liver mets people all please come out

HavahJ · 01-02-2008, 12:58 PM

Some have, but I'd love to hear from more. I suddenly have 15 liver mets, my marker went up 400 points in 4 weeks. Has that fast thing happened to anyone else? I'm getting a biopsy tomorrow. My only other met was one bone. I feel like I'm at death's door within the next year because no ablation can be done on so many. Liver is the worst, I know that, but what happend to you when you decline? What symptoms? I don't have any now? I want to talk about it 24 hours because I'm so alone here. I must sound crazy.

MJo · 01-02-2008, 01:05 PM

I don't have liver mets, but I'm listening to you. You don't sound crazy. You sound scared, but you're doing something about it. OK. 15 cancer cells migrated to your liver, and the blasted things grew. I hope the doctors can shrink them down to cinders and that your body flushes them away.

Brenda_D · 01-02-2008, 01:18 PM

I don't have liver mets either, but when I get Herceptin every 3 weeks, there is a man there that had colon cancer that metastasized to his liver. He's been getting low dose chemo for the mets for one and half years now. He's probably in his 60's and although some days his blood counts are too low to get the chemo, he's doing ok.
He's my inspiration.

Joy · 01-02-2008, 01:54 PM

HavahJ, I know the feelings you are having right now, I really do. 51/2 years ago my whole liver was a tumor and had probably been that way for quite some time. They gave me a few months. I started on taxotere/xeloda and herceptin and did really well, then I moved to hormonal treatments with the herceptin, then it flared and I did taxol/carbo/ herceptin/. Then I switched to navelbine and herceptin and then tykerb/xeloda. All of the treatments have worked in some way or another. They either stopped progression, shrunk tumors or really kicked butt.

I'm here now and my liver seems inactive with cancer and my liver function tests are all normal and have been for awhile.

Do your research, keep us posted, ask for help and gear up for a good fight. You have an variety of treatments to choose from. And those tumors can go away-they really can.

All the best to you.

mslinda · 01-02-2008, 02:27 PM

Havahj:
I don't have liver mets either. But I just want you to know that I have just said a prayer that whatever they find, and whatever treatment is decided, that it will work and knock those mets right out the door.

You take care and keep us posted.

Linda

lilyecuadorian · 01-02-2008, 03:19 PM

I have 5 tumors on April/06 and get rid off with herceptin, taxotere and carboplatin ...after almost a year return and now I'm on this trial Trastuzumab-MCC-DM1 2nd phase SO maybe you can try this one too ..is really easy to tolerate and so far "we" are doing great (Barbara H, Marsha and me ) so maybe you can check on this trial ...just I'm on the second treatment (17 total) already from 3 tumors I got only 1 & half ...so my Doctor thinking that I'm doing great .... keep fighting ....

Gina · 01-02-2008, 05:58 PM

HavahJ,

Rhonda e-mailed me your post along with a Happy New Year's e-mail earlier today and asked me to come back on the board and send you out a note.

If you search my name and liver mets "Gina Liver" you will probably find a lot of information that may calm you down. Of all mets, I think liver mets are the easiest to get rid of with Herceptin, but unfortunately, I have been off the board and don't know your complete history and you may have complicating factors, so if you like, please send me a quick e-mail to my home at Gpopp@comcast.net and tell me whatever you can about your case...especially what happened in the last 3 months leading up to your rapid tumor marker increase and I will see what we can come up with just for you. I would not panic, but I would stay on top of the situation and start learning all I could as fast as possible. Education, positive mind set and perseverance are key to managing this illness for the long haul.

Happy New Year to ALL,
Gina

doh2pa · 01-03-2008, 12:47 PM

Hi HavahJ,

I do know the despair and fear that you feel right now. Liver mets are scary and back 10 years ago before herceptin and tykerb and other new therapies, the prognosis was not good. However, there are many inspirational women on this sight living with liver mets. I was first diagnosed with liver mets in September 2005 and I am still here. I work, volunteer, travel, take care of my family and enjoy life. It is a constant battle, I've been on and off chemo and luckily every regimen I have been on has put me into remission. They do keep coming back but I still have lots of tools left in my tool chest and I am not ready to give up. So I live by 2 hopeful mantras:
1. Research in breast cancer is amazingly forward thinking lately. New therapies are looking for ways to help us live with metastatic disease just like any other chronic disease. Although I would much rather have my old chemo-free life back, I just need to try to stay as healthy as possible and hope that the research gurus find that one thing that will work for me. I have HOPE!
2. None of us knows what tomorrow brings. Whenever I feel like having a pity party for myself I think about the fact that life does not come with a crystal ball for anyone. I have come to face my mortality and it has helped me to examine what is really important in my life, not to sweat the little stuff and to love my friends and family as much as I can.

It's a process getting to an acceptable place with this. I'm a few years ahead of you in that regard. Just keep on fighting, we all draw strength from each other here and know that we are here for you and we UNDERSTAND!
Stay strong,

kareneg · 01-03-2008, 04:13 PM

HavahJ,

I have been battling liver mets for 6 1/2 years. Don't give up hope at all. There are many many treatments out there for you. My liver is still a whole tumor but I will never give up this horrible fight. This past summer I went for a catscan and with in three weeks I was so sick I could barely move had tumor fever's and I felt like it was the end. So I had another catscan and my tumors doubled in size. Being Her2pos is a big factor in that. But I went on a new treatment and I am still here!!!!!!! If you need me please email me at keg5294@aol.com I will always be here for you!

Vanessa · 01-03-2008, 07:19 PM

When I was initially diagnosed with mets after my surgery, I had extensive liver mets. My doctor put me on taxotere, carboplatin and herceptin. I was only able to take the carboplatin for a couple of months, because I was allergic to it, but doctor was confident that the taxotere and herceptin was still a good combination. I went the Tuesday before my petscan and had Dodie Osteen pray for me, on Thursday had my petscan and the next week found out that all my mets were gone. My doctor kept me on chemo a bit longer. I was NED from September to May and then I had a reoccurance in my lymph nodes. My liver mets have not ever returned. I am thanking God for that. Good luck to you and I will keep you in my prayers.

Verna · 01-04-2008, 01:45 PM

I've had liver mets twice in 2 years. Currently there are no tumors in my liver, praise God. Been on Tykerb/Xeloda now for 9 months. Seems to be keeping it at bay. Just remember if one treatment stops working for you, there are plenty more to try.
Just have faith in the Lord, we are all in His hand.

Verna-

chrisy · 01-05-2008, 09:54 AM

HavahJ
I know I already weighed in on your other thread...hope you don't mind me chiming in again.

Pay attention to what has been said here. Hope is real.

As others have said, liver mets can be very treatable, even if they are extensive. You are correct in understanding the the liver is a critical organ which you definitely need. You may also know that it is the only organ which can regenerate itself - perhaps because it IS so important. That said, although liver mets are serious business, they are treatable and there are a variety of treatments which have worked extremely well.

I know you are experiencing fear - who wouldn't. And maybe a little bit (or a lot!) of despair. This is not the time for despair, it is the time to marshall all your hope and energy to take on this problem. There really is hope, and it's not false hope, that you will do well and gain control over the liver mets.

Try to trade that FALSE DESPAIR for GENUINE HOPE.

Sending healing energy your way. (we learned that at miraval!)
Chris

IRENE FROM TAMPA · 01-05-2008, 10:09 AM

I just read an article in this month's issue of CURE magazine about a drug called NEXAVAR which was approved on 11/19/2007 for people with inoperable liver cancer. It is an oral drug that supposed to block molecules believed to contribute to tumors blood supply. Pls check this out with your onc.

Here is the web site for them: www.nexavar.com

Good luck my friend. I had tumors in my liver a few years back also but was able to have my liver resected and that got them but I know sometimes it does not work out that way depending where they are and how many. Hope you can get good info on this for you.

Let me know how it turns out and what you find out ok?

Carolyns · 01-05-2008, 02:58 PM

Hi,

I am sorry that you have to be in the liver mets club but there is much reason to be hopeful. I have mets in a number of places including the liver. The liver mets are since a year and a half ago. We tried Gemzar first because it doesn't make you lose your hair and we felt that I had time to try this first. Anyway, so far it has done the trick for me...

I felt similar to you but have found so many great stories to hold on too. My doctor's practice has ladies going for over 12 years to date... It is not easy but once you decide on a treatment and you get some positive results you find hope. It is a very tough journey but you can do it.

Love, Hope, and Peace,

Carolyn

hutchibk · 01-05-2008, 06:10 PM

HavahJ - hope all of this helps calm your deservedly frayed nerves. Sounds like there are mountains of liver mets stories here to offer you a lot of potential options. This is a GREAT thread, and I plan to copy it for my "hope not, but if needed" folder...

Thanks everyone!

HavahJ · 01-06-2008, 05:03 PM

I have 15 suddenly - only one other met skull bone. The mets are on both lobes - not good. The came in 6 weeks and are shallow. They're starting mr on herceptin and abraxane tomorrow. What do you think? Then maybe moving to "spheres". They said maybe a year, only 20% chance of 5. The people on this board are the survivors - a skewed population. The ones where liver treatment didn't work aren't here. I'm a basket case - I didn't expect this so fast.

Mary Jo · 01-06-2008, 05:16 PM

Hi Havahj,

I do not have liver mets but felt the need to respond. First of all let me say that I hear your fear and can only relate it to as far as how I felt when I first heard the words "you have cancer" as I felt forsure I would die too. But I did not. At least not as of today.

You dear "sister" are here today too. You are here and ready to embark on a fight for your life. I will start praying that this "fight" will be successful for you and KNOW BEYOND A SHADOW OF A DOUBT in can be because many have succeeded in "beating the beast down." I promise to pray for you regularly and please know that I care. I do.

Sending love and peace to you,

Mary Jo

dede10 · 01-07-2008, 12:31 PM

I originally had liver mets...6 of them

...I felt fine, but was dx'd at death's door (or so I thought) It will be 5 yrs since my very first Chemo, and dx on March 28th

Now, I keep fighting this, it HAS been an ongoing battle!

Andrea Barnett Budin · 01-07-2008, 02:26 PM

I AM SO DEEPLY MOVED BY YOU, Havah and Dede,

I want to tell you that I was orig dx in '95 w/stage IV invasive *lobular* (not good) carcinoma. 2 out of 21 nodes and a 9cm tumor. I had a mastec and tram flap reconst. 4 Adria. 8 CMF.

In Aug of '98 I metastacized throughout my liver. It was then discovered that I was HER2+ 80%, ER/PR-. I was given less than a 15% chance of survival. I truly thought I was going to die. I was blown away. 9 mnths of Taxotere (w/Shingles in between and denied chemo! for 10 days) -- I hurried getting rid of that hideous virus, knowing I had NO time to lose!

I felt motivated to fight w/all I had. I took Valdex per doc (for Shingles) + supplements per my nutritional oncologist. My beloved nut/onc has had me on a regimen since Oct of '98. He has all systems going. Boosting my immune sys to deal w/it all. Supplements to: Detoxify my liver, neutralize free radicals, protect cells from damage, prevent cell proliferation, energize, get my heart healthy along w/my gums, decrease tumor burden, inhibit metastases and more!

I have been on Herceptin since Nov of '98, now going into my 10th yr! I fed my Spirit words that developed into mental mantras, full of passion and determination. I made my clear, focused Intention and Expectation known to my body and to the Universe.

I do believe that mastering our fears is among the hardest thing a human being can be called upon to do. But the payoff is awesome! FEAR AND FAITH CANNOT OCCUPY THE SAME SPACE. So eradicating my worst case scenarios and barring them from renting space in my head, allowed BELIEF and CERTAINTY to prevail.

I live one day at a time, w/a definitive view of myself far into the future. I live AS IF. As if my desired goal is a done deal. This frees me to live with joy and serenity. Can you see it in my face? People tell me they can. I feel radiant. And I know that is the True Me, my Spirit, that is beaming out from my core.

"IMPOSSIBLE IS JUST A BIG WORD THROWN AROUND BY SMALL MEN WHO FIND IT EASIER TO LIVE IN THE WORLD THEY'VE BEEN GIVEN, THAN TO EXPLORE THE POWER THEY HAVE TO CHANGE IT." EXPLORE YOUR POWER, MY SISTERS. I SAY THIS WITH A HEART FULL OF LOVE FOR YOU AND YOUR STRUGGLE. I KNOW WELL HOW DAUNTING THE TASK AT HAND IS. BUT IT IS DOABLE!

IMPOSSIBLE IS NOT A FACT. IT'S AN OPINION. IMPOSSIBLE IS NOT A DECLARATION. IT'S A DARE. IMPOSSIBLE IS POTENTIAL. IMPOSSIBLE IS TEMPORARY. IMPOSSIBLE IS NOTHING." David Beckham

Success comes to those who refuse to accept anything less, w/every fiber of their being. Stomping on impossible. Defying statistics. Seeing their victory w/each hr of ea day. KNOWING it will come, w/a faith that is irrepressible... Resolve to be one of Life's victors! And make it happen my fellow Warriors.
Sending healing energy always, Andi

Bill · 01-07-2008, 06:58 PM

Hi Havah! Please know that I'm thinking about you and praying for you daily. You've said that the women answering your posts are a "skewed population", only the survivors, but you might well be part of the "skewed population" this time next year, and the year after, and the year after, etc. They have faced similar odds as you and beaten them back. Please do consider and look at yourself as part of the survivor group. They did it and I know you can too! Better and better treatments are right around the corner. Every morning is a new opportunity for hopes and dreams! Dare to hope! Dare to dream! You can do it, don't sell yourself short. I know the bad news they give can be crushing, but someone has to be in the survivor percentage, why not you, and you, and you, and you all! Love and peace to you all, Bill