How are people with liver mets doing?

Lisa - normally you have to wait a year or two to cycle back onto hormonals; however I wonder why they did not consider adding ibrance to faslodex or letrozol? I would ask. It seems like you skipped what is not a standard second/third line hormonal treatment and we don't have so many options that we can afford to skip one.

It is important to know that we have up to four lines of hormonals to consider. This is copied from Bestbird's guide.

• First line treatment may consist of a combination of either Arimidex and Faslodex (500mg), or Letrozole and IBRANCE
• Second-line treatment might be a combination of either Faslodex (500mg) and IBRANCE, or Aromasin and Afinitor. Note: In second-line treatment, the combination of Faslodex and IBRANCE more than doubled progression-free survival (PFS) compared with Faslodex alone. From: http://www.medpagetoday.com/MeetingCoverage/ASCO/51855 )
• Third line treatment could be Tamoxifen and Afinitor
• Fourth line treatment, which is a single agent, may be either Toremifene (Fareston), Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone)

Perusing Best Birds MBC Guide is always a good idea.

If chemo is where you want to go, Xeloda works well for some people with a good QOL.

Low dose metronomic chemo is really just low dose chemo. If it were my time for chemo, I would look into it. Something to google.

In any case, if you aren't happy with your treatment, get a second opinion and a third and a fourth until you feel like you are on the right track.

>Z<

intothewoods - when ibrance lowers your counts, it is working. you can drastically lower the dose and even modify the dose schedule until your neutrophil counts rise ... to as little as 75mg for 2 weeks on and 2 weeks off. did you play with doses to try to stay on the treatment?

i love my primary oncologist but i have gotten second third and fourth opinions all along the way. things are changing and there is no single oncologist that knows everything, even the most senior scientist at the most elite institution. my oncologists loves me because bring her ideas to consider. she is eager to discuss and learn and appreciates a pro-active patient. the oncologist are, frankly, overwhelmed by the complex and changing landscape of cancer treatment.

get another opinion.

>Z<

Mzmerz -

It's very important that you get the biopsy done and determine a new treatment protocol ASAP since femara and letrozol have stopped working. You have had an amazing run on femara and letrozol. And, since you responded SO WELL to femara, you are likely to respond to other hormonals. You are in a good position, but you need the biopsy, you need to be on a new treatment protocol and you need to manage the pain.

I am glad that the biopsy will be done on the 29th. I know you are worried about it but it wasn't a big deal for me or any of the other ladies who have had it done. However, I don't want you to go into the biopsy in pain. Given your fear, it is really too much to go into a biopsy in pain. FWIW, I have a terrible medical phobia. Anything involving so much as a needle can make me pass out. So I know fear and fear + pain is too much.

If you can't reach your doctor over the holiday, get someone to go with you to urgent care to manage the pain. You are NOT a whiner. You have MBC and the pain is a serious impediment to your healing. Once the pain is controlled, I am confident that you will be able to call the shots and get yourself through this because your situation is quite manageable.

If the mets in your liver are really aggressive, in addition to systemic treatment like fulvestrant (if you are still ERPR+) or chemo (if your hormonal status has changed) you might consider one of the therapies that treats the mets in the liver directly. Bestbird's MBC guide does a great job of summarizing options to review with your team, but they include:

• Ablative Therapies
  • Cryotherapy
  • NanoKnife
  • RadioFrequency Ablation (RFA)

• HAI Chemotherapy
• NKTR-102 (Etirinotecan Pegol) – Not Yet FDA-Approved
• Radioembolization or SIRT/Yttrium 90 Microspheres (Theraspheres)
• Transarterial Chemoembolization (TACE)

Z, we did play with the Ibrance dosage but I think I remember him mentioned returning to it at some point. I'll have to listen to the recording of that visit which I haven't even done. I think he wants to get as much out of this chemo as we can. A second opinion is probably a very good idea. I do think about how our oncologists must be as overwhelmed as we are and mine is not a BC specialist.

Mzmerz, I'm so sorry to hear about your pain. You are in my thoughts.

Might be. Do you look jaundiced in any way? If so, you need to call your medical team, and ask how to proceed. You don't want to damage yourself waiting till the 29th.

Jennifer

i Hope that everyone had a great New Years!! It was nice to relax for a few days with my hubby and kiddos. I see my onc this week so we can decide what to get started with. I have been off everything but letrazole for 6 weeks!!! My liver biopsy I had mentioned before, came back with hormone receptors still in place, the progesterone % actually went up?? And I tested positive for Androgen, another surprise. Is there anyone else positive for this? Hopefully will get some answers soon!! I hope everyone is staying warm and enjoying the New Year.

ALissa

Good morning everyone,

Got a stupid question, is always in my mind if I should stop drinking my morning coffee due to my stinking liver mets...I've asked nurses and nutritionist at cancer center and no answer...They just look at me like: poor thing bless her heart....

Anyways, I appreciate any input you may have!

I'm not someone veryknowledgeable, having only being DX a few months ago. The question of diet with liver mets is big on my mind. I would hate to give up my morning coffee. My first festive season without alcohol was bad enough!

Did a quick search 'Dr Google' and there seems to be the opposite thought. Apparently there is research to show coffee protects against liver damage. Here's a link to an article in Reuters, also a study on Medscape about coffee and a number of conditions.

I also, found this Post on BCO which discusses coffee and hormone positive BC.

So hard to know what's best sometimes.

Sarah

Hi ladies, I hope you dont mind me asking a couple of questions. I've had bone mets for 6.5 yrs now, and consider myself lucky that it has not spread further in that time. I had an ultrasound yesterday, at the time all that was mentioned was there was inflammation around my gallbladder. It was surprising then when I went to my GP today to find out there was also a mass in my liver that was highly suspicious for mets. I had an MRI and CT with contrast this afternoon. I will get the results tomorrow.

Now to my questions - my MO is on holidays for the next 3 weeks, if this is mets, will waiting 3 weeks make much of a difference? I can if necessary see another MO in the clinic.

Is chemo usually the first line of treatment? I am currently on Faslodex (5 months now), and a bone scan a few weeks ago showed all stable and even some regression, the first ever scan not to show progression . That result has me doubting if this is liver mets.

Thanks

zarovka, thank you so much for your helpful and informative response. I've spent the last few hours reading this thread and some other articles so I have a better idea of what to expect if it is cancer. I still have my doubts that it is, but will find out later either way.

Whatever the outcome, I've had a good run so far and will deal with this as it comes. Thank you all for sharing your experiences and knowledge, it is a great starting point in understanding and learning.

bummer, just got my CT results today. Never good when the doc and not the nurse calls you. The scan showed progression, so I'm out of the immunotherapy clinical trial and we are having to reassess. The good news it I got nine months out of it. The bad news is the platform has shifted again and I have to figure out what's next.

I'm also trying to get an appointment with a palliative care doc to help me manage pain and help me find a thereapist or clinical social worker to talk to. It's really scary being 47 and a single parent and having to deal with all of this

Mattie- The American Cancer Society has patient navigators that could help you as well. You can try them. They will at least be able to point you in the right direction. I suspect that the hospital/treatment center where you get care also has some sort of social worker program. Ask them as well.

I wish you well.

thanks guys! I'll check out the American cancer society site for a navigator for sure! I had a great nurse navigator thru my insurance last go round and I put in a call to request one for this time.

I haven't seen the report (it's the quick and dirty one, not the full write up), but silver lining is my doc didn't mention "new" mets, just growth of the old stuff.

Local control? Like a TENS unit or ablation? That's a great question for me to ask! Thanks

Freya,

I get care through a major medical group in CA and my MO wants me to get scans at the same site every time so there is consistency.

FWIW.

Love,

Patti

Freya - I would ping your MO about getting a biopsy order. You will need one and it takes a while. I know you love MO, and very glad, but get a second opinion. Cancer is complicated and no one doctor has all the info.

>Z<