How are people with liver mets doing?
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JFL, I am thinking of you and holding you in my heart during this scary and sobering time. I'm so glad that your parents are coming out to help and love on you all in person.
Arrolson, I've been wondering about you and I'm thrilled at your progress!
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JFL, your parents are probably coming to help out with your 5 year old, esp if you are doing distance learning. Also with new treatments and researching new treatments, you will need someone to manage your home..food, cleaning AND to give you opportunities when you feel well to focus on your 5 year old.
I only say this as I am a grandmom of very young children and if my daughter was in this situation..I would be on a plane too.
Treatment choices are out there..just need help to get them. We are your cheerleaders and envision all of us encouraging you to find that right one.
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JFL, I am so sorry to hear about this new development. I am hoping and praying they find a solution for you
Arolsson, That is an exciting drop in tumor markers. I cannot imagine being told there is nothing else to be done. I'm so glad they found that 'something else'. Praying the scans confirm.
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JFL- Prayers. Hug from here.
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JFL, I am sorry to hear about the latest developments. I am glad that you are going to a nearby NCI cancer center, and I hope they find something to beat down those cancer cells and give you relief from the ascites. Your parents will be able to give you some help and support during this time, so I am happy to hear that they will be visiting. You are in my thoughts and prayers.
Hugs and prayers from, Lynne
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JFL,
As others have said, we are all here for you. You have been such a stalwart on these boards, and so helpful to so many people, including myself. We are sending a collective prayer out for you that you may find a solution to your situation.
Bev
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JFL
You are not alone! We all care about this turn of events and hoping it will turn back around with good results. Please report in to get emotional support during this scary time and crucial next step. 🙏🏻
Dee
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JFL - I know this is a scary time and feels like crisis mode, but you have access to an NCI-designated cancer center for 2nd opinions and your MO is obviously supportive and willing to work hard for you as well and in cooperation with the center. Let them work together to get this under control and then propose treatment options. Try and slow down and breathe. Although I know it's almost impossible, don't think too far ahead. Take this as a moment of crisis and not the beginning of the end. I will be paying for you that God watches over you and your family and guides your doctors on decisions and treatments.
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JFL, I was shocked to read your post. How can the TX trigger the ascites so quickly? How do you feel? I've heard ascites is miserable. I'm so sorry but still hoping it's not the beginning of the end. You and I are the y90 girls. You've always been so thoughtful to support me. You've mentioned before that a second y90 might be in your future.
Meanwhile, I will be thinking about you every day. I hope the second opinion can give you a viable option for TX. 💞
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JFL- I’m happy you have access and been referred to a NCI. I’m sorry about the rapid acities. Do you think it was brought on by piqray treatment? Praying for a quick turn around and solid plan ahead!
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JFL, I'm so sorry to hear of the ascites development. Trusting between NCI center, 2nd opinion and your MO they will find the next treatment that will work and turn this event around for you. I'm so glad to hear your parents are coming. They will be the comfort and support you need. You've always been there for all of us and we will be here for you now. Please keep us updated when you can. Will be thinking of you daily and holding you in my heart. (((HUGS))) and love.
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Thanks, everyone, for your supportive responses. This really is the only place I can speak freely without having to soften my words or hold back and the only place where people fully understand what I am going through and up against. You don't know how much it means to me.
Grannax, I don't think Piqray caused the ascites. I took Gemzar for 9 months and then had a little progression, not too much. Gemzar was likely keeping most of the cancer under control. When I progressed on Gemzar, I changed over to Piqray. I think the Piqray / Faslodex just isn't working and taking the hormone therapy and blocking the estrogen receptors is likely further fueling my tumor by forcing it to go through more aggressive pathways that seem to be open. I did read that those with the FGFR1 mutation tend to have more resistance to Piqray. The article stated that people with the FGFR1 mutation tend to do better on Afinitor. Well, that didn't work for me either. I pretty much only respond to chemo at this point. The only targeted therapy that worked for me was my first line Ibrance.
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JFL,
We all feel that kick in the gut when MBC rears its head for any of us who aren't sure if they can get to a safe place. You are doing all the right things and are so smart about handling it, but with a 5 year old it's just crushing regardless. My daughter was 8 when I was diagnosed, and I spent the whole time in the MRI machine counting on my fingers (which were tightly wrapped around my head) how many years I would somehow have to survive in order to get her to various important stages of life. It felt so impossible.
Right now its just paramount to get whatever Ascites-Be-Gone chemo that is most likely to work going, and then Enhertu and/or new clinical trials!! Immunotherapy combos are going to come on strong next year too, keep the faith...
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Hello Everyone
I have not posted publicly about my liver problem as I assume it was gone after surgery. But, today I met with my doctors only to find out a small spot on my liver - to small to calibrate in 3 months had grown to two tumors: 2.3 @ 2.4 along with 7 tiny tumors growing.
Ibrance failed Treatment after 6 months. I and now on to a new drug drug to kill all the littletumors and the small ones forming.
Has any one experience the kind of progression ? Would really Like to have any advice or information from you.
Thank you all- Annamaria
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Annamaria,
I am unclear as to whether or not any liver tumors were there prior to your Ibrance treatment?
You may want to think about local treatment for your two larger tumors. For more information on this, take a look at this thread:
https://community.breastcancer.org/forum/8/topics/...
It's a long one, but it has a lot of info on local liver treatments. You would need to meet with an interventional radiologist to discuss.
Good luck.
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JFL- thinking of you and sending hugs. I am so glad that your parents are coming. I do hope that you can get a new treatment that works,
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JFL, Things just have to turn around for you. Many here have been in dire situations and came out of them. Including you. I will believe you are a cat with nine (or more) lives. You are such a wise, sensible, intelligent voice here, and such a loving mother. I am with you.
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Bev, regarding zapping the liver tumor, I’m glad your IR is prepared to do that for you. If after that you can get neratinib approved to go with your faslodex, you’ll have attacked this cancer from three angles at once. (Maybe start the approval process now if you are considering that option.) The first time I headed for Y90, it was my MO’s idea for me to see “this liver guy” who was having success treating bc patients. I was in his office setting up the mapping appointment when my first month’s Xeloda tumor markers came in. The response was so dramatic that he said we should save Y90 for another time. The second time I pursued local treatment, I wanted local treatment because Xeloda seemed to be controlling most previous liver mets, so my onc and I wanted me to stay on Xeloda. (I started out my mbc diagnosis with extensive liver mets, so it was not possible to begin with local treatment.) We figured we should zap those rogue tumors. But at that point I had had an episode of a liver abscess (onc was very concerned, hospital, IV antibiotics, etc.), and given that history and the presence of my biliary stents which can be a highway for bacteria, the IR was very concerned about creating infection-prone places in my liver and only wanted to treat one met that he thought was still giving me pain. Well, phooey. But I got lucky in that the trial drugs worked so well. Are you still waiting to hear from your onc? Keep asking questions until you feel you know the best treatment for you.
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SP,
Thanks for your input. I truly appreciate it. My thinking at this time is that if my IR wants to zap this tumor, I'm going to let him. I understand the whole thing about having something that meets RECIST criteria for clinical trial purposes, but the last microwave ablation gave me a good period of time without any further liver tumors, so I'm hoping this will give me another relatively calm 14 months. My bone mets appear to be controlled by the systemic treatment for now.
My MO messaged me and said she'd be back in touch either today or over the weekend. So no, I haven't even gotten her take on everything yet. Hopefully I'll hear from her tomorrow or Sunday. If not, I'll have to try and contact her again on Monday bc we need to talk about all of this stuff going on and also what to do about drugs during the time period when I'm having/recovering from the ablation. Last time, I hadn't started Ibrance yet and was just on faslodex. I don't know what the plan will be for this time. I also don't know about what her views are on the neratinib, so there's that.
Having cancer isn't just a medical thing. It's a mind game to keep all of this info straight and to figure out how it all applies to yourself.
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Hello BevJan - yes - I had a tumor on my liver that was removed in August of last year. Thank you for the referral link. Gouging to read it right now. Annamari
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JFL. I was afraid you were going to say that about the ascites not being caused by TX. So, it's being caused by progression in liver. Can it be drained to make you more comfortable? When is your next scan?
Virtual hugs to you and your family. Stay strong and wait. I hope the docs will come up with the exact right chemo to shrink those liver monsters.💞
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JFL-I have heard that ascites are horrible and I hope your new regimen can resolve that issue. Let yourself use this forum to be as angry and sad as you want, we are here rooting for you xo AMY
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JFL, I had ascites in 2016 due to liver and bile duct problems. The AC cleared it right up..took a few weeks.
Looks like you are on oral cytoxan..so maybe this chemo will take care of it. You are young and strong desire to live.
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arolsson: what good news about your TM's. That was a huge drop over two months. Maybe it continue in that downward path. When in October is your scan?. I have mine on Oct 17th. Like you, I want to know and I don't want to know. Will I be overjoyed or will it all come crashing down on me? I was supposed to get it done in August but Covid changed things so I am overdue. I have managed to push scanxiety to the back for a while but it is slowly creeping up.
Let us know!
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Annamaria
It is so hard to hear you have progression. I hope you find a treatment that stops the rapid growth. Since your tumors appear to have developed resistance, It might be prudent to ask for another biopsy to get a new genomic profile. That would help knowing a bit more on which direction to go.
A few of us have had good success of reducing the tumor burden of the larger liver tumors with local treatment while searching for the systemic treatment that works. You had surgery already and know local treatment can help but doesn’t always stop the Micro metastasis we cannot see on scans
I had y-90 and bland embolization. The 3 large locally treated tumors are still shrinking. However, I am still looking for the secret sauce to halt the growth of the little ones.
Keep clinical trials in your bucket. Many are promising targets for mutations like ESR1 or resistance to CDK 4/6. It’s important to know these trials often limit prior metastatic chemo to 1or 2.
I am entering a trial for a CDK 2/4/6 Because my tumors grew while on verzenio
https://clinicaltrials.gov/ct2/show/NCT03519178
Let us know how you are doing and if we can, we will try to answer questions and share our experiences.
Dee
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Dee or anyone that had Y90 was any of the tumors over 3cm...?? Like 4cm?
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NicoleRod- my bigger one was 4.5 cm when I had Y-90 in January. It has gone down to 2.6, still shrinking and is considered inactive
Dee
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Thanks Dee!
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I’ve been distracted by resuming online learning for all 4 of my kids, my new job teaching in this environment at a new school and my anemia issues.
I t think of everyone often even if I don’t post.
Hugs to all of you
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LFF hope you are well thanks for checking in! Good to hear from you!
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