How are people with liver mets doing?

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    My onc was thinking of aromasin plus afinitor for me as my first treatment after taxol, but then Ibrance came along. Afinitor sounds more scary to me, but I have not researched it in depth. On this BCO web site, some possible serious side effects listed for afinitor are severe lung and breathing problems, serious infections, and kidney failure. The common side effects listed are mouth sores, infection, rash, fatigue, diarrhea, and decreased appetite. The issue of whether a drug that extends progression free survival can also be shown to extend overall survival is actually more complex and nuanced than might be expected. See the thread "Better PFS but not better OS?"

    https://community.breastcancer.org/forum/8/topics/...

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited July 2016

    scan day for me today. First one since being off Xeloda for 4 weeks for my vacation to Ireland. Probably should have waited for another day to do this since I only got back last night from my trip. Very jet lagged. Wish me luc

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited July 2016

    lefty, in your pocket for excellent results. I am the tall one, playing the tin whistle......lol...

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    Leftfootforward, how exhausting. Luck of the Irish to you. In your pocket, too. I'm the one dancing to the tin whistle.

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  • LvinAZ44
    LvinAZ44 Member Posts: 213
    edited July 2016

    Hi all. Scan tomorrow. Am nervous but an expecting good results since tms went down to 49 from 198. Two more chemos and then we talk about liver embolization and hopefully maintenance drug. I asked my onc not long ago about achieving NED, he says only about 1% achieve this but reading the posts here and on other discussions it seems more than 1%. I hope to get there. Hope everyone feels good and stay positive. Yes it's hard and I sometimes find myself thinking about dying in a year or two but I'm going to fight and kick butt in the meantime. I have not changed my diet too much try to eat more veggies dr says some alcohol won't hurt but I don't drink really anymore or take aspirin or anything that makes the liver work hard. I am going to start making the Rick Simpson oil soon, hoping that gets me to ned.

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  • cnanthia
    cnanthia Member Posts: 18
    edited July 2016

    It's more than 1%. I'm still here and going strong 91/2 years after being diagnosed with liver and bone mets. Good luck!

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  • LvinAZ44
    LvinAZ44 Member Posts: 213
    edited July 2016

    thats awesome!! 😉 I figured it had to be more then that.

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  • babs6287
    babs6287 Member Posts: 2,021
    edited July 2016

    Leftffot and LvinAZ-I'm right there with you while you get your scans. Hoping for great results!

    Babs

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  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    Leftffot and LvinAZ - hoping for great scans.

    lvinAZ - patients who are NED and patients who have stable tumors have statistically the same long term survival rate. tumors can go dormant or necrotic and not do much. the scans see them, but they are dead/dormant cancer cells that are not metastasizing. micro metastasis, which can't been seen by scans, seems to drive the disease.

    that said, i've reviewed the statistics at length and, mentally, i want to be NED.

    >Z<

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited July 2016

    thanks everyone.

    Thanks to electronic records I know tonight that my scans were clean. There was no evidence of metastatic cancer found.,

    It's a huge relief.,

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited July 2016

    That's fantastic Leftfoot! Wow, celebration time.......Happy 4th also. Thinking of you too Lvin, best news on the scans. I am sure we all know what you mean Z about the mental benefit of being NED....I try and remain hopeful for upcoming research and my hopefully excellent response to SOME Tx. However, the second day in on my vacation I had a very bad private meltdown after someone close to me described something they saw as a Nurse's technician in an ICU unit. I don't think they even realized what they were saying but it hit me HARD. After the meltdown I recovered for my families sake but it has been stuck in my brain regardless.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    LvinAZ, good for you! You sound stronger.

    Leftfootforward, YES!

    Artist, I'm sorry you had that happen, especially on vacation. Universe, are you listening? Artist needs a break!

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  • Mama2twinsplus2
    Mama2twinsplus2 Member Posts: 120
    edited July 2016

    Congrats Leftfoot, so happy to hear your good news!!!


    Alissa

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  • MsTee
    MsTee Member Posts: 36
    edited July 2016

    Yes! Congratulations! That must have been the sweetest music to your ears. :)

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited July 2016

    artist- hugs. Yes world artist beds a break.

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  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    artist - you might try some kind of mental clearing ritual, like projecting that mental image on a piece of paper and burning it, with a lot of kindness for the person in the ICU. if you think about it, you likely have your own tricks and resources to deliberately clear darkness.

    i am afraid. dealing with this cancer, there are so many avenues for terror to make its home in my mind. i take a moment with my aunt every week to find all this stuff and we let it go. in your case, you know what got into your head. but it's amazing what accumulates and you don't even know.

    sending light and support your way.

    leftfootforward - yay. great news cheers us all up.

    >KNC<



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  • Holeinone
    Holeinone Member Posts: 2,478
    edited July 2016

    lefty, great news ! nothing better than that.

    Artist, sorry. Our minds have been working over time, to get us through this. Mentally & emotionally I feel much more vunerable.I hope the rest of your holiday is all "FUN".

    My tumor markers went up last week by 5 or 7 points. Please, someone tell me no worries....

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  • babs6287
    babs6287 Member Posts: 2,021
    edited July 2016

    LFF. Great news. Sooooo happy for you👌👌

    Artist. We all have those moments where we go to that dark place. Hoping for some good news from you soon !!!!

    Holeinone I don't think that small a rise in your TMs is something to worry about.

    Babs

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited July 2016

    holeinone- my markets fluctuate like that a lot. I wouldn't worry. Lots of things effect the levels other than cancer. Try not to let it bother you. I have taught myself not to worry unless they continue to rise on multiple blood draws. Easier said than done. Hang in ther

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited July 2016

    onc and I decided today to stay on Xelida but not add the targeted therapy back in at this time. I will stay this route until sonethibg changes. I'm ok with that.

    Here is to us all hanging in there.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited July 2016

    Thanks so much all you wonderful ladies for your compassion and understanding. I did recover the next day to enjoy the rest of my vacation. I know these moments come and go and they will continue to do so. As Z says, many small things build up, and then that one "thing" just sets it in motion. Being down there with my girls reminds me of how far away they are and we only see them maybe 3 times a year now. So I was feeling a little sad already. Luckily I am pretty good about bouncing back quickly. As Holeinone says, we are so much more mentally/emotionally vulnerable now.

    Anyway, we are back home now. I went and had an XRay on my wrist and it is not broken, only a very bad sprain. I am mad at myself for being so klutzy because I have 10 weeks off for summer which is when I ride my bike, play my guitar and make jewelry. All of those things are completely hampered now. Oh well, I'll find something else to enjoy my time. I'm feeling better so thanks again everyone. Holeinone, my TM's, when they go up they skyrocket by several hundred so I think you are good, I wouldn't worry either. Best to everyone, hope you are all enjoying summer!

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  • GatorGal
    GatorGal Member Posts: 2,550
    edited July 2016

    Artist, so glad you were able to recover and enjoy the rest of your vacation, so sorry about your wrist, though! I just had my second Ixempra infusion yesterday. When speaking with my oncologist I mentioned my left leg was bothering me quite a bit so he sent me after chemo for a scan. Called last night to tell me the tumor in my iliac bone was growing and recommended a round of radiation (5-10 treatments). I've never had radiation so am a little apprehensive. Will see the radiation oncologist Monday morning, I haven't seen the ct scan report yet but he didn't mention the liver mets so I'm assuming they are stable. Sure hope this Ixempra kicks them to the curb.

    Holeinone, my onc doesn't put much stock in the tumor markers. He rarely orders them and says they just aren't a good reflection of what is going on for everyone, they definitely aren't for me. LFF, sticking with the xeloda sounds like a good plan. I wish I could have gotten some time out of it. All we can do is hang in there and hope we have a little bit of luck with each treatment!

    Other than that, I'm just so sad about what is happening in our country with all these shootings and I pray for sanity. I'm not a gun person myself and understand those who enjoy hunting and shooting for sport but sure don't see why anyone needs these ar type guns. Hoping these riots don't last all summer and we can restore some order in our cities.


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  • LvinAZ44
    LvinAZ44 Member Posts: 213
    edited July 2016

    well scan shows need of liver and lung. Liver has shrunk and is leaking fluid so dr concerned with that. And just try vent, my bf kicked me out so I may be moving Back to Ohio. Hate to leave my dr but.. very emotional night and morning.

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  • zarovka
    zarovka Member Posts: 3,607
    edited July 2016

    ((LvinAZ44))

    ((Dallas))

    >Z<


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    LivnAZ, do you mean NED for liver and lung? I'm sorry things are hard right now, and I really hope everything will work out the best for you. If you do decide to go to Ohio, your horse is in there, right? And your family? You can find a good doctor there if you need to.

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited July 2016

    hugs livin

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  • GatorGal
    GatorGal Member Posts: 2,550
    edited July 2016

    lvinAZ, I'm confused by your post, too. If you are NED liver and lung that is great news. What is wrong with your boyfriend? Where in Ohio would you go? Changing doctors is a pain, especially if you like the one you have. Sending hugs and hoping your Bf straightens up (if you want him to ... LOL).

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited July 2016

    Gatorgal, That is great that the liver mets weren't worth a mention! Stable is a lovely word! You have been through a lot and I have high hopes that your current treatment lasts a very long time. I am with you on all of this violence around our country and the world. I worry so much for my children. Lvin, I HOPE that you meant NED which would be fantastic! Sorry about your living situation but maybe the change will be more positive than you expect? Unfortunately I had yet another blow today as the Ibrance is messing up my live enzymes again so have to try the 75 mg. If that doesn't work I am off that as well. Seems like I am blowing through Tx pretty quick. Trying to keep a stiff upper lip here but sure wish I could cruise along for a good stretch without any drama....

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  • babs6287
    babs6287 Member Posts: 2,021
    edited July 2016

    Artist I know it gets discouraging at times but hopefully the lower dosage will be the key for you!!!!

    Babs

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited July 2016

    Thanks babs! I am trying so hard to roll with the punches but some days...... U Know! I always come here to vent and feel the love!

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