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How are people with liver mets doing?

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Comments

  • JFL
    JFL Member Posts: 1,373
    edited December 2016

    Babs, hang in there. Disappointing news but Taxol can be effective when other chemos are not. I hope it kills lots of cancer cells for you.

  • Mzmerz
    Mzmerz Member Posts: 80
    edited December 2016

    I've recently progressed to mets to the liver. There have been at least 12 pop up since September. I'm waiting for an ultrasound then biopsy. I am afraid a little about the biopsy. Can anyone share their experience with me?

    Thank you

    Amy

  • kaayborg
    kaayborg Member Posts: 576
    edited December 2016

    Amy, sorry to hear about your progression. I can say that the liver biopsy for me was completely uneventful. I don't remember a thing about it other than that it was over before I knew it had happened and any discomfort following I cannot remember either. Hoping the same for you.

  • babs6287
    babs6287 Member Posts: 1,619
    edited December 2016

    Amy sorry you're dealing with progression too. I've had 2 liver biopsies. They were both uneventful and easy. Wishing you the same!

    Thank you all for your support and kind words. I think I'm taking this a bit hard due to all our losses lately. Plus I so want to b around for my dd to get married and to have a baby!!!!

    Babs

  • Mama2twinsplus2
    Mama2twinsplus2 Member Posts: 98
    edited December 2016

    Hi ladies, it been forever since I've posted, but I checked in often. So sorry to hear of the sisters gone and the progression. I had my PET yesterday and heard the word progression for the first time. I have been on Ibrance/Femara since 09/15 and it is no longer working. The 3 liver mets I had now have tons of company. Luckily it didn't spread anywhere else, but I am devastated. I see my onc on Wednesday and we will discuss a plan. I know we had talked about Xeloda before. I hope everyone is doing ok and hopefully I will get a handle on myself come Wednesday!! Oh, and I had a liver biopsy at diagnosis, it was very uneventful also!!

    Alissa

  • babs6287
    babs6287 Member Posts: 1,619
    edited December 2016

    Alissa so sorry you have progression. Those are always hard words to hear! Once you speak to your MO and have a plan in place I'm sure you'll be able to breath easier

    Bab

  • artistatheart
    artistatheart Member Posts: 1,437
    edited December 2016

    Rest in Peace HoleinOne...so terrible. I hate this disease so much. babs and Mama, I'm so sorry to hear about the progression. I know how hard it is to hear those words. I hope you get started on your new plan, have no SE's and it kicks BUTT on those cells. Liver biopsy was not a big deal for me either.....

  • Mama2twinsplus2
    Mama2twinsplus2 Member Posts: 98
    edited December 2016

    Thanks ladies. I had the whole weekend to stress about it and write a list of questions for my onc. I am sure I will feel better with a plan. I knew I would of course have progression some day, you just never think it will be today! I hope everyone had a nice weekend and is feeling well!


    alissa

  • gramen
    gramen Member Posts: 116
    edited December 2016

    Please, please, please send some positive thoughts my way. Scan on Wednesday. I've been been on navelbine/herceptin/perjeta for 7 months, and there was improvement initially, lymphnodes and smaller tumors in liver cleared. Last scan showed main/larger tumor increased a little bit in size and SUV, so we decided to call it stable and continue treatment. Now that's scan time, I'm terrified Sad

  • babs6287
    babs6287 Member Posts: 1,619
    edited December 2016

    Gramen

    Lots of positive vibes from me to you!!!!

    Bab

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited December 2016

    garmen- only positive thoughts coming your way from me. Best wishes

  • artistatheart
    artistatheart Member Posts: 1,437
    edited December 2016

    Gramen, I just went through it and it never gets better, the anxiety. Mine starts up a few days before and I get weepy and snappy over things that seem silly to my DH. My stomach twists into knots...so I know how it grabs you. We will all be sending positive thoughts to you on Wednesday. Let us know how it goes.

  • JFL
    JFL Member Posts: 1,373
    edited December 2016

    Mama and Gramen, sending positive thoughts to both of you.

    Gramen, I hope your scan comes out as stable.

    Mama, it is scary to progress in liver but things can also turn around quite quickly for the better on the right meds. My liver is almost mets free after 9 months of Xeloda whereas when I started over half my liver was comprised of mets (nearly the entire left lobe). I hope Xeloda can help you if that is what your doctor and you finally settle on.

  • Mama2twinsplus2
    Mama2twinsplus2 Member Posts: 98
    edited December 2016

    Thanks for the love ladies, it makes me feel much more calm. One more day until I can talk to the dr.

    Gramen, sending lots of love and hugs your way. The night of my scans, I finally just started thinking, well come this time tomorrow, it will be over, good or bad. I will be thinking of you tomorrow!! Lots of love to everyone.

    Alissa

  • gramen
    gramen Member Posts: 116
    edited December 2016

    thank you all!!! I'm trying my best to keep it together.

    just realized I may not hear from my Dr on the results until my appt next week, since she's probably attending the breast cancer cancer symposium in San Antonio!!!


  • zarovka
    zarovka Member Posts: 2,959
    edited December 2016

    Gramen - you can get the scan results the day after the test if you go to the facility that did the test. Your doctor office should have it in a few days. I think is important to get the results before your doctor's visit. the office visit is about making a plan. It's best to read it and get the emotion, good or bad, processed before you see the doctor. The doctor's visit is not a therapy session, it is critical planning time.

    Wishing you complete and total healing.

    >Z<

  • momallthetime
    momallthetime Member Posts: 1,375
    edited December 2016

    Timothy what did you decide?

    Dani's tumors some are smaller, some are larger, some are new...the same for some bone mets, Onco says it's something thou, so we can only hope till the next scan at the end of the year. Insane!!!

    JFL thanks for letting me know about the TM's, hope it's not a pattern, then I will worry more, we'll see this week how it goes.

    Smarty thank you for sharing about Holeinone passing. Just unbelievable.

    Amy so sorry about the mets. I so wish they would do a liver biopsy for my daughter, but they won't. Onco did a BT with Guardant360. They do not wanna mess with the liver. Aghh, I thought it could bring new info, but they say they have enough.

    Alissa so sorry. Dani is on Xeloda, it does help a lot of ladies with these mets.

    Gramen, crossing even my legs ;) hoping for good news!! If you could get the results, as Zar said, either from the facility (I've gone back the next day, if I wanted it really fast), or if you could work with a Family Physician, which we do, and Dani always puts his name as another doc to get the results faxed (not just mailed), then we check with the facility (if she has it done early we even check the same day late) and then we get the results usually from Family Physician, I wish everyone would think as Zar said, what do they think, we are gonna hang ourselves when we see the results.

    Babs wishing the best of luck with the new treatment, and can't wait for you to hold that baby!!

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited December 2016

    Hey ladies.

    So sorry to hear about holeinone. That was frighteningly fast; she was dx'ed Stage IV after me. She had reached out to me via PM after my brain mets Dx. She was very sweet.

    I'm not officially here yet but I might be. Last CT showed hypodensities on the liver. Were small and I was starting Tykerb for brain mets anyway (already on Herceptin and endocrine therapy) so my onc opted to rescan in six weeks. I was wondering, what led to your livers mets Dx? Scans, symptoms, bloodwork, physical exam? My bloodwork and physical exam were fine; I don't think I have symptoms but of course since I had the CT I've been noticing random twinges in the area I never noticed before.

    Brain first is still an unusual enough progression of mets that I haven't found anyone else who was brain and then liver...mostly it's the other way around. If it is mets, I don't know if it's because my cancer fought it's way down the blood brain barrier to invade my liver or because I have them all along but they were just not big enough to be seen until now....

  • momallthetime
    momallthetime Member Posts: 1,375
    edited December 2016

    Bad as User, it's scary to see you here. yep, leave it to Dani, she had brain mets first, then this summer liver mets, dx in a scheduled Pet/CT. I don't believe one has symptoms at the onset of liver mets, if it's not responding to treatment or constant progression, then you area talking about swelling ascites etc..She has innumerable that progressed from 2 in 4 weeks span, some large some not so large, still working at it. I would have liked a biopsy to get some more details about WTH but Onco doesn't recommend. Xeloda/Herceptin/Ixempra for her, she is triple positive. A CT would be able to give more detailed info for you no? Sono? Blood work, I think gets messed up when liver is on the way of being damaged, etc...it does not appear right after diagnosis. I believe they watch out for AST/ALT Alkaline Phosphate

  • husband11
    husband11 Member Posts: 1,287
    edited December 2016

    My wife is going in for an MRI tonight. No decision yet on whether to stay the course on xeloda, or switch to palbociclib plus AI. Not yet been advised as to whether that option is open to her. Onc is looking into it. Next visit with the ONC is for two weeks from now, unless the MRI produces some frightening result. The xeloda is really doing her in right now. She isn't sleeping well at all because of the hand foot syndrome. It's the burning in her lower legs that keeps her awake, not the skin. She was doing acupuncture, and we thought that was working, seemed to be working for the first week, but now, it doesn't seem to be.

    I think she should go back to one week on, one week off xeloda. She had a lot less side effects on that regimen, more energy, better sleep, but the Onc doesn't approve of that dosing schedule.

  • babs6287
    babs6287 Member Posts: 1,619
    edited December 2016

    Timothy 1 week on 1week off is the standard at Mskcc. Maybe knowing that will convince your wife's MO

    Starting Taxol tomorrow am. Had my TMs done today and they doubled in just 3 weeks. Pretty scary

    Babs


  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited December 2016

    hang in there Babs. Taxol is a great cancer killer. Best wishes to you tomorrow

  • zarovka
    zarovka Member Posts: 2,959
    edited December 2016

    Babs - Praying for your complete healing and an easy day tomorrow.

    >Z<

  • gramen
    gramen Member Posts: 116
    edited December 2016

    ahhh! This disease is definitely taking a tow! I feel so weak, I just didn't have it in me to pick up the scan results and read them on my own. My hubby is trying to tell me that is fine, Dr will call Monday or worst case we'll discuss during my appt on Tuesday. Positive thoughts positive thoughts Heart

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited December 2016

    garment- I am going with no news is good news. Wish you didn't have to wait. Try to enjoy the weekend



  • Pipptone
    Pipptone Member Posts: 3
    edited December 2016

    Hi there I do not do the coffee enemas for weight loss. My weight is stable. I do it purely to support the liver.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited December 2016

    Yes gramen, what leftfoot says! No news is good news....babs, Thinking of you and hope the Taxol kicks ass like many of the women say. My TM's rose a lot too despite a good scan??? She found a spot on my L2 but said is is necrotic. In one month if my TM' are even higher she wants to consider switching meds but if my liver got better I don't.....we'll see. Happy weekend to all!

  • Sattipearl
    Sattipearl Member Posts: 84
    edited December 2016

    hi Babs,

    I hope yesterday was easy for you, and that your energy today is as you wish it.

    Love,

    Patti

  • momallthetime
    momallthetime Member Posts: 1,375
    edited December 2016

    Gramen positive thoughts! You almost there...

    Artist you mention if my liver got better, how would Onco know? What would you base it on? Scans? Or BT? I am always worry about the liver.

    Dani almost missed her treatment because her #s were so low, but Onco decided to take a chance, I am glad, she is coming along. MPV was 7.9Neutr% 1.0 The Hemoglobin also fell below their limit of 11.7 it's really 9.8. At what number btw would someone need transfusion? Below 6.0? Onco said it rebounces the week after, she is extremely concerned with the liver mets etc.. (innumerable, some got smaller, some larger, some new! So she always has this serious look), so I'd say Onco feels she could do that. Dani also does not have symptoms. Also, the AST/ALT is coming down, the Alkaline Phosphate was a bit down also, then going back up, three times consecutively, should it not be in sync? Anyone here knows?

    Also, I am trying to gather thoughts. Gifts. Dani has been going in 3 weeks one week off. So we get to see all the nurses that administer the infusion, NP, front desk person, secretary, the phlebotomist, other secretaries that sometimes take over when main secr is not there, insurance person, yep, and Onco. Also RO and NP of RO, and the people outside, she will see them this week or next again, and she has to be in touch with them every few weeks anyway, to follow up on Brain Mets no matter what. So what now? How do we gift everyone? Hanukah, Christmas I think they kinda would like to get something…Just a nice chocolate ensemble, no. Little gifts to each person? It's a lot of people but if it's the thing to do…Could I ask what are you all doing? TIA

  • Mama2twinsplus2
    Mama2twinsplus2 Member Posts: 98
    edited December 2016

    Hey ladies, just wanted to check in. I saw my oncologist last week and took the weekend to digest what she said. She thinks my primary breast tumor is still responding to Ibrance, but the liver mets are no longer because its possible they have lost their hormone receptors!!! I am having a well fought for lumpectomy tomorrow. I thought she would cancel it, but she said new studies she has seen shows sometimes taking the primary makes the mets less aggressive. Then the next day I will be having a biopsy to test and see if they are now triple negative or have picked up HER2. I am on only letraxole right now, which is freaking me out too. Once surgery/biopsy are healed from I will do 8 weeks of Ibrance with Faslodex added in, though she told is she doesn't have much faith this will work. By then we will have new info to use. I am a mess and have not slept much since hearing all of this.

    Babs and Gramen and anyone else who needs it, sending love and hugs your way!!

    ALissa

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