How are people with liver mets doing?
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Gran I'm curious how they can do a biopsy if the met has disappeared. I have always wondered how many people have cancer and never know because their body just takes care of it. I was always afraid of affinitor, mostly because of the lung issues and I smoke. I refused it as a 2nd treatment but I will probably have to take it eventually. Good luck with the biopsy. I hope you enjoy the holidays regardless!
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HLB One did disappear but several others showed u in different places.
It is still going to be hard to get to, though. I'm in sort of a dilemma in fact. My IR and my MO talked and looked at my scans together. The lesions are tiny, IR is concerned that he won't be able to get to them but is willing to try. His plan is to use ultrasound to guide him. So I would go to the hospital, get all prepped and ready then he would do the U.S. if he can see them he will give me sedation and do a core BX. He would take enough so it could be sent for Genomic testing and normal pathology studies. If he cannot see them, I will go home.
Ladies I need advice. Part of me says, just trust the IR. If he thinks he cannot get it then it's not worth the time and someone to take me, etc. Another part of me says, DO IT. It's only a day of inconvenient and if he can get it and it has changed, I will get to stop Afinitor and move to a more effective TX.
Let's take a vote. I want your advice.💞
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Grannax, it's a bit hard for me to understand all the details, but couldn't you have an ultrasound and let that determine whether you change drugs, without having the core biopsy? It depends as well if it's really only a day of inconvenience. How much preparation would you need to do and how long would it take for you to recover afterwards? Maybe you could write a pro and con list and see which is bigger. I pray that you make the best decision and you get all the help you need.
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Aussie cat I wonder why they can't do a U.S. in the office to see if they can see the lesions. I don't know the answer to that question. But, the samples of my lesions have to be sent to pathology to see if there has been a change in hormone receptor. They have to have the tissue to test it.
If they cannot see the lesions there will be no sedation, no recovery, I just go home. I have decided to go ahead with BX attempt because there's really nothing to lose and a lot to gain if he can get the BX done. So, right now they are getting insurance approval and it will be next Thursday or Friday.💞
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Grannax, I'm glad that you've decided to go ahead with the biopsy and that it will be done next week. I pray it goes well and the results are clear.
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Judt dx'd with liver mets. Next step is PET and switching to Taxol.
ANY advice is welcome. I'm so overwhelmed
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Judt dx'd with liver mets. Next step is PET and switching to Taxol.
ANY advice is welcome. I'm so overwh
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leee, just wondering if you've gotten a second opinion? I had a liver lesion three years ago and Xeloda cleared it up in 6 months. Now three years later there is another, and I'm now on Doxil, which is a little more tolerable than taxol..and no hair loss. Infusion is only once a month. Don't know you or what you've had in the past, certainly I'm not a doctor. But there are alternatives, and you may want to look into them before jumping off that chemocliff.
Sunset
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Grannax, has the idea of a liquid biopsy like Guardant 360 been discussed? Could be useful if a tissue biopsy proves difficult.
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Thank you for the message!
My onco mentioned a second opinion is an option but I haven’t fully wrapped my brain around what I need to do.
In 2004 i had AC chemo, the MBC dx in January this year with Faslodex and Ibrance
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Leee, are you currently at a research hospital? I dont know where you live, but if you arent already,that would be the next best move for a Second opinion. Something like MD Anderson, Baylor, City of Hope, UCLA or U of Washinton Fred Hutchinson Center....and many many more. People can help if you say what part of the world you are in. Take a deep breath. You probably have a little time to figure out the next move. Enjoy the holidays.
Sunset
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I’m in Oklahoma at a NCI.
PET scan next and liver bx if possible. The largest lesion is 1.3cm so hope that will work.
My Her2 was inconclusive/borderline on the breast bx so deemed negative.I feel it’s important if they can check if there’s a change.
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Gran I too am glad you're getting the biopsy. It seems to me he thinks there's at least a chance he will be able to see it with US guidance.
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Has anyone on carbogem developed pain on the upper left side of your abdoemen? it feels like it is around my spleen. It hurts when I twist or press on it. OF course I am terrified the chemo has stopped working.
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lisajo06, I am currently on Carboplatin only until my body recovers from SIRT (y90) I had treatment on Monday then fine until Thursday when my whole body aches. Its agonizing the pain. I would get a checkup on that spleen if I was you. Dont think its progression but I do know some meds we take can upset the spleen.
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Shetland. No it hasn't been discussed. I'm not even sure what it is. Where do they get the liquid from? I thought it might only be for lung, like plural effusion. Ill ask. Thanks
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It's a blood test, Grannax. The results are similar to what you get with a tissue biopsy sent to Foubdation One or Caris, showing the mutations that the tumors have and indicating what treatments could work based on that info. Mine did not cover as many genes as F1, but it showed a new mutation and pointed to a treatment. A Her2 mutation (different from Her2+ ) that neratinib (nerlynx) could work on. It will probably be my next treatment, when needed.We did this test because my TM indicated progression before a scan showed something big enough to biopsy. These ILC liver Mets can be small and numerous.
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I made it 13 treatments in weekly taxol before my anemia levels caused my MO to decide to decrease my next dose by 20%.
I knew I had been overly tired lately but blamed it on getting ready for the holidays.
Nice to know there was a physical reason for the extreme fatigue.
Hoping to avoid a transfusion and to get through the holidays.
Take care everyon
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Leee, if you do end up going the Taxol route, there is a group called
Weekly Taxol for Stage 4
that you can join. I read up on Taxol back in November when I was being considered for a clinical trial involving Taxol paired with another drug here at MD Anderson Houston. There were recommendations in one of the Taxol groups to ice your hands and feet during infusions to minimize damage. I checked on Amazon and found some slippers / socks that had pockets for ice packs that I had planned on buying. I ended up going with a different trial, though, so I didn't need these.
I wish you all the best...we all know how terrifying and overwhelming dealing with liver progression is.
Katty
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Shetland, did you do foundation one before, or liquid biopsy was the first time you had your gene mutation checked? My cousin is doing F1 now with the tissue from Jan 2014.(she’s not willing to do liver biopsy). I wonder if liquid biopsy will find something different
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Grannex, I had my liver bx done via a MRI guided bx. They were able to take a bx off a 2cm met. I guess it would be more expensive
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KPW3 I haven't asked him why he's not using MRI or CT but I have been wondering why. He does have my recent PET and MRI. I am allergic to CT contrast, but I don't think contrast has to be used with BX. I am having the BX at a hospital, at first I thought since it was just a U.S. it would be done in his office, but no.
Thanks for the info on liquid BX. I will sure push for that if the BX cannot be done. I am pleasantly surprised that my MO is planning to send my tumor sample to Caris this time instead of Foundation ONE. She says my insurance will pay for either F1 or Caris. And Caris tests for more mutations. I remember when Caris was not covered by anyone's insurance and was very expensive.
Pray for success next Thursday, December 27 at 10:30 AM.💞
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Hi everyone... I don’t often post but often read your posts. I believe I saw a page or two back that someone was thinking about Alisertib so just wanted to share some info. I have been on the clinical trial at mayo for four months. I only get alisertib. After two month scans my bone and liver tumors were stable which for me was huge because nothing has brought things to stable since mets DX last February. Just had four month scans and things are still stable. Hardly any SE either. Hope the info is encouraging and helpful!
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Ann1999. That is very hopeful news for the rest of us. You go girl.💞
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Ann, thanks for the information
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well, I saw my doctor and the carbogem stopped working. My liver panels are high. I get a scan on Friday. Since I morphed into triple negative I am afraid there is nothing left. My doctor said there were other options-but we won't talk about it until after my scan. When is it time to just throw in the towel?
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Lisajo, what distressing news and right before the holidays, too...I'm so sorry. I hope you can look into clinical trials; I know that many of them focus on TN patients, including some of the immunotherapy trials. Hang in there.
Katty
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Lisajo6, Dont you dare listen to him. There are still plenty of options. Have you had Eribulin? That's a good chemo and I would definitely push for Immunotherapy if you can.
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Lisajo, I agree with Tennille! He said there will be options to talk about so take him at his word and try to enjoy the Holidays! Heck even if my doctor said there was nothing to do I would be getting other opinions. Depending on how I felt of course. There's also the ReDO drugs and supplements to consider. I am reading "how to Starve Cancer" . There's a lot of good info in there, all based on studies.
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Hi everyone, can you please help with your experience and knowledge? My cousin switched to faslodex and Ibrance after xeloda stopped working for a year, when her scan 3 months ago showed progression on bones. The latest scan showed that bones are stable and some some spots in lung disappeared; HOWEVER, there’s a new 19 mm spot and probably some tiny ones showed up in liver. Her dr thinks it’s progression and wanted to change to another chemo therapy. I personally think liver is out of control because of removal of Xeloda and Faslodex/Ibrance combo does not work very well on liver. Can you please help me to uderstand why keeping the combo + local treatment on liver (like Y90) would be a bad option? Any comment is appreciated!!!
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