How are people with liver mets doing?
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Moth..I totally missed your post!!! I am so sorry about Trodlevy not working.....its like what I said to you last week..I just see it not working for a lot of people.. I don't think its working for me either. I know others have mentioned it but have you looked into trials??
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Dear all, thank you for replying to me. I am in utter disbelief because it turned out the radiologist compared my mum's MRI scan to the one from November and not the one from March. SHE DOES NOT HAVE PROGRESSION and her largest lesions are smaller in size and show lack of biological activity (she had cyberknife done). Her oncologist from Greece said the scan is stable and better than last time. She is to continue ibrance but higher dosage and maybe go to faslodex to better control the smaller lesions.
But the oncologist (from our country) my mum spoke to (the only one who can prescribe ibrance so we don't have to pay an absurd amount of money) told her since she's Er negative she cannot take ibrance and it was the wrong choice of therapy this whole time and she should do chemo. My mum was devastated. Some people should be ashamed to call themselves doctors.
But good news, so I'm trying to stay positive but the damage on my mum's mental health has been done.
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daughterof,
Fantastic news!!! Sucks that you had to worry so much because of their stupidity. Hope you mom will be able to enjoy the truth, that her tumors are shrinking.
BAP, So sorry to hear that you're in the hospital and experiencing so many complications.
Moth, I've been doing some research on trials for TNBC because a friend of mine with TNBC is having trouble finding her next (12th!) treatment. I know you are in Canada so your access to trials is different but I found that here there are many trials for solid tumors that include TNBC. If you are interested in seeing the list I've put together so far, PM me and I'll email it to you.
Hugs, Susan
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Susan are you willing to share that list with me too? I would love to see it.
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For sure! Will send you a PM.
Hugs, Susan
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Moth, I'd like to see the list too, if you don't mind sharing it with me. I have completed 15 lines of treatment (Hormone therapy and chemo) and now my PET scan shows progressionin my liver and bones.
Since my bone marrow is suppressed, the WBC and platelets are very low. So my MO is suggesting anti-androgen therapy, since my tumor is AR+ (80%). I haven't come across any data that this has worked for TNBC, but I am willing to give it a try. Does anyone know or have experience with AR therapy? I saw a list of side effects on Xtandi website.
My cancer cells seem to have become resistant to most of the chemo. and my choices are limited. I may have to go back to older regimens like anthracycline, CMF, etc.
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s3k5— you mentioned AR+. I read about that a couple of summers ago but find old posts hard to locate after system wide forum changes.
Can you share what you have about it? I think, for me, it is time to approach my MO to investigate this path. I had this conversation with my original MO when first DX metastatic and he was agreeable to look into that once CD4/6 drugs stopped working. Only trouble is due to conflicts with my clinic of 35 years and my insurance co, I have had to change all my doctors (sucks). I need the same conversation with my new-to-me MO. Chemo brain and forum changes are an issue for me.
Was excited to see you mention AR
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How does one even test for AR receptors? Biopsy? It's not one of the standard testing.. not even sure if my tiny developing country has the means to test for it.
What meds are there for AR+ tumors?
Susan thank you for your kind words. It's been a full year since my mum's diagnosis and we're blessed she can continue with targeted therapy. She's so terrified of chemo and there's little I can do to help her fight that fear. The wrong diagnosis of progression plus the oncologist telling her she can't be on Ibrance since she's Er negative took a HUGE toll on her mental health. It's been a tough week.. her MO from Greece confirmed she can continue with Ibrance and it doesn't matter if she's Er negative since the drug seems to be working but she's been so sceptical and depressed due to the other oncologist comment "you took the wrong medication for the past 10 months and now you have progression". Ugh. Wish there was more empathy in this line of work.
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Actually, it's not androgen suppression that works against BC but treatments that will increase androgen. It took them a while to figure this out. There are trials going on for Enobosarm, an androgen agonist. There are a couple of people on these boards who are taking Enobosarm off trial because you can buy it on the internet. It's typically used by bodybuilders. I ordered a bottle of it but haven't tried it yet. Trials are being done as a monotherapy or in combination with Tamoxifen and Verzenio. Enobosarm was fast-tracked by the FDA this past January.
My AR positivity was confirmed in my last genetic profile report. I am AR+ 90%.
Hugs, Susan
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Susan— thank you for your reply.
I just had a biopsy last week which will be used with Guardant360. Maybe MO will learn my AR number?
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Susan,
I think we are talking of two different drugs : I am going to be taking anti-androgen (Xtandi).
"Enzalutamide is used to treat prostate cancer. This medication belongs to a class of drugs known as anti-androgens (anti-testosterone). It works by blocking the effects of testosterone to slow the growth and spread of prostate cancer."
This has been approved for prostrate cancer but my MO thinks it will work for my liver mets since the tumor cells are 80% AR positive.
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Just wanting to get the word out about a new weekly Zoom meeting getting set up. You do not need to be working to attend this meeting but the intention is to have a time that will work for those of us that can't make the current Zoom meeting times that are held during the work day. Here's a link to the thread for the input on a time and day that works for you: https://community.breastcancer.org/forum/8/topics/882768?page=1#idx_3 . Thank you!
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Something like 80% of ER+ tumors are also AR+
ER-, not as common to have AR+
Also, AR+ has levels, just like ER+ does. The higher the AR+, the more likely you are to respond to a SARM like enobosarm.
I know some women on here got AR test results as part of routine testing.
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my liver has been in great pain for several days now. What are your strategies for controlling pain in the liver? I'm waiting to hear back from my care team today but not sure what is good for them to offer
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werone,
I last did Foundation One in 2020 and there was no mention of AR status. Guardant 360 uses blood, not tumor samples so that test failed to identify most of my genetic mutations. No mention of AR status in that 2021 report either. The only report I have that included AR positivity was Caris. Also had that done in 2021.
Hugs, Susan
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moth: I am so sorry that you are in pain. I hope your team will find something to help you.
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Savaloko, liver transplants are not an option for metastatic cancer. As discussed in other posts, once the cancer has spread beyond one, maybe two very localized areas there is no clinical benefit to surgery. I know you are hopeful that surgery is the answer. Look for oligometastatic threads.
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sadiesservant
I understand you. But I know that there are cases when operations are performed at stage 4, even if it is in two organs. It happens that in one organ it leaves, and the second one is operated on. So why not a transplant? I'm just curious. Has anyone tried this or is it just forbidden?0 -
An organ transplant is highly risky without having systemic cancer in the body, and with a limited number of organs available for those on the waiting list at any one time, a cancer patient would be unlikely to receive one. Also, the anti -rejection medications have to be taken for rest of life and those are no picnic. My parents neighbor got a double lung transplant and his body couldn't handle it and he essentially begged to die after 9 months because he was tired, in pain, and always in the hospital for something.
All of this is about balancing risk of procedures with quality of life. If they could cure the cancer by operating that would be standard of care, but they can't so its not an option. Ablation or small surgical removal of some tissue maybe in certain instances but beyond that the treatment has to be systemic.
Moth, I'm very sorry to see you are in pain from the liver mets and hope someone can come help give some proper advice and encouragement soon!
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But the liver is much easier to transplant than the lungs. And if a person is really bad, then why not consider it? The liver is the most important organ that filters all the muck.
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Hi Savoloko,
This thread is for those of us with liver mets, some of whom are struggling at the moment. Can I ask that you stick to the thread you started on surgical removal of lesions rather than spinning this thread into a discussion of something that is neither feasible nor effective? I know you are seeking information but liver transplant is not an option. Thanks!
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I'm all yellow from bilirubin and my liver numbers are crazy high. I'm scheduled for new chemo (line 3) on Thursday but my oncologist almost wanted to take me off...which would mean what? Hospice I guess 😫 I'm so angry. I said to keep the chemo scheduled on Thursday. I will repeat blood work tomorrow. I'm hoping it will be less crazy
I put up a picture of my lab results on both my blog today and inside the stories on IG if anyone is curious about how bad my liver is...
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Moth we spoke...but I didn't realize you are jaundice?? Wow. im sorry. will they even let you start chemo with your numbers that high?
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nicole, yeah I'm yellow from jaundice, though better today than yesterday. I don't know what is happening. She didn't really want to give the chemo but i insisted. Hope the blood work is better tomorrow.
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moth - I pray for wisdom for your doctors and strength for your body to continue this fight. Know that you have the support and love of so many on this forum. Please keep us updated. Peace.
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Moth, oh no. I was so hoping things would improve. How is your pain? Damn, damn, damn! We’re all here… holding you close and praying for things to turn around.
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Dear Moth, uhh, we're so with you. I always read your blog - what a great source of information, emotions, pictures... My wife's numbers where same like yours in the beginning but were turned around instantly after first two chemotherapies. We are all amazed by your stamina and fierce approach - I also agree with you 100 % that you should try the new combo tomorrow. Could your doctors try to "wash out" your body with some ringer infusions before chemo - if something is blocked it could help bring down your liver numbers quickly? Could they head you to Leronlimab clinical trial (you are in Canada, and I think the trial is Canadian)? If we could help somehow - just tell us, please.
Saulius
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