How are people with liver mets doing?

1674675676677678680»

Comments

  • moderators
    moderators Posts: 8,741

    @amel_83 we're thinking of you and sending support however we can. We are here for you, please keep us posted on how you are doing.

  • amel_83
    amel_83 Member Posts: 238

    @moderators thank you very much, I will

  • vlnrph
    vlnrph Member Posts: 524
    edited December 3

    After switching treatment to Trodelvy last month, I seemed to be having a bit of tumor flare. There was pressure on the right side of my upper abdomen, under the diaphragm. I’ve had this feeling previously when starting a new chemotherapy. I take that as a sign that it’s working…

    However, my ANC went down by nearly 1000 in just one week. We mask & generally remain isolated in order to prevent infection but the number of people traveling during the holiday season makes virus transmission unavoidable. I don’t shop in person much, mostly online now!

  • missmonty
    missmonty Member Posts: 76

    Hi All,

    I hope everyone is doing as well as they can be, and able to get some enjoyment out of the holiday season.

    I started weekly taxol in August, after 2 large liver lesions were discovered. I have been DeNovo since 2017 with lung mets. The lung mets are stable, but unfortunately I have continued progression of the liver lesions. (8.4cm and 6.3cm tumours) Taxol is my 7th line of systemic therapy.

    I have an appointment with my MO next week to discuss next steps. I posting here to see if anyone has been in a similar situation, being heavily pre-treated, taxol not working, and what treatments members may have had some success with. Any recommendations would be welcome. I know my MO will have the typical “standard of care” options to discuss for next treatment, which I guess could be effective, although I’m doubtful.

    Thanks,


    Anna

    ps…I’m not sure if you can see my list of treatments….

  • threetree
    threetree Member Posts: 1,833

    Would any of you who've had a liver biopsy be able to tell me what that was like? If you could I would be most grateful. I have two spots on my liver that show on CT. Right now they are considered stable and the medical people are "watching and waiting". From scan to scan, they seem to note these lesions as being either a little smaller or a little larger than the last scan. It varies. I just had another scan that is now showing the 2 lesions slightly larger again, after being smaller last time. My oncologist told me that I might want to psych myself up for the possibility of a liver biopsy down the road, depending on what the next scans show. It sounds awful to me and I hope with all my heart that I never have to get to that point, but I also have to acknowledge that it is a real possibility from what they are seeing and saying. I would really appreciate knowing what getting that biopsy was like for those of you who have had to do it. Thanks so much!

  • missmonty
    missmonty Member Posts: 76

    Hi threetree,

    I had a liver biopsy a few months ago. I would describe it as quite uncomfortable, but not terribly painful. For me it was a quick procedure. Also, I only had local anesthetic. If you are worried about pain, make sure they also give you a mild IV sedative. I was actually expecting the sedative, but the dr. just went ahead without it. I stayed in recovery for about three hours, and they discharged me.

    It felt a bit sore for about 5 days, and I took Tylenol for that.

    I hope this helps.

    Anna

  • weninwi
    weninwi Member Posts: 795
    edited December 14

    threetree,

    I had a liver biospy and my anxiety about it was worse than the actual procedure. I took a low dose valium an hour before which definitely helped. An IV was started. I was wheeled into a small somewhat darkened room. I was given twilight anesthesia (I'd never do the procedure w/o this). The nurse who started my IV stayed at my side the entire time which helped my anxiety. I was positioned on my side and was awake enuf to follow instructions and hear conversations. I can't remember how they zeroed in on the lesion, but I think it may have been ultrasound. I go to a teaching hospital so a MD and Fellow were at my side. I think it was the Fellow who did the biopsy and it took more than one punch until they got what they wanted. As I recall the sensation was pressure and mild pain. The puncture site was covered with a bandaid. I was sore for a few days.

  • threetree
    threetree Member Posts: 1,833

    Missmonty and Wendy - Thank you both so very much for sharing your liver biopsy experiences. It's so helpful to have some idea of what to expect if I do wind up having to do this.

    Missmonty - Interesting that you only had local anesthetic. My oncologist did tell me that they do more than that, seemingly routinely. He also said it was a day procedure and that you could go home same day - sounds like what you did. I'm sorry that it was so uncomfortable for you though, and that you were sore for those 5 days. I feel much better though, hearing a first hand experience rather than just the doctor's few mentions of how it goes. He also described the need for pain meds afterward similarly to what you did with the Tylenol. He said some don't even need that.

    Wendy - Oh I can sure believe the anxiety could be worse than the actual procedure! I can have that problem with so much of this stuff. The twilight anesthesia you received would correspond to the doctor having told me that they give a person "conscious sedation". I think it's the same thing I had that when I got a bone biopsy in my spine, and what you describe as to how the procedure went with that sounds similar to what I experienced with the bone biopsy, i.e. I could hear them and follow instructions. I also go to a teaching hospital and I don't think I'd want one of the residents to do the procedure, for the same reasons you seem to have had troubles. Uh oh. Like Missmonty, you were sore for a few days - good information for sure.

    Years ago when I was married, I remember my then husband coming home and telling me how a co-worker of his had had to have a liver biopsy and the man had told everyone at their office that it was excruciatingly painful and the worst thing he'd ever had to endure. He described it as being an absolute nightmare that he wouldn't wish on anyone. Ever since then, that's all I ever thought or known about a liver biopsy. It is truly helpful to hear other people's stories also. It might have been different for him too, since it was so long ago - the 90's I think.

  • dulcea
    dulcea Member Posts: 226

    @missmonty have you had a blood biopsy or liver biopsy/lung biopsy to find out if you have any treatable mutations?

    Maybe you could contact a local teaching hospital and find out about clinical trials too.

    I am fairly new to this so can't offer a lot. Good luck to you and to all of us!

  • dulcea
    dulcea Member Posts: 226

    @missmonty sorry. Just read back and you have had a liver biopsy. Did that turn up any mutations?

  • lacombattante
    lacombattante Member Posts: 178

    @threetree , I had liver biopsy at the beginning of my Stage IV journey. It was done under local anesthesia and it was a short procedure - some 20 min, even though they biopsied two spots.
    For me, the most uncomfortable part was the anesthetic shot. The biopsies themselves were not painful, maybe a bit of tugging feeling.
    Afterwards they kept me for observation for three - four hours and I was at home the same day.
    Good luck with your procedure!

  • threetree
    threetree Member Posts: 1,833

    Lacombattante - Thank you so very much. These descriptions from people who've had the procedure are so very helpful. I'm glad that you didn't have a worse time. I may or may not need to have this, but the oncologist seems to be leaning more toward the possibility and told me to start mentally preparing for the, so that's what I'm trying to do, before the next round of scans, that would come in mid March I think. These things just terrify me. Knowing that you got through it with discomfort but not an absolute nightmare is a huge help to me. I really appreciate you taking the time to describe how it went for you.

  • missmonty
    missmonty Member Posts: 76

    Hi Dulcea,

    Unfortunately, I don’t have any significant biomarkers or genetic mutations, although I will dig further into this with my oncologist this later this week. I did sequencing a few years ago. I fear that I have become endocrine resistant, and now chemo resistant, so running out of options. A scary place to be. I know I will have some chemo options to consider, but I’m not feeling confident any of them will be effective. Hopefully my MO, who was attending SABCS last week, has come back with some new, cutting edge treatment options. I’m in Canada, so accessing clinical trials can be a bit challenging, but will discuss this as well.

    Thanks for responding. How are you managing on Xeloda so far?

    Anna

  • dulcea
    dulcea Member Posts: 226

    @missmonty Thank you for asking. I am doing pretty well on Xeloda. I will say that this has been the easiest treatment I have been on so far. I am only on my second cycle so I'm sure the medication will be cumulative and I'll get to experience more S/Es. How was your journey on Xeloda? I like to hear about other peoples' experiences but it's a quiet board over there. I have also become endocrine resistant in just a year.

    What about an ADC for another treatment? Have you looked into that (Enhertu/Trodelvy)?. That is next on my list unless I find a clinical trial.

  • missmonty
    missmonty Member Posts: 76

    @dulcea…I’m glad to hear that you are doing well on Xeloda. It was my 2nd line treatment, and it was very manageable for me. Other than a few minor blisters on my feet early on, side effects were almost non existent for me. I stayed on the full dose the whole time. I wish the same for you, and I hope it’s effective for you for a long time.

    I need to update my treatments. I was on Enhertu for 15 months. (April 2023 - August 2024.) Side effects were definitely all over the place, but after the first few cycles, and figuring out preventative meds, it was OK.

    Well…we’ll see what my MO has up his sleeve on Thursday. I’ll report back once I know more.

  • AJ
    AJ Member Posts: 271

    @threetree I had a liver biopsy when I was first diagnosed with MBC. It wasn’t bad at all. I had twilight sedation. They used ultrasound to guide the needle. Didn’t feel a thing. Afterwords I had to lie still for about an hour. I had some referred pain in my shoulder and they gave me an oxycodone. They sent me home with a few oxy pills.

  • threetree
    threetree Member Posts: 1,833

    AJ - Thanks so very much! That's really helpful, and I'm really glad that it wasn't too bad for you. I am of course hoping that I don't wind up having to have the procedure, but unfortunately it is looking more and more inevitable, but the oncologist is going to at least wait until the next round of scans in March. These liver lesions I have just generally seem to sit there, but sometimes they look bigger, sometimes smaller, and I think he wants to get a better handle on the situation. Hope you are doing well, and that you have a real nice holiday season!

  • AJ
    AJ Member Posts: 271

    @threetree thanks! You too! A liver biopsy will give you more information, which is a good thing.

  • threetree
    threetree Member Posts: 1,833

    Thank you, AJ!

  • mommacj
    mommacj Member Posts: 59

    Hi three tree, I have had 3 liver biopsies. I had one when my liver lesions first showed up. I had a second one for a clinical trial I did in fall of 2023, and a third one when I had a new lesion pop up in September after progression on truqap. I was extremely nervous before the first one but all three were done with twilight sedation and CT guidance. All 3 times I had no discomfort during the procedure at all and barely remember anything. I had to take Tylenol after one for some mild referred pain in my shoulder. But I had barely any discomfort and the other two I had none at all and took nothing. The most difficult part for me was after the procedure they have you stay pretty still for 3-4 hours to allow the liver to clot and I had to go to bathroom so they had me try to go in a bed pan and some banana shaped thing. I had trouble with that but the procedure and recovery was not difficult for me at all. I know everyone’s experiences can be different but I hope this helps. My anxiety the first time was far worse than the actual procedure itself. Blessings :)

  • threetree
    threetree Member Posts: 1,833

    Mommacj - Thank you very much for describing your experiences for me. Wow, 3 times! I hadn't even considered the possibility that someone might have more than one, but it makes a lot of sense, once I think about it. This is very helpful, and I can see where the anxiety could definitely be worse than the procedure. I can sure be that way with things. I'm hoping it won't have to happen, but I really do think my oncologist is just "gently" pushing/guiding and preparing me for the procedure down the road. I think he thinks it's a strong possibility the way the scans have been looking. I really appreciate you taking the time to tell me about this, and I really hope you are doing well with whatever your situation is, and that you are having a nice holiday season.

  • missmonty
    missmonty Member Posts: 76

    Hi All,

    So I’m on to my 8th line treatment for MBC.
    I’ve had progression on my most recent treatment…weekly taxol. I’m now moving to weekly Doxorubicin. Trying to remain hopeful, but I’m not feeling overly optimistic that this treatment will work. For the time being I’m still feeling quite good overall, so hopefully I can handle this treatment, with minimal side effects….and that it can, at the very least, stabilize the liver mets for a decent length of time.

    Wish me luck.


    Anna

  • threetree
    threetree Member Posts: 1,833

    Wishing you the best of luck ever, Missmonty!

  • lacombattante
    lacombattante Member Posts: 178

    @missmonty, Wishing you best of luck Anna!
    Hope that the new treatment will stabilize the situation and will continue to work for a long while.