Liver mets: resection, ablation, SBRT, Y-90, anything else?
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Thanks everyone, encouragement means a lot, I wasn't clear about which Tuesday, it's May 1st. I see my MO on May 17th and then go directly the airport.
We felt we should do a easy trip since I have no idea how much energy I will have, so we are taking a train trip through Canada, then stay in Vancouver for awhile and fly back from Seattle on June 4th. I will probably have my second Y90 that week.
JFL, How is your energy level, I find it incredible that you returned to work so quickly ,I am hopeful that I will not be drained and have to drag myself to do anything.
Granada, please send pictures of sunshine, I am desperate, living near Chicago our weather has awful.
Kathy
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Sounds like a beautiful vacation for you in between y90's. Yes I will seed lots of pics of Hawaii. Can't wait to go.💞
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Kathy - maybe our paths will cross on 5/1. :-)
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Kathy, my energy levels are a little lower than usual but nothing extreme. It was fine the first 6 days while I was on the steroids but once those were done, I crashed a bit. Also, I had Doxil yesterday so that will add to the fatigue a bit too.
At my MO appointment yesterday, he said that PET scans are difficult to interpret after Y90 because the body forms scar tissue around the Y90 beads and that will light up on the PET. Has anyone had trouble with PET scan readings after Y90
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JFL, My MO uses MRI's for the liver and CT's for the lung but I've not had a PET scan in years. I'm trying to find out how much tumor burden I have, perhaps when IR finishes the calculations I will get a better answer other than significant. The IR doc also said my tumors had Neuroendocrine characteristics and that is favourable, I'm not clear on what that really means, more searching to do.
Has your MO discussed abemaciclib with you? I may be able to go back to a hormonal which I prefer.
-K
KC, I would like to meet perhaps for coffee, I will PM you.
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Kathy. Glad things went so well! Onward and upward!
Babs
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Kathy, interesting about the neuroendocrine characteristics. I don't know exactly what that means either but it sounds favorable as far as Y90 is concerned. Ideally, I would love to have a PET-MRI although I don't know if that exists. It seems every doctor has a preference when it comes to scans. Yes, Abemaciclib has been kicked around with my MO and is in the short list. Ideally, I would like to get to a point where my liver mets are decreased and stable and then go on Abemaciclib as a maintenance therapy although not sure I will be afforded that luxury!
Babs, Grannax and others who have already had Y90, did your liver enzymes and/or tumor markers flare after the procedure? I have heard this is common. My liver enzymes were still in normal range at my MO appointment on Friday but did increase slightly. My MO wanted to ensure they were okay before letting me do Doxil on Friday. I thought I was taking an extra week off for this round of Doxil but realized at the appointment that I was not. I think I would have had a break if I were still taking Abraxane (every 3 weeks) but Doxil was on its regular every 4 week schedule. I feel better about not having any break. Still waiting for tumor markers.
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JFL my MO does not do TM. And all my other numbers have stayed the same.
I've had two PET scans since y90. Neither mentioned scar tissue. Both said there was no uptake in the liver mets. But there are shadows, and some normal tissue can be seen. I don't know what that means . Ill have my next one in late May. I am allergic to iodine so i cannot have CT. Ive never had an MRI of liver.
I had an interesting conversation with MO last week. I finally understan d her take on F1. She said I think the Ibrance is what your tumors are responding to not the AI. My report showed ESR1 alteration. So I'm thinking Ibrance is not supposed to work alone. She says fda says it has to be rx w AI. I said what about faslodex? She says they are all the same, meaning that any type of estrgen inhibitor will not work on me.
Then she says when Ibrance fails ill probably use Afinitor/Aromasin. I said i don't want to take Aroasin. I've taken it before, I dont want too take it again. Obviously none of them are working for me anyway. Im probably even more resistant now after 15 months if treatment. So, she starts talking about fda again.
Between the lines, I'm thinking OK rx AI but that doesn't mean i have to swallow it. There might be some AI going down my toilet at my house.💞
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JFL-my tumor markers did not rise but my enzymes did flare up for a while. That is very common with the Y90. My MO and IR did not recommend doing a CT until 3 months out from the Y90 because they said it would take 3 to 6 months to be able to see the tumors die off. I only had 2 tumors and one was gone completely and the other had shrunk when we did the CT at the 3 month mark. It was not until I had a MRI a year later when I was hospitalized due to a gallbladder attack that the MRI showed the tumor was dead or not active as my MO explained it. So I ended up having a complete response to the Y90. I just did not know it for a year.
Grannax-so excited for your trip to Hawaii! What a difference a year makes! Have a great time!
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My liver enzymes have stayed normal throughout. On the Doxil my TMs have gone down. I’ll have my scans on 5/23 so will hopefully have some kind of read on the Y90 then
Bab
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So thrilled to read many success stories about local treatments for liver mets!!! I’m rooting for you all as you continue to heal and get this under control!!
I had a microwave ablation back in October when my liver mets were down to one .. it was an unexpectedly painful experience and recovery but the worst part is the liver mets continued to come back and now I have multiple ones .. I’m hoping Doxil is working it’s magic and taking care of that but I will not know for a couple more weeks.
So, I was never offered a Y90 or a SRBT when I was discussing local treatment options- which I had to push for btw- So I’m wondering do you have to reach a certain stable state before you can be a candidate for these local procedures?? Like a have several consecutive scans that show no new progression before you can go for local treatment??
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Max_Otto - Thank you for the articulate description of the details of the procedures. It will help many. Please keep it coming. I am really interested.
>Z<
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Nouzay, for Y90, one doesn't need to be stable in the liver but typically, one would need to be stable in mets in any other organs (although there are always exceptions). If you only had 1 liver met, it makes sense you would not be offered Y90 back in the fall, based on the logic that there is no reason to target a whole liver lobe (and risk the collateral damage to healthy tissue) if you only have 1 met that can be isolated and targeted on its own. Y90 is mostly administered non-selectively through the hepatic artery into an entire liver lobe. The liver has 2 blood supplies - the portal vein and the hepatic artery. For some reason, the cancer cells primarily feed off of the hepatic artery while healthy tissue feeds mostly off of the portal vein and relies upon the hepatic artery minimally only (for about 15% or so of its blood supply). The cancer cells have a way of highjacking the hepatic artery blood flow. However, there is some damage to healthy tissue that cannot be avoided with Y90.
As for SBRT, I do not know exactly but I don't think you need to be stable and it is typically only given to those who have a limited number of liver lesions (oligometastatic patients).
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Hey ladies, it looks like I am joining your ranks!! I was dx stage 4 de novo 07/15 with mets to liver. I spent 16 months on Ibrance and letrazole, then a trial of Kisquali which didn't work, and recently finished up 12 months on Xeloda. I have down been changed to Afinitor/faslodex and just met with the RO for Y-90. My mapping is scheduled for 05/14 and the procedure 05/30. I am insanely nervous. Thanks for sharing all of your info and I look forward to adding mine soon!
Alissa
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Mama I'm glad that you are a candidate for the y90. Yes, you are joining the y90 Club. Not a club any of of us ever wanted to join. But, when it works, like it did for me, it can make a huge difference. Where are you having yours done? Do you have lots of liver mets? Tell us everything so we can know how your experience is. In my opinion, it sounds scarier that it felt, if that makes any sense. I'm almost one year out from my second y90, May 24, and January scan showed no uptake. My next scan is May 25.💞
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Grannax, thanks for the welcome. My procedure is scheduled for 05/30 and is being done at Huntsman Cancer Institute in Utah. At last scan(3 weeks ago) and really since the beginning, I have had 5 liver mets, only 1 has been active up until recently. Now all are showing small progression, so I was kicked off Xeloda. We looked at ablation for the active met, but it is too intertwined in the tissue. I am so worried about downtime as I have 4 very active little kiddos!!
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Mama Yes I saw a pic of your beautiful children. It seems everyone reacts a little differently. Will you have someone to come help you the first few days, or can the kids go stay with grandma for a few days? Some I R say to stay away from your kids, some say three feet away, once again they all seem to have different instructions.
Some ladies have gone back to work three days later, I'm retired so I didn't have to worry about that. I live alone but my daughter spent a couple of nights with me. For me by one week I could do most of what I needed to do. By two weeks I was fine.
I hope you have some family near by to help you a little with your precious children. 💞
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Mama. I had my y90 in March and April. My IR had the 3’ 3 day rule. I went back to full time work 3 days later. My stomach was a bit wonky and I was tired but otherwise felt ok. I hope your Y 90 goes easily and w/o any issues!
Babs
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Mama,
My first Y90 yesterday went smoothly, slightly shorter than my mapping. Today I am doing household stuff as usual, I do take breaks. We've had a painter in and things are not as tidy as usuaI and I am putting things back in place and I’m not tired. The only effect is no appetite but I’m sure this will not last.
I have 4 children now adult and I remember how busy you must be
I second the suggestion to have some household help and possibly a sitter who can be with the kids for a few hours as needed.
My IR did not tell me to take any precautions.
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Glad you are feeling good, don't over do max otto.💞
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I've had my first scan and my liver mets are stable. My onc claims it means that the medication (Kisqali) is working, since no progress is good. I'm not convinced. I may go for a second opinion.
What made your doctors decide to treat the liver mets? For reference my liver is filled with peppercorn mets, with 2 larger ones that cause me absolutely no problems. I have no pain, and my liver enzymes are normal. Is it worth "messing around" with my mets?
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Evagor Stable is good because we all know that cancer grows unless it's responding to TX. After I had been on TX 3 months the scan showed that one of my liver mets was even more active than before treatment. That's when my MO suggested I go see the I R. They want your numbers to be good for liver function. I've never heard of your type of liver mets. I don't know how fast Kisquali works.i was not having any pain either. So, I really don't have an answer except my opinion. Which is if there's more you want to know research an interventional radiologist who does a lot of y90, go for a consultation. He will tell you if you're a candidate or not.
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Mama2twinsplus2 - Glad to hear you are getting the Y-90 soon. I am also at Huntsman (in SLC at the University)! I was diagnosed with a small liver met a few months ago and had it ablated there by my RO. PM me if you want to, and I would love to chat.
~Kari
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Hi all, I see my IR for an office visit in 10 days, but got my CT report, I had a scan 4 weeks after my ablation. Im not a doctor but it seems good to me- no evidence of residual disease and no new lesions. I was under the impression the IR would call with results, so a bit nervous he wants me to come in instead. The most surprising thing from the results, though, is the measurement of the ablation cavity - 8.9 cm x 9.3 cm x 4.6 cm. I find that crazy!!! No wonder I was in pain!
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jamiemarie - That sounds like great news! I found out my results the same day from my MO and then saw my CT report online. My IR wanted to see me over a week after the CT scan. When I met with him the appointment was about 30 seconds and he said the lesion was successfully ablated and to schedule another CT scan in 3 months. Maybe good news isn't treated as urgent. Ouch - my ablation cavity was 1.5 cm and that hurt like crazy.
~Kar
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Hi Kar, thats a relief. My mind started on the “what ifs” when they told me to make an appointment, so hopefully mine will be as uneventful as yours!
I do plan to ask about the cavity though.I even got my ruler out when I read the report - do I even have a liver left lol?!? Scans werent clear if I had one lesion or multiple cluster together, but the longest measurement was 3.2 cm. But I gues whatever it takes!
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Jamie, sounds like great news! The liver is wonderful in that it regenerates so don't worry about the cavity.
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Hi all, just an update after seeing my IR today. The CT said no signs of residual disease. However, the IR doesnt feel 100% confident that he got everything. So his recommendation is to do it again and take care of the area he feels he might have missed. So I’m scheduled for ablation again on June 7.
I completely agree with him that if there is any doubt, lets take care of it and do more ablation. But also bummed- The first go around was so unexpectedly painful with a longer recovery than I anticipated. I hope I wont have the same experience, but I’m mentally preparing for it. Then again, I feel fine now, so I know that it too will pass. Just bummed
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Hang in there jamiemarie. You've got the little sh@#s corned, one more round and they are toast.
>Z<
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Jamiemarie - I agree with Z. It's worth it and hopefully this time it will be a breeze.
~Kar
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