How are people with liver mets doing?
Comments
-
Shetland, Fantastic report! You give us all hope.
0 -
SP - BEST NEWS EVER! May this continue.......forever.
0 -
Wow, SP, so happy for you!!! Yippeee!
0 -
Shetland. Fabulous news!!!! Congratulations.
0 -
Chiming in for Shetland - woohoo 💃
0 -
Procedure didn't work. Gonna try the permanent one (with Alcohol) next week.
I am very depressed right now and not mentally in a good way. So if you don't see me posting for a while thats why.
Love to you all.
0 -
Hi everyone. I just got pet scan results that show two spots on my liver. No other mets seen on pet scan. The MO told me I will get a call from radiology soon to schedule a liver biopsy. I was too stunned to ask any questions.
What happens now? Is a liver biopsy always the next step? Should I demanding an MRI, either instead or in addition? The tumor in my armpit is strongly ER/PR+ but HER-. I had cytoxan/taxotere chemo seven years ago when I had my initial diagnosis. I've been on tamoxifen since then but fat lot of good it did me. What is the first treatment most doctors go to? Is chemo the first thing? I'd really like to not have to tell everyone I know about this diagnosis but if I have to take chemo it won't be a secret for very long.
Sorry for all the questions. The main one is just WHAT HAPPENS NOW?
0 -
Hi, Nola,
Sorry for your diagnosis, but this is a good place to ask questions and to read about others' experiences in the club no one wants to join.
So far as I know, a biopsy is usually the first step when they find mets, especially with the liver. You don't need another imaging test at this point -- it sounds like they saw the mets on the PET, and so they have a pretty good idea of what's in there. They will do the biopsy using some sort of imaging, anyway -- possibly a combo of CT/sonogram. That's how they see the lesions to biopsy them. They will biopsy to confirm that it's BC, and also to determine your current hormonal and HER2 status.
One of the things you might want to ask your doc is if he/she thinks it's a good idea to have a genomic test along with your biopsy. Some of the common types of that test are Foundation One, Caris, etc. This has to be set up BEFORE the biopsy, because whichever company you are going to use will have a specific protocol for how your tissue should be transmitted to them. Also different doctors prefer one over the other. That testing will provide further info about your mets, such as whether you have certain actionable mutations that would make you more likely to start with a specific drug or set of drugs.
Just so you know -- it's not likely that you will start out with chemo. These days, most docs seem to start with an anti-estrogen agent (like letrozole, exemestane, etc.) and a CDK 4/6 inhibitor -- there are three of these: Ibrance, Kisqali, and Verzenio. You don't show that you've been on any anti- estrogen medication since your first round. So your doc might just start with one of those.
Finally, you need to read as much as you can about everything your doctor mentions, so you can be your own best advocate. And if you don't like what your doc is saying, or if you think you want more information, it is VERY common to get second opinions on all of this. If you are not at a large cancer center and you can get to one relatively easily, that's where to seek out that second opinion and perhaps even treatment.
Good luck. I'm sure others will respond as well. Things will look better once you have a plan in place to attack this.
0 -
Nicole, big hugs. I'm thinking of you and really hoping you getting this pain controlled. You've been through so much. This really sucks.
Nola, a biopsy is pretty standard and a good idea to make sure the tumors are actually breast cancer and the markers the same. Strong ER+ usually start with hormone therapy and keep chemo regimens for later, esp if the mets are small. You might be interested in Bestbird's book where she goes over all the mbc treatments https://community.breastcancer.org/forum/8/topics/...
Best wishes
0 -
Thank you. Thank you. Just knowing that I probably won't start chemo this month is a relief.
I've been on tamoxifen since 2014. I only have periods about every 18 months, so I've asked several times if I should switch to an AI instead, but my blood work kept coming back as perimenopausal so they told me to stay on tamoxifen. I've also had very little side effects from it so they didn't want to upset that equilibrium. Now I think I didn't get side effects because tamoxifen didn't work for me, and I wonder if they ever tested me to see if I metabolize it. I also have taken a low dose of wellbutrin, which I know lowers efficacy of tamoxifen, but I had to make that call because I was so depressed I couldn't get out of bed. The told me my recurrence risk was low.
I wonder if I should just get rid of my uterus and ovaries. Every time I have a period, because it happens so rarely, I wind up calling my gyn and he has me get a D&C and it's a whole big thing that has to be under general anesthesia and costs a big copay. I've tried to avoid procedures but what good are these ovaries doing me right now?
I've also got this 5mm lump in my armpit that I wish they would take out. I don't see why they should leave it there if I don't have so many mets that there's no way to get them all surgically.
I'm at Ochsner, which is a big regional hospital here. I've also started the intake process for a second opinion at MD Anderson. They are supposed to call me to set an appt as soon as my insurance is cleared. I'd really like to get them to do the initial consult by televisit so I don't have to go to Houston just to talk to them. If they want tests or treatment that can't be done here in New Orleans that's fine, but I can't even get a covid vaccine yet, so why expose me to unnecessary travel? Ochsner and MD Anderson are in the same system so they can see my test results from here.
0 -
yay Shetland.
Nicole- in my thoughts and lots of love.
0 -
Nola,
Take a look at the book that Moth indicated. It has a wealth of info in it.
I know there are other women on breast cancer.org who are treated at Ochsner, and of course, MDA is the motherlode. I'm sure they will be able to do a Telehealth, but perhaps not? I've done telehealth second opinions with the same deal -- MyChart info can be seen at both places. So that part sounds good.
I was originally diagnosed in 2003, and had my first recurrence in 2006. I was on tamoxifen in the interim, so I guess it didn't work for me, either. My first line of treatment (for 13 years) was letrozole alone, but, of course, the CDK 4/6 inhibitors hadn't even been developed by that time.
The other thing you will want to think about, when you find out the size of your lesions, is whether or not local treatment might be appropriate. They will still likely put you on systemic treatment as explained above, but some of us have had local liver treatments such as ablation, Y90, and other things that could prove to be helpful to you. These procedures are done by interventional radiologists and are generally same day procedures. Not all oncologists are used to these, so you should read up on that. There is another thread about this at https://community.breastcancer.org/forum/8/topics/...
that's the current page, so you'll have to scroll back a bit to get the lay of the land.
good luck.
0 -
hey Nola
I’m actually glad they scheduled you for a liver biopsy without you needing to ask. I had a recurrence in December and I had to insist on a biopsy . I hated the idea of going in blind and getting chemo after chemo when there’s targeted treatments. I started strongly ER Positive and still remained that way. But my Pr status kept changing.
I’m 33 and had my ovaries out at 31, got started on letrozole and in a year I had the recurrence. . bc I have multiple Mets to the liver and two at 4 and 3.5 cm, they Re-inserted my port and started me on IV chemo again. I was hoping for the oral chemos but I imagine that they wanted to tamper down the aggressiveness since mine appeared within 4 months , and then I imagine those options will be there for me later.
I am concerned that my AI didn’t work cause now I wonder if they will give me the oral chemos with or without them.My ND suggested because I have very low body fat , that and AI was likely not going to work and that I should be back on Tamoxifen ASAP. But I’m not sure if my oncologist is going to go for it while I’m on Iv chemo.
Anyway , I went on a tangent there. I think the biopsy is the best bet be more imaging and I think that because your Mets are few and small, that you might do endocrine therapy first which is nice.
0 -
ShetlandPony
💃🏻💃🏻💃🏻💃🏻Happy Dance
😭😭😭😭tears of Joy
🎉🎉🎉🎉party time
Dee
0 -
Shetland, that's just awesome news. Congratulations!
Nicole, my heart aches for you that the procedure didn't work. You really deserve a break from all this. Hugs.
Nola, you've already gotten some great advice from BevJen and others. There's not much I can add except to say welcome and I'm rooting for you. Also, I found the liver biopsy I had was very easy and not at all as bad as I expected. Hugs.
0 -
Ok ...so.... the procedure may have worked... a little, i think???
The IR told me yesterday that this is not meant and doesn't usually take ALL pain away, it usually reduces pain so you can be functionable and tolerable. There are bouts now since last night where I have a NO pain...and then I have it again but it's not as bad as it was??? But I did just put a new Fentenyl patch on yesterday evening as well.....so I am not sure.
I also remembered it was a Steroid and Local anesthetic that she used but if we do the permanent one its Alcohol they use....
0 -
Nola-I go to MDACC as a second opinion. You are welcome to PM me for questions.
The metastatic standard of care now for first line systemic treatment is to start on a cdk 4/6 plus an AI or Faslodex. Also, it is recommended to get a genomic testing with your biopsy to determine mutations that can be targeted.(Call the companies to get the best price as most are out of network but have financial help and cheaper self-pay options). There are studies that say overall survival is improved if you qualify for surgery and remove the tumors. You can request an oncology surgeon consult at MDACC. I saw Dr Jean Vauthey. Other local options are available through radiology(SBRT) and interventional radiology (ablation, y-90). MDACC offers all of these but I imagine so does Oscher. I hope you get the help you need to move forward in treatment with confidence. Cancer sucks but the people here are great for info and support.NicoleRod- I hear a spark of hope.I pray it is working!!!!! Sometimes steroids can take a couple days to kick into effect. I’ve had to get steroid shots in my bad back over the years that have helped me avoid a spinal fusion.
Dee
0 -
Hi All,
Dee mentioned above studies indicating improved OS with surgery but are any of you aware of recent literature supporting increased survival with the use of interventional treatments with MBC liver mets? I have found a couple that talk about the options but don't really indicate improved outcomes. I'm trying to build a case to present to my MO for a referral as, with two discrete lesions, I feel that I should seriously consider it.
Thanks! Pat
0 -
sadiesservant
Google this and you should find a link to free article
Long-Term Results from SABR-COMET Further Demonstrate Effectiveness of Stereotactic Ablative Radiotherapy for Comprehensive Treatment of Metastatic Cancers
Dee
0 -
AlabamaDee that was super helpful information. Thank you so much.
Nicole, I've been meaning to apologize for jumping in right after you posted yesterday and distracting the thread. I wasn't thinking straight and that was inconsiderate of me. I'm so sorry you've been in so much pain. I hope you are right that the treatment has helped, even if it hasn't solved the problem completely.
0 -
Fabulous. Thanks Dee. One question though... have any of you who have had ablation had push back if you are not oligometastatic? I have extensive bone mets and originally presented with right plueral mets. However, I still believe/hope there will be a survival benefit if liver mets are treated locally.
Nicole, glad to hear that things may be improving. Here's to a steady decrease in pain!
0 -
Sadiesservant,
I've had three liver ablations so far. Two were to get rid of lesions, the third was to truly get rid of one of them (the doc missed a bit). For my initial one in 2019, I got a little bit of pushback. But I was pretty insistent, which then led my MO to go to the liver tumor board. The members of that board all said no go, except the interventional radiologist. So I met with him, and he initially wanted to do another procedure but I persisted about ablation and that's where we went.
On the other two, my MO just shrugged her shoulders. It was the initial request that was met with a little bit of pushback.
0 -
sadiesservant, I was going to post the same SABR COMET study because for a change it's Canadian & I think it carries more weight with our teams then, kwim? One of the PIs is at my center even...
They wanted me in their STOP trial for oligoprogressions. It doesn't require you to be oligometastatic...just have oligoprogression, which you would qualify for, I think? " have a maximum of 3 progressing metastases in any single organ system, and the total number of progressing metastases must be 5 or less"
OH & if you really hit a brick wall and want to pursue it, there's a private clinic in Vancouver offering a variety of IR treatments for liver mets. I'm sure expensive but cheaper than hauling out to the US for it.
0 -
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC70311...
Here is an amazing summary article on Y-90 efficacy. If I read it right, it is both good and bad news due to 11.2 mo mean overall survival rate but that Y-90 does help control tumor growth.I know it is controlling my tumors and I have passed the mean OSR so I am looking for more studies that are more current
Dee0 -
Great. Thanks All.
Moth, I do agree that Canadian studies make it much easier for us to push the envelope a bit and great to know that one of the PIs is at the Agency. That should help. I'll have to look into the STOP trial. It is an interesting situation with me as I do think I should qualify. My bone mets keep being reported as stable as do my lung mets. Just those two darn mets in my liver that popped up!
Really appreciate the support. I fired off an email to my MO. Let's see what comes back...
Cheers. Pat
0 -
I started Xeloda April 2020 for progression of widespread liver mets. As of Feb 2021 or 11 months of treatment, I only have one remaining active liver met that seems to be resistant to treatment. Due to its position, a biopsy could not be obtained. (A blood bx would not provide info that my MO needed.)
I will have SBRT ablation to that lesion. Microwave ablatiion was not considered due to the location of lesion. I can stay on Xeloda throughout radiation.
0 -
Great news Sandi - hope the ablation does the trick and is not too onerous on you.
0 -
Fingers crossed and prayers coming you way Sandi! When are you having the SBRT?
0 -
Sandi,
Wow, that is great news. Now, do you have to do multiple sessions of SBRT? Or how does that work with a liver lesion? Just curious because my last 2 ablations did such a number on my body, so next time I may be looking for an alternative. Good luck.
0 -
Great news Sandi. I love to hear that Xeloda worked (just starting second cycle). Interesting that they will use SBRT. When my MO told me about the progression to my liver he said unfortunately they can’t radiate the liver. At the time I thought to my self, well that’s not entirely true, thinking about Y90 but apparently they zap them too. Good to know....
0
