How are people with liver mets doing?
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Dear BAP, sorry to answer late - time difference. When you guys sleep, I work and live, when I sleep, you work and live, ehh... I am very sorry for what you go through. "Not fair" are not the words that can describe the whole situation. You are strong and known for coming back out of dark places. Once you will be better on Ibrance, many other options will open up. Definitely your son deserves to have mom and dad on Christmas morning. And he will. Not only this year but the next one too. You are a wonderful mom and should be proud of yourself. One day or day one - we decide. What a wonderful community here. Lot's of hugs to everyone,
Saulius
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Thanks for your kind words everyone. Husband, my spleen was enlarged yep.
Susan, I will def bring up all those options if it came down to it. I’m not one to just sit back and give up. So they’d have to give me good reasons for atleast not trying other alternatives such as xeloda.
Salius your optimism is infectious and I definitely strive to have that same mindset.
There’s a virus my son brought home from school and now my husband has it. Not sure if I need to hold off on the ibrance incase. I’ll have to call my MO and see what she says. Tis the season for illnes
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Warmly,
The Mods
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BAP - just wondering if you and your MO would consider another CDK 4/6 inhibitor that wouldn't hit your blood counts so hard. Thinking of Verzenio/abemiciclib? Maybe there's another contraindication?
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BAP, so sorry you’re having trouble with treatments. I also wondered about Verzenio as I couldn’t tolerate Ibrance. My hemoglobin tanked completely. Sending a virtual hug!
Amazing with Dee. I can’t fathom why anyone would want to compromise an account on BCO…
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SeeQ and Sadie,
I’ve absolutely thought of this. Not sure she has but I will definitely bring it up if it comes down to it. The 75mg on ibrance might be the ticket. I’m really tiny , like 98 lbs tiny since my long hospital stay wasted a lot of muscle. My spleen was enlarged too and I know that can affect the counts. But yeah I wonder if my weight has anything to do with the dose. Maybe I’m reaching too far *shrug*
But hoping that the 75 spares my counts enough so I don’t have to have the alternative conversations with her too soon. I was gonna suggest verzenio or xeloda next. It seems crazy just to give up when other drugs might not hit my counts as hard. Hoping she can keep an open mind.
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BAP, it seems like you have a plan. I can understand where you are coming from as my marrow is clearly going to be an issue going forward. I had good success with Xeloda but my MO wanted me to pause as my RBCs were out of whack on that treatment as well. Now, on Vinorelbine, I can see my RBCs are starting to drop, taking my hemoglobin along for the ride. Bit worried that there will be hesitancy to switch to something else immediately if this treatment is not working… Probably getting ahead of myself but my woosy blood has proven to be pretty annoying!
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Sadiesservant,
I'm amazed that Xeloda worked for you the second time around. Did you stop it early the first time? I was last on Xeloda in 2017 and I was wondering if I could try it again. It worked for me for over two years.
Hugs, Susan
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Hi Susan,
I think I mentioned in an earlier post that it was always tricky to figure out progression with me until it hit my liver. The pleura is hard to measure, bone scans were useless and all my bone lesions are sclerotic. As a result, while at the time my scans said stable, I was having symptoms that made me doubt this so we moved on to Faslodex which gave me a good long run. When the liver mets showed up I suggested we try Xeloda again and, thankfully, it worked
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I have a question...is it normal to switch treatments if only 1 liver lesion is NOT responding but is progressing??? I had my MRI today and like the PET said everything is either stable or has gotten smaller by a tiny tiny bit..except the 1 lesion that was Y90'd in June (my IR said she used a smaller/lower dose bc she didn't want me to have bad side effects) ....so I am wondering if I will have to switch treatments bc of this 1 liver leision bc the MRI showed it grew .....
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Nicole- I had to switch after a single liver tumor showed up and all wise was stable. I had a liver reduction surgery and took it out. Changed to taxol. Was told xeloda had failed me. Taxol worked great until my brain stopped behaving. I had to switch again to control it. I do know people who have made and argument for staying on current treatment if all is good elsewhere.
Good luc
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LFF thanks...what is liver reduction surgery? Like you had that part of your liver cut out where the tumor was? I cannot have any surgery to the liver since I had Y90...I spoke to a surgeon about this a while ago..once you have had any MA or Y90 or localized treatment they said surgery is way to risky....
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Nicole, In clinical trials they standardized this stuff & they use RECIST criteria to determine what counts as stable and what counts as progression. They measure and add up the sizes of the lesions and add it all. So if one is shrinking a lot but another is growing, if you add it up the change might actually be 0 and then it would not count as progression.
BUT, my oncologist also said it's a trickier thing if it's happening in the same organ because it likely means the cancer is heterogenous and if there's no chance of a local therapy then what is the point of waiting? If one lesion has developed resistance and keeps growing, it will hurt the organ and that's bad news. If you switch systemic tx, the hope is that both the resistant lesion & the other lesions will respond to the new treatment...
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My dry mouth, always happens while I am asleep, is eased by OraCoat XyliMelts dry mouth. It was recommended by my dentist You slip it under your gum. It worked better for me than the biotin. I get it on Amazon.
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Thanks for the tip, Moveforward. I have dry mouth all day long. Biotin never helped me either.
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Dear Nicole, congratulations, I think it is a very good scan and sign. "Reduction", "decrease" are magical words. What about that unstable lesion, is it a real or pseudo increase (as it is difficult to understand because of Y90 treatment)? Saulius
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I'm I'm hospital severe pain in brain. Did a CT scan they saw somethjng..looks like a brain met.....waiting for MRi all I know is is its on the right in the Front??? FINDINGS: There is an ill-defined area of hypodensity in the subcortical
white matter of the right frontal lobe, best identified on images
#14-16. It measures approximately 1.8 cm in size. There is no mass
effect.
I'm freaking out
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oh crap, NIcole. Sending you gentle hugs
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Oh Nicole, that is terrible. We are with you. We never get tired of giving out hugs and support here.
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Nicole- When will you talk to a doctor--- your MO--- about what all this means? My thoughts are with you.
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Nicole, what a scary development. But wait for the MRI to get better info. If it is a brain met, there are good treatments. Think of Illimae. I'm sorry this is happening!
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Thanks all. ...Candy ..I dint know ...I didn't get MRI yet I'm still here in ER waiting......
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{{{ Oh sweetie, I'm so sorry and will be thinking of you.}}}
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Nicole,
Please report in when you can. I'm so sorry. Prayers coming your way.
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I am probably going to be checking nyself out if hospital before MRI....its a nightmare in here I'm still waiting I would rather just get it out in town . The Neurosurgeon fellow came down and basically ci firmedbits a met its not a white area its a gray black lesion etc. The MRI is just ci firm and get more details. So my question is....obviously my treatment fauled..but no treatment oenetratrs blood brain barrier so what does that mean for brain metzers as far as systemic therapy??
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Nicole,
You should stay there and have this confirmed/denied by other than a fellow. He/she probably doesn't know your whole history or what else this could be. I also don't think that's still true, that nothing can cross the blood/brain barrier. And what of gamma knife?
You need to know what you're dealing with. Take a deep breath and get the MRI done and explained to you. Please.
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It's not correct that systemic treatment drugs don't cross the blood / brain barrier. I've forgotten which one's do, but some do.
I believe they often treat brain mets with radiation, and it's quite effective.
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Nicole, we're here for you!
Here is a link to information regarding radiation treatment methods for brain metastases: Brain Metastasis: Local Treatments. This article has some good context https://www.feinberg.northwestern.edu/_rwd/head.php. There are a lack of effective systemic therapies for brain mets because most don't cross the blood/brain barrier, as you said. They're working on targeted therapies in clinical trials to improve treatment.
And here is the page for the Brain Mets Sisters.
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Nicole, I'm so sorry this is happening but as others have said, please wait for the MRI to get as much information as possible. It can be treated. Sending hugs.
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Nicole ,
So sorry you’re having to deal with this new development. There are some systematic therapies that cross the BBB and gamma knife is supposed to be really good . With one met, I’d imagine that’s the direction this might take. Hopefully you’ll get answers soon. Thinking of you.
Spoke with the Thrombsis dr and he is saying no to thinners for my portal vein clot. He said the last ct didn’t show it so he’s not confident it’s still there. Though my other drs said CT is not reliable for seeing clots in the portal vein. We had thought this was causing the ascites but according to him it’s the liver damage that is. So hoping that the ibrance kicks in and can dry it up. I know I have cirrhosis too so I’m not sure if I should expect to live with ascites forever. Regardless, bc I had a near fatal bleed in the hospital, I’m at high risk for another so the thinners are out of the question. I’m fine with his recommendations. It’s one thing off my plate
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