How are people with liver mets doing?
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Hello, dolittle. I think there are probably even more people here on BCO who could give you input, but they need to see your question. You might consider creating your own thread (topic) on the Her2+ forum, with your specific question in the title; for example, "Treatment for Her2+ mets after TH for early stage?"
Momall, sending you support as you fight on for your daughter. Glad she didn't have to go to the hospital.
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thank you mom
DD is 42 with three young children.
She is in the middle of a divorce but the ex is being reasonably supportive.
There are twelve liver mets one is 5cm and two are about 2 cm. and she has some discomfort from them.
Taxatere made her very ill the first time she had it in the neoadjuant setting.
I don't want to upset this onc but feel the need to be reassured we are on the right track.
Eliza
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Thank you Zarovka for sharing the information and knowledge! You are always so inspiring!
Sending hugs and prayers to everyone
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Claire I'm so happy something is working. Xeloda is working good for me right now. I hope you can get to that med!! Thinking of you and everyone. I've been so busy with our fall harvest on our farm I've been neglecting the site. I'll catch up soon.
Hugs to all.
Anita
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Dolittle - I love to rattle on about treatment options but I am selfishly focused on HER2- and I can't answer your question. You need to find the HER2+ folks. I looked for a HER2+ thread and this is the best I could find .... if they can't answer your specific question, ask where the HER2+ ladies hang out. For example, I am on Ibrance and letrozol. Because Ibrance is generally prescribed for my specific diagnosis, the folks on that thread are dealing with more or less my cancer. The value of their perspective is enormous ... I effectively get the opinion of 10 doctors.
You do want to find a community, or start one as Shetland suggests, of women with your daughters diagnosis. This will be important now and for years to come.
https://community.breastcancer.org/forum/8/topics/...
>Z<
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Well, rats. My scans show clear progression. A bit in my sternum but significant progression in my liver. My scan in April showed no hypermetabolic activity in my liver. The scan yesterday shows multiple points of elevated SUV ...
Multiple intrahepatic lesions are identified with maximum SUV of 6.8. ... Probable porta hepatis adenopathy maximum SUV 3.7.
I used to be an honorary member of the liver mets channel due to my original diagnosis, now I am back as a full fledged liver metster.
Anyone know anything about porta hepatis adenopathy?
>Z<
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Crud Z...that just bums me out. You got such a long run on your 1st line so that good anyway. Let us know what the next Tx will be. We are all here for you.
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Z,
I was orginally diagnosed with lungs mets and Ibrance and femara worked for 20 months
until a Ct scan showed suspicious lesions in the liver. Xeloda seems to work well for liver mets but unfortunately not for me. I am currently on Faslodex and live from scan to scan hoping my approximately stable liver mets will not progress for a long time.
I've noticed the ibrance and femara limit seems to be around 18 months.
I wish you had better news, but perhaps another hormonal will work for you, faslodex is easy with few side effects, I've had none.
Sending a gentle hug.
Kathy
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Z - well crap! I'm sorry to hear of your progression.
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Z that rots. What will be next for you? Whatever it is I hope it's a VERY long run ! Sending hugs
Babs
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Z, I am sorry to hear about your progression. Take some time and rant, mourn, have a pity party or whatever you need to do. As you well know, there are lots of other treatments available. When will you and your MO settle on your next treatment plan?
Hugs and prayers, Lynne
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Z From no uptake to numerous liver mets with uptake in 5 months. That news made me stop breathing. I can imagine how you feel, because I could be right there with you in 5 months, but I won't claim to know how you feel.
I know you have lots of things in your "back pocket" because of your research. Did your MO give you his advice?
I have no words except to say I'm praying for you as you make difficult decisions.
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Z, I'm so sorry you have this progression. It really sucks to have to start another TX. I think you now, but my DH is a Radiologist. His 68 and did his internships and residence at Harvard so in my opinion he's a real smarty and from the old school when Docs were kind and caring. He's the best and always goes over all of my medical stuff. Slightly OCD. So this morning when I read your post asking if anyone knew what portahepatic adenopathy was he wrote it down so I could help you. He reads CTs and everything else so he knows. These are his words he wrote down for me "Porta hepatis adenopathy is enlarged or abnormal lymph nodes near where the vessels enter the liver and where the gallbladder and common bile duct sit adjacent to the liver."
I hope this helps you understand you are so smart I love reading your posts, but if you ever have any questions let me know and I will ask the good doctor. He enjoys when I ask him always willing to answer questions.
I'm sending you hugs and vibes to keep your spirits up. I have such anxiety all the time so I know how you feel. Keep us posted on your next TX.
Love,
Anita
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Z, so sorry to hear your news. Please let us know what you decide on treatment. Keeping you in my thoughts and prayers
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I got the results yesterday. I haven't talked to my local MO since seeing the results online, but her treatment protocol after ibrance/letrozol fails would be faslodex alone. Faslodex is a reasonable option as well as the NCI standard of care for second line treatment. I can see going on faslodex at some point, but any hormone suppression strategy is really just kicking the can down the road while living scan to scan, as Kathy described so well.
Hormone suppression has been hard and is undermining my overall well-being while Ibrance slams my immune system, ultimately making me more vulnerable to this evolving beast. I think there are only two strategies that could potentially give me years rather than months on a line of treatment and those are oncolytics and immunotherapy. Oncolytics involves unleashing engineered viruses on your cancer and is early stage everywhere in the world, so that leaves immunotherapy.
I would be on a plane to the NIH to be vetted for their remarkable suite of immunotherapy trials if I had not found a solid option in Japan in a clinical setting. I feel there are advantages to getting treated in a clinical setting, and my daughter is fascinated with Japan. Every school project since she was 8 has been about Japan. I'd like to believe that my little munchkin has been leading me to a good treatment option.
Anita - Thank you for that explanation as it is clearer than what I get from the web. It doesn't mean the vessels are obstructed, it just means there is a risk.
>Z<
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Z so very sorry to hear of your progression. Whether you go for Faslodex or the immunotherapy trials in Japan next, I know it will be the right thing for you, well researched and considered, your posts are also so enlightening.
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Z,
What does Japan offer in a clinical setting that you would choose this over a another hormonal treatment or a NIH trial?
How would you handle follow up treatment or care?
All of us would like to stop this invasion into our liver, I find it emotionally rough , knowing chemo is down the line. One plus of faslodex , my blood work is back to normal.
Thanks for your research, I appreciate your effort and time.
Kathy
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>Z<
I was sorry to read about your progression and was wondering how this news would effect your Japanese plans. Waiting to talk to the MO can sometimes be as bad as waiting for the CT results to be posted through the online portal. Let's hope that conversation happens soon.
I also got my CT results yesterday. Unfortunately, Ibrance and Faslodex have failed me after just a few months. I too have progression in my liver and a new met at T9. I suspect my MO will be calling me today to let me know that "Houston, we have a problem". I am guessing that Xeloda will be in my very near future with possible rad to the T9 met. I had so hoped for a long run on Ibrance and Faslodex. I also have a mild pleural effusion AND bibasilar atelectasis. Sheesh....really! My guess is that the mild pleural effusion is placing just enough pressure on my lungs to cause the bibasilar atelectasis. I should probably start to rethink the elevation that we live and play at.
Since there are no clinical trials for MBC currently going at our Cancer Center I may start to look out on the west coast. I have lots of family out there so going out for treatment might be a possibility.
Hugs to you and prayers to all.
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Kathy - I will write up what I am doing and why and what is involved. Not ignoring you just scrambling to get a liver biopsy this afternoon, if you can believe it. Ms. Ready for Everything was not ready for that.
>Z<
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Z I'm keeping you in my prayers as you head to new treatment. I will follow closely as you head to Japan. Know we are all in your corner.
Mary
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Z - so sorry to hear about progression. You are a champion! Get that liver biopsy and let us know your plans for Japan. Maybe perfect timing that you were planning October. Faslodex is always in your back pocket and a relatively easy med (but you do get lumpy in your tush). I had 18 rounds on Ibrance +fas. I am rooting for you as always. Anything you need - we are here.
(()) Claire
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Z - Argh!!!!! So sorry there was progression. One thing I can say from my experience in changing treatments after progression - is that the next treatment can very well be more tolerable than Ibrance/Letrozole. I know it may only be kicking the can down the road but if that road lasts another year or 2 before the next progression and you FEEL BETTER then that's nothing to sneeze at! Even if you don't feel better but you get another year or 2 - that's nothing to sneeze at either. But I prefer to hope for the former. As you know I went on a clinical trial after Ibrance\Letrozole failed (progression to my liver). I am very pleased with the clinical trial protocol. I feel so much better on it. My hair stopped falling out and I'm no where near as tired as I was. There are still side affects but for me they have been extremely tolerable. Whatever your next treatment ends up being - it may give you a new lease on life, so to speak. It's always a punch in the gut when we face progression but there are lots of options out there and the next treatment isn't necessarily harsher. It won't be a cure at this point but it will keep us around until there is one (we all hope).
For those of you who don't know - I am on a clinical trial for a new oral SERD that doesn't have a name yet. It's just called LSZ102 and I take it with Kisqali (ribociclib). LSZ102 is similar to Faslodex but it is oral - NO SHOTS. I have a topic on it so check it out if you are interested.
Back to Z - we're here for you! Excited to hear what happens in Japan!
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Animal crackers,
I agree with you on the second line treatment can be easier than the first line, I was surprised by Faslodex being much more tolerable
I will lookup the trial.
Z,
Thinking of you ,
-k
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Hi Z,
Wanted to chime in with my condolences regarding the progression, but my thumbs up for your plans with the Japanese NK cell immunotherapy protocol. Have you considered creating a thread for it? I know a lot of us will be very interested in following along. If I'm remembering correctly, I think you said it's normally done in conjunction with your standard of care treatments. With Ibrance/Letrozole out of the picture, will you be utilizing this therapy alone or adding something to it? Please know I admire your research skills, careful thought and planning and I wish you a phenomenal outcome.
In reading the recent postings, it seems like it's Letrozole/Ibrance fail-liver progression week. My SIL is a new member of that unpopular club as well. Her MO is setting up a liver biopsy and genomic testing with Tempus, but initially suggested Faslodex and Affinitor as the next step. I was interested to see you say Faslodex alone is a standard of care option, as I have very strong concerns about Affinitor for my SIL, who has had several bouts of pneumonia prior to her de novo MBC diagnosis. I suggested considering Faslodex alone until the biopsy genomic results are back, so I'm comforted to hear your MO would suggest that option too. I inquired about immunotherapy therapy trials, but her MO indicated that she felt they are not producing great results yet for ER+/PR+/HER2- breast cancers. I'm interested in any therapy option suggestions at this point. Thanks & best of luck to everyone in beating this awfulbeast.
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Aw, Z...so sorry to read this. You were on such a roll but like others have said, no one is more prepared to find the next best treatment than you. Waiting to hear that all is well again. Much love and gratitude for you and your caring spirit.
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Hi Mom,
The onc wants to put DD on navelbine, herceptin and perjeta but I am thinking a stronger chemo would be better.
I think the onc is trying for quality of life as DD had a tough time with the initial fec.
As first line treatment I want to like everyone else, kick these mets hard and don't want to waste time on a softer approach which may have no effect.
Has anyone else has success with navelbine as all I'm reading so far is not really positive?
Eliza
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Max Otto - I'm actually on my third line of treatment. I started with Tamoxifen, then Ibrance/letrozole and now LSZ102/Kisqali. We all respond so differently to these treatments so it is important to keep in mind that treatments that are hard on some are easier on others. Such a crap shoot!!
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Well. That was quite a day.
The scan report from my PET scan thursday was scary but also unclear. I happen to know that the radiologist at our local podunk hospital is bored out of his wits looking at fractures and thyroid nodules all day long. I went over this morning and walked in without an appointment and asked for help. He pulled up my scans and combed through the images with me beside him. It really boils down to one new met in a rib and 3 <2cm tumors in my liver that light up to 4-6 SUV.
There are no lymph nodes impinging on the vessels leading to my liver, gall bladder and adrenals as the reading radiologists postulated. There are 2-3 hepatic lesions that are hypermetabolic, really only 2. That is technically "multiple" mets but they could have clarified there were <=3 mets rather than say "multiple mets". It would have been nice to note that all are less than <2cm. The way that outfit reads and reports on PET scans did not adequately communicate the limits of the metastasis. And it is limited.
I also woke up this morning wanting a biopsy before I leave for Japan but unable to imagine the possibility that I could get a biopsy in one day. Nonetheless, after sitting with this wonderful radiologist for some time discussing my PET scan images, I asked if there was a universe in which I could get a biopsy today. He called his friend at the larger hospital in santa fe to get me in. He called my oncologists office and got through and got an order for me.
To be clear, my oncologist does not take my calls. I called her this morning three times trying to get the order and did not get a call back until 4:20 on my way home from the biopsy. This radiologist, who I know only because he once did an ultrasound of my thyroid nodule, spent two hours this morning making the calls to make biopsy happen. The only reason it happened is because he is a doctor with access to private phone lines. Unbelievable human being. Sometimes we run into angels ... happened to me today.
I am comforted greatly to have fresh tumor samples in paraffin somewhere in a lab but also exhausted. After the liver biopsy I still had to host a dinner for the JV Girls Soccer team. I kid you not. This was not supposed be a liver biopsy fire drill day, it was supposed to be soccer mom day. Ended up being both. Not an ordeal, family did their part, but also not exactly compliant with the post-op instructions. Time double down and comply.
Still trying to make sure I get the right information from the pathology study ... the first pathology report I got was incomplete. That is my project for the weekend. Any thoughts on the components of a complete pathology report are welcome.
>Z<
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Z, you met an angel for sure. Sounds like something my husband would do for someone. It sounds like this Doc got the ball rolling for you. I'm so happy for you. Keep us posted on your progress and next TX. I'm thinking of you and hugs to you!
Anit
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Z. I had chills reading your post. That a doctor would do that for you is truly amazing! What an angel. Now that you've had the biopsy and the dinner is over please rest and be a compliant patient. Your body needs a rest.
Keep us posted on what's next for you
Hugs
Barbar
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