Liver mets: resection, ablation, SBRT, Y-90, anything else?

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  • Grannax2
    Grannax2 Member Posts: 2,387

    Nicole I'm very happy about your consult with your IR. Sounds like have a plan to get the y90. My IR didn't call today about my BX. I'm going to call tomorrow. I'm wondering if he might consider doing my BX and the y90 mapping at the same time. 💞

  • Grannax2
    Grannax2 Member Posts: 2,387

    Nicole, it sounds like you may get to stay on schedule with Halaven TX during y90. Or do you need to confirm with your MO first?

    I was thinking I'd have to wait to start H till after y90s. Of course, I haven't talked to my IR yet. Are you having both lobes or just one done? I hope to talk to talk to him this afternoon. 💞

  • moth
    moth Member Posts: 3,293

    has anyone had to pay out of pocket for any of these treatments & can give me a sense of how much it costs if you pay cash? I know it would depend on what & how many mets etc but honestly I don't even know whether we're talking 10s of thousands or hundreds? or high hundreds? I could consider treatment in Seattle but I want to know how much $ I'd have to pull together to even think about it.


  • BevJen
    BevJen Member Posts: 2,341

    Moth,

    Sorry not to be of help here, but although I complain bitterly about American healthcare, all of mine has been covered by insurance.

    I doubt that it would depend upon number of mets -- I don't think they would categorize it that way. In the US, I think it's billed by procedure code.

  • nicolerod
    nicolerod Member Posts: 2,877

    Gran...sorry I don;'t know about lobes..lol. she is going to get all 3 tumors same day. Have to stop chemo for 10 days the IR said.

  • theresa45
    theresa45 Member Posts: 238

    Moth - I believe the self-pay cost for these procedures varies a lot by the cancer center. Some cancer centers give self-pay patients a discounted rate that is actually less than the insurance-negotiated price for the procedure. At least one cancer center (mine), charges patients the full face value for the procedure which is much higher than what insurance would end up paying. I was shocked when my cancer center quoted me a patient-pay price > $250,000 for a liver microwave ablation. Thankfully, my IR was able to appeal and overturn the insurance denial. I hope that most cancer centers have more patient-friendly policies. I self-paid for a liver MRI at Johns Hopkins in 2019 which cost about $600 which I believe is significantly less than what insurance would have paid.

  • [Deleted User]
    [Deleted User] Member Posts: 760

    Nicole- I just meant because if your success on halevan you have a plan forward that goes into the future more than the 3 months of let’s try this or that. I’m so happy for you!

    Dee

  • s3k5
    s3k5 Member Posts: 411

    Moth, I think the University hospitals charges less than private cancer centers. I had a RFA for my bone mets done by a University pain specialist and also by a private doctor at a cancer center. The overall amount billed to the insurance was very different for the same procedure.

    You can actually call up the place and ask them about the cost for a procedure. You will get a pretty good estimate and then you can decide if it is worth it for you.

  • moth
    moth Member Posts: 3,293

    Thanks everyone. I have an appt with an RO here through the provincial cancer agency on Nov 10. The study I'm looking at, the principal investigator is one of the co-authors of the SABR-COMET study that came out earlier this year. (I'm not meeting with him but someone on his research team). I'll see what they say & what they think they can do.

    As I understand it, right now here they don't do SBRT on progressing lesions (or really any metastatic lesions?) I think localized treatment is really just starting to be looked at here. They can do palliative radiation for relief of pain or symptoms but that's a different technique and dosage.

    I can't really call around to the US yet because I don't even know what I want or should be getting done but I will keep it in mind for down the road if I'm not happy with what they can do for me here.

  • nicolerod
    nicolerod Member Posts: 2,877

    Dee...yes totally agree with you...I really would like something to last more than 3 months. I posted on FB if anyone failed Ibrance and Let...and went to either Verzenio or Afinitor with any success..and they have...more had success that went to Afinitor .... Dee how did you fair on Ibrance...Verzenio and Afinitor how long did each last for you? What can you say about Verzenio and Afinitor as far as side effects? Also yes I am happy my IR will Whack a mole..lol

  • Grannax2
    Grannax2 Member Posts: 2,387

    Nicole. The liver is divided, ( sort of)into two parts, the right lobe is bigger than the left lobe. My mets have been in both lobes so my IR treated both sides each time he did the y90s. Usually this requires three procedures, mapping, one lobe then the other lobe one month later. 💞

  • nicolerod
    nicolerod Member Posts: 2,877

    Gran...so mine are definitely all in the same lobe because all 3 are right next to each other (pretty much)

  • Grannax2
    Grannax2 Member Posts: 2,387

    That's good. 💞

  • Grannax2
    Grannax2 Member Posts: 2,387

    Has anyone had chemoembolization? My IR says he just wants to do the, BX this week ( not the mapping) and we'll talk about options then. I think chemoembolization might bee one option he wants to discuss. 💞

  • BevJen
    BevJen Member Posts: 2,341

    Grannax,

    I think maybe AlabamaDee has this done -- you might check with her if she doesn't see this.

    This was the backup for me for my most recent liver microwave ablation. If the IR couldn't see my tumor on ultra (he could) he was going to do this, so he explained it to me. They basically run a line up your groin and send dye up to the tumor(s) and inject them with a chemo agent and usually something else -- my IR uses pomegranate juice or something like that, bc it supposedly helps the chemo to penetrate.

    Oncolink has a description of it, if you want to google.

    Good luck with this.

    Bev

  • [Deleted User]
    [Deleted User] Member Posts: 760

    Nicole- I had verzenio and Faslodex for 3 months as my 1st line with Progression so changed to Xeloda for 3 months scans showed progression. Tried doxil for 2 infusions much more progression, had y-90 & bland embolization in the middle of infusions. Changed to Afinitor/Faslodex/sandostatin for 6 months. Small progression at 3 months so stayed on it for 3 more months then scans showed more progression after the 6 months. SBRT to a lung lesion in the middle. Now I’m on the trial CDK 2/4/6 Been on it 1 month. Scans in 4 weeks.

    Verzenio was no problem for me, Afinitor was also ok. Not much side effects no dosage reductions. Wish either one had worked longer. I had good quality of life on those 2 but I hated the Faslodex shots that went with them.

    Grannax/Bev Gen -I had bland embolization where the IR just blocked the blood supply to the tumor in my left lobe. He was concerned that he could not get Y-90 to stay in that area enough and that it would damage other areas due to the vascularity. Had Y-90 to the 2 right lobe tumors at the same time. All 3 tumors continued to shrink and did not have any uptake in last pet scan. I just have a whole bunch of little ones now in both lobes 🥺

    Sorry I don’t know about chemo embolization.

    Dee


  • s3k5
    s3k5 Member Posts: 411

    Dee, you have gone through so much in such a short period of time. Hope that this trial works for you and keeps the tumors from progressing. Shrinkage would be awesome. We never know which treatment would work for us.

    Based on Nicole's experience, everything is a trial and error. I have gone through about 12 lines of treatment - chemo and hormonal.

    Now with the change in tumor receptors, I am hopeful that immunotherapy would work. Local treatment for liver should have helped too.

  • nicolerod
    nicolerod Member Posts: 2,877

    Grann my IR at Hopkins wanted to do TACE...I wanted Y90....from what I heard they are pretty much the same or at least that is what the IR at Hopkins said...I think its more of what they prefer.

  • [Deleted User]
    [Deleted User] Member Posts: 760

    S3K5- I’m hoping for you too. My sister has had 5 years on opdivo with lung cancer, total of 9 years since diagnosis. Immunotherapy is amazing. She has not had any of the severe SE but lots of minor ones. I’m so hopeful that immunotherapy will work for breast!

    Dee


  • nicolerod
    nicolerod Member Posts: 2,877

    So I just got the email from my MO they want me to complete cycle 6 of Halaven before I do the Y90...UGHHHH that means I have chemo 11/6 and 11/9 ...then 11/23 (week of Thanksgiving) the mapping and procedure 11/30..... I need to find out if the mapping will make me "out of commission" for thanksgiving.... Can anyone chime in??? Grannax???

  • [Deleted User]
    [Deleted User] Member Posts: 760

    Nicolerod

    Sounds like your MO wants to get the most out of halaven since you responded so well.

    Everyone is different, but the mapping should not affect your Thanksgiving esp. if it’s done on Monday

    My mapping was not too difficult. Coming off pain med day of, then ok by the next day. A little sore in the groin where they accessed the artery and left in a plug. I flew home next day. Some IR use the arm instead of the groin

    It took 3 weeks to get the beads in before I had the final procedure. It made me quite fatigued for a week. Probably as much the bland embolization as the Y-90.

    Dee

  • nicolerod
    nicolerod Member Posts: 2,877

    Thank you Dee I am confused though...you said the actual Y90 they had to do over 3 weeks? so 3 Times? Why?

  • [Deleted User]
    [Deleted User] Member Posts: 760

    Nicolerod

    Actual y-90 is scheduled 2-3 weeks later Than the mapping because they have to order the Radiation beads once you pass the mapping. So 2 appointments total

    FYI - They use dye and inert beads in the mapping to see vascularity and if they can block off any vessels to help the beads stay near the tumors.

    Dee

  • nicolerod
    nicolerod Member Posts: 2,877

    Dee...no I knew its 2 appointments but you said 3 weeks I thought you meant you went back each week not that you waited 3 weeks from the 1st appt. :)l. BTW my MO said I only need to wait about 1 week...not 3?

  • [Deleted User]
    [Deleted User] Member Posts: 760

    Nicolerod

    My Y90 procedure took 2-3 weeks later because of IR scheduling and getting the beads in. Glad you can get it sooner. Hoping all goes well. It will be here before you know it.

    Dee

  • Grannax2
    Grannax2 Member Posts: 2,387

    i think the mapping is much easier than the y90s. I think I waited about one week to do the y90. It sounds like you will only have two procedures since they are only doing one lobe.

    My IR is suggesting Microwave Ablation for me. After he explained, I agree. He's hoping I can do Halaven simultaneously.

    He is also saying he will use Lipiodol as a stain on the four lesions he wants to ablate I think this is a pre procedure He only wants to do two at a time. So, two different microwave ablation.

    I think it's going to be complicated to do the ablation and the Halaven schedule at the same time. He is calling my MO to talk about it.

    My BX didn't hurt at all. Glad to get that done and ready to find out what the next first is.💞

  • BevJen
    BevJen Member Posts: 2,341

    Grannax,

    At least you now have a plan. That's great.

    Really interesting about the lipiodol aka poppyseed oil. I had to look that one up. My IR was going to use that if he did chemoembolization/TACE to hold chemo in the lesion. What's the purpose in the ablation? Perhaps so he can see the lesions he's heading for?

    Having had two microwave ablations so far, I would say that that seems to be a good solution for your lesions. I completely understand him doing two at a time -- so as to not stress the liver, I'll bet. Both times now, I had a pretty rough time for the first week after (meaning low energy, low appetite, some pain) and the second week, I was just tired. I'm now in my third week after the ablation, and doing pretty well. Appetite is back, no pain at all, BM back to normal, energy almost all back to starting point. You are a tough cookie, so you will do just fine, I'm sure. I did not have to stay overnight (was released within a couple of hours) but doing two at a time, your IR might want you to stay overnight just to observe.

    Good luck with all of this. It sounds like a good plan. No idea about the halavan and figuring out that schedule with this, but I'm sure your IR and MO will be able to work it out.

    Bev

  • Bliss58
    Bliss58 Member Posts: 938

    Grannax, sounds like you have a good plan in place.

    BevJen, glad to hear you're feeling better in the 3rd week after ablation.

    Congrats to those with good news and virtual hugs for those struggling.

  • Grannax2
    Grannax2 Member Posts: 2,387

    Thanks Bev Jen. I was really wanting to pick your brain because I knew you had had one. Did your IR go in with a needle to microwave your lesion?

    He did not use laparoscopy did he? I need to ask him more questions. I was groggy when he was explaining what he wanted to do.

    Evidently, Dr VM does things a little differently than other IR s. The Lipiodol lights up the tumors he wants to get so that he can get all of it. The ones he's targeting are my biggest ones at 3 cm each. How big was yours?

    I'm glad you told me how you felt. He makes it sound so easy. I told him I thought it sounded terrible. Like microwaving food. Yuck. But he said it's not. Yes, I'm sure he'll let me spend the night if I need to.

    At this point, I'm just glad there's something/ anything he can do. Yes, I'm nervous about doing chemo and MW. How on earth am I going to arrange to do all that? Add not feeling too great on top of all that. Maybe my MO will let me do MW first before I start chemo. 💞

  • BevJen
    BevJen Member Posts: 2,341

    Grannax,

    First, as to the chemo -- I wasn't on chemo when I did the first one, but my MO held off on starting Ibrance for at least 3 weeks after the ablation to allow for some healing. This time, she told me to hold the Ibrance for 2-3 days after -- I held it more like 4 days before restarting. Just to give you some perspective.

    My first ablation was of a 2.3 cm tumor; the most recent was 1.2 or 1.3 cm. So smaller than yours. But I don't think that's that important.

    As to the process: my IR uses twilight sedation -- like with a colonscopy (I think it's a combo of fentanyl and versed from one of the reports.) All I know is that I was pretty much out of it through the whole thing, although I could hear some parts of their conversation (there was a fellow, a surgical nurse, and my IR in the room) and could also respond on this most recent one when they needed me to breathe so they could better visualize the lesion on the sonogram. First one was done using CT; second was done using sonogram. You might want to ask about which he's using.

    This time, with the sonogram, they wheeled me in on a hospital bed, I scooted over to the sonogram scanning table and they positioned me. At the end of the procedure, I guess they pulled me back onto the hospital bed -- no recollection, but I came to back on the bed in PACU.

    I did NOT see the "tool" that they use, nor did I want to. No laparoscopy -- they use imaging to guide (see above). Both times, I had a very small incision on my abdomen (less than 1/2 inch) that they covered with a bandaid when the procedure was done. My understanding is that it is a small rod (probably thicker than a "needle") that they insert and then heat when they are at or near the targeted lesion. They don't just zap the lesion itself -- they go wide.

    If you have any more questions, please feel free to PM me. I've found these procedures to be pretty easy to tolerate, and I'm guessing you will, too.

    Bev