd want to consider. T-DM1 is a conjugate with a really potent toxin linked to herceptin. It works like a "smart bomb", using the herceptin to deliver the toxin directly to the cancer cells. There is currently a Phase III trial recruiting for 2nd line therapy - if you've had a taxane+herceptin you may qualify. It's a randomized trial, the other arm is Tykerb/Xeloda which would also be a valid option. And either of those options are pretty well tolerated (except by the cancer which doesn't like 'em one bit).

Here's a link to the trial; don't believe the list of trial locations, they add new ones constantly.
http://www.clinicaltrials.gov/ct2/sh...mcc-dm1&rank=3

All that said, the standard options (systemic treatments) are also very good options. I don't know about Navelbine, except that lots of people do well with it; there's also all the others...just be sure you have a Her2 targeted agent in the mix, either Herceptin or Tyerkb. Even if your cancer progressed while on Herceptin, you still get synergy by adding it to chemo.

I know this is a scary and difficult time. Since I can't do anything more than a cyber hug, be sure you collect real ones from your hubby and 2 kids and let them totally wrap their love around you, and each other.

Then get back in the race...

Much love
Chris

[WomanofSteel]

Hang in there, this is just a minor setback and I am sure it can be zapped out quickly. I too am battling multiple liver mets, the largest which is 10 cm. I am still going strong. We are "Women of Steel" after all! Sending you a long distance prayer and a hug.

[kk1]

Hi Missy;

Don't despair, as Chrisy said the fact that you went 3 years NED and now only have one met is very promising. As you can see from the responses there are lots of options out there and many of us are living great lives in spite of liver mets. I've had two liver resections for single mets. Resection is not right for everyone but I prefer the surgery option when possible. It's a bit tough the first two weeks after, due to the incision, but each time 5-6 weeks later I was completely back to normal doing sports, gardening and even down hill skiing. Plus I have the piece of mind that at least for the time being the beast has been expelled from my body and I am not wondering if the chemo is working or not. I tend to be an impatient patient. I also have children of the same age, to my amazement they always manage to deal with my relapsed better than I ever would have thought.

Hang in there, the worst feeling is the period before you have your battle plan. Send me a PM if you want to ask any questions.

[ElaineM]

I am sorry to hear your news. Navelbine might be one of the best types of chemo to tolerate. You can probably get a list of possible side effects from your doctor or www.navelbine.com might work. Most drug companies have a website for each major drug they produce.
I took Navelbine in the past. It did not cause hair loss. I did get pretty tired for a day or so afterwards. My blood counts went down slightly, but never down to dangerously low levels. I took supplements for that. Whatever you decide to do please do it soon to prevent more mets. Some of us take Milk Thistle and drink beet juice for the liver. I started taking Milk Thistle when I was first diagnosed 10 years ago and never had a liver met. I still take Milk Thistle every day. I eat beets or drink beet juice occassionally. I just had an ultra sound of my abdomen. My liver is perfect.
Good luck. Take care.

[chrisy]

KK1 you are my hero!

WOS - you are my hero, too! "We are, after, Women of Steel"!

[Joan M]

Missy,

Don't lose hope. There's a lot more you can do. Even before a resection you could look into radiofrequency ablation of the met in the liver, for example. It's a fairly common procedure and not as invasive as a liver resection. And it can work well for you since you went for three years w/o mets in the liver.

I think a few women on this board have had liver RFAs, and can give you more information. Ask your doctor.

Hang in there,

Joan

[Jackie07]

Missy,

Sorry to hear about your mets coming back. If you use the search button on the top of the board, you will find all the postings about 'liver mets' by using the keywords. And remember this is a group full of strong prayer warriors. You will not be in this battle alone.

[Believe51]

Missy, just wanted to tell you that I thought of you all weekend on and off. I had a candle burning after saying a prayer for you. Sending refreshing healing prayers and positive thoughts as you move forward. We are all right here for you.>>Believe51

[juanita]

saying a prayer for you and sending lots of positive thoughts and energy your way!