How are people with liver mets doing?
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My last appt with my Onc I asked about Y90 and other local treatment. I have 5 or 6 lesions. At first she said no, then reconsidered and said maybe I SHOULD consult with a specialist. I was glad that she at least showed some open mindedness about this now. Maybe we are just now on the cusp of finding out that it can be beneficial eve to people with multiple mets.
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Z. I do love my MO. I still wish my MO believed in drug sensitivity testing.
Bab
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So much to think about. Dani's MO also refused to even let her have a biopsy when the liver mets appeared, they were only 2 at the very start, Babs i share your frustration. NO she wanted only systemically. So we did. I am not blaming her for it, just wish maybe that she could have had ablation..but with these beasts being so aggressive, who knows where the tiny ones were before and it would not help the ablation at all.
Maria,you are right in being concerned with the numbers, D's MO also does not get excited when the ALK goes up which it has been, the ALT/ASP, i do, she seems to have more patience for it. Also there is the Lactate Dehydrogenase that they take in her blood work, LDH supposedly is one more way to see if damaged is being done to the cells, if it's high it shows there is damage if it goes lower it could show treatment is working. From a lot of reading, the way I see the PET could get info at the cellular level, when a lesion is really small, a CT alone cannot catch this. If it's at all possible for you to get this in the States, then it might make you more comfortable, but as you know it's not a one time thing. You would wanna have follow ups. I do know people that come to the States for other treatments due to lack of availability of options and waiting time in Canada. Hope you figure out soon what you have to do.
Letmywifelive you are facing the same questions we were just 2 weeks ago, it really at me up. We did decide for the trial, but we did not have good choices. I scamed over the info you sent, it could be a good possibility, you have good doctors, what do they advise you. One thing that Onco said, and many wonderful ladies here, is that you have to be healthy to be sick for a trial. They said if D waits and things get worse, the researchers might not accept her to a certain trial. There was one in Baltimore with the NIH but they would not take her due to brain mets, and the one she is on now, is Phas1 part B, so they accepted her still, but they said they don't know what will be when they move forward. So seriously, i always hated to gamble, I don't even buy a lottery ticket, and here we are faced with gambling with this precious life. What about a biopsy to see if something changed would that be an option? Wish you the best. ANd yes, maybe there is something good with Xeloda, but how can you make this decision?
Still waiting on liver biopsy results. Waiting is the new key word.
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Shetland,
I hope you are well
Can you explain your liver pain and has it subsided?
How are you going in general and are you on any other meds?
Thanks in advance x
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Shetland,
I hope you are well
Can you explain your liver pain and has it subsided?
How are you going in general and are you on any other meds?
Thanks in advance x
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Hi everyone, I had been taking Ibrance/Letrozole for the past almost four months. My first scan is only due mid July so apart from feeling fine (I felt quite sick when diagnosed in January with diffuse liver mets), and starting running again, etc etc, I don't yet have any concrete way of knowing that the meds are working. My MO does not rely on tumor markers and reassures me that judging by the way I feel the scans should be good. However, I do feel little "pinches" in my left and right side every now and then. My questions: has anyone had these sensations and did it turn out to be progression or could it still be "tumor flare". Grateful for any input. Lucia
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This long game of treatment and waiting and watching is so hard. I have the same feelings as you, though I'm a scan ahead. I have been having discomfort in my right side, in the same spot that was extremely painful when I was first diagnosed. It was horrible not knowing if this was the cancer growing. My scan however, showed the spots shrinking and showing necrosis. So I am reassured - though back on this not knowing schedule - gunna have to get used to this uncertainty. My tumor markers have never been an indication of trouble for me. My MO watches my liver tests which flared last October but are back on track. My side pain/discomfort is a little less now but still there if ever I think about it or when I take a big breath. I compare it to my feelings when I was pregnant - despite having tests etc you could never really tell what was going on inside. Sometimes I wish I was transparent (sounds yuk but i suppose if we evolved this way it would be all we knew! lol)
Wishing you the best of results. I have heard that it can take a while for this drug to take effect so hang on in there and try to stay confident.
Sarah
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I have heard that indeed there can be pain as the tumors/lesions die. Let's hope that's all it is 😀.
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I have a question. Is anyone on this site from Paris? My dd most likely will be giving birth via c section there on 12/18 and ideally she'd like me to stay for a month. I would need to line up an oncologist and a place for my Halaven infusion so any help would be appreciated. I know I have time but my DD is such a worrier. I want this lined up so she can concentrate on herself
Thanks all
Babs
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Babs, have you checked with your onco clinic's office? Also check with your insurance carrier...they may know of something. (Plus, it's got to be a place they will cover expense-wise.)
Other options may be to contact the American Cancer Society and see who they can suggest. You don't want to go to some schlocky place.
I'm sure someone else will chime in, too.
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Thanks Sarah and Lita for the encouragement :-)) , I will report back in a month's time. My MO said bar 'quite significant' progression he'll keep me on Ibrance 'as it's the best we've got now.' Mixed feelings about this comment.
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Lita. I have a call into my MO for a referral. Never thought about the insurance part. Ugh!!!!!
Bab
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Babs, you might want to look into travel insurance. It's expensive but since this all of this happened to me, my husband buys it when we travel. I'm not sure if it would cove you, but it might be worth a try.
Anita
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Babs, I just asked my husband, who is a doctor. He said to call your insurance company first. If that doesn't work he can find the insurance we buy and I can give you the number and talk to them and see what they offer out of the country. He bought one that was recommended to him. Let me know and I'll have him dig through his ppwork.
Anita
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Anita. Thanks so much. I'll call them later today to see what they say. This can be more complicated than I thought!!!
Bab
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Good luck Babs!
Finally some good news for me. My labs of this week show that TMs are stalled in their tracks! They had been steadily creeping up since end of 2016. Liver enzymes going down as well.
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Babs will definitely ask around. All the details, wow. I thought they would be moving to NYC? Wasn't it the plan?
LindaE I am so happy for you.
After reading and re reading posts mostly in these threads, I started thinking how i need to get answers re:biopsy and not wait.
THIS PART IS REPOSTED FROM BONE THREAD -
Actually, my mind has been on overdrive. I checked in last week to see if they got any info on the liver biopsy, so far it seems that she is still triple HER2, but all info is not in yet. Then I asked about Foundation One, and they tell me that it was not ordered, but another type of mutations test, but that one takes months to get answer, AND it's pretty much for research, I am like hmm that's not what Onco told me.So waited till Monday, then sent back and forth a very political correct email to Onco, about our understanding that she gets her mutations checked, and I told her that in Dani's case waiting months, is really ages, time that she ain't got, like should we not take the opportunity to send tissue now that she went through this ordeal. So another day goes by, and finally today, she said, yes, we'll authorize that. So now 2 weeks later we begin again. Ughhhhhhhh. Every little detail, then there is another mutation PDL1 that has to be sent separately and wasn't, so I gotta beg for it, and see if tom they will do it. Then took the scans done by trial doc to her RO to recheck Brain MRI because it showed a larger edema, and I would trust more her RO than the ppl doing the study. SO yeah, I feel blessed that things are or will come together, but it's insane the energy spent on checking these people's work. And that's good people, in the big city, how does a/t function anywhere else?? How do planes don't fall from the sky??? It makes me wonder.
It's always something.
Dani's is resuming her trip as we speak. It was great to be away, they enjoyed every minute away. Away from this madness!! Weather wise also was a great week.
We'll keep you posted. Take good care everyone.
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Linda/ that's great news!!!! Happy dance time!!!
Momall. They don't really have long term plans. They just decided about the birth only now. And trust me, with them it could change!!!!
Keep us posted on Dani please
Babs
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Some interesting news for my wife. The CT scan done at Stanford showed one spot grew from 1.2cm to 1.6cm and one new spot of 1cm. There were some 10 other spots that showed no change. They subsequently ordered a PET to confirm the two suspicious spots. The PET showed uptake on those two spots (not good) but no uptake on the 10 other spots (thats good). The TM (27.29) has ben falling all along. Stanford determined this is a progression and suggested switch from Xeloda to something else.
We went to UCSF for a second opinion. They determined that for the spot that grew larger, there are enough inconsistencies in measurement between the latest CT and PET and the previous CT. For the new spot they said there is no way to tell if that was there earlier. So they determined that this can not be confirmed as a progression and suggested that she continues with Xeloda for now and do a tumor marker test in 4 weeks.
We are in an interesting position right now but inclined to believe UCSF at this point and continue with Xeloda.
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I think I'd go with staying the course with Xeloda, too. I just can't give up on a treatment that may be working until it's really, for sure not working.
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Letmylife....had a similar situation in my last scan. MO decided to stay the course with Xeloda.
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LMWL - That is definitely not convincing progression to me ... but there is some activity in the liver. I still see a strong case for local treatment ... if only so they don't make a mistake and take her off Xeloda because of unreliable scans.
MomATT - nice work as usual. We curse the universe its broken medical system ... and then double down and deal with it. It's what mom's do for their kids because that is what it takes.
>Z<
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Sorry for my ignorance, but why can't LMWL do a biopsy to confirm the characteristics of enlarged spots? It sounds like local treatment would be a good choice. In addition, what's the downside of switchingto another chemo drug that takes care of all spots?...just thinking out loud and trying to learn.
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Ok, Babs, it sounds like they are on it. Thanks for reassuring me that you are in good hands. I'm glad they did the assay. Here's hoping Halaven is a super drug for you! Linda, congratulations on TMs and liver enzymes! LMWL, just based on what you said above, I would be inclined to go with the UCSF recommendation, assuming they believe your wife is not on the edge of danger and the cancer does not seem to be moving fast. Scwilly, transparent is a great idea. Momall, totally agree -- I'm not a gambler, either. But here we are. Also agree that it is insane how you have to watch everything to make sure it gets done properly and promptly. I have been thinking of asking someone to take on the job in the event I am not well enough to do so for myself.
To answer your question, Emily-Louise, the presumed flare pain that gave me and my nurse practitioner a clue that my new treatment was working, started after two doses of Xeloda and lasted for four days. It was a big ache under my ribs, and at its height I actually felt the pain even more when taking a breath. In spite of it, I did dance performances and forgot about it or ignored for the most part. I am only on Xeloda. Are you feeling liver pain, Emily-Louise?
Kidmanliang, I suppose part of the answer is that scans help us see size changes and activity changes in tumors. For some people tumor marker tests are useful, too. We use biopsies for when the cancer seems to be behaving in unexpected ways and we need to see if the ER/PR/Her2 has changed, or to send a sample in for (rather expensive) genomic testing that might point to the right treatment. (Cancer tends to acquire new genetic mutations as time goes by.) Another principle is to not "use up" treatments faster than we need to. Ask away, we all help each other learn here.
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Thanks to all of you for your suggestions. She already did a liver biopsy back in February and does not want to do it again. There can be issues with repeated biopsies. So if all but one / two spots are behaving okay, local treatment can be an option. However, the problem is that her onc at UCSF isn't convinced that this is progression. She is suggesting tracking it for now by measuring her TM after two weeks.
Lita - What were the inconsistencies about your scan ? Can you share some details ?
Z - Neither her MO at Stanford nor the one at UCSF were too enthusiastic about local treatment but as you said before, its better to talk to a radiation oncologist separately. We are arranging just that.
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LMWL - MO's, bless their highly trained hearts, are not experts in local treatment of the liver and as far as I can tell never recommend it. Yet many people get essentially the effect of one solid line of treatment out of the procedure. Looking forward to finding out what you hear.
Hugs and prayers coming your way. Ambiguous diagnostics and conflicting opinions is really the worst.
>Z<
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Drum roll...My report...Xeloda is working!!! After the first cycle, my CA 27.29 went down 30 points. This is the first time it has gone down in a year. I expect good things from this drug.
Longer story: My Guardant liquid biopsy -- which does not assay as many genes as a conventional tissue biopsy -- only showed one mutation. It is in ERBB2 (Her2), but it is unclear whether it is actionable as it is not one of the typical activating mutations that can show up even in Her2 negative tumors. So my onc is going to check in with a colleague who does research on this topic. I gave her a paper from a medical journal in which they talk about the specific variant that was found. We will see if neratinib would be expected to be useful or not. I got pretty tweaked when Guardant did not show the CDH1 mutation that F1 found, as that is the definition of ILC. I was even wondering if it was actually undiscovered ovarian cancer with mets instead of breast cancer mets. But I called Guardant and the tech/scientist explained that the test looks at some CDH1 mutations but not the particular exon mine was on. Ok, that explained it. I'll be getting an abdominal CT and a conventional liver biopsy next month and a Foundation One report on it. I am determined to ride on the edge of the wave called personalized medicine, and help it become standard of care for all.
I saw the interventional radiologist again. He, my onc, and I were poised to proceed immediately, in a matter of days, with radioembolization if the tumor marker was not down. I mean literally sitting in the office making plan A and plan B while waiting for the results to be posted. Just as we were leaving the result came in. Down! So the radiologist thinks that since we can only do radio once, we should keep it in reserve since we have Xeloda working right now. He says if I see him every two or three months, we shouldn't miss the window when radio is needed. In my particular situation, with the way this cancer behaves, that is his advice. I wouldn't say that is the right advice for everyone.
I am very happy I can keep my summer plans and not back out of my teaching and performing commitments. That day may come but it's not today.
P.S. My onc actually did recommend local treatment when the time is right, and is happy I am being followed by the radiologist.
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Shetland. So glad Madam X is working for you!!! Great news!!!!!
Bab
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Shetland how nice to hear good news for you. Your decisions make sense re reembolizaiton. I could tell you 3 Oncos did not respect Guardant much, Dani had it done, and even the Onco that ordered it, did not think it was so precise. And in these posts here, whoever knows about it's grandiose, feels that it's circulating so the blood has to have the circulating mutation just at the right time. But F1 is respected, she had it 2 1/2 yrs ago, and hopefully if they finally got it all right (Onco's office) the order went out to send the liver biopsy to F1 and see if a/t new shows up. g
LMWL just form experience, UCSF does make more sense at this time. I usually like aggressive thinking and treatment, but this b..h of a monster, took me down and I am learning to slow down and be more patient. Not much but a bit more. You doing good, hope your wife will feel better soon. It is weird that from 1.2 to 1.6 Stamford should consider as progression and change tx so fast.
Babs i have someone in mind that is from Paris, trying to get in touch with him, will def ask.
Today Onco sent an email after I kinda said that I'd love to hear about the PDL1 reuslts, that they tried ordering the PDL1 mutation check on D's liver biopsy, but dear old Weill Cornell does not want to test it, they say they only do it for lung cancer. She's asking them to send it to an outside lab. I told her they will fall behind times. But truth be said, did anyone ever hear of MBC with PDL1 being treated with Keytruda (for example), that's one of the things Onco had in mind for sometime in the future.
I wonder why the clinical trial does not do any CA27.29 checking, she did not have that done in ages.
Everyone thank you so much for all your support, i push myself a lot, because I think what would this one say what would this other one do? I got you angels with me all of the time.
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Shetland - So glad to hear the cancer is in retreat but really not surprised. Xeloda will give you years but thrilled (for my own reasons) to hear you will be researching personalized medicine strategies in the meantime.
Whenever you find time to write down your thoughts, I will be reading closely.
Side effects under control?
>Z<
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