How are people with liver mets doing?
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Yes, yes I am... she's VERY bossy!0 -
Yeah!! Servant of Sadie!! haha.
I just love to hear good news as we understand what you did to get to this point. It is not easy.
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Curious, things are moving fast. June 7, the PETCT scan shocked everyone with the liver explosion in 12 weeks. SBRT did kill that 2 cm lesion, but boy, the next crop grew fast.
My liver MRI is June 9, liver bx June 10. Next is Xeloda wash out, then paclitaxol June 22. Repeat MRI 6 weeks post taxol.
My team working hard to keep me alive. Y90 is not off the table, just need systemic tx now and quickly.
My MO knows I am interested in ADCs, and clin trials.
You are alwsys kind to lend support and advice. So appreciative. Hope you are doing well.
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Sandie, It's scary as crap!!! Try not to freak out as they work to get it under control, easier said than done, but you got the A-team working on it!!!
Our medical system went offline for a month due to a cyberattack, so my appt scheduling is all messed up and I am blissfully unaware as to whether the switch to Faslodex-Ibrance is working or not...
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Dear Sandibeach57, if your tumors acquired her2 mutation/expression... can this be answered after biopsy (I really mean not only expression but mutation too)? The the whole field of new drugs/ADCs could be open to you. If they lost ER/PR, sacituzumab govitecan and leronlimab (via clinical trial?) could be extremely powerful. If you have power and feel good (I see you have will!), please hit it hard. I do not necessarily agree with your MO's prediction of 30 % chemo response - if tumor grew so quickly (high grade, high ki67?) a taxane could be super-effective - I see in you signature you were not exposed to taxanes?
Saulius
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Sadiesservant- 💃🏻💃🏻💃🏻 Happy dance
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Hi Saulius, I would need genomic testing to look futther at HER2 mutations or aberrations. Just had that liquid F1 bx when they couldn't access that now radiated dead lesion. So not sure Mcare would pay for another one so soon.
Once I am stable with Paclitaxol, I am hoping I can move to the more targeted treatments, if eligible. Watching the ADCs, plus mTOR inhibitor, Afinitor with Fulvestrant. My MO wasn't going to take me off Xeloda to change to targeted when I was stable, so probably won't go for it. But good to have options for later. And yes, no exposure to taxanes.
I asked MO to explain the 30% response. She said as I proceed with more and more treatments, the probability of response decreases. It might not apply to me. Just wanted me to be aware.
Y90 will be also on the table. My RO said that I 100% responded to SBRT, so feels I would do well with Y90. I will also be looking more closely at clinical trials..but need that F1, plus hormone status. Cancer still just in liver.
In the meantime, I continue to prepare for my 3 day bike trip with these stupid growing iver tumors. Taxol will happen afterwards. I just got my job back at the winery, so feel discouraged that I might not have the energy for that.
I remember AC chemo in 2016 and it was harsh.
Sigh.
As always thank you for your kind words. Sharing our concerns is conforting. Say hello to your Sandra.
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hi all,
we had a tough appt with the MO yesterday. after 3 failed treatments and extreme progression in 6 months we will see if doxil is working in a few weeks. if this doesn't work amazingly it seems like we have no time left to try everything because with each failed treatment she's less likely to tolerate the next one. doc was very nicely telling us to prepare for the worst i think. it all just moved way too fast, after her recurrence we've had absolutely no good news and i'm afraid the cancer has come back with such a vengeance that no treatment will work well enough.
finally meeting with an IR next week and hopefully they can do something about that liver
don't worry sandi- my mom tolerated taxol extremely well the first time around (and in combo with carboplatin too!) so if you're in generally good health as it sure seems like you are, you might end up handling it quite well so don't be discouraged
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macbookair- I am sorry for the MO's take on your mom's prognosis at the appointment. It sounds like he/she is sadly trying to be realistic and help ease you towards a possible outcome.
FYI-I went through 5 drugs and 2 local treatments in under 2 years before my 6th drug(clinical trial) worked to get stable disease. So it can happen. I had y-90 while on doxil. Y-90 bought me some time!
Hoping for doxil to work. Can she qualify for a clinical trial?
Dee
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hi dee- yeah he was definitely being as gentle as possible since i asked him to be honest. definitely not at all like the NP who was pretty harsh. i am optimistic about using y90!! i think it will be great since the only area causing symptoms right now are the huge liver tumor. thanks for the hope!
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Sandi, I want to encourage you! For most people weekly taxol is easier than AC. At mbc diagnosis I had numerous and large liver mets and weekly taxol wiped them out without wiping me out. I did not miss any dance classes, and I continued to teach my weekly dance classes to kids, which included a 45-minute drive each way. I did that the day before infusion, when I was at my best. I kept up with walking for exercise as well. I think you will be able to work at the winery. There is a rhythm to the side effects, so if you can schedule a regular day off, you might make your day off your lowest energy day. For me that was the second day after infusion. (Infusion day, steroid high day, steroid crash day, a second fairly low day, pretty normal day, pretty normal day, pretty normal day. Repeat.)
You haven't been on that many treatments, and never a taxane, so I am optimistic it will work well for you.
P.S. Watch out to make sure the steroid pre-meds are not messing with your mental health, and insist on a switch to abraxane if they do. (After a while I got crying jags from it but was still generally in good shape.)
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Macbookair, what a difficult and sad appointment you two had. But where there is life there is hope. Sending love and wishes that everyone will have wisdom, compassion, and peace making decisions.
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Macbookair2018, You are kind to think about me in your time of emotional stress with your mom.
I hate to see you lose hope that there is not a treatment for your mom that works. Maybe they just haven't found the right one yet.
Dee makes good points. You just need that one tx that can turn things around. Y90 is very effective for the liver. It can provide time to explore other systemic or targeted therapies. I am assuming she has had recent bx and genetic testing on that liver bx.
Virtual hug to you.
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Shetlandpony, your words were just what I needed.
You've been there..so very much appreciate that advice and I am writing all that down.
My MO wants me on systemic chemo and she is not opposed to something like Y90 later. She is just worried that the fast growing liver mets are moving elsewhere..like into my lung arterioles. I had pulmonary tumor emboli in 2016 and she does not want to repeat that problem.
So here we are. all of us..good news, bad news. But we have each other.
You haven't talked about yourself lately, but assuming you are stable and recent scans are good.
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Yes, my scans in May showed NED, and the side effects are managed. I love feeling well again and indulging my passion for gardening.
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sandobeach- I worked full time as a teacher while on weekly taxol to treat my liver tumors the second time around. I was told weekly taxol had less SeE and better quality of life. I found it to be very tolerable. Other than losing them regrowing my hair on taxol ( it started to grow back while on treatment) it was one of the more tolerable treatments I have been on. It was nothing like the first time around.
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Hi to all,
So, I detailed my surgery saga on several threads. I thought I was starting neratinib and another drug later this week, but today I had a conversation with my MO about things, and she wants me to have another CT and updated bloodwork bc the last bloodwork we have is late April and the last CT is April 12th. I'm starting radiation to my hips this Friday.
So here's my question: on the April 12th CT, it showed also that I had some liver growth. I've had no side effects other than higher liver tests readings. With all other liver mets, I haven't had any side effects.
What other side effects have people experienced with liver mets or increasing liver mets other than increasing blood test numbers? I've seen some people here say they had liver pain. Anything else?
Thanks.
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Hi BevJen,
I had pain but it was unusual given the number of mets in my liver (pretty low still). The issue for me was that one of the lesions was close to the surface of the liver which put pressure on the capsule. My MO said pain early on is not typical, instead patients generally feel ill (nausea, tiredness, may be itching and signs of jaundice). My understanding is that there aren't usually symptoms until it's quite advanced.
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Hi ladies,
So after a four week break from Affinitor/Faslodex and a 16 day high steroid course. The rash is creeping up again! This drug really messed up my system and it didn’t work long enough unfortunately. The only good thing from being on steroids is it masked my hip and leg pain and gave a chance for the radiation on these areas to work.
Now, I face the dreaded treatment choice decision. Not much of a choice really. There’s Navelbine, possibly CMF, weekly Taxol (but I had Abraxane before) that is about It and that’s actually stretching it!!
An oncologist friend of mine suggested Navelbine with Tamoxifen to try to control better since I’ve never had tamoxifen before and my tumor is highly ER/PR positive. My MO didn’t object but then I came across research that specifically says tamoxifen should not be given with chemotherapy because it reduces its efficacy by 50% in adjuvant treatments in early stage cancer. Not so sure if that rule also applies to the metastatic setting in general or Navelbine in particular. Any thoughts??? I remember JFL took this combo successfully for about 7 months before progressing but she’s the only one I came across that did that.
I’m getting anxious about being without treatment for so long even though I needed that break to be honest but where I left off was not good and now I’m getting this cough that’s worrying me. Headaches are becoming more frequent.. last brain MRI showed brain mets to be stable but that was 5 weeks ago and I don’t get brain scans until End of July.
My IR is pushing for Y90 but I’m not sure I’m ready fir this and that would also mean even more time without treatment and that is just so scary. If I was stable it would have been ok but how things are at the moment I don’t feel comfortable ricking the boat even further.
What do y’all think?? Please help!
Btw, I am worried about JFL .. anyone talked to her or messaged her recently? I hope all is well and she’s just busy living life 🙏🏻
You have all been in my thoughts and prayers and will continue to be as we all navigate the perils of this horrible disease ❤️
Heba
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Dear BevJen, as long as liver mets are small, until certain size, it is only blood biochemistry that shows something, and not always, as liver is extremely durable. No pain, as liver itself has no pain receptors. How about your markers?
Dear Sandibeach57, yes, I remember F1 failed for you but then let's hope biopsy is enough to answer Her2 question. But then genomic testing again would be good for other things, like mTOR, PD-1, PD-L1, etc... ehm, these tests are not that expensive compared to meds you get, so why would they decline? Please, try asking for this. As I said, you are taxane naive, so Abraxane or weekly Taxol should be perfect. And again, I do not think 30 % is a number your MO can show anywhere in literature - probability decreases, I agree, but probability means nothing in a set of 1!
Saulius
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Saulius,
Haven't had markers done for several months -- they weren't so eager to do when I was on immunotherapy. She is requesting blood work, so I guess that will provide some info. But it was the repeat CT from 4/12 that threw me for a loop since she started connected the repeat testing to my intermittent nausea.
But... I took Ativan last night on her prescription and I slept like a baby and so far today, no nausea. Might be the key.
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so many of you here are going through so much. You are valiant warriors in an unwanted battle and I am thankful to share the journey together. Dee
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day after treatment ( kadcyla). Ugh. Two day left this week to teach then next week full of class celebrations and two graduations. Finding the energy somewhere. Looking forward to a summer off.
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Hello everyone,
I have MBC to the liver.
I was just told today that I-brance is not working anymore. I have to switch to fulvestrant syringes.
Can anyone tell me how long this new therapy is likely to work?
Can I stay positive?0 -
Hi Mia, how long have you had Stage 4? Is the liver the only place you have mets? How long were you on Ibrance?
There are still lots of treatment options open to you so definitely stay positive that you can buy more time!
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Hi Mia,
While everyone is different and I did not have liver mets at that time, I was on Faslodex for three years before progression was noted. I would say things were starting to shift about six months earlier but no measurable change. All in all though, I felt that 2 1/2 years was a good run. Hope you have equal or better results!
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BevJen, I had high liver readings for about a year - I was really expecting to hear liver cancer, not breast cancer, after the biopsy. I'm going to say I wasn't really having pain from it until about a month before diagnosis, when I'd get some pretty good twinges. But, I broke two ribs on my right side and had a bit of different pain the PA thought was from gall bladder sludge 6-7 months prior to diagnosis, so that may have masked some minor liver pain. (I had two large tumors, 11.8cm and 4.?cm, and numerous smaller tumors - all right lobe)
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So..my IR wants to do the Y90 now and my MO wants to put it on hold. The IR wants to quick kill the many fast growing tumors in the liver now and MO wants to atart systemic taxol in 2 weeks, then MRi liver in 6 weeks to see if responding to tx. What if it isn''t? Then will my liver handle the Y90 soon after?
So the IR and I decided to do mapping next Tuesday prior to taxane infusion to see If tumors are actually feeding off hepatic artery. If not, then cannot do the Y90. So end of story.
I cried on the biopsy table.
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Sandi I think that is the best decision I said Y90 first all along....ummmm they said that my 2 tumors were not connected...but yet...some artery wound up being connected to one of them and it was connected to the 2 tumors that I had cryoblation done on a year prior..they were coming back to life then the Y90 killed those suckers!!! They said not everything shows on the mapping....
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Oh Sandi, I wish I could reach through the computer and give you a hug. What a situation. I can understand how challenging it is with competing perspectives. Getting the mapping is a good idea to give you time to make a decision. I don't know much about Y90 and know others will chime in.
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