Liver Mets Only: Any Information You May have....

roarkebak
  • By roarkebak · January 12, 2013 at 8:49 pm · 25 replies
  • In Living with cancer
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Hello All,
I have been reading this site for a while now and I can only say I am inspired by your strength, humor, fight and knowledge. Now, I wonder if you can help me...

In summary, my sister and I are both BC survivors and we are both BRCA1+. However, my sister is now a Stage IV BC with liver mets ONLY. Her recurrence was missed by her onc in 2009 (original diagnosis in 2005) and was formally recognized in 2010. Since then she has had two liver ablations, the aromosin/execmestain (?sp) combo did not work, nor did the Faslodex. She has been off all meds since August and refuses any more chemo (did that in Round 1).

Can anyone suggest anything that they have tried or if you are also a liver mets only patient and what is working for you? She lives a very healthy life (excluding the cancer!) and has resumed all vitamin supplements including milk thistle (which is new to the mix).

Many thanks!

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25 replies   

LauraW43

My liver was not affected yet, but I just wanted to let you know that someone will respond to you. Hug your sister for us!
LW

basilboots

I do Have Bone mets too, but weekly Taxol has been working well on my very abnormal metty liver and rightly or not am taking hemp oil.....id try that, Have only read one négative listing for it....
Kind regards Jani, nz via uk....x

stephg

I found liver mets in November 2011 and did 5 months of Xeloda. Yes, it is chemo but it was much less harsh on me than the TC and AC iv chemo I did in 2009 with my original stage 2A diagnosis. I had some problems with my hands and feet (hand and foot syndrome) but otherwise was fine. It shrunk my lesions to almost nothing. In April I started Femera and am happy to report that in December my scans were NED. Chemo is sucky no matter which one you do but if it gives me one more year (even one more month) with my darling daughter I'll do it every time. I hope you and your sister find the right path. Good luck to you both!
~steph

roarkebak

Thank you ladies!

Painter

I have been living with bone mets for over 8 years but now the cancer has spread to my liver.
Recently on Navelbine...some fatigue..but not other bad side effects.two weeks on, one week'off. have been on it three months and will geta scan soon. Do not yet know ifit is working.Understand not wanting to do chemo and making other choices.

sending hugs to you and your sister and hoping whatever you both do works and gives you some decent quality of life!

jjcricket

I have done coffee enemas 2 times a day for almost 4 years to help my liver detox.

Snickersthebeagle

I had extensive and I mean extensive liver mets 7 months ago (one tumor was 8.5 cm) and onc. put me on carbo/gemzar and within 1 month my liver mets shrank 85% and by October NED. Started January 2013 with gemzar ONLY as onc. wants to save the carbo later on down the road. I am now on a "maintenance" gemzar, meaning onc. reduced the velocity of cocktail by 25%. Only symptom is small amt fatigue, otherwise feeling GREAT. I also put 1 teaspoon of turmeric in my veggie juice about 5 x per week.

sistersnevergiveup

Thats awesomw Snickers!!!! roarkebak I second the xeloda!

roarkebak

I appreciate your feedback! Stay strong!

plamont

Well I went to Montreal for a mtg with a radiologist who specializes in radioembilization - although they are not doing clinical trials on breast cancer mets to liver - he said he will watch me to see how my chemo progresses.

I just started Taxol on January 4, 2013 so have only have 2 treatments - he wants to see if the chemo will keep the disease at bay - if it doesn't then he will consider me for the beads treatment to the liver - after he takes it to the Tumor Board - so I have to wait 3 months - do the CT Scan and then see if the tumors are growing, getting smaller or staying the same.

I can understand his position - although I was hoping they would do the treatment while my body is still healthy before chemo takes its toll - but I suppose it is just too soon to tell how chemo is going. I am going to try to see a Doctor at Princess Margaret who is also involved in this treatment to see if she has same idea. Although her clinical trials are Stage II and in Montreal their clinical trials are now at Stage III. Seems all the clinical trials I have come across are focused on colon cancer with mets to liver and not breast cancer with mets to liver? Are we a forgotten entity!? I will keep fighting.

Feel like crap these days with the chemo now kicking in - but I can't stop worrying - as the Radioloigist said the same thing as my Oncologist - 6 months - and enjoy every minute - I told him I had seen ladies on this site that are coping with the disease for much longer and he said it was possible - but statistics say - 6 months - and that is why Doctors keep telling me this. It is very discouraging listening to these guys. Needless to say I am jumping a flight next Monday for Florida - to enjoy the sun and my daughter for 10 days - - I will be 3 days late for my next chemo treatment - but at this point I think my family and mental well being is far more important. Thank you ladies for all your support - and Yioiu from Iowa I hope your treatment went well and you are recovering nicely - I think of you often -prayers and good thoughts are with you!

megk7

Hi there,

I too have only liver mets. My mother and both her sisters have had bc. One of my sisters has too. None of us have BRCA1 or 2. My sister and I are Her2+. My mother and sisters were not. Must be some kind of generational mutation, I'm guessing. Anyway, I was originally diagnosed in 2001, did chemo, radiation and herceptin and went completely organic (well really about 90% organic) which I continue to this day. This time around I'm getting chemo, herceptin and perjeta with a conventional oncologist who is open to me using alternative care at the same time which right now includes various supplements including milk thistle, selenium, boswella, wheatgrass juice, veggie juices, raw, fermented dairy and cultured veggies. Quite a few other supplements as well, which I'm happy to tell you about if you are interested, they are just a lot to list.

Once I finish chemo (only 3 rounds to go!), I will be starting a pancreatic enzyme therapy protocol, similar to what Dr. Gonzalez in NY uses. In October 2012, when we discovered the cancer came back, my alk phos was 445 (from my lab, the top of the normal range is 104). Last weeks number is 118!!! The other two numbers we are following are back well within the normal range. YIPPPEEE!!! We haven't re-checked my tumor markers yet - they were at 2500 in October. My hope is that since the PET Scan shows no other mets, that we can kick this cancer out of my body, support my immune system well enough to correct damage at the stem cell level, and with care, have many more years to do life with my family and friends.

All this to say that I've put together a team of doctors that I trust. They are not all familiar with the other's field of expertise and so they are not always in agreement. It was important to find doctor's who are open to conventional and alternative methods of healing and who are willing to learn with me. It's my body, my life and my choice. I pray, I study, I choose to the best of my ability and according to what my body tolerates.

The most important aspect of my journey with cancer is my relationship with God through Jesus Christ. He is my rock, my comfort, and He's always there for me, even when I wake up lonely and afraid in the middle of the night (He never sleeps, ya know). Getting to know Him better has been the best gift in this process.

I wish the very best for your sister, remind her that our livers can regenerate and that gives me hope and I hope it does her too!
The kind of love and help you are showing her are vital for her journey - good on you!

ReneeSwan

I was diagnosed with liver mets 4 and a half years ago. I was told I had 6 months to live. I did 6 months of taxol it reduced my liver tumors to one small met. I stayed stable for 3 1/2 years. Had progression 6 months ago. Now on xeloda and doing well. There is hope! Chemo has extended my life for which I'm very thankful but every one has to make their own decision about what is best for them. I pray for all of us.

Bestbird

I am so sorry to hear about your liver mets and hope you find a tx that works wonders for you! Here's a great site for treatment options: http://beatlivertumors.org/Liver_Directed_Therapies.html

roarkebak

Great info. Thank you all! Keep it coming...

plamont

You are a doll Renee - so inspiring - thank you for sharing your story with me - gives me hope - sounds much better than 6 months for sure - 4 years is great!!!! - love you ladies - hope one day to meet some of you!!

R99

You should look into Theraspheres treatment. They do it at Cancer Treatment Centers of America. Look for posts from Yoie with very good information.

frannyv

I have had liver mets since Jan 2009. I am er/pr++, her2 -, and was on tamoxifen/zoladex shots for 4 years for bone only (2005-2009) and zometa (2005-2008). They tried arimidex and it did not work so I went on Taxol & Avastin from 3/2009-5/2010, and then just taxol 9/2010-12/2010. The liver mets were no longer visible on the CT scans, so then I started Faslodex when I got new bone tumors (2/2011-1/2012) After one year the liver tumors came back. Tried Aromasin from 2/2012-4/2012 but did not work. Now I have been on Xeloda which is chemo in pill form and the tumors are slowly shrinking in the liver again. For what ever reason, the anti-estrogen drugs have not worked on those pesky liver tumors, so I think they morphed into a different pathology.

Depending on which chemo she had before, she can still do chemo. Lots of options out there. If she wont do chemo then not too many options. Certain procedures can be done if all the tumors are in one area of the liver (ablation). I am doing very well taking chemo and have been living for 4 years with liver mets. She needs to do something before the liver tumors get out of hand. Once her liver function is diminished, she will not be able to handle the chemo.
I will keep her in my prayers that she works through all this!

megk7

It doesn't sound like she is her2+? If she is, I understand TDM1 should be approved for metastasized breast cancer sometime this year and there are some approvals already for compassionate use. She may do very well with that chemo. It seems like a miracle to me. Scientists have learned how to attach chemo to herceptin so it is targeted directly to the cancer cells and leaves healthy cells alone.

There do seem to be a lot of options that may not make her as sick as others and may be worth investigating. She may need your help to get through the learning process if she's not up to it.

roarkebak

Hi Frannyv,
Your experience sounds very similar to hers. We also think her tumor change profile and are awaiting results from a clinical trial biopsy to see if that is the case. She's had 2 ablations (both hot and cold) and the tumors are in multiple areas with some damage to the hepatic artery so she is not a candidate for theraspheres. If only her liver was as strong as the rest of her!

roarkebak

Hi megk7,
what is TDM1?

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