TRUTH - is it basically over?

[HavahJ]

I had a single skull metastasis for a couple of years. I just finished the second skull sugery out in California so the tumor is almost gone. I'm not on the board much because most of my stuff didn't connect with most of yours. I came home from surgery a week ago and had a routine PET - just had one 4 months ago. I've got it in my liver. The myth that once in bone, stays in bone flew away. Liver is the worst place, right ,except brain? The onc. said something about 15 spots? How could that happen in 4 months? Must be growing very fast. He's talking about heavy chemo. I'll have to be in the hospital because of multiple sclerosis and other stuff. How long do most people have after liver mets? Look, I know some people live fairly long, but I need the usual and real information? The onc said not to bother finishing the radiation for the skull tumor because the disease is systemic now and it won't matter. I was going to start tykerb right after the gamma I'm by myself so decided to put in a blurb again, but not expecting too much response because all I've ever gotten is a few. My case has just gone so weirdly. Anyway, thanks for listening. HavahJ (If there's a response, please leave out the religious stuff)

[Mary Jo]

Hi Havah,

I don't have much to offer as far as personal experience with mets to liver, bone and brain go but I know many here do and I also know many here have thrived while living with this and treatment has been very successful for them.

Basically I wanted you to know I read your post and care about what you're going through. I really am sorry this is happening to you and say a prayer for you now.

Love & Peace,

Mary Jo

[Sheila]

HavahJ
There are several on this board who have or are battling liver mets, to all degrees. It is not the place of choice for mets to go, but it is treatable....some who were given basically no hope are doing well some time later. It sounds like you need to get the boxing gloves back on as you are about to go "back in the ring." There are so many new combinations of drugs to try, if something isn't working, there will be something else.....please know that we are all here to support you in any way we can...sending you a big hug and lots of strength.....wish there was more I could do to take some of this burden away from you...

[Lani]

http://her2support.org/vbulletin/showthread.php?t=27755&highlight=liver+Lani

[Lani]

Havah--sounds like you are beside yourself

Take a deep breath, clear your head and put "liver Lani" into the search box above--the first article you find is:


laser ablation of liver mets (when few) may extend survival a median of five years!
http://www.docguide.com/news/content...2573A6008195A2

That was posted 12/6 but I have posted more articles and there are other methods of treating liver mets with promising
results.

Besides having no personal experience I am not qualified to give any advance and work hard not to try to other than---

gather all the information you can and ask a lot of questions.

Hope this helped!

(repeat from memory of what my first post --the one "eaten" said)

[Lani]

When things have calmed down and you feel things are headed in a more positive direction, I would appreciate your input:

I have been reading articles about herceptin "curing" the demyelinization that occurs with leprosy.

Havah, since you say you have multiple sclerosis: did you have Herceptin as part of your treatment and did you notice if it made your MS better or worse?

Just asking as they are trying to use several different monoclonal antibodies to treat MS including rituximab if I recall right and I was wondering if herceptin had an effect.

Thanking you in advance,
Lani

[IRENE FROM TAMPA]

I am so sorry to hear of your progression to your liver.

I know exactly how you are feeling having gone through this for the last 12 years. But as you can hear Havah ..... 12 years and I am still here.

I had a couple of tumors in my liver for many years. We managed to keep them stable with different treatments. Mine happen to be in a location which allowed me to try the Abalation procedure back in 2003. Unfortunately a tumor returned in the area after 7-8 months so in Sept of 2004 I had that half of my liver removed. It has since grown back very nicely and so far cancer free. I will be honest and tell you that I have progression in another area but I feel that my liver is again healthy.

I just keep battling and doing lots of research to try to stay ahead of this predator in me.

I was on the Tykerb/Xeloda trial last year from Sept 2006 - Sept 2007 when I had pregression. But I feel that was a great response and they say that Tykerb can pass into the brain so I feel this is worth a try.

I would talk to your onc about how he feels about either ablation or surgery if possible to your liver. I know most doctors do not like to do surgery once it is systemic but I am in the process of talking to my onc about removing a couple that have popped up in my neck area if they are easy to get to either by ablation or surgery.

Good luck Havah and never give up my friend. You are worth the battle.

Please contact me if you want to discuss further. I have a strong shoulder and would be happy to help you in any way that I can.

[StephN]

Dear havahJ -
Thanks for getting back to us on this board. I think with your new diagnosis you will have a LOT more in common with more of us here.

When my extensive liver mets were first found exactly 6 years ago, the report said "too numerous to count." The estimate was that over 60% of my liver was then tumor.

I had no idea how long I could live or if I could fight this new development. In my case it happened quite quickly as for you. My thought was to get tough, take the drugs and go a day at a time. The infusion nurses were telling me at that time that the liver was the MOST treatable organ for mets. That there were patients with good results. It was possible to obtain remission. I had a ray of hope.

There are many new targeted therapies so you may not have to take the usual chemos that are harder on your body. Also, is it the surgeon who took off the skull tumor who says not to finish the radiation?? That seems strange to me.

Get another opinion if you are not happy with your regular onc.

P.S. IMPORTANT to know that your liver is an organ which CAN and DOES regenerate itself. When the tumors die that area can be replaced by healthy tissue.

[kareneg]

Dear havahJ

I have been living with liver mets for almost 7 years. I am so sorry you have to go through this it breaks my heart this beast is relentless so keep strong my friend and fight it with everything you have. As always you have been in my thought and prayers and will always be there.

[Bill]

Hello Havah! I'm sorry to hear your news, but as the other ladies have stated, liver mets are highly treatable and new combos. of treatment are being approved at an ever-increasing rate. As far as halting the radiation to the brain goes, they may be anxious to get you on the chemo. as soon as possible. My wife had liver mets, was on Gemzar, and then and MRI of the brain discovered several lesions. They halted the chemo treatment while she had the brain rads because they said the Gemzar would intensify the rad treatments to a dangerous level. I don't know if all chemos would have this same intensifying effect though. From experience, I would advise you to continue the brain rads while beginning chemo, any way possible. Seek a second opinion, and keep asking those questions until you're satisfied that you're getting an honest answer. Educate yourself as much as possible. Be strong and remember the old saying , "the squeaky wheel gets the grease". Love and prayers, Bill

[jhandley]

Dear Havah
I have been on herceptin for 2.3 yr after a single liver met which disappeared quickly. Hang in there....all is not lost. Take it one day at a time and know we are thinking of you.
Jackie(down under)

[DonnaD]

HavahJ
I hope you find comfort in the responses from the board on people who are currently fighting liver mets and winning. You are not alone!
Donna

[Barbara H.]

HI HavahJ.
I had liver mets 3 1/2 years ago and they are no longer detected. I also had a 3cm brain tumor at the same time. There is always hope, and as long as you have treatment options, you have the opportunity to have effective results.
My thoughts are with you.
Barbara H.

[fullofbeans]

It's never over till it is over! It seems to me that you still have many options open to you.

I understand that news of liver mets after dealing with you brain mets must be very hard to deal with. However I trust that you will find the courage (like many people on this board) to want to mentally continue fighting and to change your frame of mind to look for what you can do now, I think by posting here you actually show this. Please do not give up even if you are feeling alone right now.

I did various treatment for my liver mets you can check my signature; I beleive in hitting things hard so I went for chemoembolisation and laser treatments the secondary effect were somewhat insignificant compared to taxotere.

Good luck with whatever you decide is the right option for you.

[Bill]

Hi Havah! Fullofbeans beat me to the punch! You may have felt all alone, and at times you may still feel so, but please realize that by coming to this wonderful site, you now have enlisted the aid of countless warriors and friends ready to do battle side by side with you in your struggle. Please know that we are all thinking of you and praying for you. Stay strong and keep us posted. Love, Bill

[chrisy]

Hi Havah,
I don't know about "in the bones stays in the bones". I'd never heard that...I think often bones are the first site of mets, but progression to other areas eventually is unfortunately the nature of the beast.

As for TRUTH...I was told by my uber-oncologist when I was diagnosed with extensive liver mets in 2004 that it was not curable but it was treatable. Another truth is that each individuals experience, response, and survival is different. In fact, that was a major theme at San Antonio - that more and more we must view treatment options on an individual basis.

If you have extensive liver disease, it is important to get it under control, and for me the approach was to go with a heavy chemo combo (T/C/H). It knocked those mets out and then herceptin kept it in remission for 2 more years. I am currently dealing with a much smaller recurrence, again in the liver but still believe this can be controlled and managed for a while longer. Nobody knows how much time that means, but I hope a lot.

true, you have systemic disease, so the chemo may also help the skull mets. Also, as others have mentioned, Tykerb is thought to be protective of the brain, so that would be a good option in combination with chemo.

There are still options, I hope you get this under control quickly.

hang in there
Chris

[tousled1]

Hi Havah

I do not have any personal experience with liver mets but from reading the board here there are many women who have successfully treated liver mets for many years. I agree that tykerb may be an option for you at this point. Many good ideas have been posted and I just want to let you know that I'm thinking about you.

[juanita]

Croos my fingers I never know about mets, but just wanted to let you know you are in my prayers!

[Lani]

ABSTRACT: Liver resection for metastases from breast cancer
[Journal of Surgical Oncology]
Background and Objectives: The value of liver resection for metastases from breast cancer is still controversial. This study was conducted to clarify safety and effectiveness of hepatectomy in this conditions and to identify selection criteria for patients suitable for liver resection.
Methods: From January 1988 to December 2006, 39 patients underwent liver resection for metastases from breast cancer. The outcome of these 39 patients was retrospectively reviewed using a prospective database. Prognostic factors for patient survival were determined by univariate and multivariate analysis.
Results: None of the patients died perioperatively and the morbidity rate was 13% (n = 5). The overall 1-, 3-, and 5-year survival rates were 77%, 50%, and 42%, respectively. In the univariate analysis, metastatic manifestation prior to hepatectomy, vascular invasion and resection margin revealed statistically significant influence on survival. The multivariate analysis identified only resection margin as an independent prognostic factor for survival.
Conclusions: Liver resection should be considered in the multimodal treatment approach of patients with metastatic breast cancer. Hepatic resection can be performed with low risk and offers a chance of long-term survival. Achievement of a curative resection and less important absence of previous metastatic manifestation represent suitable criteria to select patients for liver resection.

[HavahJ]

I've gotten 15 liver mets in one month, but no symptoms. I don't think they'll resect that much? If chemo doesn't work I'm dead in 4 months I guess. Have you heard of proforms or something?

[HavahJ]

Lani, my email is HavahJ@aol.com - much easier communication.

[madubois63]

Geez - I stay away from the boards for a few days, and everything falls apart. What are you talking about??? Just because you have mets in the liver DOESN'T mean your going to die in 4 months Havahj!! If this is what you doctor is telling you, you better get a new doctor right away!!!!!!!!!!! I had mets in my liver 4 YEARS ago and I am still here. I haven't had mets to the bones, but I've had mets to the lungs (twice now) and leukemia. Everyone of my doctors has learned that you never tell me I'm going to die!! You need to teach your doctors a thing or two. Your looking for answers that NO ONE can give you. Articles can give you statistics, but they are based on information that is several years old. Come on girl, you've been around this board long enough to know this. And treatments are changing every day. I took carboplaten, taxatere, herceptin and femara. Within three months, the lesions in my liver were half the size and in six months they were gone! This past summer, my liver rejected my bone marrow transplant. Within a few weeks of treatment, my liver did a 360, and now I have better liver functions than many of my friends that don't have cancer. The liver is an amazing organ and can rejuvenate itself. Please don't give up. It is a new year and a new day. Time to wipe your self off and fight the good fight...And yes, I am yelling/preaching at you (with love).

[Andrea Barnett Budin]

Okay, Havah! I had extensive liver mets in Aug of '98. I was given Taxotere and Herceptin and I was NED by the end of May '99. I remain STABLE, and still taking H ev 3 wks! So, please don't give yourself a sentence! I did suspect I was dying, feeling the effects of T on my body, bringing me to my knees, but I reminded myself of what the T (& H) must be doing to my cancer cells! I picked myself up off the floor and fought w/everything I had, my mind (and thoughts), my body (weakened but under command to a good degree) and my Spirit (which is capable of bringing miraculous results to you!). I prayed, I meditated, I took supplements, I rescripted my inner dialogue and mental imagery. I decided to see myself far into the future in vivid detail. I lived AS IF what I wanted was already a reality! And, consequently, I found myself living with a kind of joy and peace, KNOWING with all my heart and Soul that I was calling my desired goal to me!

You may feel that you are deep in the woods, but you are not lost! Don't even think that! YOUR BODY HEARS EVERYTHING YOU THINK, OR WHISPER, AND TAKES IT PERSONALLY. Your body does as your mind commands. Don't forget that! It's a mighty tool you have at your disposal! Fight, Havah, fight! And yes, I, like Maryann, am yelling... With love...
Andi

[Bill]

Hey Sweetheart! I know you've been hit with an awful lot of really bad news lately, but please re-read the posts of these wonderful women. Take a deep breath and try to relax in whatever way you normally relax. These brave women have been right where you are right now and they will give you good counsel. Nobody can tell you that you have 4 months. There are so many treatment options out there. If your liver mets are only in one lobe or localized, liver resection is an option. Please try to get a second or third opinion. Sometimes, if you keep asking an onc. for a prognosis, all they tell you are averages and statistics. There are so many different variables and controllables in your situation. Each person is unique. You must fight the good fight. Do not despair. Love to you, Bill

[HavahJ]

Hi Bill, I have 15 liver mets in both lobes that I got in 1 month. In that same month my mrker went up 14 points. Before this I had one skull bone met for 2 and a half years. That was the only met. What do you think of the situation? I am starting chemo Monday, but I don't understand how this happened so fast. What does that mean? My liver function is norma and no symptoms. If I don't respond to chemo, am I just going to die? I 'm scared to death. This was totally unexpected at this time. I still have staples in my head from the last surgery! Doesn't this sudden windfall of liver mets seem weird to you? Write me if you can, HavahJ@aol.com. Sincerely, Jan

[Karen W]

If I am correct, I think Gina had extensive mets to the liver back in 1999 and as far as I know she is doing well.

Karen

[RhondaH]

as she is quite busy and doesn't visit the board as much, BUT keeps up to date on all the latest.

Rhonda