Mom w/ Liver Mets with Elevated Enzymes: Chemo or AIs?

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PDXson
PDXson Member Posts: 13
edited October 2017 in Stage IV/Metastatic Breast Cancer ONLY

Hi everyone,

So to cut to the chase my Mom has liver and bone mets, she ER+ PR+ Her2-. She was diagnosed with liver Mets in August after having pain symptoms from about June, after several doctor's appointments where they just treated it like it was a muscle or gall bladder issue. The ultrasound in August showed mets in the liver and the CT scan showed the spread in her bones. The onc said the pain symptoms were from "capillary spasms" in the liver and the levels were slightly elevated. It took a lot longer than I would have liked but now she's on Ibrance+Femera going on 3-4 weeks. Last week while two of her levels went down her bilirubin went up which is causing her to be tired and slightly jaundiced and she still is in pain. Today she had another blood exam and her numbers went slightly up no real improvement. I'm freaking out because she seems to be deteriorating and I'm starting not to trust the care she has been getting. I've read about how many women went right on chemo after the discovery of mets and the fact the onc put her on and is still keeping her on Ibrance and Femera right now is making me very, very concerned. Many things I have seen here indicate that we're facing down liver failure and from what I read AIs can take some time to really work. I can't shake the feeling that the proverbial house is on fire right now and the firemen are using squirt guns. My Dad is her primary care giver right now and they are both mentally and physically exhausted from this. I talked to him over the phone and asked him if they had gotten a second opinion yet and they hadn't. I encouraged him to do so and to ask about going on chemotherapy now in order to get things under control.

Because I feel like we got here because the previous doctors didn't consider the worst case scenario when she showed her initial symptoms, I'm worried that the less aggressive approach is going to burn time that we frankly do not have. The other part of me says that if things were really out of control the onc would be sending her right in to take care of things and frankly I'm not a doctor.

I guess my questions is, what is the best course and how much should I push them to consider chemo or is trusting the onc and waiting a reasonable course of action? Also just to lift my spirits and restore some sanity has any one here faced down a similar situation or had a loved one do so? I'm really freaking out that this is has possibly gotten away on us so quickly.-PDX

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  • Micmel
    Micmel Member Posts: 9,450
    edited October 2017

    i am sorry that you're family is going through this, I am also on ibrance and have been for almost 12 full months. It truly does take some time to work. Sometimes even more than three months. They have guidelines they follow strictly, when it comes to this kind of treatment. It is serious yes, but there are many people who are on here on the boards that fight it everyday and beat statistics For years and years, so don't read those, they are outdated and everyone is different! Your mom will get on her treatment path and you will see things slow down for her And it will level out as much as it can. Sometimes the oncologists like to keep the big guns, like chemo in their pockets,to make sure they have something to throw at it years later. There are many lines of treatments she can have. Take one day at a time and try to remember, she isn't going anywhere anytime soon! I know it's scary, but they are making progress.a good amount of medicines are in the pipeline as I type this. I am Sending good thoughts and strong vibes to you and your family! ~M~

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  • PDXson
    PDXson Member Posts: 13
    edited October 2017

    Thanks Micmel I really appreciate that,

    After hearing we weren't getting the results we were hoping for after yesterdays test it triggered a freakout / meltdown because I'm just worried that we're wasting time that we don't have. I've also started a new job that has quite the steep learning curve so I'm just all kinds of stressed out. I was hoping that we'd start hearing some good news with today's test so it was discouraging and its discouraging to hear my parents sound so beaten down too. I'm lucky that I have a incredibly supportive and amazing girlfriend who drove 30 minutes out of her way to spend the night to help me vent/calm down so I'm doing better today. I guess I'm so tired of almost two months of nothing but bad news and seeing things get worse on this and I really desperately feel like we need to stat notching wins. I know these may not be coming for sometime and I've become worried that they may not come at all. I realize that we're going to need to have patience and that the doctor has many options available but man....this really sucks and I really need to hear that she can come back from this.

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited October 2017

    PDXson, I am sorry for everything your family is going through. I wish we could see into the future so we would know what is going to happen. I do know that Ibrance with Femera or Faslodex can be effective against liver and bone mets for many women. As with all treatments, the response rate varies for different women, and there are no guarantees for any of us. As you have noted, it can take several months to see a response. It sounds like your mom and dad have not gotten a second opinion. I think that a second opinion is always valuable. It gives you a little bit of comfort when the second Doctor agrees with the treatment plan, and it gives you another option if the Second opinion differs. Some MOs do recommend chemo such as Xeloda or taxol if the liver mets are extensive or are symptomatic. Of course, I am not a doctor, nor do I know your mom's condition, so I cannot make a recommendation for the best treatment. We have to trust doctors, do research, and trust our instincts. I do, however, encourage you to get a second opinion, for your own peace of mind and for your mom's well-being. Your mother's doctor will not be insulted. Second opinions are common and a decent Doctor will be open to it. Let us know how you and your parents are doing and what you decide.

    Hugs and prayers from, Lynne



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  • cive
    cive Member Posts: 709
    edited October 2017

    PDXson, I am on Ibrance (chemo light, but it is chemo) and faslodex (to suppress estrogen and progesterone) and I also have liver mets.  It did take until my 7th cycle of them to show improvement probably because of what we call tumor flare.  Sometimes the dying cells cause such an inflammation response such that  it is hard to tell whether initial response is good or bad.  I am on faslodex because I took femara by itself for 18 months after diagnosis without progression and switched to Ibrance and  faslodex when the liver mets showed up.  Sometimes baby steps actually contribute to a longer length of quality time without progression.  I would suggest you give the femara/Ibrance a chance to work before getting too worried.  And you can't go wrong getting a second opinion just to ease your mind. 

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2017

    I'm going to agree with previous posts and suggest that your mom continue her current tx. Drugs for treating breast cancer generally take time to work. They are not like antibiotics, which clear things up in relatively short periods of time. I have been on AI's only since diagnosis, and that's been 6 years. All this being said, a second opinion never hurts and may well help lower everyone's stress level. Best wishes .

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  • PDXson
    PDXson Member Posts: 13
    edited October 2017

    Thank you everyone for your input. I'm feeling better, still stressed but better. This sucks and I think we just want her to show improvement now, but it feels better to know that this isn't a unusual course of treatment.

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  • Casun19
    Casun19 Member Posts: 111
    edited October 2017

    Hi, I am on ibrance / letrozole and took 8 months to (2-3 scans) to see "improvement" also know that ibrance can elevate liver enzymes on blood test. See side effects on patients information packet.

    I think you have gotten some great advice from the previous poster's. maybe someone here can give you some input on a good second opinion doc near Portland, if that is something your mom would be interested in?

    Good luck


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  • PDXson
    PDXson Member Posts: 13
    edited October 2017

    Hi everyone, I have a new question based on what I've been reading. I'm worried that the treatment path may have made things worse rather than better. I've started thinking that because the decline in her condition seemed to really start when she started ibrance, which saw her liver levels go up and more dramatic physical effects than saw prior to treatment. She was symptomatic for what we know now was months ( pain and some fatigue) but things seem to have escalated quickly. I know some of this is probably side effects but the enzyme levels are what worries me. Did anyone here see significant elevation in liver enzymes on ibrance before things got better? Also , with compromised liver is chemo still a option? She hasn't had any chemo before (other than ACT when she was a Stage II) and we're still at the early stage of the AI treatment. Thanks-PDX

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