How are people with liver mets doing?
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Dear Katty&Moth, thanks for the update on Arolsson - she's such a fighter. I know June was crazy for you guys, so, again, thanks for not forgetting about others.
Moth, so great you are feeling great! Nicole... like always... prayers, may prayers towards you and your husband - you guys are fighters and will find a way, I am sure. I will insert an image from latest case-report by Alex Prat that shows how important it is to target exactly what you need to target:
"Patient with an advanced breast cancer ER+/HER2low progressing to ET+palbo, taxol, cape DNA:TP53mut, PIK3CA H1047R, HER2 L755S RNA:HER2-enriched No response to lapatinib+trastuzumab but response to alpelisib".
Brilliant pCR!
Saulius
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Candy. Yes I was on Ivrance/ Femara when I had my first y90 in 2017. Yes, my MO kept me on it for another year because it was keeping my lung mets stable and the liver mets were stable because of y90. For my 2019 y90. I was put on Faslodex while I had the y90 procedures. My lung mets responded for a year before it failed.
Nicole, you will be the only other BCO that I know of to have a second y90, except for me. You go girl
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Kabuki, in your pocket for your scan tomorrow. You didn't mention what dosage you're on. Some people find a dose reduction necessary due to SEs, and the Verzenio is supposed to be effective at a lower dose.
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Hi all,
As you know my mum has 2 big (5cm) liver mets and 5+ smaller ones. Her tumor is Er-, Pr+ and Her2-.
Recommended therapy for her is Letrozole plus Ibrance followed by cyber knife and thomo therapy. However, due to extensive mets in her liver and most likely other places (will do a pet scan in the future) and Er- histopathology report, the doctors she's seeing in a private hospital in Greece want to put her on immunotherapy, most likely Tecentriq.
She's starting with letrozole + ibrance today.
Tecentriq is crazy expensive and I'm scared it won't work with her. I want her to avoid chemo because she still believes chemo=death. I simply know that if she can avoid chemo for now she will be able to accept this new diagnosis more easily.
She's so scared and already really hopeless and idk what to say to make her feel better.
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daughter of- you are in the scary part of treatment now. It’s hard especially when it isn’t you and you don’t feel like you have control of anything.
I want you to know that while chemo is har and has earned its reputation, not all chemos are the same. People respond differently to different treatment regimens. Sometimes chemo is too much but other times chemo is life saving.
As someone who has been battling both brain and liver Mets for 9 years, I would say chemo has saved/extended my knife. I have also been able to live a very fulfilling life. It isn’t always easy, but I’m still around 8 years after they expected.
I am not hormone + but wanted to give you some hope that even if chemo is necessary, it doesn’t mean it’s the end.
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DaughterOf- Can you explain thomo therapy. I do not know that term. I do not know what advise to give you---sorry.
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Daughterof, Tecentriq is meant to be given with chemo. I've been on it since March 2020, first with Taxol and then since November with Abraxane. And yes, it is expensive.
I can see why they're considering it, with her ER-. Remind me, is the PR very low? Because then they'd sort of be treating her a triple neg... but again Tecentriq alone is not standard of care. It's approved in the US with Abraxane only but offlabel others do use it with another chemo backbone, and I've also heard of people starting on tecentriq+abraxane and then dropping just to tecentriq, but not starting it alone.
For me, chemo+immuno is life. It has made me so much better! I exercise, I walk with my dog, I train agility with my dog, I take drives, do stuff around the house, putter around my garden etc. This is me just a couple days after chemo infusion (i'm getting chemo every 3 weeks now; tecentriq every 2 weeks). It's not as high impact as I used to do but I'm not debilitated. https://www.instagram.com/reel/CQCq3gpAngM/ I just sometimes need an extra nap.
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Has anyone had experience with liver enzymes increasing on Tamoxifen? I just spoke with my GP. Ive been having some Upper GI issues , early fullness , ect . I had blood work done before my Zometa yesterday and so I called the Dr. and he said my AST was up ( i think he said 163? but i can't remember. Just that it was a significant jump from End of may since upper end of normal is 37 ) ALT is 88. Up from 66 but he said it's not significant. Now I'm just concerned that things are happening fast again.
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Hi all and thanks for replying,
My mum is strong progesterone positive (allred score 6).
Thomo therapy is targeted radiation, similar to cyber knife. Here's more about it https://www.accuray.com/tomotherapy/
Moth, you look so beautiful and happy ❤️ I wish my mum wasn't so scared of chemo as I am aware of its benefits and how helpful it can be.. But she absolutely refuses any treatment and I barely convinced her to try letrozole plus ibrance, telling her she won't lose her hair and it's absolutely not chemo.
She was on FAC and there's a lot of stigma surrounding chemo where I'm from.. She thinks it equals a death sentence. I'm a doctor but I can't convince her otherwise.
The doctors in Greece didn't mention Tecentriq goes wirh chemo. I will ask.
I just wish there were more ppl with Er - and Pr+ who could share their experiences with Ibrance and AI. ☹️
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Moth - Wow, you go girl! You got some awesome moves there! Your video put a smile on my face, thanks for that! I will be starting immunotherapy and chemo soon. I will be on keytruda and Taxol. I get my port placed tomorrow.
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DaughterOf- I am now ER-/PR+, but I was ER+/PR+ when I first started Ibrance/Letrozole. I got 3 1/2 years out of I/L before my latest biopsy showed the flip to ER-. I am in the middle of discussing my next options so I do not know if I will be going off I/L even with the flip of the ER status. Sorry I cannot help you there.
I am going to put the Tomotherapy on my list of things to discuss with the RO, when I get there--insurance hold up right now. Wonder how it differs from SBRT? I need to research this. Thanks for the link.
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MOTH- love your groove 💃🏻💃🏻💃🏻
Thanks for sharing your video!
Dee
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Candy, glad I could add another question to your list. Staying informed is important.
I don't think even the best oncologists are certain of PR role in breast cancer. I'm really scared I + L won't work with my mum..
We spoke to her Greek doctor again today. He wants her to do a pet scan and a full body mri + liver enzymes before he can say if she's still a candidate for cyber knife and thomo therapy.. He says her liver needs to be in optimal condition to withstand the destruction of the tumor with the cyber knife. I'm honestly so scared.
Her diagnosis alone took nearly 2 months!!! The doctors were puzzled because her tumor markers were normal and waited until biopsy to tell us its not looking good.
I'm so upset with this! What if she can no longer get radiosurgery because of negligence..
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Kabuki, my heart goes out to you. You are struggling with the fact of recurrence as well as with the effect the new drugs have on you. I guess I want to say that although some level of fatigue is always there for me, and I have had times when everything is a struggle, I have found that there are also times when I feel pretty good or fairly normal. Though things are really hard right now, you may enter into better times. In the meantime, lower your expectations to reduce frustration, and be kind to yourself. Prioritize the essentials such as having meals to eat, and anything that brings you joy or contentment. The rest, let it go, save it for later, or delegate it to someone else (paid or volunteer).
Candy, unbelievable. No, sadly,believable. May your day of phone calls result in timely treatment. It is ludicrous that they would allow you to go off your Lupron schedule.
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I feel better than I have in a long time. On my trial 1 1/2 years now. Scans look great. But I am worried that my tumor markers have started a slow, steady rise. I emailed my onc about it.
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Another day of multiple phone calls to the Insurance company and the docs office. Cancelled my Lupron injection for tomorrow (Wednesday) due to no prior auth yet. Rescheduled for Friday and hoping will be authorized by then. Still working on the Ibrance prior auth but have pills till next week, so hoping will be hashed out by then. Exhausted by it all today. I lost my cool with the insurance company, and my PCP nurse lost her cool with me-- said she had other things to do but sit on the phone all day about my stuff. Day 3 of calls will start early in the morning--- Insurance company opens at 7am and I plan on calling them first thing. I can be like dog with a bone--- Hey I gotta isolate at home due to increased Covid cases in our area so I might as well do this.
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SeeQ, I’m on 150mg. I have a history of being sensitive to drugs and usually require the lowest loading dose.
Shetlandpony, Having no energy is tough. I am in heart failure from Adrymiacin and left sided radiation from my primary cancer. The meds for blood pressure and heart made me very fatigued so the cancer fatigue has been a double whammy.
I’m wondering what the oncologist was thinking when he said that they can help with the fatigue. I want a better quality of life.
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kabuki
You deserve QOL and should ask for help with severe fatigue. I was offered a Ritalin like drug, but my fatigue decreased and I am trying to find the right mix of exercise and rest, so I did not take i. My sister has severe fatigue from opdivo for metastatic lung cancer and uses the drug to help with energy. Maybe you can ask your MO or palliative care team to assess you. I don't know how a stimulant will affect the heart but it may be worth asking. Hope you get relief
Dee
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That heart damage does complicate things, doesn't it, Kabuki? I was thinking that my friend has tried various blood pressure meds, and some cause more fatigue than others. I wonder if you could talk to your cardiologist about trying one less likely to cause fatigue. I agree with Dee that it would be good if you could get a palliative care evaluation, sort of a big picture to come up with ideas to help you feel better. Palliative specializes in mitigating symptoms and side effects.
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AlabamaDee,
I’ll ask my oncologist about it. My cardiologist would have to be consulted. His office is moving and he’s not available until August.
Shetlandpony, the emergency room physician did not like the primary care physician that my insurance gave me and had me switched to an internist that is also a palliative and hospice doc. I see him next week. I was given a prescription for morphine from the ER doc but the nausea and vomiting side effects were intolerable. I cannot tolerate any opiates. He wrote me a prescription for Celebrex which helps somewhat and is tolerable. There have been studies with Celebrex and cancer
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Dear DaughterOf, first of, definition of chemotherapy is "The therapeutic use of chemical agents to treat disease", so basically all drugs in modern history are chemotherapy, with different mechanisms of action. Chemotherapy in oncology is simply one class of drugs with different subclasses. Most of cancer patients who are alive today and live fulfilling lives were treated with chemotherapy. Some of the newest (and very successful) targeted therapies (like ADCs) also deliver chemotherapy to cells. So... there's no need to be afraid of chemotherapy. Side effects is a different thing but, for example, I know one woman who did >20 cycles of docetaxel (one of the strongest ones) and her blood counts always were good, she was feeling super well, worked, did light sports and was traveling between infusions. My wife had 18 cycles of docetaxel and was working 75% load as an accountant of pretty big company. So, basically, you never know how your mom would feel on chemo. One important thing, from my experience, is time. Waiting with this disease is not good. I'd say, get an exact plan, start one of the most recommended regiments, and then you'll have time to think and to explore other options. Wish you all strength, Saulius
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Shetland Glad your scans look great. That trial has worked well for you.
Candy Wrong, just wrong. I cannot believe that nurse spoke to you like that. Shame on her. Keep making those phone calls if that’s what it takes
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thank you moth that would be great. No rush. I’m doing pretty good taking things slowly and giving myself permission to rest when I’m tired. 1 more week till I know what’s next. Also have a lot of questions for the Doc. Big hugs and wishing all of you the best.
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Thank you for that AlabamaDee. I need all the hope I can get. I have had Mets to the bone for 2.5 years but the liver discovery is new and frightening, but I’m doing my best to stay strong for my 4 year old who has autism. Also for me, I’m 38 and haven’t done much living yet. I never imagined anything like this could be a factor for my life. So anyway I really appreciate everyone’s kind words.0
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you go , moth !
Very nice
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BAP - can't help you with the enzymes question. Hope you get some answers/peace.
lafsunshine- how did the port placement go? Are you PDL1 positive? Is that why you are getting keytruda and taxol? I know someone who got 100% response from keytruda monotherapy.Dee
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no real answers yet sadly. Just more anxiousness.
My MO finally got back to me and agreed to move my CT up from Aug 11. We well keep the mri there to try and keep somewhat of a schedule. The AST she felt was the only thing really standing out and the rest of the enzymes are considered stable. She said it could be the tamoxifen and the only way to know is to discontinue for a few weeks and see if there’s improvement — that of course is unless the scan shows progression already (in 8 weeks) then, and even though she didn’t say it , the tamoxifen isn’t working anyway. Not good . She said it could literally be anything . I’m really hoping we can get the scan soon as the waiting is so hard. And physically , I feel full, I feel epigastric discomfort constantly .. which is serves a reminder that something isn’t right
I also have a naturopathic oncologist And he was supportive of the decision of taking a break but asked “well if there’s more shrinkage and stability , and it’s the tamoxifen , then what do we do ?”
He also mentioned the AST could be the pseudocirrhosis progressing but never got into it. So that’s just making me a mess. And he actually did bring up “if there’s a tumour growing already , and causing discomfort, this could be trouble bc hormonal therapy isn’t working “
So I’m a bag of anxiety. And to top it all off , my house is being eaten by carpenter ants so it’s just one more thing on my to do list of things that are pushing me further into debt. I could cry.
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Nicole, I hope your liver biopsy today went ok! I'm thinking of you.
B-A-P - glad you got the scan moved up but poooh, I don't like the rest of it. All that uncertainly is exhausting. & stupid carpenter ants is the last thing you need. I hope you catch a break soon.
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very much so. I’m just hoping it’s all tamoxifen related OR an actual GI issue that can be fixed. It’s all very overwhelming. I’m 33 and truly felt like with my good response to chemo both times, I could get decent longevity. But it’s just a set back. Can’t dig my grave yet. Though it’s hard not to focus on anything else.
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just back from a day at the hodpital. Turns out when your hemoglobin is 6 and your vitals are 92/57 with a heart rate of 118 you get to stay and get a blood transfusion. I am do thankful to my nursing staff who hounded the blood bank yo locate not just 1 bag of blood but 2 that match my very special blood type. They saved me an additional trip to the hospital on Friday and are it so I can watch my daughter play in her soccer game on Friday.
I’m tired, have a laundry list of medical appointments to make ( (ent, OBGYN, GI,) to name a few. Grateful to be well enough to go home.
As always you are all in my thoughts.
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