How are people with liver mets doing?
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Ok, I need advise and thoughts----
My scans (MRI abdomen) yesterday came back as small progression. My MO came in the exam room and said "Ok we have some changes". Then she proceeded to pull up the scans on the computer and said I still have the same 4 lesions in the liver, no new ones. But they all have increased in size.
From September to Dec to now---- Lesion 1 from 7mm to 1cm to now 1.2cm
Lesion 2 from 1.2cm to 1.3cm to now 1.6cm
Lesion 3 from 6mm to 7mm to 1.3cm
Lesion 4 from 6mm to 7mm to 9mm
I know we say that a mm or 2 can be how the rad reads and measures, but do you all think this is true progression?? She said "small, steady increases". And concerned about Lesion 3 going from 6mm to 1.3cm in 6 months.
She said my choices are 1. No change in treatment and rescan in 2 months to watch 2. Increase Ibrance from 75mg to 100mg and try that (but then said my blood counts would not let me do dose increase) 3. Change to another treatment. I then suggested checking for ESR mutation. And she said "good idea". So she drew a blood sample for Guardant 360. I messaged her today about the possibility of a tissue biopsy--- isn't tissue biopsy better than liquid biopsy?? How about HR, HER2 changes??? I also asked about local treatments--- Y90, ablations, etc. She said she will bring to liver tumor board for suggestions. She did say Y90 is hard on the blood counts and seemed hesitant about it. She even mentioned wondering if I would be a candidate for a liver resection since my 4 lesions are all in segment 3 and 4.
So what are your thoughts??? You guys are my go-to's. I would not have known to ask about ESR mutations and local therapies if not for this group.
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Candy...tissue is definitely better than liquid in my opinion and that of my MO too.
I heard that Ibrance dosage does not effect efficacy...so I don't know if I would increase that. I am sorry you are having to deal with this. On a good note..you'r tumors are small and I had 4 as well..how about Y90??
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Nicole- So if they drew the blood for liquid biopsy already and sent it off, then can I also do tissue?? Or double doing? She didn't even mention tissue biopsy. And, bam, they had the blood drawn before I knew it.
She seemed hesitant about Y90. Said hard on the blood numbers??--- WBC or others (RBC and platlets)?? Maybe she has not had much experience with patients with Y90.
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Candy,
I think from my own experience that tissue samples tell more than liquid biopsies. I've had both Tempus and Foundation One tissue biopsies, and a Foundation One liquid biopsy. Having said that, my consulting MO at Northwestern is a firm believer in Guardant liquid biopsies and uses them all of the time. So you may get some decent results back from that.
As for local liver treatments, I think that her taking the idea to the liver tumor board is great. That's how I ended up with my interventional radiologist. The liver tumor board said no resection for me, but he said he could do something. His original plan was to inject a couple of tumors at a time with a chemotherapeutic agent that should shrink them (sorry, I can't remember the name just now) but then I had already consulted another doc at Northwestern who looked at my slides and suggested microwave ablation -- I asked the IR at Hopkins if that would work, and he said he thought yes, and he was willing to try it. So the liver tumor board will be able to provide some guidance as to what to do here. I'd wait for that info to come back.
If they do go in for local liver treatment, they might be able to pull a tissue biopsy at that time -- and your Guardant should be back by then, too. So if you get not much from that, then I think your insurance would probably okay the tissue biopsy in any event. If doing the tissue biopsy, they are not always completely covered by insurance, so at that time you should go onto the website of whatever company she is using and fill out the financial form. That will save a lot of $$. For example, on Tempus, if you qualify, your costs are topped at $100. That will probably be cheaper than your co pay if your insurance pays for the tissue biopsy.
Bev
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candy you tell her you want tissue and contact and IR to get the sample from your liver tumors.
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Candy,
I think the fact that there are no new lesions is very good, and the slight growth gives you time to get specific advice and a plan. Having your case discussed by the tumor board is good too. I don’t know all the criteria for one local treatment vs. another but with the length of time you’ve remained stable, and only small changes now, I would think you’re a candidate for trying a local treatment, if you want to.
When I was being considered for microwave ablation, the IR mentioned the term “debulking” as a theory in treating liver mets. The thinking is that eliminating some or all of the lesions is better for liver health and our overall health. (I know there is also the thinking about systemic treatment only being the best way to go. For me, I felt confidence in the MO and IR’s recommendation and don’t regret “going for more” with the mw ablation.). It’ll be interesting to hear what the tumor board recommends for you.
Hugs to you. Always wishing you the best. 🌺
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Rosie
When I was discovered to have liver mets, they found one larger one (about 2 cm) in one segment of the liver and then 3-4 below centimeter others. I think this may be the same theory that you are talking about -- my consultant IR at Northwestern said that he thought it best to do the larger one via microwave ablation, and leave the others alone to see what happens with them. Also some IRs believe that that may cause the smaller ones to either go away or just not do anything. My smaller ones shrank slightly, but they are still there. But from May 2019 until the present, they've done nothing but sit there, so I guess that theory has some merit. The jury is still out.
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Update- I messaged my MO nurse with question of getting a tissue biopsy. She said a tumor has to be over 1cm to biopsy and mine just barely over that, so probably too small to biopsy. And that usually they biopsy if SOME tumors grow while others don't. That is not my case.
I am seeing that usually when I message them (thru patient portal) that the nurse fields the questions. I don't think she usually takes the questions to the doctor. That is what I am feeling. But I guess there is proof thru the portal that I did ask them the questions. If the doc is not notified is their problem. But I guess I cannot have the doctors ear all the time. She has lots of patients.
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candy, I'm sorry to hear of the progression. I hope your treatment team comes up with a plan you feel confident about. I think one thing that is good is that it seems your liver mets aren't causing you symptoms right now & that means that there's some time to decide on the best course of action.
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Candy-
I'm sorry about the slight increase in size of each tumor over time as mild progression, even if you don't have new tumors.
I think you would be considered oligometastatic disease because your bone mets are dormant and the new push for oligometastatic is to hit them with local treatments with proven OSR and PFS
Glad you are getting presented to the liver tumor board, but If I were you I would ask for a consult with an IR, RO and SO regardless. It is your body and you should have choices to consider.
if your MO suggested surgery then I would get an appointment with the surgical oncologist ASAP. Surgery is the gold standard. The liver (not bile ducts) regenerates. At this point you know the meds you are on kept the cancer from growing very fast(partial control). That was the hurdle I had to jump at the beginning of my metastatic journey. I could not get systemic to work so no surgery for me.
If you can find an RO that is experienced with SBRT to the liver- your 4 small size lesions could qualify. SBRT has a limit to the fractions they can shoot. The advantage is no cutting, disadvantage is long term radiation SE down the road. I had it to my lung and it was not difficult at all - lung met is dead.
IR procedures seem like a good choice. I would push for a consult. My Y-90 did not affect my blood levels for the worse. I had it done between doxil treatments. Y-90 treatment killed 3 tumors, lowered the tumor burden and bought me more time to look for a med that would work
I know you are spinning from the recent report. MOURN, BREATHE and MOVE ahead. 🦋 Prayers for peace and to make an informed decision on your next treatment that works wonders!
Dee
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Candy,
Dee has an excellent idea about the SBRT, if you are fearful of doing surgery.It's still going to require some juggling of your life in order to get through the process, but it might be easier for you. Also, a lot of hospitals/cancer centers have housing available at a reduced price for those undergoing procedures that don't require hospitalization.
Here are two links about SBRT to the liver, used in both original liver cancer and metastases. One describes the department at Wash U; the other is from Michigan and describes the process more.
https://radiationoncology.uw.edu/spotlight/stereot...
https://www.rogelcancercenter.org/liver-cancer/ste...
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Saulius - hoping for good news on the biopsy. Ugg, for having to wait until Monday.
Nicole - Ayla is a-dor-a-ble!
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moth- No symptoms and liver enzymes on blood work all stable and normal range.
AlabamaDee- I am hesitant for surgery--- she mentioned liver resection since all 4 mets are in segments 3 & 4 of the liver. I live alone and wouldn't liver resection be a big surgery with lots of recoup? But also makes sense as the liver regenerates and cutting them out would get rid of them. But.... with mets, couldn't there be cancer cells elsewhere, just not grown yet? So you cut it out, or zap it, or radiate it and then later the left over cells group together and grow to a new lesion???? Micro metastasis, isn't it called.
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Okay, that was weird. I don't know how I missed Candy's post. Maybe I got to the bottom of the last page and though that was it?
Candy - Newbie that I am, I don't have a single word of advice for you, but I'm sending cyberhugs and prayers your way. As usual, you've gotten lots of advice from those with more experience.
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Candy, after 11 months on Xeloda with 2 of my measurable liver mets shrinking, one of them decided to grow (2 cm) and had SUV uptake on PETCT. No uptake anywhere else.
I had SBRT to the active met and will continue on Xeloda for now. SBRT was chosen because of size of lesion and not in an accesible location.
Edited to add that MBC or stage IV, you will always have micromets..just want them to be quiet and not growing.
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Candy, so sorry to hear about the progression. I can't offer any advice beyond that which more experienced folks have provided. I know it's tough. My first scan post-liver mets is next Monday.. holding my breath to see if chemo is working.
Nicole, OMG that puppy is so cute. And I am sure that you will find much joy and laughter in her antics. She will be a handful I'm sure but there is nothing better than a puppy to take your mind off our other things.
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See Q thank you so much That really means a lot
Candy...I should mention any time I wanted something done on my liver I went on my own and sought out the IR or RO...I didn't ask my MO to do it. The only time I asked my MO was when I wanted her to "off the record" recommend someone outside of my cancer center that I could consult with and she did.
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SandiBeach, BLMike, and Nicole, thanks for all your advice
It turns out my liver tumor has enlarged after the radiologist compared old and new scans thoroughly. The enlarged part is on thickness (from 4cm to 7cm). I actually felt the tumor swelling more in the past few days. That means Eribulin has failed (only tried 1 cycle). Within 7 months, 4 lines of treatment have failed.
Just met with MO today. She said the tumor is growing very fast and soon it will impact my liver function. She will change it to Gemzar+Carbo now. That sounds very scary - sigh.
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Sac you sound like me with failing treatments
. ... I am so sorry to hear of your liver tumor .... I got 3 months out of Eribulin and then we "think" month 4 it was failing...Are you Low Her2?? I see you are ER and PR+ if you are then you can try Enhertu?? Working GREAT for JFL.... Are you also considering contacting an IR for Y90 or Microwave Ablation or TACE? If they blast that tumor it can buy you a lot of time especially if that is the only tumor???0 -
Nicole, yes, I am low Her2. My liver tumor is pretty big, width is about 9cm which is pretty much the same size of a normal liver.
I had a consult with IR last Sept (at the time, the tumore size was smaller than now), and mapping result showed Y90 would do more harm than good. Then I switched to Xeloda and it had saved me for 4 months.
Recently I asked again my MO given my progressing. She said we have to find a chemo to control the growing situation first. I understand that because IR wants patients to stop chemo for a few weeks before Y90. I asked if there is anything IR can do simultaneously. Will meet with MO next week and will ask about Ehertu.
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Since you are low HER2 it makes ZERO sense to me why your MO would not put you on Enhertu immediately I mean look what it did for JFL it was a like a comback miracle!.... Yes if you get Y90 you have to come off treatment but if that is the ONLY tumor that is (for lack of a better term) Life Threating it could 100% kill it...you only have to be off for 10 days prior and 7-10 days after. If you are not thin and it is NOT near the colon wall then I am sure you wont have the issues I had and had to be off treatment for 3 months...however, it did KILL my tumors in the liver....
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So another question--- my MO nurse said we cannot biopsy liver tumors unless larger than 1cm, too small otherwise. But we can do Y90 or ablations or radiation? Wouldn't the tumor be too small to inject with drugs, or zap? Just asking. I have been reading on here and taking notes. And formulating a list of questions for my next MO meeting. Just learning and thinking. Thanks to all your thoughts, suggestions, posts, links, etc. You guys are great. I have learned so much and continue to learn.
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Candy,
I've never heard that. You need to talk to an IR for local treatments, and an RO for the SBRT and ask them.
I had a lesion ablated that was 1.1-1.2 cm. This is what my interventional radiologist said: " if I can see it, I can biopsy it. The question is whether I can see it." So what an IR can do, if they are willing, is to set up both a CT and a sonogram for a biopsy -- they can do biopsies with either or both. I believe (tho am not positive) that the CT is more likely to see the lesion and, if so, they will go with that.
Hopefully Nicole will weigh in here, because I believe with her y90, her IR injected some dye into her lesions about a week prior so she knew she could spot them when she went in for the Y90. That also would give increased visibility.
As for TACE, when I originally discussed that with my IR, he was going to do all of my lesions, but over several sessions. And I think the one batch that he left were all under 1cm.
You should also know that IRs are pretty willing to do biopsies combined with one of the local liver treatments, so that's another thing to ask about. Otherwise, you will have to go through two procedures if you're going to do local liver treatment -- which in my mind is a waste.
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BevJen- I had a liver biopsy at diagnosis. But the liver met was 8 centimeters. So they had plenty of room to grab a piece and definitely large enough to see. I will ask again about the size. I messaged my MO nurse today and that is what she said--- over 1cm to biopsy otherwise too small to biopsy. So if too small to get a piece then too small to treat locally??? But she is not the expert.
So I was wanting a tissue biopsy to check HR & HER2 status and see if changed--- for decision making of treatment. If I would decide on local therapies, then why the need for a biopsy??? We would have treated it with Y90 or radiation or etc. I do not understand.
And the Guardant test does not check HR or HER2, right?
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candy- Yes micro metastasis is always a consideration which is why the want a successful systemic med that can suppress those even after local therapy.
the liver surgery is tough from what I read, with a longish recovery. I would still talk to a SO to see what he thinks. Living alone is definitely a consideration.
Personally I really look at SBRT it could take 2+ weeks to treat them all. My single lung met was 4 rounds(M,T,TH,F) just had some fatigue
y-90 depends on the blood vessels connecting to the tumor area- that’s why they have a practice run. I don’t see why small mets would be an issue- the wire is very tiny, but I’m not sure.
I would think the IR is the person to determine if your tumors are too small to biopsy. You could ask when you get a consult for local treatment
Nicole- cute puppy. They can really bring a lot of joy.
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Nicole!! Sweet puppy. A puppy and puppy training will be an amazingly wonderful distraction for you. It’s also wonderful how unconditional their love is. Your heart needs this, so congratulations. My 2 pupils have been constant companions through this. They keep me walking, focused, laughing, and loving. A prayer answered.
Counseling - I cried through my counseling sessions for almost 1.5 years!! I still cry but I can actually talk through things a lot more, fewer tears, better perspectives, etc. it takes time. You need to release so much of what you have been holding onto. Think of them as tears of liberation. You do what you need to do.
Always my prayers for you
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candy-678
I am really sorry to hear of the progression. I know how scary it is. You have gotten a boatload of great information from experienced people here so I can’t add much. But yes! Tumor Board is great and you do need to get consults with the best IR amd RO you can to understand options amd the logic behind those options. You’ll want to align your next systemic therapy around the local treatment, so those options need to be weighed out. Tumor board can help there too. Your progression is not so fast so there is some time to figure this out. It’s a lot, but breathe!!! Get your questions together and get the best explanations you can.
I think nurses do amazing work, but they are not docs and really shouldn’t be fielding questions for the doctors. Maybe they are providing the doctors response???? I left an MO because I couldn’t get passed the nurses and get through to her. You have every right to talk with your doctor. If she is too busy, I would address this with her as a concern
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Sandi- how did the SBRT go????
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saulius-
Good to hear procedure went well.Prayers for you and your wife on the results of the biopsy. Good to see you have a surgeon lined up if needed.
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candy-
here is my 2cents worththe tumor has to be big enough to get a sample for biopsy🍾when I had my lone liver tumor I went through all of my options. I could have done microwave ablation mint would not have gotten a biopsy. I was told that it was because the placement of the needle for the ablation took president over the biopsy. Due to the size of the tumor, the placement of the ablation needle would most likely not leave any tumor for them to get a good biopsy. Of course this was 8 years ago. This is what prompted me to have a liver resection. That way I knew I would get a biopsy and therefor I would know the specifics about this line tumor. Do I had a partial resection of my right liver lobe. In all about 10% of my liver was removed. I didn’t about 3 days in the hospital including the day of surgery and then went home. I had help for the 2st 24 hours hone but then was on my own snd able to take care of my family by myself. I was sore but I really did not have a hard time with the surgery. The biggest part was injecting the blood thinner each day. But even that wasn’t so bad. I am very happy I did the liver resection snd it kept me NED for about 3 years in my liver.I hope that made sense. min the end you need to go with what you are comfortable with.
Aldo- my case was reviewed by a tumor board and I did take into consideration what they told me.
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