How are people with liver mets doing?
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hope and gratitude
How big were the two tumors you just had Y90 on? I have made an appt with an IR to see if I can get Y90 done and was just curious. Do you know if once the tumor is killed, gone, zapped whatever they call it. Does the liver tissue in that area start to repair itself so it functions like the rest of the liver? Or is it just dead tissue?
Thanks
Julie
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julie would you mind sharing where and how you made a y90 appointment? that is something i want to look into since my mom is also in the y90 area but her MO hasn't referred her (even though i asked)
and yup, i'm nervous about trying y90 sooner than later as well. she's only tried kadcyla and enhertu for stage iv but liver tumor grew on both. she only has 1 tumor and a few lymph nodes but the tumor is 9cm now and that's basically the whole liver...
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Jjzn - I had one tumor that was about 2.7 cm and one that was 1.9 cm and they were quite actively growing. The way the radioactive microspheres are delivered via hepatic artery, they are preferentially taken up by the tumors leaving normal tissue unharmed. I do not know how much the tumor shrinks as it is being destroyed. My understanding is that the necrotic tissue from the tumor does not go away completely. I will find out more once I have my first MRI in early july. Others here have had Y90 and they can comment. One thing to note is that they only treated segment 5 and 8 of my right lobe as that is where these 2 tumors were. So, they don’t always do a whole lobe or both lobes - only what is necessary
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MacBook
I had also discussed Y90 With my MO and she did not want me to do it. That was a year ago. But I just had progression to brain mets. At least we think it's progression hard to tell since I never had an MRI before. But when I was finishing up my radiation treatment I asked the OR if she could refer me or if I should go to Seattle cancer care alliance. She referred me to an IR his name is Jason Bauer. I have not met with them yet for my consultation.
She also said OHSU had some drs that do Y90 but I've had bad experience with them so I stay clear of their dr's.
Julie
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Jjzn and MacBook air - Some MOs are very open to treatment options including different treatment modalities, systemic and local, most often used in parallel with one another. But not every MO. Not every case is textbook so sometimes local treatments are used to hit something growing rapidly to give time to find systemic treatment. In my case, I had overall good disease control on my systemic therapy but had 2 new tumors pop up in my liver. To keep me on the systemic therapy that seems to be working, I had local treatment, Y90, to hit the new tumors in my liver. The other 8 are still being controlled by verzenio.
I made an appt with an IR to discuss Y90 for the future when I was first diagnosed a little over 2 years ago. I didn’t need a referral and insurance covered it. You want to find an IR very experienced in Y90, but not just for liver disease, for MBC as well. The first IR I met I was not impressed - he was associated with my hospital. i then started searching until I found an amazing IR. He is in Charlotte NC. So a lot if it was my own research.
My take is that you really need a team to consult with because they all have their own opinions, experience and expertise- so get an MO you trust and who is open minded, an RO, and an IR who understands MBC. Second opinions should always be considered
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Jjzn and macbook y’all are getting good advice about y90 and IR.
Have you read the local treatment thread? It has tons of info, including my y90s and microwave ablations. I had two sets of Y90s, in 2017 and 2019, two Microwave Ablations in November and December of 2020. I honestly believe my local TXs are what have kept me alive for 4 1/2 years. This is because, for me, none of my systemic TX have touched my stubborn liver monsters. That’s just my experience not everyone has the same experience.
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macbook... I had Cryoblation done on 2 tumors and Y90 on 2.. First things though...how are your moms liver enzymes, bc if any ALT, AST, Alk Phos or Bilirubin are elevated she is not going to be a good candidate for any local treatment to liver....I have consulted with and had my procedures both done by the CHIEF IR's...at John Hopkins and at Medstar Washington Hospital center and both said my liver enzymes needed to be in a good place.....because these procedures are all taxing on the liver and Y90 can actually leave your ALK PHOS permenantly elevated...I was told that by I "THINK" SK3 on here she was told by and IR she consulted with and I am proof...my ALK PHOS has been at 359 since the procedure almost 5 months ago. It worked great...but that can happen so if she already has elevated numbers they may not be able to do that.
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cross-posting: these two threads sometimes overlap a lot!
it's only been 3 weeks for me since Y90 and so far worse side effect is fatigue, which was bad and is slowly going away, and some nausea, which the meds helped. An early blood test at 2 weeks should no ALT, AST, or alk phosph increases, but my liver enzymes were all normal prior. I will know more at blood test at 4 weeks (next week) . Abdominal MRI in early Jul. Fingers crissed
I agree with going with someone who has done this procedure a multitude of times. I trust my IR implicitly.
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I got to go to my grandsons game yesterday. I was so happy that I felt well enough to go only two days after chemo. It’s a one hour drive but worth it.
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lovely to see and hear Grannax!!
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Grannax2..YES!!!! love the photo
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Grannax2
Do you mean the Y90, ablation thread? I am on that thread. I wasn't sure if there was another local treatment thread that I was missing?
Thanks
Julie
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h i all. trying with an ex ternal keyboard
the pain finally put me in the hospital, the scan (ct) was unconclusive but all signs point to a mini fracture or pressure from that t10 met with the tumor pressing on some nearby nerves. Why my chest expanded more of a mystery, I got it down myself with 4 days fasting plus betapred but you cant keep that up forever.
The codeine plus paracetamol helps.
I am leaving for my country house tomorrow. I can't drive safely on codeine but can take the bus. Somehow I will get up there to peace and quietl. I will cancel my thursday herceptin infusion. I don¨'t care if I never come back.
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oh arolsson! I am sorry about the pain and the not knowing. I don’t think people know what gets endured with this disease. I pray for some tranquil time for you, rest, sleep, nature, peace.
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hugs , arollsson
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Dear Arolsson, I am so sorry you are in pain. Can they come and administer Herceptin to your country-house? Please take care. Your daughters need you, we need you... This disease is... I have no words for it:/ Saulius
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Aarolsen, I'm hoping for peace and comfort and that you have someone looking in on you at your country house.
xoxo
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Aarolsen.. its so hard when we are in pain to see a time when will not be in pain... - a beautiful sister on here said that to me a few months ago when I was in pain..and its so true. I pray you enjoy your time there and relax and get refreshed.
Well I am hopefully starting radiation on my sacrum this week. I have a LOT of pain now... I went from being fine to in pain every day in a matter of 2 weeks...it just stinks.
Anyway I am praying for NO SIDE EFFECTS!!!
My liver has been hurting again and I think it is because the 5mg of Affinitor has elevated my ALT and AST I will find out this Thrusday how much more they went up...and to think, we were suppose to go up in dose this Thursday to 7.5mg.
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Jjzn. Yes, that’s the only thread about local TX that I know of.
Thanks, HG and Sandibeach. Isn’t he a cute dude?
Aroison, Nicole. I’m so thankful I don’t have much pain right now. Sure wish y’all didn’t. If I had a country house, I wouldn’t want to come back either.
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Thanks Grannax!!
Loved your pic you posted!!! You look great!
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grannax,
got a question for you. When you had your second y90, wasn't it during a time that was considered progression?
My IR has told my MO that he will not do any more microwave ablations to my liver because of progression. He said the only thing he could offer was TACE, and then indicated that that didn't have the best results. So my question is: why not y90?
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BEV I forgot to tell you.,..Dr. Georgiades..the Chief of IR at Hopkins..(works with your IR)...he prefers TACE over Y90....maybe you should talk to him? My IR from Medstar Dr. Tabori...she told me once that all IR's have "their preference" for procedures...so with that in mind maybe Dr. L doesn't prefer TACE? I would definitely get a 2nd opinion.
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Arolsson- hoping you get relief from the pain and rest at your country home.
Nicole- May the radiation do its work and no side effects.
Grannax- adorable photo. Glad you felt good enough.
BevGen- how are you?? My mo said y-90 works better during progression. (AddedDee
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BevJen - I'm very happy to see that you are posting again and hope that your recovery is going well! My IR also said that she would not do further microwave ablations due to progression in my liver. She referred me to her colleague who performs Y90. I met with him and he said that I am a candidate for Y90. We will do my first scan after starting Trodelvy and then consider Y90.
Grannax - I love that you are not in pain and are able to enjoy your adorable grandson!
Nicole - I hope that the radiation will kill the cancer and leave you pain-free. Cyberknife treatment to my L4 almost immediately took away all my pain and the cancer there has been dead on scans since the treatment.
Arrolson - I hope that your pain can be controlled so that you can enjoy your time in the country!!
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Y90 will only work on active, growing tumors, not stable tumors. The active tumors are targeted via the arterial blood supply they are feeding from so they preferentially take up the radioactive beads, allowing the remainder of the liver to not be (minimally) subjected to the radioactive beads
If your MO has a preference of one over the other, I would still consult with IRs who have experience with different modalities to find out why one may be preferred in specific situations. One size does not fit all. You owe it to yourself to understand why so.you can make best decisions.
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Dear NIcole, good luck for radiation - let it be smooth and kill off these suckers! Saulius
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Thank you all so much! They moved up my appt time to 11am. Yes I NEED some pain relief.
Hope...I don't know about "stable" tumors /Y90 not working well..but all my liver tumors shrunk on Halaven/Eribulin right before I had Y90...and it still killed them all? **NOTE: I did think the Halaven MIGHT have stopped working but still don't know.....
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Nicole, I have eight “original” tumors in my liver that have shrunk and stabilized with verzenio. My IR refused do use Y90 on these tumors as they were being treated successfully by systemic therapy and because it would expose the entire liver to the radioactivity because there would be no preferential uptake by these tumors. The “stable” tumors in my liver do not have any pet avidity, meaning no uptake detected by pet. This could mean they are necrotic or it could mean that they are just too small now an they’re not active enough for the pet to detect. In any case, he would not use Y90 on these tumors. It was not until I had two new tumors that were actively growing would he use the Y90. So I guess there might be some difference in how we’re defining what might be a stable tumor. In any case the optimum effects from the Y90 appear to be from an active tumor even if it may not be indicative of progression.
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Hope I had my PET only a month prior or almost 2 months prior to Y90 and everything had shrunk and 1 tumor even showed no uptake and my IR still did the Y90 and it killed all tumors...so even the one that had no uptake took in the radiactive stuff and died?
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BevJen. Yes, I had progression in both lobes for my second set of y90’s in 2019. All the ones he treated died but a year later the microscopic ones started growing. Thats when he opted for microwave Ablation for four of the larger ones ( November and December of 2020). I did send him the CD ( March 2021) of my most recent MRI, there’s nothing else he can do.
That’s why I’m stuck with systematic TX.
I just found out that I’m going to have 3 Neupogen shots this Friday, Saturday and Sunday. Have any of you had them? This is the first time I’ve ever had them. Someone said to take Claritin. Why do antihistamines work on bone, joint and muscle pain? Interesting. I’m interested in anyone’s experience with these shots.
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