How are people with liver mets doing?
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Bliss YES hoping for trapped gas!!!
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Bliss- I just have to tell you that I spent Friday in the ER because I was in such a terrible pain in my upper abdominal area, about an inch below my sternum. It was excruciating to the touch and my stomach was like a rock! The pain had been building for several days until the point that it was constant 24 hours and getting worse not better. I realized if I didn’t get it checked out, it would either go away or only get worse. So off to the ER. They put me through every test possible - gallbladder (I have stones- was there an infection?), pancreas, heart, lungs etc. As it turns out, it was severe gastritis! I couldn’t believe it. I was in so much pain I could barely move. Standing upright was painful, walking was painful. But they gave me a cocktail of Maalox and lidocaine and a shot of Pepcid and put me on sucralfate and I had just started protonix in preparation for the Y 90, so they told me to stay in that. Here it is Sunday and I am about 80% better. Crazy times! Of course the ultrasound did pick up the two “new” tumors in my liver and they let me know that they were actually getting bigger. Very thoughtful of them! They called them worrisome. I hope Y90 blasts the hell out of worrisome!! Y90 is Thursday
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Hope I am so sorry you were in the hosptial with pain!!! Its so horrible I know. I hope your Y90 goes great and no side effects!!!
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Hope, That sounds like awful pain. I’m so glad you feel 80% better and hope the next days are even better. Wishing you a successful procedure for Y90 and a smooth recovery.
Bliss, Bev, Saulius, Grannax, Thinking of you all and sending healing vibes. This is a difficult time for all of you and you’ve been so supportive of everyone here. Now it’s your turn to be supported. I apologize if I didn’t mention anyone else also going through a tough time.
Nicole, I’m glad your recent test was easy, mri I think? I hope your pain is improving and the great liver results must be a huge relief. Good luck with your new treatment
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Bliss, Bev, Saulius, Grannax, sorry you are going through so much.
Glad to know Sandra's surgery went well. Next is the treatment? She'll sail through this.
Bev, hope your surgery goes well without any further complications,
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Bev, I'm glad they found the source of your pain, but sorry the solution is major surgery. Hopefully, you'll feel like a new woman afterwards.
Bliss, Yay for resolution of the right side pain. I hope they figure out the left side soon.
Candy, Mae, Mara, Grannax, Runor, Hope, and so many with big worries these last few days - you're all in my thoughts. Signing up for pocket duty, as needed.
We spent a long weekend camping. MO appt Wednesday - plan to talk about a possible dose reduction to get that one Verzenio side effect settled down. It reared its ugly head while we were gone. Ugg! First appt with endocrinologist May 5th, to talk about high calcium and Pth.
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Dear Bliss, S3K5, others, thanks for your kind words. Surgeon says they think they removed everything what was needed to be removed but taxane could be added depending on the pathology results. Sandra wanted surgery in order to avoid chemotherapy but seems she might get both... Saulius
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Saulius...I am glad they got everything removed that was needed to be removed. I feel so sad that Sandra might have to go back to a Taxane....but we do what we have to ...to stay in the game right? Most of all she has YOU as an amazing support to get through ANYTHING and EVERYTHING!!!
Rosie..thank you ..yes the MRI of liver was pretty easy...I will be bringing the disc to my IR today to get the best read....they think they saw some uptake in 1 of the tumors...and even though I had a horrible time with the Y90 I would do it again.
Bev...just prayed for you!!! All to be well and to help you to feel much better.
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Saulius...I am glad they got everything removed that was needed to be removed. I feel so sad that Sandra might have to go back to a Taxane....but we do what we have to ...to stay in the game right? Most of all she has YOU as an amazing support to get through ANYTHING and EVERYTHING!!!
Rosie..thank you ..yes the MRI of liver was pretty easy...I will be bringing the disc to my IR today to get the best read....they think they saw some uptake in 1 of the tumors...and even though I had a horrible time with the Y90 I would do it again.
Bev...just prayed for you!!! All to be well and to help you to feel much better.l
***** Ladies..... please FORGIVE me if I forgot to be in your pocket or ask how you are..this thread moves so quickly and to be perfectly honest...I think I miss some stuff...plus chemo brain...yea you know that...I feel like I read something and then read 3 more posts and forget the 1st post I read
. so I am really sorry if I forget to mention one of you but I truly think about you all everyday you guys are my best friends...(does that sound weird or pathetic? sorry....but its true). Also...this new puppy has me crazy busy..... Love you all!!!
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Hope, here’s to killing your liver monsters. Yittrium do your thing. Praying for you and your IR.
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Fantastic news! ARV-471 is working for me! Stable disease again. Tiny shrinkage in liver mets and no new tumors. 8 more weeks until the next scan. 🙌🏻💃🏻
Dr. Hamilton explained that the PROTAC delivery of my downgrader is like a cousin to the other SERDs. Maybe that vehicle is why I am responding. She had a great illustration but my brain was too happy to catch all the medical terms. 😉
A few labs are slightly low but liver enzymes are good. Getting a mag infusion. Hubby and I are going to the beach to celebrate 🏝
Cross posting in clinical trial thread.
Dee
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Dee- that is FANTASTIC news!! So awesome to hear! Definitely a celebration is in order! Will keep those prayers going for next 8 week scan! YAY!!!!
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Dee omgosh I am SOOOOO HAPPY FOR YOU!!!!!!!!
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hi, trying to catch back up.
grannax - there is a Trodelvy thread here https://community.breastcancer.org/forum/72/topics...
Saulius - ugh. Glad the surgery is over but it sounds major. I hope Sandra's pain is well controlled. I know whatever plan comes up to kick this to the curb you will face it head on.
Dee - wooot! how excellent is this
Bliss - glad your procedure went well and I hope you continue to recover & the pains go away
HopeandGratituge - ugh, sorry you had such terrible pain! Counting down to your Y90 with you!
not much new here. Holding immunotherapy again while we wait to resolve my lung / pneumonitis / shortness of breath issues. Am supposed to get lung function testing and spirometry stat this week + a chest xray & then the respirology team will consult with me on Friday & we'll see. If it's steroids again then immunotherapy will be held for even longer. Trying hard to not freak out about that as I've had such good response to it & my liver mets have been steadily shrinking the whole time on it. Comforting myself with MOs words that nobody really totally knows how it works or if we need to keep giving it after a while - maybe the immune system becomes primed to just keep on fighting them and doesn't need the immunotherapy 'reminder'. Apparently some people keep responding even after stopping the drug. Anyway. Breathing issue is important & we really need to sort it out too so it's a matter of juggling all these things.
hugs everyone
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Dee, that's just AWESOME! So happy for you! Enjoy your getaway.
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Those that have had Y90 please read/help....
I just read my MRI.... it says all my liver tumors are like HUGE now... is that normal???
Also it did say something about "mild postobstructive biliary duct dialation identified in segment 8".... didn't someone say that the duct can cause high ALK PHOS?? Im so sorry I cant remember who told me that???
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Nicole, are they comparing this with a previous MRI?? I thought your MO recently said your liver lesions were dead. This sounds wrong. Could it be scar tissue?
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I believe they are comparing it with an MRI from either right before Y90 or right after I cannot remember....my MO is waiting to talk to the IR
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Cross posting----
Well, I am home from my MO. Tired. Well I guess the liver tumor boards recommendation is to "watch and wait" per my MO. Guardant test was not helpful--- no mutations seen, not enough circulating tumor cells. So.... I asked about a tissue biopsy next. My MO said "Good idea". I feel I am having to suggest things to my MO--- I suggested the Guardant test last month and she said "Good idea" then too. She doesn't suggest this stuff, I do.
Then on the way home (the 2 hour drive by myself) I was mulling over the appointment and when I got home I messaged my MO nurse. I asked if I am I getting ahead with suggesting these biopsies-- liquid and now tissue. I was off Ibrance a lot for the Covid vaccines and then the scan showed increases in sizes of the liver mets. Could it have been being off the Ibrance so much? And not mutation progression? The nurse messaged back the MO wants the liver biopsy now because it takes 3-4 weeks to get the results-- they use Tempest--and she does not want the delay later if we need to change treatments.
IDK what to do. I hate to go thru a liver biopsy and get no information again like the Guardant test. Anyhow, I am tired and not thinking well tonight.
Edited---Dee woohoo!!!!!! Happy for ya.
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Nicole - there must be something in the comparisons as you and Moth say. Let’s keep praying and wait for resolution on this!!!
Candy - I know they have made progress but I don’t have much faith in the liquid tests. I agree that liver biopsies are no fun, but I would go with tissue and you will have much greater confidence if they find or don’t find mutations. These tests are limited to to only 300-400 genes and we know there are 10,000s more we know nothing about. I agree that your MO should be leading the discussions and offering options. Concerning when they don’t. That’s when I would start looking for a new MOor have and excellent MO as second opinion lined up.
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Nicole, I am sure someone posted that the scans are not accurate for some time after the local treatment. Hoping that’s the case!
So many people struggling right now. I’m thinking of you all...
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Nicole, I didn’t have Y90, but after my ablation my MO said she can no longer read the images and that “all bets are off” on what she’s seeing. The IR told me that ablation shows as empty spaces and future imaging is usually only read by IRs, probably him in my case. I wonder if your results are something like that, hard to read due to the Y90? And maybe it’s not that the mets are truly bigger?
Candy, I know you were expecting a specific plan, not really watch and wait. Your MO and board must not feel your progression is to the degree of needing a change yet. Maybe that’s actually a good thing, stretching out Ibrance/Letrozole before moving to something else?
Dee, awesome news! So happy for you
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Dee, , I am overjoyed for you!!! Have a wonderful time at the beach!
xoxo
Katty
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my MO said this in a message today:
I saw the report from the MRI today and I know you were able to view it as well. Thank you for dropping the disc off to IR Dr. T.. We spoke briefly today and she is going to call me (hopefully tomorrow) after she reviews the images to give me her impression. In your case I just want to get her opinion prior to jumping to conclusions. If she is in agreement that the tumors are larger, then we will need to talk about therapy that may be more aggressive (back to chemotherapy likely). But let me understand what is going on better first. I hope I am calling you tomorrow with a plan,
I am totally panicked now....
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Thanks for all the congrats. It’s so amazing to be at this place and treatment after 2 years of fighting.
saulius- glad the surgery got the lymph nodes. So sorry for the taxane regimen but it sounds like in the long term it is a plan with merit. When we first had surgery with chemo, the goal was to remove the cancer and kill any straggling cells. Maybe they are treating it aggressive to get best long term results.Candy- I had two liquid biopsies with no results but my two tissue biopsies with NGS provided good results with a couple actionable mutations. And definitely more information about what I wouldn’t qualify for. Less guessing! I know what you mean about pushing our doctors for these things.
SeeQ- I care that you’re having a tough time with side effects on Verzenio. Hope they get that under control quickly. The stuff we put up with to kill the cancer
Moth- Prayers for you to get the lung issues resolved I’m so sorry you’re going through this.
Bliss- glad your stent was successful. Hoping you get answers for the pain on the other side quickly.
BevGen- Please give us an update when you feel good enough.
Hope- Prayers for the y-90 to whack-a-mole the little buggers, and for your pain to get resolved FYI- My tumors grew in the few weeks between the mapping and the Y 90. The IR was kind enough to tell me and I got off of Doxil right after y-90 to a new regimen.
Nicole- I was told to not really worry about imaging on the y-90 treated tumors for six months. when I had my PET scan 6 months after, they did not light up so they are considered dead.Those tumors are finally smaller but still on my imaging more than a year later.
I’m having my IVIG today and heading to the beach tomorrow I will probably go off-line to just enjoy my time. Will be thinking of everyone and hoping for the best.
Dee
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Thats Dee thats the wierd thing I just had a PET last week it said only 1 mass has some uptake on the outer rim only???
MOTH....I did find out my last MRI was in Oct 2020 before the Y90.....
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Forgot to post yesterday and Nicole's comment just now reminded me.
I asked my MO about a PET--- to look at activity versus size. She said that PET's are not good for liver mets. That the liver takes up sooo much of the glucose contrast that there is a lot of artifact in the images and hard to tell about the activity of the tumors. That MRI's and CT's are best for liver. PET is good for bone activity.
So many differing views of all this from the different MO's. Hard to know what is "right" for our individual cases.
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Bliss hoping for trapped gas too! But saying that I had 3 days of no sleep and pain with.....trapped gas
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IR said its all radiation fibrosis the liver has no active disease.... YAY
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Hooray!
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