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How are people with liver mets doing?

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Comments

  • B-A-P
    B-A-P Member Posts: 409
    edited April 2022

    Hey Everyone,


    Just wondering if anyone has had something similar. For the last few months it's not uncommon that I might wake up a little nauseated and throw up a small bit once and then I'm usually fine. I might be a little bleh feeling but I can eat normally ect. I assumed it was Possibly due to the meds I take and perhaps it is.

    Saturday night I was feeling fine , had supper, went to drain and all of a sudden I got light headed, so I took my BP and it was low but higher than my usual. 97/67/ Usually im 82/59 ex+speciallu bc I take a beta blocker for varicies.

    Then I slept and whenever I was on my left I felt more sick. I woke up in the AM and continued to throw up 5 more times. I tried some vertigo exercises incase and I thought that was it, but i'm starting to feel lightheaded again. So i don't know if this is a head thing (god forbid mets), vertigo, or a liver issue since we know it has some troubles. I've mentioned my nausea before and they just told me how to treat it. I'm going to try to talk to my GP soon and my MO should be calling with my bloodwork on thursday so I will mention it to her as well.

    I guess I"m looking to see since we all have liver stuff to see if anyone knows about this.


    Thanks!

  • daughterof
    daughterof Member Posts: 47
    edited April 2022

    Hey bap,

    My mum is having similar issues ever since having her cyberknife treatment. She's experiencing a lot of nausea, pain in her stomach (not abdomen), lower appetite and reflux. At first we thought it was cyberknife side effects but it's been a month and she's still experiencing it. Her doctor only told her how to manage it and didn't seem too concerned.

    Wish I could help more.

  • B-A-P
    B-A-P Member Posts: 409
    edited April 2022

    Thanks Daugherof. Sorry to hear your mom is dealing with similar. I haven't had anything done to change things or anything. I'll have to talk to my GP and see if he has ideas. I have spoken to MO before like I said, but it's usually a one and done .. but i had a few bouts yesterday which is more concerning to me.

    Thanks for chiming in though :)

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited April 2022

    Hi B-A-P. I suspect it might be the liver. My MO was surprised that I have pain (it's from the met that's close to the capsule and now I suspect it may also be the enlarged liver pressing on my ribs) as he said that typically patients just feel increasingly unwell. I am someone that is usually slow to get nausea or vomit but since my liver mets have grown, over the last month, I have found that I have quite a bit of nausea. I am not throwing up yet but there have been times that I definitely felt like it was close. I'm also finding myself getting quite light headed/dizzy like I am going to pass out. There is no rhyme or reason to when this happens. It can just come out of the blue that I suddenly feel sick and a bit weak (I would swear I was losing blood or something).

    I hope they can get to the bottom of this for you. Let us know what your GP says. Sending hugs in the meantime!

  • B-A-P
    B-A-P Member Posts: 409
    edited April 2022

    thanks Sadie.

    I’m hoping not bc I was NeD in mid Jan on cycle 3 of ibrance. This happened while I was NED a few months back. But what you’re saying is awfully similar to how I felt. But most times I don’t feel light headed. This time I did. So that’s concerning. Hoping that treatment isn’t already failing bc it’s too soon and I don’t know what will be next.

    It could be anything and hoping that I can get some answers soon.
    Thank you so much for your input :)

    Hope you’re doing well as you can be.

  • husband11
    husband11 Member Posts: 1,287
    edited April 2022

    Asking for your prayers. My wife gets scan results Tuesday morning.

  • BevJen
    BevJen Member Posts: 2,341
    edited April 2022

    husband11,

    Thinking of both of you.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited April 2022

    Sending prayers Husband! I’m thinking nothing but positive thoughts for your wife’s scan.

    B-A-P, I should have remembered that you were NED. That changes things. Unlikely that things would change that quickly. You are also in my thoughts for a quick resolution to these problems. Hugs!

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited April 2022

    Husband, Sending my best wishes for good results on your wife’s scan.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited April 2022

    Hmmm… so I can finally see my scan report and the news is worse than I realized. Significant increase in the number of lesions. Not sure what that means in terms of the percentage of my liver involved but I clearly need a win here. Even a week to that biopsy seems like a very long time. ☹️

  • seeq
    seeq Member Posts: 1,185
    edited April 2022

    Husband11- prayers for good scan results

    BAP- hoping for a quick and easily solved answer to your latest problems

    SS - Ugh. Waiting is so nerve wracking, and it has to be 10 times that when you know your treatment has failed. Do you think they'll start you on the Xeloda while you wait for biopsy and results?

  • bsandra
    bsandra Member Posts: 1,037
    edited April 2022

    Dear Sadies, ugh, that is tough. We are with you. Can they push the biopsy closer?

    Saulius

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited April 2022

    Thanks both of you. It’s only a week and my MO was not concerned about the delay. He won’t start chemo until after the biopsy - probably concerned about possible complications. To make matters worse, I have been dealing with pain in my right shoulder blade that radiates down my arm for for weeks. I thought it could be simply a muscle tear or stress injury from working in my garden but it’s starting to seem a bit ominous. I’ll reach out to my MO to let him know the biopsy has been scheduled and to ask about the shoulder. I appreciate the support!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2022

    Sadie I am so sorry for the progression...did your MO mention which chemo might be next?

    Husband...I just prayed for you and your wife and the results.


  • bsandra
    bsandra Member Posts: 1,037
    edited April 2022

    Dear Nicole, BAP, Sadies, Seeq, Bev, Husband and others. I am always so happy to read you. Whenever you share your worries, hopes, knowledge, dreams... we all feel more confident and more comforted, we feel that we are not alone and that so many things are possible. You set examples. You let and help us learn. You all make us fierce fighters and survivors. You are important. To us, your loved ones, to the World. Just wanted to share these feelings to all of you. What a community. I am blessed to be here.

    Saulius

  • B-A-P
    B-A-P Member Posts: 409
    edited April 2022

    Oh Sadie, I'm sorry about your report. Hoping they can come up with a solid plan for you soon. It's kinda a blessing and a curse when you can see your results online because you can read them as they come in real time, but often without being able to discuss with the MO, it's hard to wrap our minds over what it could be. Where I live we don't have a MyChart system. The wait sucks too.. Sending you warm , gentle hugs. You'll get through this.

    Husband, I'm thinking of you and your wife today. Fingers crossed all is good.

    Salius, I've said it before and I'll say it again. You're the best cheerleader we could ever have. You're knowledge and positivity radiates, and I always look forward to when you chime in. You never present with that toxic positivity that many give, but always provide comfort. And we don't even know you. How lucky are we?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2022

    Thanks Saulius! You really are a blessing to have here.

  • husband11
    husband11 Member Posts: 1,287
    edited April 2022

    Thank God, scans show all mets stable. Some changes in the peritoneum continue, but nothing major. One tumor marker up slightly, the other down just a tiny bit. Thank you all for your thoughts and prayers. We had real fear going into this one as my wife had some weird symptoms for a while (might have been covid), and we had a weird phone call from Cancercare last week, where they just called and didn't leave a message. And also, for the first time ever, we got a requisition for an MRI in the mail, before even meeting with the Oncologist. Made it seem like she had seen something bad, and was setting up for a quick follow up after a change in treatment.

    Sadiesservant, I am so sorry to hear about your scans. I pray that the biopsy gives them a clear path to a successful treatment.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2022

    Huband!!!!! YAY!!!! WHOOOO HOOOO Thank you FATHER!!! Answered prayers!!! So happy for you both.

  • BevJen
    BevJen Member Posts: 2,341
    edited April 2022

    Husband11,

    I am so happy for your wife. That's wonderful news.

  • moth
    moth Member Posts: 3,293
    edited April 2022

    sadie, I'm sorry to read your news - this really sucks.

    Husband11 - what a relief! I feel like we all hold our breath waiting for the results

    Saulius - thank you for your wonderful words


  • seeq
    seeq Member Posts: 1,185
    edited April 2022

    Saulius - you truly have the gift of encouragement. We are so glad you're here.

    Husband11 - Sheesh! Those people have no idea how nerve-wracking a mystery call can be, or they'd have left a message! I'm so glad the "alarm bells" were false and your wife scans were good.

  • daughterof
    daughterof Member Posts: 47
    edited April 2022

    Dear Sadie I'll be thinking of you and hoping for good news in the future.

    Husband, as a carer I know how amazing it is to receive good news. I'm celebrating with you both.

    My mum will do her labs today. Does anyone know if liver enzymes are expected to go up after cyberknife to the liver mets ?

  • bsandra
    bsandra Member Posts: 1,037
    edited April 2022

    Dear Husband11 - very good news, a real reward for both of you, your effort and involvement.

    Dear Daughterof - liver is a very large organ, and it depends how large mets were and how many (I am sorry, I remember you told us but I forgot), and how long ago Cyberknife was perforrmed. Cyberknife and SBRTs alike have an extremely high radiation energy in radiated/planned volume which significantly drops just behind that volume, so surrounding tissues are little affected. I believe if just a few mets were radiated, and they were not so big, and you mom feels well, liver numbers should be ok.

    Saulius

  • daughterof
    daughterof Member Posts: 47
    edited April 2022

    Thanks for replying Sandra.

    Her treatment with cyberknife was a month ago. She has developed fatigue and GERD after treatment and I wonder if it's a side effect or something bad. Her 2 biggest mets were treated, together they're around 9cm. I'm worried if her enzymes had increased that it might be a sign of progression. So far, enzymes have been normal.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2022

    OH MY WORD!!!! I just met someone that has been on taxol 3 weeks on 1 week off since Sept of 2020!!!!!!!!!!! OMGOSH that is record that even passes Moth.... WOW.... I am stunned that her cancer has not found a way around that..and ..that she tolerates it...wait not someone else just mentioned they did 52 infusions of it!!!!! WOW.... that person did lose sense of smell and had neuropathy though...

    Moth do you have neuropathy??

  • moth
    moth Member Posts: 3,293
    edited April 2022

    nicole, I was on a taxane from March 2020 through Dec 2021, first paclitaxel and then nab-paclitaxel. I do have some mild neuropathy in both hands & feet - nothing that interferes with function but it is sometimes a bit sore.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited April 2022

    SS,

    So sorry about your scan results. Have you looked at the T-cell therapy trial at NIH/NCI? I wrote to them and they were very responsive. I was able to send them all of the reports and scans they needed via upload or email. The trial says no brain mets but they said they'd look at my records and see if I might be included since my brain mets have been quiet for more than two years. It's a Hail Mary for sure, but I believe, worth a try.

    Hugs, Susan

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited April 2022

    Thanks Susan. I appreciate you thinking of me and pointing to a possible trial. Unfortunately, I’m in Canada which complicates the plot. We don’t seem to have as many trial options available to us but I will be pushing. It’s amazing how motivating an increasingly short list of standard treatments can be! 😳.

  • bsandra
    bsandra Member Posts: 1,037
    edited April 2022

    Dear Daughterof, ugh, if mets were that size, liver healing can affect biochemistry numbers but let us wait and see. As always, if you are really worried about something, doctors could check it with ultrasound - liver is the organ that can be very well evaluated with ultrasound. GERD and fatigue were for sure SEs of treatment but they should pass. Please keep us informed. Hugs,

    Saulius

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