How are people with liver mets doing?
Comments
-
yay Lvin!
0 -
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<
0 -
Lvin, that is great news and totally awesome you didn't have to wait for it!
Thank you for the responses leftfoot and zarovka. I actually did try Ibrance with Faslodex at first. We stopped due to low white blood cell counts. I have 5 days of Zarxio shots after chemo and my counts have been okay so I'll talk to my onc about whether that would work with Faslodex and Ibrance. I hadn't thought of that! I like and trust my onc very much I've been with him from first diagnosis in 2007 and he will work with me. He's currently out of town and I will be traveling too after Christmas. I have another treatment a few days after I return which I'll do and then we'll have a pow-wow. I'm retiring sometime in 2017 and won't start another school year so the chemo-brain won't be such an issue.
I'll ask for Best Birds guide again. I had it at one time but that computer crashed and I hadn't backed it up. I can't blame chemo-brain for that. :-)
0 -
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<
0 -
For the past 2 days I have been having a great deal of pain on the left side that radiates to the back. Sometimes the pain is sharp and makes me catch my breath it hurts so much. I have a biopsy on the 29th, with CT & Contrast (which I am allergic to). I don't want to bother the dr during the holiday, and really, what can they do? It's not like my liver is going to rupture or do anything life threatening, right? I just want it to stop. All I want to do is curl up in my bed and cry. T3 isn't really helping with the pain. I don't want this to be my new normal.
0 -
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)
The pain may be a tumor pushing on something important. Maybe they can do a quick ultrasound to check on things and possibly accelerate your treatment. One more reason to get to urgent care ASAP. However, don't assume the pain is cancer going insane. Don't borrow worry as they say. I have so many aches and pains I cannot count them, but my scan last week showed that I am stable. You are in our thoughts.>Z<0 - Ablative Therapies
-
Loving-great news- please enjoy your holidays -now you can!!!!!!
Babs
0 -
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.
0 -
Now I am getting itchy!! Side effect of the liver tumors?
0 -
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
0 -
MzMerz, just wanting to make sure that your pain on the left is separate from what may be going on in the liver. Liver is on right. I had sharp right side pain that radiated to my back just before being diagnosed and it turned out that some of the lesions had caused a non displaced rib fracture. I did get relief with a heating pad, and after a month of treatment. That pain sure did get my attention. Hope you can get relief ASAP. Love and hugs to all. MJ
0 -
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
0 -
Congratulations on the AR+. You've just opened another treatment door. I'm negative, as I am for EVERYTHING. At least chemo works well.
0 -
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!
0 -
I only work 3 days a week, but I have a cup those days. I have never been told coffee is bad for liver mets??? Someone else more knowledgableis bound to come along!!!
ALissa
0 -
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
0 -
Scwilly thanks for the links!
0 -
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
0 -
Freya - there are a lot of options for treatment of isolated liver mets. whether or not to do local control of any metastatic cancer is hotly debated. getting a second opinion is in order even if your MO was not on vacation. I would go ahead and see someone else.
if it is still looking like cancer after the scans, you will want to get a biopsy before you see any doctor. that will take time to schedule, have the procedure and get the results. definitely get that started.
Bestbird's MBC guide goes through the rather complicated set of options for isolated liver mets. Use the time you have to become an expert. My mets were pretty much gone with systemic hormonal treatment (ibrance). That may be a good place to start.
The good thing is that you have options.
>Z<
0 -
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.
0 -
Freya - let us know how the CT/MRI goes.
If it is cancer, the trick will be getting the biopsy ordered and scheduled with your onc out of town. You want a biopsy and a new pathology because cancer often mutates when moves and especially when it is in a new organ. Pondering treatment options without the biopsy is not a good idea.
>Z<
0 -
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
0 -
Mattie,
At my CareGroup there are a bunch of different folks I have access to including a pain manager and a social worker. Social worker is in fact free. Hope that helps. Love to you.
Patti
0 -
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.
0 -
Mattie - Sending healing thoughts and support. Do you still have liver mets? Where were the new mets? Have you considered local control of the metastasis that is causing you pain?
I was just reading about how hormone therapy sometimes works on TNBC. Many ideas come to mind; however, if you have an MO that got you into a good immunotherapy trial you are already getting the best of care. Very interested in the thought process as you proceed.
>Z<
0 -
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
0 -
Hello again,
I have the results of the CT scan. It says the liver has infiltrative metastatic liver disease and cirrhosis with regenerative nodules. The results of the MRI seem to be lost in computer glitch land.
My GP says the main diagnostic tool is the CT and the MRI is more for measuring the size? Anyhow, I'm still not 100% convinced. This was not my usual imaging place, that is in a different town. One part of the report states "The right breast is not visible??" If he had read the clinical notes it says that I have had a MX. Little things like that erode your confidence in them.
My MO is great, I left a message and she called me back even though she is on holidays. She phoned through a script for Dexamethasone, which should help with the inflammation, nausea and pain. I have decided to wait for her to return and go from there. I trust this woman with my life, she has been treating me for over 5 years now.
I will spend the next 3 weeks doing my research just in case.
0 -
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
0 -
Hi Patti,
I usually get them all done at the same place. This was organised at 3.30pm, and my usual place is a couple of hours drive away
I will wait in future, lesson learnt.0 -
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<
0
