How are people with liver mets doing?
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Bad at Usernames - Any discussion of biopsies of those ambiguous lesions?
>Z<
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Isy you are so right,been there done that, hope this treatment helps you real soon.
Badatusername - if you are asking, I'd say definitely MRI. And even better, I've been reading. that an ultrasound will give you a more specific amount of the fluids in the area. They could measure it. But maybe it's good to know. I'd love for DD get some scan specific to the area, but Onco keeps saying what's the point, we know it's scattered, innumerable some quite large some small. I hate to tell you, but one only feels it, when like Isy got bloated or it's painful or even pushing up in the ribs etc... and a higher grade of ascites,so things could be going on prior to all these symptoms. And if you know before, i'd say you could act sooner. good luck with your decision.
Thanks for the tip on Hopkins, I'll keep it in my to do list, she will try this new Trial, starting tomorrow. We all hate the wait, but there is not much of a choice at this moment and just pray that this thing kicks ass.
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zarovka - The largest is about 1cm. Would that be sufficiently large enough to get a decent sample from? I don't want to be making major treatment changes unless we know these suckers are cancer, but I also don't want to get stabbed in the liver if it's going to be a hit or miss situation.
leftfootforward - Xeloda is certainly an option but I don't want to give up Tykerb unless I'm actually progressing on it. With brain mets, I can't afford to run through the limited drugs that cross the blood brain barrier without good reason. I'm sure you can relate
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bad at user names- I think going for MRI will be a good idea. My understanding is that CT or MRI should be able to tell with more than 90% accuracy if the spots are cancer or not. If CT is non-definitive, try the MRI route.
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badatusernames, I was diagnosed with an ultrasound. It wasn't the doctor's first choice of scans (I was pregnant and couldn't have any scans emitting radiation) and doesn't provide as much detail as a CT, MRI or PET-CT but there was no reasonable question about it being mets. I am curious, why does your doctor think it is unclear what it is? Would a PET-CT scan be an option since it would show increased metabolic activity if it were active mets? One thing to keep in mind, I read an article that said the liver is not a "complainer" until the very end. I had over half my liver consisting of mets with no side effects a year ago and no tumor markers, alkaline phosphotase or liver enzymes out of normal range. I would not hang my hat on no symptoms, although no lesion growth is a great sign. Good luck in finding the answers you need.
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Hi Everyone. Reading and catching up after a busy several days living life.
Intothewoods, congratulations on that complete response to doxil and cytoxan! Since the mets happened on Femara, I wonder why your onc isn't planning Faslodex or Aromasin instead now? I also wonder if there is any chance you could get ribociclib/Kisqali instead of palbociclib, for less effect on blood counts. I thought they do not use neupogen with Ibrance. Ha, I typed this before reading that Zarovka has said the same thing above. Reading more... I suspect your rash on A/A was most likely the Afinitor, so it seems worth trying Aromasin again.
Kaayborg, thanks for the post about radioembolization, full of both information and hope. It's good to know you have this treatment, as my radiologist put it, "in your back pocket". It sounds like you have a super doctor there. What a comfort.
JFL and Z, I had the same fear that Fas would create TN, so thanks for the explanation, JFL. I've always assumed that letrozole comes before Faslodex because a pill is more convenient and cheaper than injections.
Yes, Z, the trial dose of 2.5 mg is a very low dose of Afinitor. It comes in 5 mg, 7.5 mg, and 10 mg pills, and 10 mg is standard. My onc says that in her experience, you either get the side effects or you don't. It doesn't tend to be a matter of degree. So she says that if I have not had any lung effects by now, I am unlikely to get them. I have been pleasantly surprised to see that my body seems to take Afinitor in stride. I feel good.
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Hello, Amelia, and welcome. It's great that you have had tests available to fine-tune your treatment. Hello and welcome, livebig! Suzy, swimming and snow tubing, I love it. You go, girl.
JFL, since you got seven years on Tamoxifen, it seems reasonable to keep it in mind for the future. In my case, I only got three years after stage one, and I have a very strong belief that in my case it was a bad drug that fed the ILC. I will never take it again unless I have no options left.
Bstein, I really appreciate the heads-up about breathing for radiotherapy. I always worry about it during scans. Decided shallow upper chest might be best, but I have never asked for enough detail. I will be sure to ask for a lesson if/when it is my turn for radio. "Just breathe" lol. How should I breathe!? (as she hyperventilates).
Momall, it seems Dani is on a good path now with the trial. Tomorrow is the day. If the drugs work well, local treatment for liver and lung won't be needed.
Gina, I don't have any advice. But MSK is a good place. Wishing a fast response for Pauline! And a way for you to recharge your batteries. Take care.
Isy, you too. May you have a great response!
Leftfoot, this stupid cancer stuff needs to back off and let you enjoy your trip and your new job.
Bad At Usernames, I'm all for seeing if a different kind of scan, MRI in this case, will give you more information. Is a "liquid biopsy" a possibility?
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An MRI is more sensitive. Sometimes biopsy is the only sure way to know for sure if the lesions are mets or not. Have the MRI and take it from there! You can find more out about local treatment to your liver IF you need it! Hugs to you!
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Shetland - Affinitor without the side effects is awesome. I am psyched because this should work for a while.
>Z<
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Shetland let's hope for it all being wiped out for Dani!
Afinitor should be very good, and no SE's that's incredible like Z said.
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Gina did you get a plan for Pauline?
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Pauline was given a choice of Halaven and Navelbine, and despite the hair loss she decided on the Halaven, which she started yesterday. The oncologist thought Halaven was a better choice. Despite the stress of progression, it's nice to know that the tumors are still smaller than they were last October when the s*it nearly hit the fan. There are some real perks to Halaven that we are focusing on - it's a push that only takes a few minutes, no premeds and beastly steroids, and MSK has recently changed their policy so that Pauline can receive her treatment at their NJ location (much closer to home, avoiding the stress of getting to Manhattan) on her non-clinic days. Fingers crossed this new treatment whacks down the liver mets. Thanks for checking in.
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THANK YOU everyone!
Fate intervened and due to a cancellation, I was able to get in for an MRI late afternoon today. I have some travel coming up so this is perfect - I was worried yesterday that it would take awhile to schedule the MRI and it would be butting up against my trip, but getting it done sooner means we can make decisions before my travel. Also, I have recon finally scheduled for May, so we can figure out well in advance whether I should still go through with it or cancel.
I also sent an email to my onco clarifying the timeline for him and pointing out the liver lesions showed up before I started current treatment (and if they're tiny and diffuse they may have been around for a lot longer) so we shouldn't put this down as a failure of Tykerb/Herceptin.
So my head is spinning a bit because this has happened so fast but I'm happy that after 5 months of ambiguity we are getting closer to answers.
I've never had a liver MRI before so any advice besides breathing? I assume I can eat/drink normally or the scheduler would have mentioned something and I'll get constrast through my port. How long does it take?
Momallthetime, best of luck to Dani today as she starts her new treatment.
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I'm with Pauline on that, Gina. Hair loss, hard as it is, may not be the most important QOL consideration to a particular patient. I've already chosen a chemo and I'm not even there yet -- my poor onc! For me, anything that would stop me from dancing would be the worst. So if/when I move to a chemo, I would rather deal with the hair thinning and intravenous administration of Gemzar than risk hand/foot syndrome with Xeloda.
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Shetland, I agree. After all that Pauline has been through, including Xeloda, this chemo sounds like the best so far apart from the hair loss. Many other side effects make a big difference re QOL, like constipation, mania/jitters from the steroids, and the timing/location of the treatment. I actually think Xeloda was the worst, even though the pills were easy, because of the hand/foot syndrome.
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the MRI will most likely be an hour or so. Biggest thing is to be comfortable. I don't like wearing hospital gowns so I wear my own no metal clothes. Ask them to play music for you if possible for distraction from the noise. If you are closterphobic, you might want to take something to calm you as MRI machines are tight.
Best wishes.
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So it's similar to a brain or breast MRI. Will I be on my back or stomach??
Also, I checked in and they told me I should've fasted. Ugh, no one told me and this was last minute! But I had such a small lunch (more like a snack) that they said they can still do it
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you will be in your back. I found it much easier/ more comfortable than my breast MRI. It's about the same as brain MRI but I remember one part where I had to adjust my breathing. Could be just because they needed a better image. Not sure.
If you've done the other MRIs you will be fin
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Much easier than both breast/brain. The tube felt a lot less confining. Hopefully I'll find out tomorrow. It's probably more likely mets than not but thank you all for letting me follow and giving me much needed hope and medical advice..
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Oh well, time to move on to something else. :-(
KD had a CT scan yesterday and her MO called today to confirm that her liver mets have grown more. So much for her run with Taxol. It was good while it lasted.
The good news is that it has not spread anywhere else, and all of her bone mets appear stable. Thank you, Xgeva, I guess.
He said he will spend the weekend deciding on her next treatment plan. We have plenty of faith that he will choose the best plan for her going forward. Thankfully, he still has quite an arsenal to choose from at this point.
We were not surprised by this as her liver pain has been increasing the last week or two. KD's only concern is wondering what "different" side effects that she might have to get adjusted to now. We shall see.....
Louis
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KD - I am sorry to hear of your wife's progression. We'd all like to settle in with our familiar side effects ... hoping the next treatment is easy as pie. Please let us know what your doctor decides.
>Z<
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Louis so sorry, so much for that you are right. Hope Onco decides soon. What's your wife doing to make herself more comfortable? Is she uncomfortable due to ascites? Or the tumors are taking up so much space? Good luck!
Badatusername it's gr8 you got in today so you'll at least know asap where you are holding.
D started today, literally a full day's work, left the house 8AM and got back close to 5. Yep, so it goes. Hoping, hoping. THAT'S my motto.
>Waving to everyone,
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How is Dani feeling after her treatment and such a long day??
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Hi tired, but can't say anything exquisite. Hope the numbers hold so they won't hold off next infusion! Thx.
Waiting on MRI results, I meant yours!
The motto i wanted to send was a picture, but it says:
Fate whispers to the Warrior - You cannot withstand the storm - The Warrios whispers back - I AM THE STORM
To all of you!
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Mom - YOU are the momstorm! Congrats on getting through the first infusion. I imagining those TROP-2 receptors binding with the IMMU-132, the deadly chemo drawn into the cells and ... BAM dead cells everywhere. Ooof this image is making me want to drive to NY and give Dani a glass of water or two ...
>Z<
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that was so cute Zar and I am sure you would be here!! And the image, that's the one we are dreaming about. Going with Dani shopping for mundane stuff tomorrow, feeling excited already. Take care everyone0 -
Momall. So happy Dani started her new treatment. May it kick her mets in their butt!!!!
Ba
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Officially joining here. MRI was consistent with mets. I'm ok with it. After months of inconclusive scans, it's a relief to have an answer. Plus, the silver lining is I get to hang out with the really cool people in this thread!
Since the spots showed up before I started my current treatment (Tykerb/Herceptin) and they haven't grown since then, I made it clear I was reluctant to drop those drugs completely. So onco and I decided quickly to just add Xeloda. It was an easy decision because we had talked about doing those three drugs together last fall to treat the brain mets but he wanted to hold off on X until we determined how well my GI system tolerated Tykerb - and IV even tolerated it fine.
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Bad, sorry to hear it is in fact liver mets, although knowing does bring some relief in that you can formulate a plan. It sounds like you and your doctor have a great plan with Xeloda. This is a wonderful thread with awesome people!!!
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Badatusern yep, you knew. It seems a good combo. Just gotta keep an eye on those numbers. How often you get the Herceptin? They do blood work those times right? So you will be able to keep an eye on the #s. Also are you joining the Xeloda thread, will be good for you. Yeah, definitely you are in the club with the coolest!
Babs, yep- just hope for the best. Counting down with you, that's so exciting. Things coming along?
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