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Anyone else with just liver mets

is there anyone else on the board with stage IV only in liver? It seems everyone else has liver and….bone,brain,etc. I’m not complaining but at age 77 keep wondering what’s next or if we are missing something.

I feel so sad for the young women and feel I’ve had a full life and I know where I’m going when I die. Not in a hurry as long as I have qol.

Comments

  • seeq
    seeq Member Posts: 1,083

    Ohionan - I am also liver mets only. I get the idea it doesn't usually go to liver first, but here we are. People are are usually a little freaked out with progression to liver - I guess we don't have worry about that shock. Lol. Forgive my dark humor.

  • ohionana1605
    ohionana1605 Member Posts: 67

    seem, thanks for replying. I guess we are the unusual ones. How do you feel? I don’t feel much pain or discomfort except for my abdominal hernia now and then. Interesting we are on different drugs. I get Herceptin I’ve every three weeks as targeted and take oral Letrozol daily as AI. But because I’m so old (77) I don’t have a lot of energy. And I appreciate your “dark humor”. Hope you have a good day. Hot and humid in Ohio.

  • seeq
    seeq Member Posts: 1,083

    Ohionana, Since you're on Herceptin, I'm assuming you are HER2+. It sounds like the Herceptin/Perjeta have been real game-changers for HER2+. I'm HER2-, so that explains the different drugs.

    I felt great when I was dx'd. I don't feel as great now, due to the SEs of the two drugs (fatigue, joint pain, Big D); but I can manage them pretty well most of the time. And, hey, it's keeping me alive, so I'll take the trade. I'm 60, so still hoping for (at least) a few more good years.

    I suspect my 3-year run on Verzenio is coming to an end. Scans are starting to show something in the liver again, but it's not very clear, so we're waiting and watching, and scanning at 3 mos, instead of 6.

    It's just hot, hot, hot, here - triple digits, but, thankfully, not too humid. I moved to north Texas from Florida, so I appreciate the drier heat. Stay cool. 😎

  • keris113
    keris113 Member Posts: 45

    I am liver mets only as well right now. I was diagnosed de novo in March 2023 and am on Kisqali/anastrazole and Lupron. Not sure why it went to the liver right away, agree that it was a shock. Have not been symptomatic thankfully, just some side effects from the meds- mainly fatigue. Also just a lot of anxiety and depression over being diagnosed and this process.

  • seeq
    seeq Member Posts: 1,083

    Keris113 - it is a real shock. It helps that you're settled in with a treatment plan. Have you had your first scans since starting treatment? That was probably the thing that calmed me the most - real evidence that the treatment was working, and working well. By my second scans after starting treatment (71/2 mos),, I was NED - that really helped

  • keris113
    keris113 Member Posts: 45

    I haven't had scans since starting Kisqali, those will likely be at the end of this month. I did have scans right as I was starting Kisqali that showed shrinkage, which was likely from being on AC for 4 rounds when they thought I was stage III (before I had CT scans that said otherwise). I hope that these upcoming scans show that the Kisqali is working as well.

    That is great to hear that you were NED after a few months! Hope that your upcoming scans go well and that you can continue on the same treatment.

  • ohionana1605
    ohionana1605 Member Posts: 67

    thanks for replying. Seeq, do you like Tx better than Fl? What precipated your move? We moved back to Ohio after living in NC 20 years and loving it. Thought we should be near our daughter after my initial dx in 2013. Been a big adjustment. But nice being near grands.
    Keris, I certainly understand the anxiety and depression. I struggle sometimes too. But take meds that help. I don’t see a profile for you. How long have you been dealing with this?

    Wishing you both a good weekend.

  • seeq
    seeq Member Posts: 1,083

    Ohionana - I like where we live. We retired and moved closer to family. My daughter transferred to Ft Worth (2 hours away) right after we got here - it was already in the works, we were just faster. Lol. My stepdaughter lives about 4 hours away. My son is active duty and is in El Paso (9 hours), now, but transferring to Colorado soon.

    I live in a very small town, and what I miss the most is our social life. Having the kids and my grandson closer is the trade-off.

  • keris113
    keris113 Member Posts: 45

    @ohionana1605 I was diagnosed in March 2023. Initially was diagnosed as stage 3 in January but after initial tests was determined to be in my liver, so technically am de novo I guess. So have not been dealing with this for very long. I have been taking meds for both depression and anxiety, trying to find something that works a little better that also doesn't interact with other medications. It has all been a struggle. I am also working full time which has been adding a bit to the emotional overload. Sorry to dump here on this, it's not really related to the original question.

  • seeq
    seeq Member Posts: 1,083

    Keris113 - dump away. This is exactly the right place. My job was very stressful and I medically retired as early as possible. I'm not sure if that's an option for you. Social Security will fast track your application with Stage IV liver mets. But, there's a 5 mos waiting period for benefits and a 2 year waiting period for Medicare (if you're under 65). Of course, even SS and my retirement, combined, don't equal my working pay, but I really wasn't able keep doing my job.

  • keris113
    keris113 Member Posts: 45

    I'm not there yet but obviously thinking about it for down the road. My job can be a little stressful but I want to work for as long as possible. I am 37 so am not close to retirement and am worried about the financial and insurance about things. Trying to tell myself not to worry until I need to but it is a lot to think about and although I don't want to worry, I also want to be prepared.

  • seeq
    seeq Member Posts: 1,083

    Keris - I agree. Worrying doesn't help. It's good to think about being prepared, and there's a difference in that. I wouldn't have been in a position to retire at your age. I was still a few years from when I planned to retire as it was.

  • beckymd
    beckymd Member Posts: 24

    I just learned last week that my PET scan shows a lesion on my liver. Tumor marker had been going up after being NED for 6 years. Am currently on Faslodex, but will now add Xeloda. Hoping for positive results and few side effects.

  • ohionana1605
    ohionana1605 Member Posts: 67

    beckymd, sorry you find yourself here after 6 yrs NED. Sure hope the Xeloda does a good job with minimal se. Keri’s, dump all you need to. That’s why we’re here. Wish you all a good day.

  • paddlinlou
    paddlinlou Member Posts: 10

    Good to know I’m not alone. I was dx in June with liver mets single lesion. I had an ablation in July and started Faslodex injections. Last month started Kisqali and after only two weeks my white count tanked. So I’ve been off of it for 3 weeks and just started it back yesterday. I’m a very active 62 yr hiking and skiing.

    These meds are really depleting my energy level and am wondering if this will level out? This is much different than my initial breast cancer Tx at least that had a beginning and an end.

    I feel for all of you in this situation.

  • lady.hope
    lady.hope Member Posts: 3
    edited December 2023

    Hello. I am a newbie here. Just diagnosed with stage IV breast cancer. A single lesion was found in the liver 2 weeks ago. I am still trying to figure out the sudden changes in my life. A CT scan that was done for a completely irrelevant reason reveal that cancer metastisized in my liver.

    I was on letrozole + lupron or zoladex for almost 5 years and everyting was great. I almost forgot what I went through.

    Now I am swithcing to Faslodex (had the 1st shot yetserday) + Kisqali + Zoladex.

    I am 50m , divorsed mom of a teenager and working full time job.

    You have a great support system here and I really appreciate all the experiences you share in this community.

    🤞 that kisqali + Faslodex will work for me and that side effects will be bearable cause I have a pretty busy life