How are people with liver mets doing?
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Thanks, dunesleeper. And Isy, my Mets this time are also estrogen negative--last time they were positive. I've been on tamoxifen for a long time. What are the two different schools of thought? Thanks,
Sue
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Hi Sue,
Negative hormone receptor status used to be dx to anyone reading below 10% and mine is now about 3%. However the latest NCCN guidelines state that hormonal therapies should be tried on anyone wtih MBS irrespective of hormonal status as long as they are stable and relatively well. This represents a significant shift in treatment options.
Bestbird on this forum has written an amazing guide to MBC, you can get it on the thread in the stage IV forum: Topic: Just Sent the 400th Copy of My MBC Guide! It has lots of links to very current research and also a report that discusses how the biopsy results can be fairly inaccurate depending on where in the tumour the biopsy needle goes. The middle of the tumour may give a lower result as there is very little blood there, the very edge of the tumour may also give misleading results that could be mixed with normal cells. So it's all a bit hit and miss! I guess all we can hope for is to stay well enough to try out all the different options and see what works for us.
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Isy, thanks for your answer. Also, when I saw the doctor he told us there are two lymph nodes behind my collarbone that also lit up on the PET scan. I got a port installed yesterday and today had my first week of gemzar/carboplatin. Fingers crossed! Whee, roller-coaster ride, let's go! Yes, if you detect a note of dark sarcasm, it is there. My husband goes back to work tomorrow until Sunday. I can't swim in the pool until Sunday. (Whimper). On a good note, after moving twice in fifteen months, we finally found our church!
For everyone here, hoping only good things; no side effects, good scans, NED and stable boy reports.
Night all.
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Sueper13, you and I are on the same chemo combo. At first they used Taxol on me, but it didn't work and even though my TMs went down (by 2 points) my oncologist didn't feel right about it and sent me for a PET. Sure enough it had progressed a little in the bones, a little in the lungs, and made itself at home in my liver. So we switched to this combo immediately. I have a lot more queasiness with this, which is somewhat helped by dexamethawhatever, zofran (not terribly helpful but I take it the first 3 days after chemo), and a 3 day patch I wear behind my ear. It's not pleasant, but it is manageable. Best of all, it really wiped out those humongous inflamed lymph nodes. I mean, seriously, they are flat. I hope the treatment is doing to the inside (especially liver) what I can see happening on the outside, and I hope it helps you, throwing knock out punches to the cancer. I just finished my 2nd cycle (4 treatments) so we are gemzar/carbo buddies. Let's get to NED together.
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Just popping in to give hugs to everyone. Dune, I am with you there! I hope your tx is zapping the heck out of those liver mets. Bust em up woman!
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Dune - You Giver Girl! Bust them up and Stomp all over them! Same for you sueper13!
Cathy
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Thanks for the kind words! And dune, yes, let's. Is the 3-day patch scopolamine? What day of the week are your treatments? Wonderful to hear about the lymph nodes
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Sue, my treatments are Mondays --- but not this Monday. It's the week off. Oh yes! Gonna have over a week of feeling good. I'll try to check the name of the patch in the morning.
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Finished chemo (Tykerb/Navelbine) 3 weeks ago, PET scan shows new multiple (!) mets in my liver. Up until last week I was feeling almost fine, but now I have this dull pain in my liver area...what do I do, in such a dark place
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I'm so sorry ella, that the combo didn't work for you. Has your onc suggested another combination? There are so many to try, another one should do the trick. {{{hugs to you}}} It's so scary when a treatment fails, but don't give up hope.
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Thanks Sandilee, I am seeing my oncologist on Monday to figure out next step. Sigh...
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Oh dear Ella...how long were you on tykerb/Navelbine? I'm so sad & sorry to hear about new mets...and I understand the dark place, but we will have faith, along with you, that they'll find a new tx that works. I wish I knew what the pain meant. How did your blood tests/liver enzymes look? Are TM's reliable for you? I'm glad you have a meeting so quickly...time to move on & start blasting mets! Love & hugs to you.
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Ella,
I am so sorry about your progression , we all know how it feels to fail a tx, and we all feel your dark place. But like Ronnie said we will not lose hope neither should you. I hope monday's meeting will bring you a tougher solution on cancer and blast it. We are all with you with prayers and hope . Hugs.
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Oh, Ella, have faith, find something to laugh about so you see some sparkling light while in the dark place--I guess that's all you can do til Monday. Then, we are all hoping with you that your Onc will come out with something to annihilate those liver mets. Wish I could send you some tickle juice and some rollicking puppies or your favorite comedian or something to make you howl with laughter. Hugs and Laugher!
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Elita I can understand the dark place. Mets will do that. I hope your oncologist has a treatment to annihilate those mets.
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Just came back from my appointment with my MO. On Thursday going for Immune therapy session, something very new and experimental, but he is very optimistic about it, so should I, right? Will tell you all about it, when I know more.
Dark place, schmark place, I am out! and ready to fight. Thank you very much for a small pity party, really did it for me.
Cheers
xoxo
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Sounds interesting Ella. Please do tell us about it when you can.
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It sounds promising Ella , i had heard about it last year but never investigated it more. Please let us know more about it. As well as keep us informed on your progress . Not only fight , break the damn thing. Good luck.
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Ella, that's great that you get to do immune therapy. You go, Girl!
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Wandering, i am so sorry for the loss of your wonderful son. I am recently diagnosed Stage IV with liver METS, terrified that I won't see my 3 beautiful children get married or their kids. But I do find so much comfort in the gracious kinds posts of all you women in this forum. Thank you all and I pray for you all.
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Ella, very best of luck with your appointment on Thursday, it could be the future for all of us and you're the pioneer! Great to hear that you're out of the nasty dark place too, it's great to have something new to focus on. look forward to hearing all about it. Hugs.
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Glad to see you have an appt for immune therapy Ella. Better yet ,so happy to see you out and fighting! Inspriing how you do not even give cancer a moment to regroup.
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My oncologist is giving me a 3 week pause and trying to figure out what I'm allergic to. Is it the Taxol or the Fragmin or the Hydromorph? Giving up the first two for now. Ruling things out. I will return to the boards when they figure it out. Hope all are well till then.
Cathy
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Cathy,
I am sorry you are suffering through this treatment. I hope they soon figure out what is wrong and i hope it is allergies nothing more. Prayers.
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Wandering, don't feel stupid. We all ignore little aches and pains, chalk them up to old age or injury. In retrospect, I did have some symptoms I should of pressed for more testing such as shortness of breath, little stabbing pains in my chest sometimes. I went to the Dr. twice, once complaining of shortness of breath and was basically blown off and told I had anxiety because of the finger paddle test she said my respiration was normal. the the massive pain in my rib another gal in the same practice told me I must have pulled a muscle somehow. If we all jumped to the doctor every time we felt things we would go bankrupt. Keep on fighting, one day at a time!
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dune,
If you don't mind my asking. How is the gemzar/carbo affecting your hair?
Thanks,
Sueper
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Dear ladies, I'm writing for my mum.
As I wrote in some other posts, last year mum found out she had a liver met. She had six rounds of Herc/Perj/Taxol, which made her stable and then she had a liver resection. During surgery, the surgeon found other very small mets, too small to be detected by a scan. He left three of them. After that mum started Kadcyla. She had three infusions and next week she is going to have the fourth. By the end of August she is going to have a MRI in order to see if the therapy is working.
Anyway it happens sometimes that she feels some slight stitches where the liver is. It doesn't happen often and it isn't painful, but I'm worried. The doctors seem to be confident about the therapy, but I'm afraid that it isn't doing its job, since her last biopsy was her2 equivocal and Kadcyla is for her2+.
Have you ever experienced anything like that? May it be just a consequence of the surgery?
Prayers to you all.
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WorriedDaughter, I felt twinges in my liver during taxol, while the PET-CTs and TMs showed steady improvement. I think it was my liver shrinking back to a more normal size. Even now I feel occasional sensations, but I think it must be the healing and clean-up of dead tumors, because the scans still show NEAD and the TMs are normal. I hope this helps you feel better. If there is biopsy tissue left, can they do a more sensitive Her2 test like FISH or CISH?
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I'm sorry, I didn't explain very well the biopsy part. She had a first biopsy, when we discovered the met and it's result was er+ pr+ her2+. After te surgery they did a biopsy of the mets and the result was er+ pr+ and her2 (FISH) was very borderline, equivocal according to ASCO guidelines.
I have read that Tdm1 could give a good result even in these situations, but still... I can't stop thinking that maybe the Herc/Perj/Tax combo didn't work at its best because she's no longer her2+. As far as I remember, she never felt anything like that during the previous treatment. Her TM are not very reliable, during this whole time the only "wrong" value was her d-dimer, but after four months it finally seems to be fine.
I pray God that those stitches are shrinking as you said. Thank you very much for sharing your experience.
Prayers to you all.
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I know I've been AWOL for a while. Mostly it's because the new chemo (Doxil) is leaving me both physically and mentally exhausted. I'm learning to adjust to it slowly.
So I had that strange situation of TMs going down, pain resolved, and scan showing progression. I went in to speak to the onc after the initial phone call. He had more info then. TMS: blood test 2 days after the scan showed they were already going up. So if we'd had that info sooner we wouldn't have been so surprised. Pain: scans showed bones are more sclerotic (medspeak for "harder") so pain is resolving (Go Zometa!) Onc said scan also showed some of the liver lesions were partially necrotic, which he said means the Navelbine worked for a while then stopped. I hope I get more time on the Doxil. At least it's once a month instead of once a week.
Leah
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