How are people with liver mets doing?
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Nicole- I am just finishing up with Taxol, and will be moving on to Erubulin. I found Taxol tolerable. I did get neuropathy in my feet, mostly toes. Numb and tingling, but tolerable. I did lose my appetite for a few days after each infusion and had "chemo mouth", where things tasted chalky and off.
Before Taxol, I was on Doxil. SE for me with it was skin issues. Rashes, one was quite severe, but a dose reduction cleared that up.
These are definitely a step up from Xeloda, but still doable. They are both given IV. I actually got a port placed before I started Doxil. Doxil is given once a month, and taxol is given three weeks on and one week off.
Hope this helps. Best, Mary Jane
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Mary jane..thank you sorry i should have mentioned that I knew about them being IV chemo and that taxol is every week for 3 weeks on and Doxil is once a month. What is your opinion about starting with Doxil over the Taxol or Taxol to hit it hard then Doxil?
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I had weekly taxol for over a year no time off. It’s a lower dose and supposedly SE are less. I chose this as I was working and have 4 kids to keep up with.
So there is more than one schedule/dose treatment plan for taxol.
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Leftfoot...why did you stop it?
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NicoleRod- brain Mets needed attention and it doesn’t go across blood brain barrier. Got into a clinical trial for Ned tgat can help with brain Mets. I was stable to From neck down so could make the change
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NIcole, I have been so consumed with my trial and tribulation (pun intended) that I have not been able to respond much. Now I will say that I bet the cryoablated lesions are indeed much better. As for weekly Taxol or Abraxane (both paclitaxel) vs. Doxil, I have had both and did not really mind either. Taxol has premeds which can be a pain (Benadryl and dexamethasone) but I carried on with life as normal because there was a pattern. Day 2 steroid high, get lots done. Day 3 and 4 take it easy, watch a movie. Day 5 and 6 pretty normal, teach my dance classes etc. Repeat. I was not on Doxil long, but it seemed fine. My onc likes the hit it hard and then coast for a while approach. It has been 5 1/2 years so I would say it has worked for me.
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husband11 - thanks for sharing about the successful ascites treatment and that it was two years ago. that gives me hope
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I miss Z too. Actually, I still am in denial that she's gone. There's such a void now, she was my hero. I wish i knew what what happened. If anyone knows would you please share with me? Maybe I would be better able to accept her death. 💞
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Hi, I'm new here.
I found out I had lung mets on Feb 10. On the 19th, got results from further scans showing liver mets as well. My liver values are just marginally off right now so the MO was pleased about that; however, my hemoglobin is low and I'm really feeling the resulting fatigue. I need to look at the lab results more but I think it might be a liver prob and not an iron intake issue so not sure what we can do about that.
My MO is trying to line everything up to get me into a clinical trial which is supposed to open March 11, using immunotherapy (atezolizumab) + abraxane + something else which I've forgotten/placebo. It's weird just waiting around and hoping the trial opens quickly and I qualify for it but the MO thinks that atezolizumab would be really beneficial for me and the trial would be the easiest way to access it. Apparently it's super expensive otherwise and our healthcare plans (I'm in Canada) don't cover it.
I'm going to read through the older msgs to learn about common issues I should be looking for with liver mets.0 -
Grannax, Z chose the way she wanted to deal with this disease and she chose to forego a lot of the standard treatments that may have given her a bit more time. She wanted quality of life over quantity. Her personal choice was that she didn't want all the harsh treatments and she was okay with that and was aware that it may cut her time shorter than it otherwise would be. I knew Z since she first joined the boards and we followed each other's treatment paths closely for her duration on the boards and shared a lot of information and personal experiences. From the beginning, she was very clear what she did and did not want to do as far as treatment was concerned. Z was not interested in "crossing over" to chemo and the more harsh treatments. From what I recall, she was bone only mets initially and did Ibrance/Letrozole and then after that failed, she went to Japan for a month or two to do NKC (natural killer cell) therapy, along with some other therapies not available in the US. She came home for about 10 months or so before going back to Japan. During that time, I believe the only treatment she was on was Letrozole. She had already failed it and knew it wasn't helping but took it so her US MO would agree to continue to keep Z under her care. She then went back to Japan for more NKC therapy and other treatments. Some time after she returned, she learned that she had extensive liver mets and had had them for a while but the radiologist missed them on a prior scan. Before then, she was only aware she had bone mets. She also developed mild ascites. It appeared that the therapies in Japan never ended up working. Despite originally never wanting to do standard chemo, she eventually did agree to low dose Abraxane, possibly to alleviate the ascites, but from the beginning negotiated with her MO to only do that for a specified period of time and at a very low dose. During this time and throughout her treatments, she also did many complementary and alternative therapies. Near the time she stopped posting on the boards, she was diagnosed with a brain tumor that was benign but possibly related to breast cancer. I was surprised that she passed away 5 or 6 months after she stopped posting as that seemed quite fast. She stopped posting so she could take the time she was spending on the boards to focus on her various complementary/alternative therapies, many of which involved time-consuming physical activities. However, we don't know how much longer she did any standard treatment and I know that when she stopped posting, there may not have been any other standard treatments she wanted to do. I think she viewed Abraxane as her first and only encounter with chemo and I was surprised she even agreed to that, knowing Z. So, it may be that she stopped standard treatment shortly after she stopped the boards and continued only with the aggressive alternative and complementary therapies she was doing. Sadly, it didn't seem to be enough. My facts above are based on memory and thus may not be 100% precise but overall it may help explain at least to some extent her journey and why we lost her sooner than we all expected.
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Wow, JFL..I am impressed with your incredible recall about Z. For us metsters diagnosed 2015, 2016, 2017, she was a wealth of information and was a great online support friend.
The only thing I would add about Zarovka is that she was diagnosed de nova with mets to her liver Jan 2016. She lived a little over 3 years from diagnosis. She took her research, personalized it and shared what she was doing.. Such a believer in immunotherapy and CAR T therapy. I disagreed with some of her later choices, but it was her life, her disease and her right to try.
During her final months with us, she made it known that her family would be her focus and would post less. She knew..
And I still mourn.
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Hi everyone
at a crossroads and feeling very confused. My last scans show progression in two large liver lesions (now about 22 and 33 mm) but also enlarge lymph notes in my abdomen?
Was first diagnosed ER+ PR-- HER2-, when the liver mets were diagnosed and biopsied they were ER-PR-HER2+. BUT when I was considered for the SYD985 study I was rejected, because I was found to be HER2-. So I am one of those with an intraheterogeneous tumor, with specific cells being different.
Now having failed paxitXEL, nab-pax, vinorelbin, capecetabin , kadcyla and eribulin they want to put me on lapatinib, which seems to be targeted for HER2+. But doesn't this just give the non HER2+ tumor cells a free pass?
Also, should I be worried about the abdomen?
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Nicole, I am sorry that your results don't give you any clear message. So it seems the bone mets responded to something, but the liver mets may be stable, or not. I know my wife has run into the same problem of things showing up on the mri, and not knowing if they are cancer, or simply a regrowth of the liver that forms a feature the mri can show, and also arguments about suspicious tumors that show up, that weren't mentioned previously, but were seen previously, and its unknown what they represent, growth or stability.
Did you get any positive feedback, in terms of a stable or dropping tumor marker? Anything that can give you some confidence during the next 6 weeks that you have to wait before a rescan?
We did note, that in terms of tumor markers, when my wife was on xeloda, and it was working, the tumor markers after 1 or 2 weeks off, were even lower than before the 1 or 2 weeks off started. Its like it takes time for the xeloda to kill a cancer cell, and the cells may continue to die, even in the absence of xeloda.
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Husband, can you expand on your comment about that the MRI can see liver regrowth in a certain feature?
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The liver can regenerate itself, and it can during the process produce nodules that show up on the mri and that cause worry and confusion. It's a response to injury. I believe this is associated with cirrhosis of the liver and Budd-Chiari Syndrome, and other vascular diseases of the liver. The cancer badly damaged my wife's liver, causing hepatic hypertension due to impaired blood flow. It was like the liver was clogged. At first they thought it was cirrhosis, now they call it pseudo-cirrhosis. It produced regenerative nodules as she healed that showed up on the mri and caused us some period of worry. The Onc said that it would take time to determine what they were, and they eventually just blended into the rest of the liver.
Google "liver regenerative nodules MRI" for more information.
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Husband thank you for reading my post and replying. My tumor markers are unchanged from the day of diagnosis...even when Ibrance worked and everything shrunk and then when it failed and everything came back...they remained unchanged so it's not a good indicator for us. I personally don't think 7 week of Xeloda, and actually that is only 3 week on...is enough to then scan but I understand how MO and my husband feel it will not be good to wait much longer than that. My tough decision will be which chemo to choose... Unless of course I can get into the immunotherapy trial for Triple Negative (based on me having the PD1L mutation, which we may try for that)... My husband feels constantly getting a localized procedure is not good...in other words every time a tumor pops up do a local treatment...he agrees with the MO that we need to stop all the cancer for a bit > chemo...
I know this may sound stupid but our son is getting Married in November...I so want to have my hair and look like me and feel like me for that...one of the reasons I would like doxil first....I know that sounds stupid to most...but I know taxane is harder and I just don't want to feel horrible ...and my MO has no intention of just doing that for a short time...she will do it until it doesn't work....which baffled me because she said she is willing to try CDK inhibitors at some time in the future so I don't understand when that would be/?
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JFL and Sandibeach. Thanks for helping me understand more about her mindset and the choices she probably made at the very last. I hope she wasn't in too much pain at the end. I wonder about her husband and kids. She left a memorable example for her family by her ability to think outside the box and to educate herself enough that her docs respected her input.
arolssin Sounds complicated. How long ago were your BX? If it's been awhile you could ask for another one. Genomic testing could give some helpful advice about TX. Unless the enlarged abdominal lymph nodes are BXed or removed, they are just assuming it's part of the progression of your cancer.
Moth. We have mets in the exact same organs. I was DX November 2016. Have you had genomic testing? I wonder why they are looking at a clinical trial after only one TX? There are so many lines of TX to try. Targeted TX, Xeloda and gem carb are a few. All of those have failed for me but that doesn't mean they will for you. My lung mets have not given me much problem so we focused on local TX for liver mets. I've had two sets of y90 procedures. There's another thread that has much more detailed info on local TX for liver.
Let us know how you're doing.💞
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Granna, I think she's really pushing for the immunotherapy because I'm TNBC. Apparently once you start chemo, this immunotherapy doesn't work well. The trial is only for "chemo naive" patients (chemo only allowed for previous early stage treatment) and the manufacturer will also not consider compassionate access if I started any chemo now. It's a now or never from what the MO said & she really wants me on the immunotherapy. I don't know if that's just this specific immunotherapy or what. It's also possible I got it all wrong...
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Moth,
I responded on the other thread where you've been posting. Take a look at Cancer Research Institute for some background info on immunotherapy. I attended a day long program on it, and I think that the chemotherapy issue is true -- your MO is not just pulling your leg on that.
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moth. That makes sense, I didn't even know about that. I guess I mostly hear about clinical trials after failing almost every other TX. I would love to be on an immunotherapy trial but I don't think that's in my future. You go girl and keep us updated.💞
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Grannax,
I think there was a time when people went to clinical trials after trying all "standard" treatment. However, I think that now, many people go to clinical trials to get promising drugs that may work better than some of the standard treatment, especially better than chemo.
Also some of the immunotherapy trials won't let you in if you've had a certain amount of chemo already. So there is a good reason to look at clinical trials sooner rather than later.
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Clinical Trials conversation: I thought, depending on the trial, you have to meet certain criteria i.e. so many lines of therapy or IV chemo. I understand wanting to get in on the latest meds, but if there is proven treatments, i.e. Ibrance and an AI first line for HR+ HER 2 -, then the MO's and the insurance companies would want a person to do standard therapy first. I understand moth doing a trial due to her TNBC diagnosis. Maybe I am wrong. Maybe I need to look at clinical trials closer. We don't have access to clinical trials at my cancer center and I am stable for now, so I have not researched it yet.
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Candy,
Yes, that is correct. I don't think people just jump into a clinical trial. But, for example, when my doc thought Ibrance/faslodex hadn't worked for me in October (thank God I stood my ground) they talked at that time about a clinical trial of an immunotherapy drug as one possibility. They weren't going to jump right into chemo.
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UPDATE....
The MO just called. Since the radiologists did not have an MRI recently to compare they only have the PET so she wanted the IR to have a look and he did.
The IR said the cryoblated area looks good and as it should. He thinks after looking at all scans that the 2 tumors (1 that he didn't cryoblate and now the one right next to it) have grown and he would feel better if I moved on to IV chemo... he said he could do TACE but it can be very painful (as you know BEVJEN).. My MO prefers chemo IV...so my decision now is whether to get the IV Chemo Doxil or Nabpacitaxol.... or to stay on the Xeloda for 7 weeks...even though now I have been off it for 2 weeks...but re started today.
I am just so torn.
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Nicole,
I declined the TACE because the drug they were going to use was adriamycin -- basically they shoot the chemo right into the tumor. My IR said that the whole thing isn't too painful, so it's interesting that your guy said something else. I didn't want adriamycin because that was one of my chemo drugs when I was first treated in 2003/2004, and it was hellish for me. My IR said, though, that it's not the same reaction when you're having it administered through TACE. Long story for why I went with ablation instead. (I would call the IR myself and ask what he means by "painful," if you are at all considering this treatment.)
If it was me, I think I'd be inclined to move onto chemo now and not mess around. You can always go back on xeloda and/or one of the other drugs later. But I think you may want to stop things in their tracks first. However, I'm not you and you need to go with your own instincts. Good luck in making your decision.
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Thank you Bev...actually the IR said it is more painful and harder on the liver than the cryo...my mistake it was my MO that said it was painful...she said that she had a couple of patients that had it done and they said it was very painful something about something get blocked up...sorry I can't remember her exact words.
Thank you for your input....just curious would you do the Doxil or Nabpacitaxol ?
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Nicole,
I don't really know enough about either of the drugs to make a call. I also had a taxane with my original treatment -- I had taxotere. But I know that the dosage isn't the same for stage 4 as it was for my original diagnosis. Have had no experience with doxil at all.
Is your MO at all equivocal about the two drugs -- I mean, is she pushing for the taxane versus the doxil? I'd take her suggestion seriously. I just don't know how you decide this without her putting her thumb on the scale....
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Sorry I wasn't asking you to decide for me...I just wanted everyones opinion what they would do if they were me..ya know? Doesn't mean I will do that...I just want opinions to hear and add to my thinking. Yes...lol of course she knows about both and we have discussed but it's nothing everyone else doesn't know about the chemo pros and cons. I feel like we all on this site know more than our oncologists sometimes..especially because we have time to do more research than they do.
She said she is ok with me starting either she would a little bit more (I think) prefer the Nab...but said starting with doxil is ok with her.
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Nicole- I think the Doxil is a little more gentle. It's once a month and you will keep your hair. it worked for me for several months. I just finished 6 treatments Taxol, which gave me more trouble with appetite and what I call "chemo mouth". I had the choice to start Halaven or look into a trial I have been researching. I decided to go with the chemo because it takes a little effort to apply for a trial and I didn't want to wait on being treated. I plan look into the trial now, and maybe even apply, so I can be ready when Halaven stops working. There is yet to be immunotherapy for hormone positive BC. If I had triple negative, I would definitely try immunotherapy at some point, however.
Best, MJH
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Thank you MJ. My bad for not stating in my post that I know about the side effects of both Doxil and Nab...the doctor and I did go over them.
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