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How are people with liver mets doing?

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Comments

  • candy-678
    candy-678 Member Posts: 4,173
    edited July 2021

    So here is a thought---- with Grannax, Nicole, and BevJen that had liver procedures, did they change your systemic therapy during the time you were stable from the procedure??? Grannax was stable liver wise for 18months--- was there a change in systemic therapy during that time? And BevJen, during the 1 yr after the first ablation was you on the same systemic treatment? My MO mentioned zapping the buggers and keeping me on the same systemic treatment. IF the systemic treatment is not as effective anymore, then why not change it? So new liver mets do not crop up WHILE we are zapping the current ones?

  • BevJen
    BevJen Member Posts: 2,341
    edited July 2021

    For my first ablation in the summer of 2019, I was just starting up on Ibrance and fulvestrant. I had been on femara from 2006-2019. My MO started me on fulvestrant prior to the ablation, and then on Ibrance about 4 weeks after the ablation. For the other ablations, I stayed on the same stuff. Took a short break from Ibrance (like maybe an extra week's break) each time, but continued on fulvestrant.

    I think from my reading there are different theories on whether to zap all liver mets that can be seen, or only to zap the largest and seemingly most aggressive one. That was what my doc choose to do (go with the largest most aggressive.) Seemed to work better the first time, I think.

  • karpc
    karpc Member Posts: 192
    edited July 2021

    Candy - my liver ablation kept my liver clear for 3.5 years. While I had little lung nodules that slowly grew over that time, it was wonderful to have clear scans in my liver for that long.

  • candy-678
    candy-678 Member Posts: 4,173
    edited July 2021

    Wow, KarPC. 3.5 years. Were you on systemic therapy during that time? Was there a change in systemics with the ablation?

    BevJen- I am going to ask about if they wanted to zap all 4 of mine, or the largest 1 or 2.

  • ninaca
    ninaca Member Posts: 232
    edited July 2021

    Bev Jen- Good questions. As of today I am still taking Xeloda, even though my markers increased dramatically but the PET was clear (Doc said he cleared it with the tumor board). In July 2021, My follow up PET scan after 3 months on Xeloda, showed new tumors were "resolved". Liver and colon mets were gone, and have stayed gone. My breaks- I went from 6 pills a day after 5 months on Xeloda (500 mg each) to 5 pills a day with an extra week off to recover from side effects (I'm still on 14 days on, 7 off). The break helped me get back on the drug. Only recently have I considered reducing my meds slightly (doc suggested taking one to two days off in the middle to ease symptoms to still be aggressive but not "whimp out" (my words) to overall reduced dosage. Last cycle I reduced it to 4 pills the last 3 days. He trusts my judgement. Over time my feet and hands have become hardened to what each cycle brings but find a new way to bother me, this time my left big toe (big toe nails are susceptible). Once I was walking on foam rubber strapped to my feet! I have a container of remedies depending on what is happening at the time. I enjoy the good days when walking is no problem and all I need is a good layer of Aquafor several times a day and maybe an Immodium for the diarrhea (only at end of cycle). Hope you get to tolerate the drug better, find the dosage that works best. Other people take even lower dosages.

    Candy- My ablation/surgery lasted 4 years, 2016 - 2020, before recurring Dec. 2020. I was taking Ibrance/faslodex during this time. Initially, in 2015 I had been taking Ibrance for a year before deciding on sugery- the tumor had shrunk to 16 mm x 12 mm, previously 2 cm x 14 mm. so I went for the ablation. My new liver tumors in 2021 were resolved with Xeloda in 3 months.

    Take Care All, Nina :)

  • kabuki
    kabuki Member Posts: 35
    edited July 2021

    I saw the oncologist yesterday. I’m starting the Verzenio/Fulvestrant regimen. He gave me a month of Verzenio samples and put a request in to my insurance for authorization for Fulvestrant.

    He gave me a choice of Letrazole or Fulvestrant. I don’t know if there are any studies that show one being better than the other for overall survival.

    I asked him what my prognosis range is and he said that there was a study done with oncologists predicting the prognosis of their stage 4 patients and they were way off with breast cancers but more accurate with more aggressive cancers such as pancreas.

    I had nausea and vomiting today after my morning dose but was feeling queasy before I took it. I was also given Imodium.

    He referred me to an oncologist at UCSF for a second opinion and to see if I qualify for any studies.


    I have been very tired and slept most of the day. The oncologist said that they will take care of the fatigue but did not mention how. I have no energy and everything is piling up. I can’t even clean house or finish my garden. It’s very depressing


  • karpc
    karpc Member Posts: 192
    edited July 2021

    Candy - Yes, I've been on systemic treatment the entire time especially since I had small lung nodules that slowly grew over the years. I have had regular scans of my liver every 3 months though and was always surprised the scans of my liver showed no mets for the 3.5 years.

  • Sheilaleximama-
    Sheilaleximama- Member Posts: 7
    edited July 2021


    hello to anyone reading this. I am new on here and it feels weird to read everyone's stuff without at least saying something. Not really sure how all this works. I found this site through A comment left on a TiKTok of someone dealing with what I'm dealing with in the hopes of getting some info on what's next. I feel completely in the dark waiting on my full pathology report of a biopsy done to my liver. The doctor confirmed it's a spread but then didn't have any more info and I'm left waiting 2 weeks to know more. It's driving me absolutely crazy. I can't sleep, my mind is going to the worse case automatically, and I have zero energy. I've also discovered that I have put much faith in my doctor and know very little about my own cancer. The questions to get my profile started stumped me. Like I know some stuff but I didn't even realize I was doing targeted therapy. SMH


    If anyone would be so kind as to give me any experience with liver Mets I'd greatly appreciate it.

    Dr. Google isn't kind and I about fainted when I saw the prognosis for liver Mets being 6 months. Like I literally had to tell my brain “Nope unsee that please" I can't fathom that right now. I have a 4 year old daughter who has autism and I'm doing all I can to get her all she needs with very little support. She almost won't let anyone else help her. Wow I had a lot to say and that just a smidge of what's going on with me. Desperate for a little HOPE.

  • lili75
    lili75 Member Posts: 14
    edited July 2021

    Hello,

    I am new in the Forum and I created a new topic : How long with Ibrance?

    NB : I am not allowed to post the link of the new topic directly in this message.

    Because I received few answers and see that this topic is very active, I wonder if you could reply to it. It may help sum-up all the strategies used for keeping Ibrance or after Ibrance

    Thanks very much,

    Love

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited July 2021

    shelialeximom- I am almost 9 years out from my liver Mets diagnosis. My youngest was 2 my oldest was 20 and I hade two in the middle at 5 and 7. The oldest just graduated from high school and the youngest fyom elementary school.

    Hope that helps as you navigate this most difficult time.

  • d37
    d37 Member Posts: 73
    edited July 2021

    shelialeximom, I was in your situation last year at this time. The waiting is the hardest part. Don't listen to what Dr. Google says, stay away! I'm sure a lot on the internet is outdated and not accurate. Everyone's situation is different but when I finally had all of the information and had my appointment with my MO, he reassured me that my prognosis was not as bad as I had feared and that there are a lot of treatments available. You're not alone.

    Nicole, I've been thinking of you. Everyone is in my thoughts. I do not post often but please know that I care.

    Denise

  • Sheilaleximama-
    Sheilaleximama- Member Posts: 7
    edited July 2021

    Thank you, yes that does help. I smiled and told my husband. I’m so happy for you as well. I pray your medicines keep working for you.

  • Sheilaleximama-
    Sheilaleximama- Member Posts: 7
    edited July 2021

    thank you for responding. I am hopeful thanks to all you guys comments. It’s so scary when you have no idea what this is trying to take over your body. I just want to take care of my daughter and live every moment to the fullest.

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2021

    shelialeximom - waiting is the worst. They may want to see more of the histology before recommending a treatment plan. Many of us here are multi-year survivors after metastasis. There is hope!

    Lili75- welcome to our group. We share experience, science articles and encouragement. You may know this- Ibrance is a cdk4/6 drug and along with an AI or faslodex, the combo is the recommended first-line therapy for MBC. How long you stay on the combo depends on how your tumors respond. Usually you will get a scan every 3 months to check on the tumors. Many respond right away and for along time, which is why it is first-line. Others like myself don't respond but move onto other systemic therapy.

    Kabuki- glad you are starting your treatment, but sorry it is rough. Let your doctor know your side effects and take the meds to help with the SE if you feel comfortable doing so. My clinic has a weekend nurse on call. I have reached out many times on a Saturday or Sunday when the SE worry me or I need advice.

    Dee

  • kabuki
    kabuki Member Posts: 35
    edited July 2021

    Thank you, AlabamaDee. I didn’t have nausea with last night’s or this mornings dose. I’m still extremely fatigued and hope that it’s temporary. To do the smallest chore is a big deal right now.

    I will check to see if the office has a weekend number. I’m going to call tomorrow and ask for an anti emetic

  • bsandra
    bsandra Member Posts: 1,030
    edited July 2021

    Dear All, I cannot stop thinking of Arolsson, JFL and Bliss... has anyone heard anything how they are doing? Saulius

  • Kattysmith
    Kattysmith Member Posts: 688
    edited July 2021

    BSandra,

    I sent Arolsson a message June 10th to see how she was doing. She was preparing for radiation on the spot in her spine that will hopefully release the nerve root that is keeping her for weeks on end. I haven't heard back from her since then and June was pretty stressful and crazy for us so I didn't reach out again. I'm hoping that things have improved for her as she literally couldn't move her back without being in excruciating pain.

  • moth
    moth Member Posts: 3,293
    edited July 2021

    Saulius, I have seen Arollsson on Twitter. She's just starting her 9th line, carboplatin. I haven't seen the other peeps.

    Kabuki, fatigue can be a combo of physical issues in the liver itself and depression. I was struck hard by it in early months of my dx last year. I did end up needing blood transfusions as my Hgb was low. Walking outside helped. There's a balance between rest and exercise that is hard to find but exercise does make things better. Make sure you're eating enough. Your body needs a lot of building blocks to rebuild the damage from the cancer and the treatments.

    Sheilaleximama, sorry you find yourself here. Prognosis depends very much on hormone markers and how you respond to the treatment. While it is impossible to predict how an individual will do, we do have large scale analysis of metastatic breast ca pts from the SEER database from 2010-2015 which shows survival curves based on hormone markers and number of mets. I can send that to you (or anyone else) by PM

    Lili, from international real world studies, ibrance/palbociclib PFS median was 26.4 months. https://pubmed.ncbi.nlm.nih.gov/31451366/ It is impossible to predict how an individual will respond. I know people who had to move on from it within a much shorter time. you can sometimes get a sense of how long people stay on. If you are looking for what comes next, the NCCN patients guidelines are available online. A poster here Bestbird also has a continuously updated ebook with the latest recommendations and treatments lines.


    No news from me, feeling good. Had Tecentriq last Thurs. This Wed is labs, visit with MO and Thurs should be Abraxane if all goes well :)


  • candy-678
    candy-678 Member Posts: 4,173
    edited July 2021

    *******Update------

    Had to cancel appointments for RO and liver surgeon consults for Tuesday. Insurance. Enough said, right. They need a referral letter (from my PCP no less) for any specialty doc. Then, takes 7-14 days to approve. I even need a referral letter for my MO -- that I am already established with !!!!! So, rescheduled RO and liver surgeon consults for next Tuesday the 27th and have to call Monday the 26th to confirm that it was approved before I go to the appointments.

    Also, going to be late on Lupron injection this month, and late on Ibrance refills due to insurance wanting prior auth on file.

    This insurance is a joke.

    Any specialists need a referral--- Palliative Care too.

  • lafsunshine
    lafsunshine Member Posts: 50
    edited July 2021

    Moth - so glad to hear you are feeling good, may that continue for a long long time

    Candy - I am interested in hearing what you find out about local liver treatments. I was on Ibrance/Faslodex for a year and now I have progression. I will be starting keytruda and taxol soon. I asked my MO about doing any of the local liver treatments and she was against it for me.

    Kabuki - sorry to hear you were having a tough time with treatment. I don’t have any experience with Verzenio, but I have read it might take a little bit for the body to adjust

    Shelialeximom - waiting is the hardest part! Once your MO gets you on your treatment you wont feel as anxious. Be kind to yourself and know there are many treatments out there. You will find the people in this group have much knowledge and support to offer!

    Nina - yourstory.....Wow! May you continue on doing well with your treatment

  • lafsunshine
    lafsunshine Member Posts: 50
    edited July 2021

    Candy, I just saw your update.....that’s outrageous!!! You would think being stage 4 would offer some lenience from insurance companies...


  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2021

    candy- that stinks about insurance - it’s so unfair how they hold us emotionally hostage while we wait. Most insurance companies can expedite prior authorization(PA).

    I don’t know your insurance carrier, but I have often called mine to get an expedited PA. First I call my PCP or MO office and ask them to ask insurance for expedited PA They do it all the time at my clinic.

    But don’t depend on my PCP or MO. I call myself and ask for the PA department about their process to get it expedited. It helps if you get the pending PA number from your provider. It usually takes asking for a supervisor at the insurance company

    We are our own best advocate with our treatment and our insurance. Calling insurance yourself won’t avoid frustration, but can help you feel like you are doing something to move forward faster.

    Hope you get through this fast and without any more frustration. 💪🏻

    Dee

  • candy-678
    candy-678 Member Posts: 4,173
    edited July 2021

    AlabamaDee- I have called the Insurance Company 4 times today. And my PCP and MO. The PCP office had to go online and create an account. That can take up to 7 days to complete. Then they can put in the prior auths/ referrals. Which then can take up to 14 days to complete. I told the insurance company that I am a cancer patient and that the meds are established meds I am on and that I need the referrals of the consults.

  • seeq
    seeq Member Posts: 1,170
    edited July 2021

    Kabuki, The fatigue was much worse in the beginning for me. It improved over time, but did not completely resolve. There's another thread just about Verzenio here: https://community.breastcancer.org/forum/8/topics/...

    Candy, I have to get authorization for every provider. My MO can request some, others I have to go back to my PCM to request - which always involves another copay. I even had to get a new referral for my MO, because the first one is only for a year. I agree they should be expediting everything in your case.



  • Rosie24
    Rosie24 Member Posts: 1,026
    edited July 2021

    Candy, I’m so sorry to hear about your insurance aggravations. It sounds ridiculous to have to interrupt cancer meds you’ve been taking, but I guess you’ve had no success with your phone calls. it’s not like it’s a minor illness. I would expect an MO’s office to run interference with the insurance company but they want your PCP to refer?? I know I’m no help, but I’m hoping this roadblock can be settled quicker than they said. (Maybe try the insurance tomorrow and ask for a supervisor?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2021

    Hi all...well checked off some bucket list items this past weekend!

    LIVER BIOPSY FINALLY....(its been 2 years) WED the 21st... please pray for me.

    They agreed to do Y90 again since the tumors are not near the colon wall (like last time) so that can hopefully hold things at bay until the COMPLETE tempus results come back.


  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2021

    Great news Nicole but…. Maybe add something fun to the bucket list. 😉

    There are a number of new members that I want to welcome and send a virtual hug. I haven’t felt that I have much to offer as I am still figuring out the liver thing myself but am thinking of everyone facing challenges right now. Missing JFL, Arrolsen and Bliss..

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited July 2021

    Candy & Nicole

    Hoping for the best. 🙏🏻


    Dee

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2021

    Okay.. idiot moment Nicole… I read your message to mean that a liver biopsy and Y90 were on your bucket list. LOL. Apparently I am losing the thread figuratively and literally

  • kabuki
    kabuki Member Posts: 35
    edited July 2021

    At least now I know the reason for the fatigue. I still have a 6 pack of peppers, lemon cucumbers and broccoli plants to get into my garden. I have tried to get my vegetable garden done since May and have been too exhausted to finish. It used to be so easy.

    I have a CatPet scan on Wednesday and am concerned about other Mets. 2 years ago, I broke a rib over my liver posting on a horse. I was a bit paranoid than over bone Mets but never followed up.

    I was very nauseous today after taking the morning dose of Verzenio and was able to get a prescription for an anti emetic.

    SeeQ, I will check out the Verzenio thread. The uncontrollable diarrhea really concerns me. I still want to work and live as normal a life as I possibly can. It's still so surreal that this is happening after 11 years


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