How are people with liver mets doing?
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Bev and Grannax..thank you so much for posts. Bev...interesting...about your friends condition.
Turtle..welcome so sorry you have to be here but I am happy you are here with us!
So I spoke to my MO Friday about IF the Xeloda isn't working and we go to Taxane chemo will we also revisit Letrozole or Ibrance or Faslodex..she said she has been thinking about this same thing but it's so hard to know which one to try because I was on all 3 when I failed....so she is not sure which we would try with the Taxane chemo but we both feel since my tumors haven't really changed that one of those may work again? Right now we are both hoping that the Xeloda is working. My scans are scheduled for Feb 18th...so I will need you all in my pocket please!!!
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crazy scanxity here. Had CT Thursday, brain MRI tomorrow in CA, results, and treatment Tuesday in CA. Home Tuesday night.
Last ct was good so assuming I don’t have to worry about that, but brain MRI has me super stressed. First one since new treatment.
thinking of everyone.0 -
Super scanxiety here too! We have a different system, you do your CT or MRI and it can take 6 weeks to get results, the shortest is about a week if you are really lucky. I took a scan last week and have my next Eribuiln infusion on Friday. If they cancel my chemo I will know something is awry--this happened to me last time, they called to cancel my treatment because they said I was changing to another chemo. I said, aha well we all know what that means, tell me about my scan results. No no, the doctor has to tell you directly, you have an appointment in ten days. If I remember correctly I may have actually said I thought it was inhumane to basically let someone know their scans were bad without telling you HOW bad. Their logic is that they don't want to tell you your results until they have figured out the next course of action. WHich is understandable but doesnt make this limbo any easier.
leftfootforward, waiting for brain MRI results are the WORST! I had one this summer (took a month to get the results). Had terrible headaches and stiff neck but luckily it was clear. Hope the same for you.
I have a friend of a friend who has been living with liver and brain mets for 3 years. They go in and zap the brain mets and they come back, but th etreatment seems to keep them in check.
best to all!
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Yikes, a 6 weeks wait?!? Sooo stressful!
Arolsson, where are you located if you don't mind mentioning?
Best, Katty
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Six weeks?!?! They would have to take me to the Looney bin. A week is unnecessary torture. Oh, what we are forced to endure.
LFF Praying for you. Brain mets scare me even more than liver mets. But, I have seen so many ladies live with it here. Good job brain mets sisters.💞
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I had a MRI of my spine last Thursday along with a MRI of my Liver. Still waiting for the reports. Arolsson I can totally relate to the scan anxiety! It's true that we get the reports only after the doctor sees them but if I were you, I'd keep calling the doctor's office for the report. 6 weeks is insane! I would have camped at the clinic till they gave me the report!
My 4 months of CMF chemo regimen did its job of keeping the disease stable in the liver, so my MO has started me on Letrozole for the next 3 months. I am actually relieved that I am getting a break from chemo but also worry if the Letrozole is going to work.
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Hi S3k5 I was on letrozole/femara for a liver met which then had it go into remission 6 months later and it took 14 years to return. I was very ER+ , and one met was a "light" load, and it is what my body needed to combat the cancer. I know we have micrometastases (?) floating around in our body once it has alighted somewhere outside the breast but it is important to keep the body as inhospitable as possible to them (take away the estrogen). The new treatment of ibrance and femara supposedly makes the femara 50% more effective.
If anyone is interested I have an unopened bottle of Ibrance I would like to donate to someone who needs it. PM me if you are interested.
Nina
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Nicolerod - Did MO mention a combo tx? I’m on Xeloda and Taxotere.
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Leee no she didn't....we scan Feb 18th...so if this isn't working we will be going to a taxane chemo next. How many liver mets do you have? Doing oral chemo and IV chemo seems like a lot of chemo?? What dose is your Xeloda per day?
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NinaCA , thanks for your response. It is really inspiring to hear such positive stories. I was on Ibrance+Faslodex some time ago (2015-2016) but the bone mets started progressing, so I had to stop that. Now I am on Femara only.
I will find out if this is the right path to stabilize my liver and bone mets when I have a scan in April.
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Hi again everyone! FYI I live in Stockholm Sweden. There are positives and negatives-the actual standard of care is world class--I am at the Karolinska University Hospital which is one of the best in the world and involved in almost all the important international studies. And I've noticed that the scans go quicker when they think it's medically necessary. And the full range of support systems from free medical and prescriptions, to physical therapy, psychological support etx all free with no insurance hassles makes life a darn bit easier. Plus generous sick leave benefits. My cancer, though getting more aggressive, doesn¨t seem to change much from week to week and it is good that once I get the results they have already reviewed them with their multidisciplinary team so they have a proposal for next steps as soon as I get the news.
Friday is my next eribulin treatment and if it gets cancelled I'll be pretty sure the news is bad ...
Thinking of trying ot push for a full FoundationOne profile and/or Y90 treatments for my liver, though the liver mets seem to just pop back ? Trying to get my head around the fact that "heavily pretreated" means 3-4 lines of chemo and I am on number 7 (not counting the first go-round when I was an early stager. We really are just about of options.
am using breathing and meditating apps nonstop in combination with cleaning the house, going to the gym and planning house renovations. The alternative would be a large bottle of whisky which my poor liver would surely not appreciate. So it's kale/turmeric/black pepper //linseed oilblueberry and ginger shakes again!
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Nichol Rod - Xeloda is 2600 total. Taxotere is low dose once a week with the same 2/1 week schedule.
Mets progressed to both lobes while on Afinitor and Aromasin in 3 mo.
Do you have any nausea or find it hard to drink enough water on the X?0 -
Lee go over to the Xeloda thread I will reply to you there so we don't hijack the Liver thread about Xeloda
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Arroison- are you getting treatment for your HER2+ disease? Lots of new recommendations coming out for that. I can't tell from your profile below.
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update from CA- I git my scab results today. cT of neck down all clear. Woo hoo.
Brain MRI- no new Mets!!! And to top it off several of the ones previously seen have shrunk some by 50%. My team even seemed really surprised snd happy with these results.
I also learned I am the only person they have at this site on this drug combination. There are about 10-15 others across the country. So I’m blazing a new trail.
It was a good day.
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Dear LFF, such great news! Stupid question: you're on Nerlynx and... what else? Sorry to ask, I read all of your messages but did not find the combination. Hope to be celebrating your NED soon. Best wishes, Saulius
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sorry if I didn’t mention it previously, I’m in a clinical study so they paired it with TDM1 or Kadcyla. Trying to see how they work together. They already studied it with xeloda and by itself.
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LFF. I want what you're having!!!! NED in bones and brain mets getting smaller. Yipee. Happy Dance for you. If I ever get brain mets you will be my role model. Did they scan your liver?
Arolsson. Sweden, interesting to read about other countries and how their medical care works. They sound very efficient. But, it doesn't sound like the patient has much input into what they decide to do for you. I like that the team reviews your scans and what treatment you should receive before you get the results, that's why it takes six weeks, correct? If they decide you do not need a y90 yet, is there an appeal process? You plan to push for Foundation One testing and y90 consult, how do you do that? Verbally with your MO or a written appeal?
Seven TX, that's a lot, I agree but depending on genomic testing and local TX there should be more options for you to help you live longer. Since your care is "state of the art" it seems like they would have already done genomic testing.
My y90s , in2017, killed all the tumors that could be seen. Then, 18 months later, New small ones, ones that could not be seen on MRI, started growing. After we tried three more TX, all failed, the New ones had gotten much bigger and MORE new small ones ( the size of BBs) could be seen. My IR was able to get the yttrium into each one, large and small. My right lobe was overwhelmed by so many tumors that it was enlarged, hard and painful. But, it was still functioning without elevating my numbers. How long will it take for the new ones to pop up? We don't know for sure. But I'm hoping for at least a year. I'll be thinking about you on Friday. Please let us know, I'm very interested.
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LFF, celebrating your good news! On top of good scans, I hope the treatment is kind enough to give you good QOL.
Arolsson, praying that the news is good and you'll continue with the Halaven as anticipated.
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Hi Fellow warriors! Question - I keep an eye on clinical trials, right now holding on Halaven. I know I am PD-1 negative but had not heard this meant I am not eligible for immunotherapy and didn't notice it among the trial exclusion criteria. So this is standard criterion for immunotherapy? Just looking for more info....thanks
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DIaneEliz,
I have been reading a lot about immunotherapy. I am clearly no expert, but I'm not sure that that's an automatic exclusion. I think that the immunotherapy that they have tested with breast cancer generally seems to work with those who are positive (correct term?) for PD-1 and/or PDL-1. It is also believed that immunotherapy works well for those who have a lot of mutations. That part can be determined through things like Foundation One testing.
Additionally, I think that the criteria are also different for CAR-T therapy.
Right now, I believe (though am not positive) that the only immunotherapy approved by the FDA for breast cancer is atezolimumab for Trip-negative breast cancers. That drug is, however, in trials for hormone positive cancers.
Perhaps someone who has more of a scientific background than I will weigh in here to tell us more about immunotherapy.
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Thanks BevJen, that is really helpful :-) Wading through all this scientific stuff is hard!
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There is a group known as Cancer Research Institute that has a pretty good website talking about immunotherapy. They also pair with an organization that will actually do clinical trial searches for you if you provide them with parameters for the search -- stuff like kind of trial, location, type of cancer, etc. It's a free search.
And yes, wading through scientific stuff is hard.
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Hi everyone can anyone help with the sympthoms of liver Mets?
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None for me, found on CT scan & mri.
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I had no symptoms and perfect blood work when my liver tumors were discovered after my routine CT scan in Spring of 2017.
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no symptoms for me either. Found on a lark. Got lucky
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I had no symptoms at DX but since then I have. When it happens, it's in the right lower rib area. Or sometimes is referred pain to my right shoulder blade area and joint. When this happens it is a sharp pain. It also is painful to take a deep breath.
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Thanks BevJen, that is a great site and tip. I am going to do a search through them. Feeling a little better about it now :-)
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NicoleRod: I get my next scan on Feb 18th as well. Let's hope we can both share excellent news.
Arolsson: perhaps you might be able to have "a wee dram of the creature" ....just a little bit of whiskey?
Best wishes to all you wonderful ladies!
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