How are people with liver mets doing?
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Dear Husband11, firstly, I am the big advocate of ultrasound in skillful hands and I know that ultrasound can see and evaluate cirrhosis and at what level the liver is affected. Also some other "markers", like ALT, AST, ALP, BIL, GGT, etc. can make it possible to determine liver state of being. Regarding "inevitability" (without much proof) - I absolutely disagree with your MO, as there are thousands of people who take these drugs for 5-10 years and their liver is just fine, so there should be ways to get around this issue. Crossing my fingers for you guys,
Saulius
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I just saw on the In Memoriam thread that 50sgirl has passed away. I am heartbroken. I've known her and chatted with her on this forum so many times and now she is gone. Her last post was to susaninsf, and she is gone now, too. 50sgirl was such a beautiful soul; always very kind and thoughtful in all of her posts. May she rest in peace.
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That is very sad to hear about 50sgirl, and I agree with you 100% on your description of her. She will be missed.
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oh man... 50sgirl now...
. The other day I was counting...I have now known over 12 women gone.. and about 6 in 1 year...on here. What about Kattysmith??0 -
husband - I’ll be praying for the best possible outcome.
Candy - you’ve been stage 4 since 2017 and this is your second line? I’d call that a win! May you do the Lynparza Lindy for many more years.
It’s always hard to lose another member. The bond we form with members on this forum is special and the support and advice is priceless making a loss just that much harder.
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bsandra-I think the lack of newbies is directly related to the poor functioning website. Those of us who used to rely on it might post some, but I can't imagine newly joining a site this poorly conceived or executed.
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nopink2019 -I fear you are right. I know I read and post less due only to my frustration with the “upgrade”. So sad. I wonder if the folks in charge understand what a disservice they have done to the breast cancer community.
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I am heart broken about Lynne (50s girl) such a kind supportive soul. so many gone
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I'm a liver 'newbie' who introduced myself on page 1964 December 10, 2022 and gave an update last week February 4, pg 1974. The thread that is getting zero traffic is PIQRAY.
Frequently, over the years, I've observed that people who come to this website are the ones with problems. So, everyone is coping well with their visceral disease and taking alpelisib? I don't think that is the case.
We're supposed to be getting another rework/improvement of functionality here but it's not clear whether navigation or operation will be streamlined.
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Vlnrph- Tina2 just posted a new thread asking about Piqray saying the thread was so quiet and she had questions. She will start it soon. I have never taken Piqray- did tell her I heard about high blood sugars and rash from a friend on it- maybe you could reach out to her.
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Thanks for the 'referral' nkb! I found Tina2's new topic simply called “Progression and Treatment". The moderators offered to add Piqray to the title. She has lung mets. I insisted on starting at 200mg daily, not the maximum tolerated 300mg.
I told her it's advisable to start taking an OTC antihistamine such as loratidine (Claritin) now in order to minimize any rash that may appear. Yesterday, my endocrine consult agreed with the regimen of metformin 500mg twice a day & Jardiance 10mg that the oncology team hasprescribed.
Long term insulin use is not helpful to control hyperglycemia due to alpelisib's mechanism of action. I suggested a low carb diet too. I'm a retired pharmacist anxious to stay on this drug since the side effects of my 3rd line may be worse.
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Hi vlnrph,
I suspect the issue is that Piqray is not widely prescribed. Here in Canada, they no longer routinely test for the mutation as they didn’t see the results they need to justify it. That’s not to say that Piqray doesn’t work for some people but the overall efficacy didn’t meet their criteria.
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I have had liver mets a few years now…I continue to go easy on my liver with dietary and getting supplemental support while talking to it (yep)…and remembering how large and strong it is.
That being said my markers got highest ever and my tumors grew substantially end of summer last year making my liver take up every spec of space causing distention (looked pregnant) trouble taking full breath or eating full meal…due to crowding in my belly.
Started Enhertu in Sept…markers plummeted as well as mets…so far so good.🤞
I share all this because I was super scared in beginning…it is a vital organ after all…and made mistake of reading online.
So, it is a ride of emotions but it is doable!
Hoping you find a good match!🌬️❤️
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jron- I’m thrilled to hear that Enhertu is working its magic. May you be able to tolerate it for a long time while it continues to wipe out your cancer.
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Jron, I love the idea about giving the liver a pep talk! Do you mind sharing which supplements you take and what your previous treatment regimens were?
I plan to ask about Enhertu at my 2nd opinion appointment next week. My current oncologist seems to think it would be way down the line for me however I might prefer having it sooner.
Sadie, with the price of PIQRAY (comparable to the CDK 4/6 inhibitors), I can understand why Canada had high expectations for effectiveness. I tell people it costs the same as Verzenio or Kisqali but we're not seeing ads for it on TV…
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Hello All, I was wandering if any you have had experience with radiation to your liver. I have always had dull pain in my right side, but was manageable with very little pain meds. After my last ct on January 3, it showed tumors started reducing with the Xeloda. The very next week I started having intense pain. They did another scan due to increase in liver enzymes. It showed that I had a block bile duct. They placed a stentin the duct. It has not helped with the pain and been told to just increase my pain meds. However, they are now sending me to a oncology radiologist to see if doing some radiation on the tumors would help with the pain. I tried googling it and some information found that radiation could also damage the liver. If anyone has experience with this, I would greatly appreciate any advice.
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Kgelee.... I don't know about when they are in a duct..but Y90 is very effective..I have also had microwave ablation but not in a duct... I think you might do better in the Liver procedures thread...
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Thank you. I will check out that thread. I did realize there was one. Again thank you.
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I just want to let you all know... I had stable to decrease in lungs ..but... progression in liver... from 10-15 mets to 15-20 mets...
. David and I are trying to absorb all this..will talk to doctor tomorrow.
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nicolerod, my thoughts will be with you tomorrow. I sincerely hope your doctor has a plan to 'get' those liver mets, so they too are stable or decrease.
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nicolerod - Please keep us updated. I’m rooting for the best possible outcome. Hugs.
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nicolerod -
Will be thinking of you tomorrow with fingers crossed that there is a solution.
Eleanora
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Uh, dear Nicole, we are all here with you. It is just crazy how a therapy can work perfectly in one organ and fail in another:/ Different micro-environments. Can something be added to keep the lungs improving and working in the liver? Hugs hugs hugs,
Saulius
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My thoughts are with you Nicole. You’re a fighter and I know you have been exploring other trial options. Sending positive thoughts that one of those is the key to beating back the liver mets.
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So sorry to hear that Nicole. I am praying for a effective plan for you. Hopefully the Oncologist has some insight.
My wife had to go back to emergency and get her ascites drained again. Almost 5 litres again. We spoke to her liver specialist, and he disagrees with the Oncologist, that this is simply some progression of the cirrhosis that was triggered by her treatment 5 years ago. He agrees with me, that this is most likely a new development resulting from the currently active cancer. The Onc didn't think so, despite rising tumor markers. Now she is on holidays, and we can't arrange the next treatment. I feel let down by her. Her perspective, that this was inevitable and unrelated to the cancer, is a view that denies any hope, or evasive course of action. So, of course she delayed any new treatment, and went on holidays. If she is wrong, and I and the liver specialist think she is wrong, she is avoiding an evasive course of action, and instead simply chalking this up as fate, and unavoidable.
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Husband - can you get a second opinion somewhere? Here in the US they are usually not covered by insurance. I have gotten mine at UCSF- near me and it has run $500-900. she has always agreed with my MO- so I don't do it much anymore. You can get them many places though.
No one takes her place while she is on holiday??
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Thanks NKB. The Oncologist told us she wasn't comfortable with having another doctor handle a request for change in medication. For some reason, she pushed my wife into not proceeding with the plan to change to xeloda. She said that would close the door on verzenio, but to be honest, verzenio isn't working if my wife's tumor markers are rising, her liver is developing ascites, and the drug isn't tolerable. But then, we get into the argument as to whether its the cancer (my opinion, liver specialist's opinion) causing the ascites, or whether its some inevitable progression from what happened 5 years ago (successful treatment with xeloda, but massive die off of cancer cells, disfiguring the liver).
We don't have much options here for a second opinion unless we 1) Go to the states and pay 2) switch oncologists. The problem is the lack of options here in Canada.
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husband11 , what a nasty situation your wife has been left in. I am no doctor but I think I agree with you. If you went to an emergency care unit wcould you get temporary access to another oncologist that way?? In England you get to see the duty doctor. My thoughts are with you both.
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husband11: surely you are entitled to a second opinion, including a change in oncologist. .
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Our system is so backed up, that by the time we get a new oncologist or second opinion, the original oncologist will be back from holidays. My wife intends to switch medications to xeloda. If we follow the line of reasoning of the current oncologist, then we are giving up hope. She will allow my wife to switch to xeloda, but unfortunately she brow beat my wife into putting it off, and then by the time we spoke to the liver specialist, who agreed that it wasn't the old liver disease acting up, but that it was more likely the cancer, she was away. It's an unfortunate delay, but I think its now unavoidable. Upside is that with my wife off verzenio for a few weeks, she will hopefully get stronger. Perhaps the exemestane alone will keep the cancer rate of growth slow enough, until we can beat it back down with xeloda.
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