How are people with liver mets doing?
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HopeandGratitude - I know it's tough looking at TM going up, but glad they are getting your scans done at 3 mo. Less waiting. Hoping for a good report.
Arc1970 - welcome! I get liver twinges too. They come and go. My MO will palpate the area to make sure the liver is not swelling and last scans said it is normal size. No one knows why I get those pains.Where are you in your journey?
Dee
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I am early...I was diagnosed de novo in January this year with mets in liver and some lymph node involvement. I am on my second round of Ibrance. I have very few side effects and wouldn't know I was sick if I didn't know I was sick. I feel bad saying that because I know that many in this situation are really suffering. I was only diagnosed because I got shingles and it led into all this. How far are you on this journey?
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day 2 of cyber knife to the brain tomorrow and Covid shot #1 for me.
Thinking of everyon
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In your pocket, LFF.
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another one in your pocket LF
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In your pocket LFF.
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LFF in your pocket!
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LFF- wishing you peace through this process.
ARC- March marks 2 years surviving MBC. It has been a rollercoaster for me. Thankfully the clinical trial I am on stopped progression and gave me “stable disease” for the first time. I am hoping to get a long run from it. Good to hear your treatment has not been tough.
Dee
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LFF, in your pocket too. Hope your pockets are roomy.
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You are in my prayers, LFF.
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LFF,
Thinking of you. This too shall pass.
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LFF, good to hear from you. How many more cyberknife tx? Yay on the vax!
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You're in my thoughts LFF.
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Saw MO today. Starting Afinitor and Exemestane in a week/week and a half. I asked her that if it doesn't work can we give verzenio a try...she said yes, as long as no real big progression back in liver or other organs.
I talk to Pain Management tomorrow I am going to ask about stopping the patch and seeing if I am still the same. I have a bit more energy but still have pain in liver and stomach usually 4 or 5.
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Nicole- I hope the A/A is tolerable for you and does what it needs to. So sorry you are still at a pain level of 4/5 while on the patch. What are your next steps?
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thanks everyone. 2 down and 3 more to go. I have a treatment tomorrow then Monday and Wednesday next week. overall I feel pretty good. The fatigue is something else:
you all give me something to think of during treatment. I really appreciate your support.0 -
LFF, I hope you have someone to help you until your fatigue has eased. Not sure how you manage all of this, plus being a mom with kids still at home
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I am scheduled for SBRT the week of March 15th for a single liver met that has grown 2 cm in 8 weeks while on Xeloda. All other liver mets are dead. No visible mets anywhere else.
Today, I have blood drawn for Foundation1 liquid biopsy as the IRs could not reach the lesion to biopsy. My MO wants to see if a mutation is found from the blood bx.
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SandiBeach,
Good luck with the SBRT. Also, good luck with the liquid biopsy. I hope it can pick up any mutations -- my liquid biopsy didn't pick up anywhere close to what my tissue biopsy did, so I wish you more luck.
Please keep us posted on the SBRT to the liver lesion. After my last two back to back microwave ablations to the liver, I'm ready to try something else next time -- hopefully this is less trauma on the body than my MWA.
I know you've said this before, but are you gettin PET scans to determine what's going on with your mets?
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Hi BevJen. My MO orders quarterly abdominal MRIs and bone scans every 6 months.
She ordered the PETCT scan as she wanted to confirm that my widespread liver mets were dead from 10 months on Xeloda. Only one lesion showed activity and that is the one that is being radiated. She didn"t want it hanging around any longer. Her quote, "Dead lesions don"t mutate".
SBRT was chosen over MWA due to the inability to see lesion on US to biopsy. My lesion is 2+ cm.
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Sandi .. I will be in your pocket!
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Nicolerod, thank you for your encouragement. You have been through an incredibly hard journey with your cancer, but still you take time to help others.
If I could grant wishes, I would wish that your pain is from deep inflammation from latest treatment and soon will resolve.
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Good morning everyone. Just heard from my MO. CT and bone scan results back. Everything stable and the same EXCEPT a larger mass now appears in right lobe of liver, so need to get an MRI, confirm it's another tumor and not "something else" (???), then hopefully can deal with it "locally". It’s 2.7 cm so quite a bit larger than the 8 tumors being “controlled”, which are all about 1 cm or so. So after MRI, we take next steps. Hopefully we can deal with this one in isolation amd I can stay on same therapy for now - since everything else is controlled. 🙏🙏🙏. Scary times but I know could be much worse. Thanks to everyone who was in my pocket this scan
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SandiBeach - good luck with the SBRT. I guess we had similar findings with appearance of new liver met while the others are controlled or dead. I was surprised - and concerned- at how quickly this 2.7 cm mass appeared. Hopefully like you I can deal with it locally. I hope everything goes well for you andlook forward to hearing good news.
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HopeandGratitude- Keep us informed of what the MRI shows. Weird how the other 8 liver mets are stable but this one grew fast. Is this considered progression then?? And how does this work about keeping on the same systemic treatment if this new spot grew while on this treatment? Did your MO mention hitting this new tumor with local treatment or is that your thoughts?
Sometimes this cancer is so confusing. Do you guys feel this way? Some areas stable while other areas grow or form? How is the best way to deal with ?progression?
I have next scans March 22. So far, my liver mets have only changed 1-3mm in size. But I wonder if they would grow or like Hope they stay the same but a new one pops up.
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Candy,
Yes, this cancer is weird as can be. As reported, I had a liver lesion "pop up" last fall. It showed up on an abdominal MRI. This was the one that I had to have ablated two times because they missed part of fit on the first go-round in October.
Oddly, I've had several lesions, all less than 1 cm, that have sat there in my liver but have been seen since May 2019. They have never been biopsied. They have done nothing. So who knows why? Has the systemic treatment held them but then allowed this new one to grow? Did my original ablation in July 2019 hold them? Who the heck knows? Even my interventional radiologist has no idea at all. Also, Ibrance didn't seem to really hold my bone mets totally in check. Weird, weird, weird....
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Sandibeach - good luck with your SBRT. I like the way your MO thinks. And I hope they can figure out what's different about this tumor, as to why it's been so stubborn.
Hopeandgratitude- I'm sorry to here you have a new met popping up. Hopefully they can treat it locally and everything else will hold the status quo.
Nicole, it's good to be hearing from you again. I wasn't clear - is your pain at a 4-5 most of the time 'with' the patch? I can't imagine wanting to try to go without it. Is it causing other problems for you? Not questioning your judgement - just trying to understand. More importantly, I hope whatever is causing it settles down.
Candy - I'm so glad you may have found a volunteer opportunity that offers you a safer environment. Did I say that already? I agree about cancer being confusing. It's all so different for each of us - where it is, how it responds. It's frustrating.. and ultimately scary. I just try to soak up as much knowledge from those ahead of me, and I'm so thankful for the sharing.
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Candy-678,
My MO always says "everything is on the table" for how to treat. We wait for scans and then make those decisions. Because verzenio has held everything in check and there have been no changes for almost 2 years, she considers it to still have very good disease control. This one mass just "popped up". As BevJen says, it's just weird, weird, weird. Plan is to get the MRI and then biopsy and treat locally - decision on how to treat when we get a better idea of what this thing looks like and where and how it's located. Since only 1 tumor popped up and everything else in bone and liver (8 original tumors in liver) is quiet, she wants me to stay on verzenio, exemestane, faslodex, xgeva. So, even though a new tumor may be seen as progression, this isn't like in clinical trials where they would stop/switch treatments - this is clinical practice, so if possible, treat the outlier and see if everything else stays calm. Goal of course is to keep me on an effective treatment as long as possible. We will see after biopsy if there were mutations in this tumor compared to my original biopsy (of the "quiet" liver tumors). I pray this is just a pesky thing to remind me not to get too comfortable and we can deal with it and be done for a little while....no more pesky pop ups please!
Would love to hear other thoughts......?
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HopeandGratitude, your MOs approach is same as mine. Two progressions since Nov 2020 but goal is to stay on the systemic therapy as long as possible. For me with mTNBC there are few lines ahead but really for everyone, the longer you can stay on a line the better. I think you have an excellent plan.
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Awww thanks Sandi but it's all of you that are the really special people..sticking with me through all this.
HopeandGrad.... I am with you let us know when the MRI will be.
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