How are people with liver mets doing?
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Babs, I'm praying for you!!! Thinking of you all the time!
🤗
Anita
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Babs, I'm praying for you as well!
Everyone on the thread, it might be an old question, but I couldn't find the related information in the forum. How did you find the first liver mets? Did you all find it from PET-CT scan? The MO is having my cousin to check her blood for coagulability and hemostatic function because of bruising and bleeding problems. She didn't mention what's that for, so I wonder if she's worried about her liver or bone marrow. Thanks all!
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My liver mets were found on Pet scan after elevated TMs
Bab
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My lliver mets were found on breast screening MRI. Found something suspicious in my breast and liver (was just included in the scan) diagnoses two years ago on July 23!
Read your posts everyday but rarely post. Hugs to you all
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My liver mets were found on an ultrasound after elevated TMs and liver enzymes. Ultrasound is used for me instead of scan because of severe allergic reaction to scan contrast.
MO decided to test TMs more often than monthly these days. Got my lab results and sure enough they are still climbing after 1 week. ALT level almost double. Pretty sure Taxol is not working for me.
Mommat - I sincerely hope that this clinical trial will be good for Dani. Sending hugs to both of you.
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Hi Ladies, praying for you all like always!
Babs- good luck with the new meds. I'm sorry that you had progression....arghhhh
Linda, my fellow Canadian, I hope that Taxol will get it's sh*t together and do what it's supposed to do!!!! Best of luck to you!
Kidmanliang...my mets were found by CT scan after severe abdominal pain.
I have a follow up meeting with my MO in the morning. My recent CT showed very slight progression but overall stable disease. I am on a trial and am technically stable BUT my ALP is over 500
. I'm not sure what to do. I have amazing quality of life on the Parp Inhibitor I'm on but is this tiny progression the start?? we'll see in the morning. Please say a little extra prayer for me tonight.Hugs,
Maria
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Beans mama,
How much increase in size was your progression
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My liver mets and scattered lesions on my pancreas, bladder and abdominal wall all found by CT scan.
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Dang babs, I'm praying the Halaven is the ticket for you. You need a long stretch of peace.
I'm definitely saying a prayer Maria and thanks for keeping us up to date on the trial.
Mom, glad to see you back and praying for Dani also.
Linda, I'm sorry for the miserable SE's you are experiencing. Even one symptom throws everything off...I hope you get some answers soon.
Photogirl, sorry you were feeling ill after such a wonderful trip. If it's the xeloda did they give you anything for nausea? Looking forward to some new pics soon!
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Feeling bad about everyone's progression...and mine, too 😣.
I can really feel the new back rib met that was spotted on the last PET I had in May. Six weeks ago I didn't even know that it was there. We know what THAT means, sigh. And my thoracic vertebrae are acting up again too...I thought I was over that. Seeing MO next week, so we'll see what she says.
Hope these two buddies can cheer us up...Lou Seal and Nemmy the Sea Otter
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Kidmanliang - my wife's liver mets were discovered by CT scan.
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my liver mets were found with US when checking on something else.
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Sad day for me and my wife today. The PET done yesterday confirmed what CT suspected couple days back. As per the CT report, out of 10+ lesions, all are stable "except" one that grew from 1.2 to 1.6 cm and there is now 1 new 1cm lesion. The PET confirmed the same about the 2 rogue lesions but could not see any activity on the remaining approx 10 lesions. The onc is treating this as progression and wants to switch treatment. I am having doubt since Xeloda ( the drug sh his on currently) did take care of all the remaining liver mets except those two I mentioned. Would love to know your opinions.
At the same time her TMs have be falling.
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I am thinking you are dealing with two types of cancer now. One that responds to Xeloda and is causing the overall tumor burden to decrease and one tiny little met that has become resistant. You might get a good bit of time treating that little outbreak in the liver and maybe staying on Xeloda. Think about TACE or Y90 ... any appropriate local liver treatment.
Second opinion time for sure as this situation has increased in complexity and there are going to be different ideas on what to do.
>Z<
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lmwl- I can write you in a few hours as I have a similar situation. My bone and lung mets and all liver mets but 1 are stable. One met grew 1x1cm in each direction but the radiologist considered this stable. My MO was doing a more thorough check with a specialist cuz I'm on a trial and I meet her at 11. Needless to say....I've been up since 3am boooo
I'll write more later
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Good Morning Everyone,
Kidmanliang, my liver enzymes kept rising after my bone mets were discovered. At first I was taking Ibrance with Faslodex and there were no liver mets on my first Pet Scan. About 8 months later my MO suggested that I have another Pet Scan , that I had to pay out of pocket, and one radiologist said I has progression to the liver. Went back to Dana Farber and my MO there looked it over with his Radiologist and felt it was inconclusive. So back to home for CT with and without contrast. No focal lesions just a spray through out the liver. New treatment Xeloda. But one thing that was and indicator for my MOs was that my Alk Phos was rising higher and higher almost to 500 at one point. So watch the blood work, some ladies don't have any indicators but for me the blood work was a hint and CT confirmed the liver mets. Hope this helps.
Maria I hope your trial is a success to keep things at bay. Thinking of you!
Lita, you are atrooper! Hoping you get this all under control for a while.
Linda, sorry about the SEs. I have to say I'm pretty new in the game and haven't had many SEs yet. Xeloda seems not to bother me yet.
Artistatheart, let me tell you I have never been sick on an airplane, but this was the worst. I feel better now so it must have been a bug. 🤢🤢🤢. I did get beautiful photos of all types of sea birds. I'll post a few. Puffins make everyone smile!!!
Hope everyone enjoys the day. You are all a savior for me. Joining this group and making friends makes me feel like I'm not alone with this scary disease.
Hugs to all,
Anita
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thanks everyone for the information!
Letmywifelive, sorry that xeloda did not work perfectly.
I have been thinking that two or multiple types of cancer cells that might co-exist as well. My cousin's PR status changed from positive to negative when recur. She has been seeking second opinion. Before her brain mets were found, the second doctor suggested to do a chemo before moving on to letrozole as she believed there might be some vicious cells that don't respond to hormone therapy. I haven't heard of doing chemo before exhausting other drugs, but it kind of makes sense. They cannot do anything now as she's doing whole brain radiation, but they might change her treatment plan after the WBRT. Has anyone had similar experience or heard of it?
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photogirl, thank you so much for the information
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Sorry I don't contribute much to questions as I am so new dealing with liver mets - but I sure learn a lot here!
Bens Mama - I hope your results justify staying on the trial - QOL is so darn important! Anxiously waiting to hear more from you.
Letmylifelive - What other tx does MO have in mind after Xeloda?
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LindaE54 - her MO is suggesting either enrolling for this clinical trial https://med.stanford.edu/clinicaltrials/trials/NCT... or go for Fulvestrant alone. We are looking at other options too.
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Hi everyone,
I need some advice- I'm particularly interested in what the American ladies may have to offer (we have a pretty decent system in canada but pet scans are verrrrry hard to get IF you even get approved). I sometimes read about things on here I've never even heard about.
Anyway, I've mentioned earlier I had a scan last week which showed 1 tumor that grew 1x1cm but the radiologists overall impression was stable disease. As I'm on a trial a 2nd radiologist reads scan and that shows stable disease too. Yes, sounds good rt? BUT MY ALK PHOS IS OVER 600!!!! So, this has been steadily increasing and my ALT and Ast go up and down.
If my alk phos goes over 750 I'm not allowed to take study drug anymore. I feel physically quite well although I definitely feel different than I did 6 weeks ago and have discomfort in liver area on and off. But I'm still chasing my little guy around, walked about 5 Kms yesterday and have a huge appetite.
After a lengthy meeting today, plan is to check bloodwork again next week but my Onc concerned CT just not able to catch the possible progression which may just be starting. I have expressed that I do not want chemo again til I must have it so will get ovarian suppression drugs again plus ibrance plus Femara. Just feels so strange to go off a drug after 14 months which has given me such stability in bones and lungs. Thing is...my bilirubin totally normal and if blood work gets too bad and bilirubin starts to go off then chemo would be best option....noooo more chemo
. I know ibrance is a great option too so I'm so grateful....I just thought it'd be a while before I'd have to switch. Feeling so betrayed again by my bodyI need to sleep on this. Any thoughts?
Big hugs
Maria
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and I forgot to mention I have never ever had problem with liver enzymes even when cancer was much worse than it is now. Any ideas?
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Hi Maria,
I don't know if I can help much but wanted to share - I was once on a trial and after months of tolerating things fine, I basically had an autoimmune reaction to the medication. In my case, it was my ALT and AST that were out of whack though. But since you are on a trial - any chance it could actually be a drug reaction and not the cancer?
Jami
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letmywifelive- I agree with Z. I think she has 2 types of cancer cells and that most of her cancer is responding to Xeloda. I would ask about treating the rouge tumors. I say this because I had the one lone liver tumor pop up in 2015 while on Xeloda. I took care of it surgically but continued on Xeloda. Have been stable since. There are many treatments now available to treat single tumors so I would explore those options.
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left - thanks a lot for that piece of info. It strengthens my belief that a local treatment may be appropriate at this point. Now we all know that what type of beast cancer is and there may be something else lurking out there, but the data I have in hand at this time supports local treatment.
Bens_Mama - In my experience, liver is a very strange ad resilient organ. For my wife she always had worst tumor load with best liver panel numbers. So we basically ignore the liver panel numbers these days and follow the scans.
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letmtwifelive. Local treatment and continuing on the currrent treatment would be great! I believe Y90 would work as SBRT requires 3 or less mets...this would be more targeted though...she really only has two that require zapping so she might qualify for SBRT or RFA. Good luck with the planning!
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LMWL - I have observed that medical oncologists have not embraced local treatment of liver mets as a line of therapy even though you can find many successful examples. All their training tells them that MBC can only be treated systemically. I would go see a specialist, even if it means circumventing your MO, to get an opinion on your options for local treatment. Your MO may not bless this or give you a referral, but as long as it continues to make sense to you, go see someone who actually does Y90 and let them tell you whether it makes sense or not.
It is making a lot of sense to me ... at least enough to go talk to someone ....
>Z<
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Z You're si right! my mo at Mskcc does not believe in local treatment of liver mets. I should have sought out someone else when there were only 3 mets there!!!
Babs
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Babs - That said, I think your MO is awesome. They just have their way of seeing things and cancer is so complex ....
>Z<
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I wish October would get here sooner so I could tell all of you how effective my y90's were. That, hopefully, will be encouraging news for all who are contemplating whether or not to have this procedure. I'm determined not to pay any attention to what my July PET says about size of liver mets. Because the IR told me sometimes they look bigger at 3 months, the 6 month scan shows the true result. Of course, I am optimistic about how my lung and chest mets will look in July. My MO asked if I just wanted to wait to do scan until October. I said NO. Because I really want/need to know that Ibrance/femara is working. My March scan gave mixed results.
It seems to be pretty easy for her to get my insurance to pay for PET instead of CT because I am extremely allergic to iodine contrast.
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