How are people with liver mets doing?
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Husband - I’m so sorry to hear this. I’m glad you and your daughters were able to be by her side. Thank you for all you and your wife have shared to help all of us on this forum. Sending love to you and your family.
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Hsband11 - I am sorry to hear this news. You were a vigilant advocate for her and I hope that you and your daughters can find some comfort that she is now with the Lord and free of pain and suffering. The Lord bless and keep you and your family.❤️
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@husband11 , I’m so sorry for your loss. You were such a great advocate for her!
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Husband11— My thoughts are with you.
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@husband11 I’m so sorry to hear this. Even in the short time I’ve been here I’ve been able to see what a great advocate you’ve been for her.
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husband, my heart breaks for you. I am so sorry for your loss. Thinking of you during this difficult time.
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husband,
I'm so sorry for your loss. You were a remarkable advocate for your wife. Hope you find some comfort knowing she is now at peace and with the Lord. Thoughts and prayers are with you.
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Husband, I am so sorry for your loss. Sending prayers to you and your family. May our Lord comfort you during this difficult time.
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Husband - I'm so sorry to hear about your wife. Sending lots of love to you and your family. You have been an amazing advocate and husband. Many hugs.
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So sorry to ear that, I was hopeful till the last. But I'm happy she was surrounded by you and her family and nkw rest in peace. Much love to you all
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@vlnrph congratulations on your scan! Good things medicines are working!
I also have liver and bones met snd capecitabine seam to work. I didn't have a scan yet, but my analysis have finally get back to normal and markers noonger have an *. So hopefully is a good sign is working. I got hfs though...but I don't mind.
So hopefully our liver met will all disappear! Best wishes and thsnk you for the update. I wish you good frstivity too! Take care!
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Husband11 - I am so very for your loss. It's good to know she had some good days, then had her family with her at the end. You have been a staunch advocate for her and I'm sure she appreciated it.
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Dear Husband11, my heart breaks hearing these news. You both with your wife were an amazing inspiration for us. May she rest in peace. Saulius
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Well ladies, after a hiatus (mostly) from this site, it’s time for an update. Although honestly, I’m still mulling over options and all my data points aren’t in yet. I started Enhertu last June after some pretty significant liver progression although thankfully, my liver enzymes etc weren’t that bad and I was still asymptomatic. Enhertu quickly cleaned up my numb left jaw, shrunk most liver lesions and kept my bones stable. It even cleaned up a small sore on my hand that has been there for over a year? Anyway, my body simply could not handle the full dose. 80% was better but still left me with too many side effects including depression. To say the least, depression made dealing with cancer in my usual matter of fact, level headed way difficult and even my husband told the doctor I needed a lower dose. So I’ve been at 60% and still hate it but I’m dealing with it. This is my most difficult drug yet. Last September showed an increase in my skull mets and 1 liver lesion who just won’t play nice. It’s growing very quickly. Right after my scan my husband and I took a trip for over a month to stay with my son so I just stayed the course with treatment. After returning, we did another CT (8 weeks apart) and that same liver lesion doubled again. I’m set to get another liver biopsy on Monday. The lesion they biopsied last June showed my ER dropped to 50%, PR 0 and HER2 positive. Once I get the pathology, the Caris results, know if I’m a candidate for liver directed therapy and the holidays are over, I’ve got a big decision to make. Do I move to Trodelvy which is my best chance for OS? I’m quite honestly tired of the fight. My Foundation One test revealed a PALB2 which qualifies me for Lynparza but will that do much good when my bone mets are extensive and I’ve got these naughty liver lesions? A few months back my MO said she would put me on Lynparza only if my next progression was minor but since then we’ve had THE QOL discussion. Or do I throw in the towel and live what’s left of my life? I DO NOT want to die a slow miserable death while still enduring awful treatment SE. My brother passed away last weekend at the age of 68. Not from cancer but his death was slow and miserable and took away so many of his dignities. I’m hoping for a quicker exit strategy. Pray for wisdom in my decision making. Hugs.
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rk2020- I am sorry to read your update. I am on Lynparza and have been for 2 years now. I know each person's experience is different, but maybe you should give it a try. The side effects that bother me are GI— nausea (no vomit) and "loose" bowels (not daily diarrhea, but not far from it). Mainly it is the nausea that is bothersome.
I did not have PALB2 mutation, but the BRCA mutation. And Lynparza is only my 2nd line of therapy, so I was not heavily pretreated. But I have liver and bone lesions.
Thinking of you, whatever you decide as your next plan.
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Sorry to ear that, I will also give it a try as @candy-678 say. It may be different for every one, but I will definitely give it a try. Than sometimes some medicine just work really well for some unknown reason...
I know there is always up and down...but sometimes for me the up are enough to keep going...
Than you will see... and there should eather not be any regrets or sens of fault if you don't want to do it anymore. Life belong to ourself.
Best wishes to you, whatever you decide to do
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rk2020 I’m so sorry to read about the progression. I totally understand the difficulty of Enhertu. I told people Enhertu was the devil. It was so tough on me. But some others felt fine… but that wasn’t the case for me. I am on a clinical trial now and it’s so much better QOL. But I was ready to throw in the towel on Enhertu. Maybe after a little break from it you will feel better and can find another treatment with a much better QOL? I will definitely pray for wisdom. I hope the Caris report gives you some guidance.
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Dear rk2020, uh, we understand how tired from this never ending marathon you are, so sorry for that… you being here with us is a big gift - just look how many times you stood for others, gave advice and made us feel better. Do I understand correctly that the most worrying part at the moment is the fast growing liver lesion? Sure, biopsy results are still not in but did you talk with the doctor about some possible local treatment to that lesion and staying on Enhertu? From what you wrote I see it as a very local progression, so maybe one can deal with it locally? SRS could knock it back with absolutely minimal side effects, minimal planning and your involvement, and let you stay on Enhertu. What do you think? Hugs,
Saulius
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@bsandra Thank you for your kind words. I’m seeing an interventional radiologist today to see if I’m a candidate for liver directed therapy. Not sure what he will think since I have several other liver lesions. I don’t relish the thought of staying on Enhertu. It may be the devil I know, but I feel awful on it. I’m already on the lowest dose but the accumulative effects are wearing me out. Nonetheless, once my test results are in, I will look at all options and then make a decision.
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Anyone with Y90 experience? What’s the good, bad and the ugly?
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I totally understand rk2020. I hated Enhertu that’s why I called it the devil. It made me feel terrible. I wasn’t on the highest dose either. I don’t have any experience with Y90 but when I looked for info. awhile back I found a thread here. https://community.breastcancer.org/en/discussion/comment/5554878#Comment_5554878
There was information on Y90 from people who had done it. I hope this helps.
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rk2020
I had dm you to see how you were. I hope there is something that makes it easier, I hate to see you give up.
All my love
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in my lasr scan in September, my liver Mets showed progression, so she took me off Ibrance and flasodex.
I have been on nothing since September. After blood tests onc prescribed Orserdu. Is anyone on it.
I haven’t gotten the prescription yet. Looking for funding. It is 25,000 per month. There were some delays with the pharma not seeing the onc orders and now getting a financial assistance form filled out by the onc onc is on vacation. I am on Medicare. Does anyone has any ideas. I live in Los Angeles California. I maybe knew this bc would kill me but I didn’t think because I couldn’t get medicationI had blood test on Nov 29 my tumor markers are 91 and have been that for 2 months
All my other Mets are stable on scan just the liver.
Any help, encouragement, etc is appreciated.
@rk2020 love you and hang in there with mePS I can’t get xgeva covered either on Medicare
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@mommacj Thanks for the link! It’s always nice to read about an actual patient’s experience. My son and his gf are flying in for Christmas this year and I wanted it to be filled with good memories and not about my cancer. I’m not thrilled about the Y90 scheduled for the 19th while my son is in town but I’m also scared to put off the Y90 any further. I want to treat my liver before it’s in crisis. So hopefully my SE of Y90 are such that I can grin and bear it and no one will be the wiser. 🙏🏻 We have reservations for a special Christmas Eve dinner. If we have to cancel due to my SE, it’s going to cost me $200 🤦♀️ and that would NOT make a good Christmas memory.
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@positive2strong I checked on clinical trials.gov to see if there are any trials including Orserdu. Drugs are free on trials. Unfortunately, the only trial that popped up in Los Angeles is for Verzenio + Orserdu in patients with brain metastasis. The good news is that you don’t have brain metastasis. The bad news is you don’t qualify for this trial.
But when I broadened the search to California, I came up with a study that has a few locations not far from LA. You don’t have a signature to remind me of your treatment experience but I remember you were on Ibrance for awhile. Check out this study and see if it interests you and if you qualify. Assuming that your tumor markers are accurate, it’s very good to see that they are stable even though you’ve been off drugs for awhile. Very good news indeed.
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@positive2strong I am in a clinical trial at UCLA and the medication is covered and visits are covered by the trial. They have a lot of different trials. You can go on their website and go to clinical trial and either call the clinical trials office/coordinator or fill out their form and they will contact you. I hope you can find something you qualify for they are great there.
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@rk2020 thanks I thought I had filled out a signature I will check and redo. I have only been on Ibrance and Faslodex since July/August 2021
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postive2strong,
There is a thread on BCO for Elacestrant ORSERDU. Not many have posted, but I've posted quite a bit to keep it active. There's also a Facebook Orserdu group that is very active: https://www.facebook.com/groups/1577378016092625
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Hi ladies! @positive2strong, here is the discussion that @weninwi mentions: Elacestrant (ORSERDU), and this research-news article from our main site that we thought could be of interest: FDA Approves Orserdu for Metastatic, Estrogen Receptor-Positive Breast Cancer
Best,
The Mods
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Time to offer another update. Having had a repeat chest CT right after Thanksgiving, the suspicious area looked worse so my oncologist wanted a bronchoscopy with biopsy before changing treatment from paclitaxel/gemcitabine to ENHERTU. The interventional pulmonologist must have missed the spot because no malignant cells were seen in the sample.
However, my CA 15-3 (which has been a reliable indicator for me) had gone up. The new therapy started mid-December at full strength with dexamethasone and 18mg of ondansetron to prevent nausea. Zofran worked too well, inducing constipation. Unfortunately, my hemoglobin tanked and I felt anemic all through Christmas, mostly laying on the sofa!
Second infusion last week was at a reduced dose & my tumor marker had come back down, an encouraging sign. Handling this cycle much better with an aggressive bowel regimen, I even went to a water exercise class but sat on the edge of the pool. Hopefully, my next scans will continue to show liver improvement and further clarify what is going on in the lungs.
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