How are people with liver mets doing?
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Leee
I am so sorry to hear of your progression. I had my first treatment with Taxol yesterday. I am praying for the best. Grannax2, I totally agree with you, this is a nightmare! I guess I am having a bad day too. I feel that I am bracing for side effects.
I am thinking and praying for us all.
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Hi Gracie,
I'm so sorry to hear about your progression. My liver biopsy last year went smoothly. They gave me twilight sleep, not just a local, and got to see my liver in all of its glory on the monitor before I conked out. I had no pain during or afterwards, and they keep you for a few hours to monitor you. Then you might get a snack after all of that fasting.
xoxo Katty
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With every scan, I worry about liver mets. I alternate every 3 months with a liver scan, then the Bone and CT scans.
My widespread liver mets were in both lobes and too numerous to count. Adriamycin and Cytoxan stablized them at 3 months and after taking Ibrance and Letrozole for 9 months, I was NEAD and still holding. It was a slow process. Was it Letrozole or the combo of both..doesn't matter, I guess, as something is keeping the beast quite for now.
Sending positive thoughts to all who are dealing with liver mets and currently finding the right responsive treatment.
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That gives me hope there is something that will help!
I know better than to read into stats or time lines but it’s hard not to after failing chemo
After progression on chemo, I've been in a sad place & scared that nothing will help.
Hopefully, I'll feel better after I meet with onco. The wait is miserable but I also know it gives the doc time to consult and put together the next plan.
Hugs
Lee
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Bornfighter, my onc won’t do immunotherapy until I’ve exhausted the regular treatments, but one of the reasons for the liver biopsy is to send to foundation one for testing.
Lynne, I hope my onc will let me help make the decision. The only reason I can see that he would push for halaven is that it works so fast, xeloda seems to work slower and he’s really concerned with how fast this grew and spread. I’ll take all the prayers I can get! Hugs back!!!
Grannax, you have really been through it! I agree the liver worries me the most too! Maybe because it worries the onc the worst! Am praying for all of us for something to stop this beast in its travks
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Katty, I’m really hoping mine is that simple! Bleeding scares me!!!!
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What’s typically the next line of treatment after Taxol
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Cross posting from Micmels thread:
Baaaad day. Got kicked off Gemzar because doc doesn't think it's working after four cycles. CEA keeps rising. That's my second chemo fail. MRI tomorrow. PET next week. Possible next step...y90. The last chemo I will try is Abraxane...if that doesn't work I'm officially chemo resistant, hormone resistant and near the end of my luck. 8 years ago, I didn't think I would make it 5 years. By 5 years I was confidant that I would make it to 10 years. I think I'll get my wish......just. If you had told me 8 years ago that I would get 10 years from this diagnosis I would have been thrilled. So I guess I'm happy for that. But , day-am, that time went fast.
A Beautiful Sunset
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A Beautiful Sunset, sorry to hear about Gemzar. You have had an amazing stretch - and I hope it is far from over. It seems like all of the stats (most of which cut off at 5 years) make it appear that once someone hits the 5-year mark, it is all happily ever after. They grossly misportray the reality that the struggle continues for the lucky ones who make it that far. Have you had a genetic panel done (Foundation One, Caris, etc.?) If I have asked this before, I apologize. Perhaps you would have some options with some of the new targeted therapies, many of which are still at the trial level. Another thought - is recycling meds a potential option or doing some of the less popular treatments such as pure estrogen therapy to reverse hormone resistant breast cancer (which I read about in Bestbird's book)? I plan on trying that before I throw in the towel. If nothing else, I would enjoy a short ride with an estrogen surge - the feel good hormone. I hope you have the chance to do Y90. I did not have the perfect response I wanted but, nevertheless, feel that I am finally ahead of my liver mets and that it bought me a good chunk of time. Y90 doesn't prevent new tumors or treat tumors that are in hibernation mode when the Y90 is performed. It only treats active tumors that are highjacking the blood supply but does seem to work pretty darn well on the tumors it treats. I truly believe there is a survival benefit. Hoping the pipeline of options opens up for you.
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Sunset, maybe circle back to a Verzenio-Keytruda combination? Or any other immunotherapy combination trial, throw something very different at the cancer that it cannot be resistant to (immune cell destruction)- also might consider Alisertib?, that trial has had many responders among heavily pre-treated patients. Best of luck in whatever comes next!
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thank you, Cure-ious. I recently did a Foundation blood biopsy. Came back with nada. Zero targeted mutations. Zero clinical trials. I like the estrogen, if just for fun before I die. I'll go out happy. Lol.
Doc didn't want to discuss the next steps until he sees MRI and PET. He says there are still options. I am skeptical. Y90 is the treatment of choice...hopefully. Maybe something like Verzenio-Keytruda after that?
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Sunset. Yes, keep saying yes to hope! I saw your post on Micmels thread and responded. But, just as I'm saying keep hoping, I think we all have days when it's not possible to sound hopeful, that's why we have each other. Sometimes we have to put on a front but not here.💞
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Sunset,
There are options! Like JFL and Cure-ious mentioned, recycling is an option. It has been ages since you've been on some of those treatments.
And if your MO doesn't want to play, get a second opinion.
Jennifer
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Ditto on what Jennifer said about finding another opinion if your MO doesn’t want to play (assuming you still want to be in the game). Judy Perkins’ MO thought she was “crazy” for trying the TIL trial that everyone is now saying “cured” her. I believe he thought she should spend whatever little time she had left peacefully in hospice and with family. I always keep that in mind when I receive medical pushback on something I want to do - “Judy’s MO thought she was crazy too”.
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I haven't checked in for awhile, but thought I would chime in with my latest liver progression. Verzenio/Faslodex worked great for nine months, but my scan shows increased size and number of tumors in my liver, so off I go.c
Doc is starting me on Gemzar/Carboplatin. I see that Jennifer is taking that now, is that right? Crossing my fingers that it beats the buggers back again.
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Abeautifulsunset-I am so sorry to hear of your bad news. I hope there is a treatment plan found and you will benefit fully from it. And you’ll not only hit that 10 years but surpass it. Thoughts and prayers for you.
Sandilee-hope your new treatment kicks butt, good luck
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hi sisters! SO I had my MRI today... already got the results! No major detectable change in liver since January scans! WTF? They scared the crap Outta me! Now, I'm still off Gem/Cis and meeting with IR about Y90..and the tumor markers consistently rising are caused by SOMeTHING. Next week is PET and we will see. But I am SO relieved my liver wasn't exploding. Feeling much less doomsday today. Thank you All for your meaningful support.
ABSunset
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WOW beautiful. What a good surprise but it is not over till it's over. You gotta wait for the PET.
I find out my results tomorrow at 8:40AM. UGH. I'm scared but so ready to hear the plan. I love plans, I don't love limbo.💞
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hello Beautifulsunset....congratulations at your improving prospects....
for what it's worth...I'm being treated at MSK in NYC where they conduct blood tests on a monthly basis. Clearly posted on the top of the results is a disclaimer that states that cancer markers are not conclusive proof. mri are reliable, pets not as much...areas can light up due to inflammation and infections unrelated to the disease.
I don't understand the need for a PET when an MRI has been already conducted, since is the most reliable test we can count on....
regardless of their reasons—maybe they need a confirmation—I'm sending you lots of love. May the pet confirm those good results you already got.
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unfortunately, the most recent results of both tests done in December, revealed liver mets growing, lung and chest mets growing. So, I'm actually expecting to see continued growth everywhere, how much and where are the questions. Especially, since my MO agrees there has been no effective TX since Dec. I also have a liver BX from December from New liver mets. It's being tested by Tempest. One month of AA and two weeks of X are not likely to have halted any growth.
The biggest question is what TX to use. She initially said either X or clinical trial.In less than 24 hours I will know the plan, I like plans. 💞
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Sandilee - Yes, I am on Gemzar/Carboplatin. The cycle nadir beats me up, but it sure is working.
Everyone - I actually had my first non-cancer related increase in TMs! I'd heard of such a thing, but hadn't experienced it in 7 years. I had the flu (Type A, no fun), and it caused a 100 point increase for two whole months. In the last month, the TMs went back down, plus some. The myth is real. Well, it was a myth to me, because every time I had a TM increase, the NP would muse that it could be something else, except it never was. Till now.
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Logging in to say hello to fellow metsers. I follow this topic/thread primarily because since my diagnosis in 2016, those diagnosed with liver mets at that same time have scattered onto different treatments.
For those who progress and have been treated with different meds, I follow you and you are never far from my thoughts.
As far as scans, I have a scan every 3 months alternating between liver MRI and bone/CT scan. I have never had a PET scan. My MO says it brings up more questions than answers. But I do understand from others that PET scans can be important in the LCIS setting. My next bone/CT scans are in 2 weeks. My MO follows 4 things:
1. how I feel
2. my monthly labs
3. my CA 15.3 (they work for me at this time)
4. scans (Liver MRI, bone CT)
Grannax2, we started together with Ibrance and I was sad that the AA was horrific on you. I feel positive your new MO will find the right next treatment to kill those cancer cells.
ABeautifulSunset..what an emotional experience you have had. Please keep us posted. You will be here 10 years and beyond. Someone has to set a new standard of lifespan with this disease!
S
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Good morning all,
I appreciate all your experiences so much. I feel like an alien in my neck of the woods, but reading this tread and Micmel's gives me a community of sorts.
thx to SandiBeach-a good reference for me to expect for follow ups.
ABeautifulSunset, excellent news!
Grannax2, finally, I hope the news is as good as Sunset's.
Leee, still thinking of you. Praying, Katty, Gracie, Sandilee, hope today is treating you well too, JFL, Miaomix, Curious, your knowledge is priceless thank you.
Jennifer, I think I'll try to keep track of the CA 15-3 too, I'll not rely too much on it, unless, like you discoverthere's a correlation.
I'm not great at keeping track of names but I do read about you, almost every day
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Liver progression on Taxol so new plan is Carboplatin/Gemcitabine.
Anyone else?!
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Like Jennifer, my tumor markers (CA 15-3 and CA 27-29) as well as my liver enzymes and alkaline phosphatase RELIABLY increase when I am sick and then go back down when I am recovered. It happens at least a few times a year. They can also increase from certain antibiotics or other medications we may take from time to time.
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YES, our community, that's how I feel. Regardless of what TX were on, we are the one who fight liver monsters! We are fierce. I will let you know ASAP when I get my TX plan. Let's keep holding each other up. 💞
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I was doing better with the liver mets while I was on a clinical trial, but because of increased liver levels I had to come off the trial (even though it had killed a lot of the mets. Ribociclib was part of the trial and they think that may have contributed to the higher liver levels. They were much higher than I had ever experienced before. I have had two weeks only of Afinitor and Faslodex and had to stop because of low blood counts. Now just starting back on a lower dosage of Afinitor but my liver levels are creeping up . Having a scan tomorrow and I'm panicked. Meeting with MO later in the day to discuss results and decide if I need to switch treatments again. She's thinking Haloven but that drug scares me. In three years of being treated I have not lost my hair, but I'm pretty sure this new one will do it. Any thoughts, any suggestions I will take. I'm not new to this site, but haven't been involved for a couple years. I'm glad to have found it again!
Mimito3
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Hello my liver mets friends... I haven't seen this board yet, but because today I found out that Taxol is failing me, keeping everything stable all throughout my body, but my liver, I actually searched for a liver mets board and HERE I AM...
So that's where Im at... we can't get the liver under control. I'm triple negative and just found out today that we need to move on... I will be starting Doxil next week and see where that takes us in 3 months.
Like Mimito3, Any thoughts, any suggestions I will take. As far as my hair goes.. it's been gone for 6 months... and I don't think that I'll be seeing it anytime soon. I'm looking to get a full head henna... I'll post pics if I do it... My aviator pic is when I did have hair.
Thanks everyone, Tina
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Amen to that Grannax2!!
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Tina I would love to see the henna head! What a great idea! I might have to copy. My dad will be horrified!
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