Liver Mets
 

This is for anyone just diagnosed with liver mets who's new to this board. On the home page there's information about liver mets that is very dismal and discouraging. I think it is probably old information, predating the newer, better treatments.

I was diagnosed with liver mets in May, 2011. They are healed--my liver's doing pretty well (except for some extra work it has to do to process Kadcyla). My oncologist says that, in her experience, once a metastasis site is healed it stays healed. I have some other areas of concern (lungs, chest, spine) but, again, the drugs are controlling them and, in most cases, beating them back.

I just want you to know it's not as grim as some things you've read (including on our home page) might lead you to believe.

Re: Liver Mets
 

So glad you are taking the time to update this info Amy. My two liver mets were completely wiped out after just 3 treatments of Kadcyla back in March of 2011. I still however have not found out if in arm two of the trial I was on, I received Perjeta or Placebo and we are still working on getting a solid answer to that.

But either way, I too, benefited greatly from TDM1 and pray others see we are proof that better treatments are available and working! Thanks for posting Amy- I learn so much from you and read often.

Re: Liver Mets
 

Vicky,

It's good to hear from you. Thanks for your comments and for the update.

Re: Liver Mets
 

Thank the Lord for your great results! (both of you)

:-) Penny

Re: Liver Mets
 

I was diagnosed in 2009, and I'm doing well too. I had a liver resection, a microwave ablation and SBRT, as well as all the drugs listed in my signature. They aren't going to be able to say "It's gone" with me as there is a lot of scarring and changes that happen with these treatments that muddy the digital waters, but right now, it appears that I do not have active cancer. So far, at last PET, it has not spread anywhere but the liver either.

There is a phrase called oligometastases and it means that a few of us are diagnosed with very limited spots of metastases, which are still treatable with local methods and which are possibly curable although nobody wants to go that far with it.

The liver can take a beating and still function so there are a lot of treatments out there for us now that used to not be done before. The thinking has changed and that is good for us, we live in much better times now than a few short years ago. Let's hope the progress keeps coming and we can all post back here ten years from now.

Re: Liver Mets
 

Ann,

I'm so glad to hear from you, and to get such a positive report!

Let's make a date to post an update in 2023.

Amy

Re: Liver Mets
 

I am so thrilled to see uplifting news from you all!

We sure have come a long way, baby!

Re: Liver Mets
 

Amy, I meant to thank you before for this positive thread - so thanks! My single liver met and couple of lung mets are stable still after finishing last round of chemo in June. I'm coming up to six years since I received my Stage IV diagnosis.

Ann, great to hear your update.

Cheers Marie x

Re: Liver Mets
 

Amy so pleased to know you're doing well and I'm sure any one diagnosed with liver mets will find your post inspiring too.

Re: Liver Mets
 

Hello all,

I, too, was diagnosed with Stage IV breast cancer with a solitary liver met, two years ago this month. I have been on Perjeta and Herceptin since August 1, 2012 and have been doing good thus far. I work fulltime, exercise, travel out of the country, and my husband and I bought our dream home this summer. I think I have been pretty lucky as side effects have been minimal and I have been able to go pretty much what I have always done. Just need to be in bed at a decent hour these days. That, and the vaginal dryness sucks. But hey, I am almost 51 years old.

Thanks, Amy, for posting this. I always appreciate your posts and enjoy your blog. The medical community is producing new technology and drugs at, in terms of the medical community, at a very fast pace. Stats will be very different 10 years from now and us current stage IV people may just be the trendsetters talked about. If anyone would like to PM please feel free to do so.

Take care,

Jackie

Re: Liver Mets
 

Thanks Amy, I have been paralyzed by my stage IV liver mets diagnosis in Dec/12. Jo

Re: Liver Mets
 

My onco has recommended Perjeta for me but it's not covered in Ontario so we're debating how long can we afford $3000.00 a month. 😫 Jo

Re: Liver Mets
 

Dear Jo,

So sorry you're experiencing so much difficulty, and also sorry your health plan doesn't cover Perjeta. That's sad. :(

I assume you're getting Herceptin? And what else? I actually think it was Taxol and then Abraxane that kicked my liver mets to the curb (along with Herceptin).

My oncologist said she's never been unable to get a treatment for a patient that she thinks the patient should have. She says there are ways to get free or reduced price medications. Have you tried that?

Hang in there, Jo. Keep coming back.

Re: Liver Mets
 

Had 12 weeks of Abraxine with herceptin for life...I'm in Ontario, Canada so the Province won't fund it and we don't have a private drug plan...stressed...should I mortgage the house...is it worth it and will I live longer? Don't know what to do but I have to do something before progression. ��

Re: Liver Mets
 

Jocanuck, Perjeta is the ONLY therapy that has kept me stable and stopped liver progression in my long list. (At least, we'll find out at my next scan as I am now having rib pain that I suspect is mets - but as we know, no treatment works forever.)

But would I give up my house for it? No. I am going to die anyway and I know that, and I'm not going to leave my family destitute just staving off the inevitable. But that is a HORRIBLE thing to have to think about.

I can't imagine having to pay 3k a month for a drug, and I wouldn't' be able to do it. In the US, it was just approved for early stage patients too and that means insurance will cover it. Mine is even given off-label (without docetaxol or any chemo) and I've still never had a problem or had to pay anything.

I have three ideas about what I'd do if I was in your place and I'd do #3 first. :) :

1. Make a stink with the media - a drug that is so effective that it is now used to prevent mets in early stage cancer has just this month been approved in the US and has done remarkable things for metastatic patients - and it's not approved in Ontario? You might be able to play this up in the media. Who knows, maybe through your efforts you might be able to get your government to approve it for everybody. Too bad October is over - the media is always looking for breast cancer stories in October. But Christmas is coming and you can make a story out of it and that's what you have to do to get the medias attention - make it a heart-warming story that everybody can relate to. Do you have kids? "Dying mom denied life-saving drug" is always a good story. One woman here did a YouTube video begging for Perjeta (before it was approved here) and it went viral and she got it. She was on her death bed and now she's doing well. If you want I will see if I can find it.

2. I might try to get a friend to do a "GoFundMe" account and see if you can get donations. If you have somebody who can write a compelling story and have friends who are active on social media who are willing to circulate it, it might help, especially over the holidays. You likely won't get more than a month's worth but you never know what will catch on and hey, it's a month, right? If you could get enough to cover 3 months, that can give you an idea to find out if it's working and what you have to do to continue.

3. You should definitely call Genentech. They can be very generous with what they offer patients and they may be able to provide support, a discount or something like that. http://www.gene.com/patients/patient-access

Sorry you have to fight for something so effective. Maybe you can be the one to change the laws for all in Canada, that would be quite and accomplishment and a great legacy.

Finally, herceptin and abraxane is very effective and if you haven't had progression in a year, you are on a very effective treatment. You don't need to add anything yet until you experience progression, do you? Mostly the way it works here is you are on a treatment and if it works - stable or no progression, you stay on it. Then when you do have progression, you start another treatment. So if you are stable, your meds are working so I think that means you have time to put something in place. Of course, I don't know anything about your condition or treatment, just the few things you posted here, so I apologize if I'm incorrect.

Good luck. I hope something works for you.

Re: Liver Mets
 

Coolbreeze, wow that is great advice!. I really appreciate your posts and the time you take to help everyone out. I have learned so much from you.

Jo, I think Genentech might also lobby specifically on your behalf. They are probably already lobbying the Canadian government to cover this drug so maybe they will have some ideas. They will help with copays too, so that might help to at least offset expenses. They have a program you can sign up for that will assist with copays for Herceptin, so maybe they have something for Perjecta as well.

Finally, Bunty: you look fabulous in that gorgeous dress! I love it!

Shirley

Re: Liver Mets
 

Thank you ladies for the great advice! Cool breeze I'll take door #3 please. That's my only option in fact. This is what I posted a few minutes ago on the Canadian board at BCO.

Ho ho it gets better....I emailed Laurie Kingston,from Ottawa, she blogs "not just about cancer". Nice lady we met during one of our herceptin infusions.​ she's same as me HER2 and has been Ned for 5 years yahoo, but last year developed brain mets which removal was successful, yahoo again! She's still Ned yippy yahoo! My reason for emailing Laurie was what I discovered...

Now....I thought yesterday was a shitty day till I was checking Ontario drug rules today :)...I'm pretty sure my Onco did try to qualify me that's why he told me to beg...now the Ontario herceptin RULE...if I have progression on herceptin I NO LONGER QUALIFY for herceptin or access to Perjeta period. No herceptin mix with chemo nope..I get dropped and so does my paying for Perjeta.....wow...what a gamble...I don't gamble ������
Onco told me the price for Perjeta is $3000.00 and no compassion rate with hospital or social worker. USA price is $6000.00. 3k is a deal...Now I haven't called the company as they will tell me to send letter to Ontario as well so I'm doing Ontario first. Pharma wants patient demand and pressure put on Province. My onco told me it was WAY overpriced and NOT worth it....but...not worth it for who...my estate....

Well now, I get that the Province wants it so much cheaper, I agree, but it's my only hope to live till there's another drug or cure Ontario is repeating what it did for herceptin and hundreds of women died because Ontario wouldn't pay. Women that had money went to the US for treatment the rest died.

I'm not the only one here in Canada that's HER2, they're using herceptin/Perjeta combo as a preventative treatment for METS with early BC detection. There's lots of promise with the combo. Ontario was one of the last Provinces to fund herceptin, USA was 1998 Canada was 2005. Geez!
So, I have a gamble to make, I have a ct scan scheduled for Dec 4 and Onco appt in jan. I'll get results from my primary doc as I'll kill myself if I have to wait over a month!!! That would solve the Perjeta problem lol!
You think when you're younger that your life changing decisions are soooooo hard....wow, this decision is a game changer for me...blow the house on drugs...crap! When is a good day to pull the plug?? Jim tells me to do whatever I want, he's okay with any decision I make....so let's vote...
What am I worth...there's no guarantees with this drug but if I don't try before progression I lose this window and if it works how long can I afford to live before we have to sell the house....sucks. Xoxo Jo

Re: Liver Mets
 

I don't understand any of that - in fact, it sounds so wrong to me that I'm starting to wonder about your oncologist.

First, while I don't have to pay as my insurance covers it, I do get copies of my drug bills and Perjeta is on the bill. Nothing on the bill has ever said $6,000.00. I think it's about $3,000 but I don't want to swear to it as I really don't pay that much attention. I'll look next time.

What's weird is your oncologist says it's overpriced and not worth it? To whom? Look at my list of drugs. Perjeta is the one that's worked for me and has allowed me to have a minimum of six months more and who knows, maybe a lot more. That was after I progressed on herceptin. All the studies show that it works very well, so I would ask him why he has the opinion he does?

Or is he saying what I was saying before - that it's not worth it to bankrupt your family to pay for it? Okay, but that isn't his decision. All he should do is give you the odds of effectiveness but you can look that up for yourself.

I don't understand your Ontario legislation but after reading what you say it needs a lot of work and maybe you could work to change that. Because, it doesn't make sense. I know nothing about your government - are you represented? Because, I'd be calling my congress people, my representatives, etc.

Why would progression on herceptin mean you aren't allowed perjeta? They aren't the same drug, they do different things.

It's like saying if you progress on one chemo that you can't have any more of any kind. One chemo kills cells in one way and another chemo kills cells in another, and that's what perjeta does. And, then there is Kadcyla, another drug that also acts on HER2 - can you have that?

It flat out makes zero sense for that to be a law, that you can't have it if you progress - it's backwards. Medically, it makes no sense.

Now, if they are saying nobody in Ontario can have any drug that costs a certain amount, than I guess you come to the US if you can afford it.

I know a woman who works for Genentech and next time I see her I'm going to see if she knows a way to help you. I might see her on the 6th.

This is why we should never let bureaucrats make medical decisions!

Re: Liver Mets
 

Maybe a clinical trials?

http://www.ontario.canadiancancertri...968968&lang=en

Edited to add:

This lady made a stink and got publicity. Bet she got donations too: http://www.theglobeandmail.com/life/...rticle4247220/

And, I keep adding stuff because it interested me, but it looks like Perjeta is approved in Canada: http://www.hc-sc.gc.ca/dhp-mps/prodp...9-eng.php#paat

So, not sure why you can't have it? I am missing a big piece of the puzzle, sorry. I tried to help. :)

Re: Liver Mets
 

Hi Cool Breeze! Your a good lady to know!! That first link is for Tykerb not Perjeta. The only trial showing up in Canada now with Perjeta is for her2+ Gastro none for boobs. My onco told me last week that there wasn't anymore trials for Perjeta. Last January when I first saw him I asked about trials and he said that there wasn't any for stage 4. You are spot on about the trust thing. We never trusted him but we don't have choice options here in Ontario, it has to be proven malpractice to change onco's.

Yes that Toronto women got results because of the small size of her tumor but herceptin was already being funded by Ontario so they had to give it to her. I might start screaming as well....I really don't want to do that tho!!

Yes that last link is what gave me hope last month!!!! When I saw my Onco it was approved for USE in Ontario, the trials proved that it was wildly successful last month and my Onco told me it was NOT funded by Ontario except private drug plans. :(( so that's what it is. He told me to hand write a begging letter to Ontario health Ministry and beg for compassionate use/funds.

Well it doesn't look good, I've been reading like a mad women and all they'll cover is on my death bed. And further reading on that page is where I originally read that they will withdraw herceptin if I progress. I confirmed that earlier today with Laurie Kingston another Ottawa blogger that is the same as me, liver mets, er/pr- HER2+++ Laurie had a complete response to chemo and herceptin for 5 yrs then developed brain mets last year, successful brain surgery, Continued herceptin and is still Ned for her 6th year now. I questioned her specifically regarding progression and her Onco decided that brain mets was not progression and continued with the Herception. It's a technicality that He didn't ask Ontario health about herceptin he just continued treatment...don't ask don't tell type of thing. I'm sure my onco would let me croak...

I discussed my unhappiness regarding my care with Laurie 4 months and she said he didn't sound right but I that I needed an Ontario medical ombudsman to intervene but he/onco hasn't done anything wrong...just that he's NOT that great!