How are people with liver mets doing?
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Nicole, is it a port or possibly a PICC line. I had a PICC line in my arm when I was treated for early stage cancer. The line comes out the arm to allow easy access but the long tube actually goes all the way up to the arteries (close to the heart) to ensure there is a larger blood volume to help dissipate the chemotherapy drugs. I had mine placed as I quickly developed issues with my veins due to the corrosive impacts of chemo on the smaller vessels. Ouch!
PICC lines are great but I think they are more prone to issues like infection, etc. It seems most go for a port with MBC. I am not there yet but will be looking into it as my veins are starting to complain about all the pokes!
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SS- the "R" word is a beautiful word. Celebrate it.
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mermaid- welcome to the fold as you say 😉 this is a fast moving thread so please post often if you want to share or ask questions. Hoping for good results on your treatment.
S3K3 & BevGen hoping for good results for you also.Grannax- the stress of getting your car fixed is awful. glad you got a loner.
sadiesservant- happy dance!!💃🏻
Nicole- my problem is they can't use my left chest or arm because of a subclavian DVT from my first port, they can't use my right arm because of Lymphadema. I did ok with the right chest until the infection. They can try the right chest again. Staying on elequis to keep the veins open until I need another port (hopefully a long time from now)
I just found out it was a staphylococcus epidermidis infection so now I'm waiting fo my MO to call and see if I need a consult with infectious disease doc
Dee
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bluegirlredstate, abraxane and eribulin are both IV chemo. One thing I'd point out is that different chemo drugs have differing mechanisms of action - they all interrupt the cell division cycle but they do it by targeting different stages of the cycle. So just because one chemo or even several didn't hold your cancer back, doesn't mean a different chemo won't. Hth
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Dee, I had vein thrombosis in my internal jugular from port in 2006. This time they placed it on the same side in external jugular...
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Eribulin is chemo and it is especially good on liver mets and targets PDL1....all my tumors shrunk on it and I had the least side effects on it than I have had on any drug. its 2 weeks on 1 off... I am very very surprised that you oncologist did not mention it... Keytruda specifically targets PDL1 (if you look it up) BUT should be combined with a chemo like Abraxane in order to reap the benefits...so I am surprised she hasn't mentioned that either (unless you told her up front you don't want an IV. chemo)??? Have you don't IV chemo doxil or Xeloda pills? Both failed me but some with TNBC do well on Xeloda...
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My liver bx path results came back. Not much has changed since last year: ER+ 95%, PR - 10%, Her2- (IHC 1+).
What surprised me was that Androgen receptot was 0%. I had been looking at Androgen trials. Now just waiting for F1.
Dee..you didn't get much of break, but glad you returned to tell us the latest port issue. It is fixable...right? It is just one more thing you didn't need.
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Question for this very informed group--When diag w/MBC, I had "malignant pleural effusion, bone involvement as well as liver and lung involvement". Lungs & bones reacted quickly to tx, but liver is troublesome. Existing lesions shrunk on Kisqali, but after 18 months, new ones appeared, which prompted the switch to Afinitor. I had a liquid biopsy that showed I do not have PIK3 mutation. I know nothing about the tumor characteristics that I read about here. MO has not mentioned rads or biopsy. I'm having scans next week to see if Afinitor is doing enough good to try to deal with the side effects (constant diarrhea, weight loss and some nausea). MO has said she might put me back on Madam X with lower dose (last time it took 6 weeks to clear up HFS from 12 days of X). How did you gain all your details about liver tumors? Are needle biopsies used or just extraction? When did RO come into play?
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Nopink, I don't know if you tried a high dose of Xeloda or not. If it was a reasonable dose but you got terrible side effects after a few days, you might ask your doc if you should have the genetic test to see if you have a "germline genetic variation in the DPYD gene. This is a genetic predisposition with an established mechanistic basis that links genetic variation in the DPYD gene to an increase in systemic drug exposure, resulting in an increased risk of toxicity" with Xeloda. This would help your onc to know what kind of dose to use for a re-try. Here is an article to show the onc.
https://ascopubs.org/doi/abs/10.1200/OP.20.00553
Sometimes a liquid biopsy does not yield as much info as a tissue biopsy because there has to be a large enough amount of tumor DNA in the blood. Did your test show various mutations and not PI3K, or did it come up with a lot of "not detected"?
If you are on treatment that is controlling everything but the liver, you might want to consult with an interventional radiologist about local treatment to the liver. Many here have found that even though the medical oncologist said it would do no good, the IR actually said they could help.
The neratinib I take has caused diarrhea that has been challenging. I learned there are some standard meds to try, including loperamide/Immodium, colestipol, lomotil, and budesonide. Something to ask about.
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Nicole,
A lot of new drugs are first released for TNBC since they have fewer options. So far, it looks like it works well for ER+/HER2 disease. I was able to receive it on trial and it worked for me for a little over a year. Since it is FDA approved for TNBC now, you should be able to get it off label. You could also get on Enhertu if you are HER2 low (+1 or +2).
Hugs, Susan
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SadieServant,
I'm SO happy for you and feeling more optimistic because of your news. Thanks for sharing!
Hugs, Susan
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Sandi, wouldn't that Her2 +1 on IHC qualify you to try Enhertu for Her2 low?
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Hi SP, I spoke with my MO about Enhurtu. She said she hasn't seen the data for positive responses for IHC 1+. i will be researching that anyway.
I am still puzzled with my AR neg result with my ER+ 95%.
My cancer hates me.
Tomorrow Taxol first time.
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Oh, I can see why your onc is not jumping on Enhertu for you, then. Let taxol do the job now, and in the future maybe we will have more info about Enhertu in situations like yours. Taxol is a standard treatment because we have the evidence for it. Go, taxol, go! I'll be thinking of you tomorrow. Enjoy your Benadryl nap.
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SB, My cancer has an SF3B1 mutation, and I read that cells with this mutation do not make a protein cofactor that is known to be required for androgen signaling, so are likely deficient in AR signaling. Indeed this may be one way that it promotes breast cancer, ie get rid of AR signaling and that up-regulates ER activity. Therefore I most likely would not respond to Enobosarm, even if my cancer tested positive for AR, because it lacks this other part of the pathway. As with ER, just having expression of the protein does not mean its functional, or driving the cancer- still I'm also bummed not to have that drug on my list
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Hi Susan...im sorry I don't understand your post? Did I ask about a drug? I know I mentioned Keytruda but I didn't ask a question about it? Let me know
Anyone heard from Bliss or JFL??? I PM'd JFL about a week or 2 ago ...I haven't heard anything
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Sandi, thinking of you today and hope all goes well. You will be able to do all your chores tomorrow with steroid energy. Be ready for two restless nights. Have confidence that Taxol will work for you. Many on this board are pulling for you. I know we all have different quirks to our cancer and there are no guarantees, but hey. Pandora left Hope in the box of evils
I will chalk up 8 mos with good liver, kidney, and tumor marker blood work. Of course immune system is shot, ebb and flow. Good May scans. I'll find out where I stand in August and my head knows this ride won't last forever. Trying to live in the present but planning for the future.
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Sandi hope all went well with Taxol! Keep us posted.!!
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Hi everyone. H&G here. I will try to keep this short. Have been off line to clear my head and try to get out of this funk. No answers yet. Hopefully some answers after my July 9 ABD MRI - first one after after my Y90 in April. Looks like Nicole you aren't the only one with complications from Y90. All we know is that 2 days after mapping I had to go to ER for what they called "gastritis". PAINFUL, but recovered on meds. A week later I had my procedure. No problems for a month until the inflammation really set in and then back to the ER with terrible gastric pain. Horrible ER experience with ER doc trying to diagnose me and basically telling me I was progressing rapidly (new tumor, ascites, inflammation) and that's why I was feeling awful. She didn't understand the Y90 or anything going on with my treatments. Anyway I discharged myself and got in touch with my MO, who calmed everything down to a level I could deal with. She is so awesome. Then on to pain medications to reduce the pain before anything else. Off those but now still with bloating and no sense of wanting food. 2x/day protonix. Lost a bit of weight although I am forcing myself to eat to not lose more. I am praying after all this the Y90 worked and will hear those words at a consult on Jul 12. Also have to consult about new liver tumorthat popped up in left lobe (Y90 was in part of right lobe, Segment 5 and 8) that measured 2.8 cm a month ago and I can only imagine how big it is now. In spite of all this, I am hoping for Y90 on left lobe and lot fewer complications. Praising the Lord that no other tumors in bone or lung or elsewhere, so we will go with local treatments as much as possible while I stay on verzenio awhile longer. Just hard to feel tired and awful every day. I think I am finally starting to feel "better", but also feel the depression of this disease kicking in. Have been talking to a counselor. Anyway, that's where I have been. Will probably still lie a little low for now. I pray for you all every day and love to hear when there are some "wins" on our side. Stay strong. Keep fighting. Keep living.
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H&G you have been through the ringer. Hugs and prayers. Thanks for the update
Dee
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Hope so sorry for what you are going through...yes I know a bit about it..and I am glad you are already feeling a bit better it took me off all meds for 4 months to even feel a "bit" better so glad that is NOT your experience. The pain in my stomach was SOOOO bad I was on the floor begging the Father to take me.... so yea...pretty bad. I also would do Y90 again..and I do believe I have a new tumor right now...bc I have pain in a new area... Yes also my MRI's and PETs now they say I have HUGE tumors...alive..meanwhile once I drove to DC to give the copies of the discs to my IR..she laughed and said NO!!! All you tumors are dead...just bring me the disc each time you scan. So the RO's that read after Y90 they just don't know....
Hope you continue to heal and get some good news.
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thank you Nicole for your understanding. I did pray also for our Father to take me and relieve the pain and misery. I actually truly hoped for it. Maybe tomorrow is a new day
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Hope, what a terrible experience. That ER doc's shenanigans makes me mad. They need to have some humility and be willing to listen and learn from the patient. Did you leave the ER "against medical advice"? Thank goodness your MO was available to help you. Yeah, the depression kicks in when you have been knocked down so much. Try to remember that people can and do come out the other side and feel good again.
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Shetland - no, when they didn’t wanna listen to me they pretty much wanted me gone. They actually said I am free to go without discharge papers and if I want discharge papers I would need to wait an hour longer. So I signed myself out and off I went. But I did talk to my ammo while I was in the emergency room so I was in much better shape before I left. I am hoping as you say that there is a way to come out the other side. Right now it doesn’t feel that way. But each day is a new day
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Nicole and Moth – thank you for your replies on abraxane and eribulin. My Ocncolgist did mention chemo, but we did not have a discussion because of my rejection of the idea, assuming it would be the same chemo I did in 2016, which did not do much. She might also want to see if the Exemestane/Afinitor works. So I will ask. Is it 2 weeks on, 1 week off indefinitely or for a set time period? So far I only seem to be ER+ (80+%), PDL-1 10%, AR. Nothing showed up in organs, yet, seems to be spreading through skin/lymph. One episode of pleural effusion in March, cancer in fluid pulled out.
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I can’t seem to shake the anxiety from my mri report mentioning the pseudocirrhosis. Everything I read on it is terrible but also a “rare complication”. My MO didn’t mention it at all but at the same time , she was reading the report in real time and had only gotten it as my appointment started so I don’t know how much she took in. I’m trying not to worry about things that my doctors don’t think important to mention but I’ve had such bad luck with doctors and having to advocate for myself that I lack trust at times.
I think it’s so crazy that in this world of cancer , you take treatments that you know have SEs and consequences, but It feels so incredibly unfair to hear the tumours are shrinking but as a result , the liver is scarring . My portal vein has shrunk but it’s unobstructed which I know is a good thing. But what about the next treatment? Or the next ? What will happen to the scarring then? Will Mets take me or the damage from treatment ?Sorry guys .. I’m having one of those moments where I’m just so angry at all of this cancer bulls**t
If anyone has experience with this I’d love to hear it. I know Husband has said his wife has this , but I haven’t heard of anyone else.
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I know it’s not my liver but I have my brain scan tomorrow am. First one since I had radiation in March. My tumor markers are up. So if my brain is ok, my ZpEY scan will get moved up. So I’m very anxious. Good news for my brain most likely means bad news in my liver. I hate this.
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LFF- prayers and hugs as you wait on results
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BAP - Was your metastasis diffuse? How is your liver function? What to the various liver markers show? I would look more to function than the appearance.
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husband ,
They were diffuse. The Abraxane worked well and now I have about 5 nodules left from 3-6 mm in size and possibly a 1.5 cm (shown by ct) that was previously4 cm (but this one is hard to perceive. The mri said it was 6mm not 1.5 cm)
Anyway i don't have all my current labs. But the last ones I have for May are :
AST -51 (range 5-37)
ALT- 66 (range 6-55)
ALP -73 (range 43-161)
Bilirubin - 8 (range 3.4- 20.5)
So the AST and ALT are higher than normal and they had increased slightly since the winter. I imagine the numbers might be expected but I don't know how these numbers translate into good or bad . I know the report for the mri mentions the portal vein has decreased size but is unobstructed .
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