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How are people with liver mets doing?

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  • Woodylb
    Woodylb Member Posts: 935
    edited February 2015



    Hey Ronniekay, it has been a while glad t hear from you :)) quit thinking every little pain you feel is cancer ughhh! Femara causes a lot of pain in different parts of the body. Ask me about it i used it for three years. This pain i feel it too and the the side of the rib and the same side of ky breast cancer and it is dull also but nothing ever showed on scans related to this pain. Love and prayers.

  • ronniekay
    ronniekay Member Posts: 657
    edited February 2015

    Thank you Woody...I just need to have you remind me every now & then to not freak out :). Feeling better...XOXO

  • Woodylb
    Woodylb Member Posts: 935
    edited February 2015


    I am glad you do my dear Ronnie :))) xoxoxoxo



  • springwatch
    springwatch Member Posts: 243
    edited February 2015

    Thanks Woody for the feedback on your biopsy. I am going to push for a biopsy of my liver mets.

    Ronnie, I have the same fears that you are experiencing regarding the pain being near the site of my liver mets. I hope this is just rib muscle inflammation. It has been going on for well over a week although it is better than it was at the beginning.

  • mutherflush
    mutherflush Member Posts: 85
    edited February 2015

    Hi everyone. I've not posted since my first cycle of Halaven. I've just completed my 5th cycle and had results of ct scan. Halaven has not worked for me at all. Significant progression and I've been told options are at an end. I have been offered a trial drug AZD4547. This is given orally along with Letrozole for 12 weeks.

    I am having liver biopsy next week because I too asked my onc if maybe liver tumours could be HER2. My lung mets have remained stable for 3years and my bones have hardly moved so why is liver not responding.

    Has anyone heard of this trial.

    Thank you all just for being there. I'm really scared at the mo. Glad of all the feedback on biopsies.

    X

  • ronniekay
    ronniekay Member Posts: 657
    edited February 2015

    mutherflush...I'm sad to hear Halaven didn't take care of the liver mets...and glad they're doing a biopsy. Bestbird posted an interesting study about the number of cases that found tumor status changes when they appear in other spots. I don't know of the trial drug but hope for many options to be open for you. I can imagine how you're feeling...good news that your bones & lungs are stable...will be praying for answers on the ct scan!

  • Woodylb
    Woodylb Member Posts: 935
    edited February 2015



    Mutherflush, i am sorry to hear Halaven did not work on your liver, but glad your bones and lung mets are stable and hope they stay this way , so the doctors can focus on finding you other options. I know how it is to hear and feel the fear of running out of options. But a lot of drugs are coming out and being tried, i did not hear about the drug you have mentioned and i hope and pray it is the right one. I know however, of palbociclib along with another drug was newly approved and is used for he2 negative who did not respond to other chemos , you might want to check this with your onc . I hope you soon start on a new journey one of many with this disease with a new lease on life. Hope and prayers are with you

  • springwatch
    springwatch Member Posts: 243
    edited February 2015

    Mutherflush. I am sorry about the progression. I hope that the liver biopsy allows you to explore other alternatives. Have you asked your oncologist about revisiting chemos that may have worked for you early on? I know some people have returned to a taxane after a period of time. You don't mention it in your bio. but have you tried carboplatin? Sorry but I don't know anything about the drug trial you mentioned.

    RonnieKay, How is your pain? Mine is better but still not disappearing fast enough. I have had it almost 2 weeks now.


  • redwolf8812
    redwolf8812 Member Posts: 580
    edited February 2015

    mutherflush - just read about the trial. Sounds pretty good. If you feel up to it, I say give it a try (after your biopsy I assume). Let us know.

    - Penny

  • benjnate
    benjnate Member Posts: 105
    edited February 2015

    Mutherflush, I think the biopsy is a good idea and am curious to hear the results. I've heard good things about the trial your onc is talking about so I hope the same for you.

  • ronniekay
    ronniekay Member Posts: 657
    edited February 2015

    Same here, Spring. I had h/p yesterday and the nurse said to use heat, but also reported it to my onc. The heat helped a bit at the time last night, but the ache returned. It's constant. I'm on day 6....2 weeks...ugh. Are you taking ibuprophen?I forgot to ask how my blood was yesterday so will have to wait for their call tomorrow for TM's. Hoping for our muscle strain to heal :-)

  • springwatch
    springwatch Member Posts: 243
    edited February 2015

    RonnieKay,

    I am taking naproxen, an NSAID. I have been on it for nearly a year for my bone mets. Onc and GP let me control my own dose as long as I don't exceed so many mg/day.

    Had my gem/carbo this morning and my bisphosponate infusion. The latter almost always increases the pain in my bone mets, temporarily. If the pain doesn't change on my right side I think I can rule out a met to my rib. I don't think there is one anyway as this started shortly after my last scan.

    I think it is just a muscle strain that is slow to heal because of the chemo,

    My onc is on vacation so I don't know my tumor markers this week. He likes to tell me himself. I know my Hb was very low and they had to phone him to get the OK to carry on with the chemo, which we did. If it is still low next week, it will mean a blood transfusion.

  • freebird53
    freebird53 Member Posts: 141
    edited February 2015

    Well a very very frightened morning for myself...early calls from nurses and doctors...My tumor markers have gone up...even on the most strongest chemo out there (Red Demon) they call it in the chemotherapy world...Well this chemo is not working as planned..so cancer is progressing rapidly...now have to have another PET scan to see what the hell is going on...with the cancer...then will probably will be put on 2 different types of chemo plus blood transfusions...because my blood counts are always low...so getting clean fresh blood will help...who knows...I trust my doctors...but oh boy...I really have to stay strong and pray for a miracle....Love you all..... I need you all more then ever!! *****TEARS*****

    feeling exhausted.
  • ellamilana
    ellamilana Member Posts: 59
    edited February 2015

    Dearest Freebird,

    Stay strong, it is frightening, my heart is pumping, but rushing to pray for you, stay positive.

    Mutherflush, when you ask for biopsy, ask them for chemo sensitivity test. I am hoping to get it when I meet with liver surgeon and discuss my options, hopefully he will be able to operate, but my appointment is postponed again to next Thursday... xanax to the rescue

    Hugs to everybody, lets try to stay positive

    ~e

  • Joy78
    Joy78 Member Posts: 38
    edited February 2015


    I have not been here for a long time.  I  had surgery for a tumor in my spine back in 2006 and had a mastectomy in July of 2007.  I had had a breast lump for a while, but was too busy taking care of my husband, who also had breast cancer, MS and multiple other problems, and didn't take care of ME.  He passed away in 2006 and I finally went to the doctor's with severe back pain.  The tumor in my spine was dx as metastatic breast cancer  .   Over time, I have felt very well.  I had 3 Cyber Knife treatments in 2007  and was on Femara for several years.   I was being seen by my oncologist and a orthopedic surgeon, who was a cancer specialist.  After 5 years of Femara, it had run it's course,  and also was getting Zometa as an infusion.  I developed the jaw bone problem from the Zometa, so was taken off of that and put on Faslodex.   All along the orthopedic doctor was watching a small lesion in my spine and in 2013 some changes were taking place in my spine, so I had 3 more Cyber Knife treatments.  Then, I developed a compression fracture right near the lesion that they were watching. Cyber KNife greatly reduced the size of the lesion and I have had relatively minor back pain all along,  Ever since I had the first surgery back in 2006 , I had difficulty walking and still have to use a walker.  But, I feel good and don't really have any big problems.  However,  last week I had a PET scan, which I have been getting every six months.  Have not had any problems except for the lesion that they have been watching all along.  However, my oncologist called me in for an appointment today and told me that the PET scan showed 2 liver mets.  He has stopped the Faslodex and is going to start me on a chemo pill, which I don't know the name of and also a bone injection once a month.   I had to have blood work done today after which they will order the chemo med and get back to me as to how to take it, when I need to see the doctor again, and give me an appointment for the bone injection.  Needless to say, I am a little concerned, but I don't have any symptoms of any kind right now. The  PET scan I had 6 months ago showed nothing, except for the place in my spine, which had remained stable. So, this new problem has just developed in the past 6 months.  I hope I have remembered everything, as it seems like so long that I have been dealing with cancer.. Most of the time I don't really think about it, as I have felt fine all along.  And, I still will deal with it as best as I can and try not to worry too much about it.  I will be 81 in May and outside of the cancer,  I am pretty healthy and still take care of my own place and do for myself. I try to keep as active as I can.  Have difficulty walking really slows me down..   My blood work is good.  My tumor marker number went down almost to normal  (41)  after the last Cyber Knife treatments. I have blood work done every 3 months and the number has been going up a couple points the last couple times I had the blood work.  Last time it was 51,  which I know isn't that bad.  I have been reading some of the postings here about the liver mets.  I still have a lot more to read.  But, I do feel encouraged by what I have read.  As I told my son today,  I feel very fortunate to have done as well as I have over the past 8 + years and I am realistically aware that I know I will eventually die from all of this.  But, I have real good doctors and trust them.  I have to see the orthopedic surgeon on Monday and am anxious to hear what he has to say.  Sorry for the long post, but I wanted to try to include everything up to this recent dx.  I plan on coming back here a lot just for the information that I can find out about  and to get some encouragement.   

    Joy

  • freebird53
    freebird53 Member Posts: 141
    edited February 2015

    Life to me does feel like it is ending with this dx....one thing after another...is happening to me...and to beat all ...i get a disgusting email from my oldest daughter in regards of how she feels about my illness...she is sorry that I'm ill...but anything that goes along with it...she doesn't even care about...what i'm going through etc...history there...but I had to lash out and put a stop of her making me feel terrible about how she feels about her up bringing and life until she was 18...my other two children were there...they don't understand what she is even saying sometimes...they gave me permission due to my health and sanity to just let it and her go...and I had to...she has been toxic in my life since she has been an adult...and I don't need that now..when I am fighting for my life...and at this pt in time...I am fighting for my life since the calls i received this morning that the red demon is not working...I am just alone and scared more then i have ever been....OMG god please!!!

  • Woodylb
    Woodylb Member Posts: 935
    edited February 2015

    Freebird,

    I am very sorry adriamaycin didn't work for you and i know how scary it is to know your makers are rising. But do not panic , some cances really do not respond to Adriamycin it does not mean they will not respond to another kind of chemo. You are only on the second line chemo and still have plenty to try. So please, take a deep breath and focus with your doctors to get better and get the right treatment.

    Your daughter isn't she the one who was drunk last time and had a fight with her husband? If so , you should not give what she says too much attention. If she drinks often then you know that alcohol changes people and make them detached completely from reality. I do not believe she hates you but hates the disease, because maybe she is scared of losing you , even if she is an adult. Give yourself and her time for both of you to calm down so you can eventually talk.

    Right now focus on yourself and on getting better and God's willing you will. But you need to keep your inner strength and get ready to fight yet again and again against this disease. For this you need to be hopeful and strong to be able to beat it. Having your tumors markers rise does not mean you are going to die, it means the cancer is active again and rising and your doctor will change therapy. My prayers are with you and don't be hurt from what your daughter says , be sure she does not hate you , she is just lost and eventually she will come around.

    Love, hugs and prayers are with you , keep us posted.

  • Woodylb
    Woodylb Member Posts: 935
    edited February 2015


    Joy78,

    I am sorry you joined the club of liver mets, but you are welcome. You sound like a strong lady who delt with cancer perfectly well and held your ground. You seem surprised that the liver mets showed six months after the last PET. mine showed exactly six months after my last scan before my second dx. They were many and not two only, till now i had no symptoms and my blood work is perfect. Liver mets can be with or without symptoms. However, it seems your doctors have decided already on what chemo to give you and the shot for the lesion on your spine. Hopefully soon you will start them and get good results. My prayers are with you

  • freebird53
    freebird53 Member Posts: 141
    edited February 2015

    Miss Woodylb...no it's my oldest daughter we have a history... not the one that had a drama episode over the weekend...:) it doesn't matter...my journey is mine...and I will not let anyone intrude on it...I just need you ladies to help me through this troubling time...the rollercoaster sucks...

  • Joy78
    Joy78 Member Posts: 38
    edited February 2015


    Woodylb,  thank you for the nice welcome and for your encouraging words.   I plan on still staying strong and get through this next "bump in the road"..

    And Freebird............  my thoughts go out to you as you deal with no only your illness, but family troubles besides.  I pray that you can stay strong and get past all the negative things that your daughter has said to you.  You have to keep thinking about yourself.  My thoughts are with you as you travel this road.

    Joy

  • Jaytee
    Jaytee Member Posts: 738
    edited February 2015

    Sounds like a lot of prayers are needed out there! For unexplained pains, treatment options, trials, encouragement, lessening of fears.....you are all in my thoughts tonight. Hang in there everyone. Joy....you have been through so much and I agree with Woodylb, you sound like a very strong woman! Hoping that your Drs will find the right treatment to zap those liver spots. Freebird....joining with the others to lift you up and give you encouragement. Hoping also for you the right treatment to be found.

    I just had another treatment today...was supposed to have it yesterday and I was halfway there on a snowy morning, when they called me and and said one of the chemo drugs did not come in. It was definitely a better driving day today, but my regular onc was not there and I was the only patient in there today. Think I got a good cat nap in though...needed that cause the decadron has been making it hard to sleep well the last couple nights. Dh is going to be able to drive me over tomorrow to get my neulasta shot...I am glad for that. Will probably spend a lot of the weekend on the couch again..but will be thinking of you all. Take care everyone, be strong.

    Benjnate....stay warm! We sure can't seem to get a break from this freezy weather. Our puppy is the opposite of yours, he loves being outside and rolling around in the snow...He doesn't seem to realize how cold it really is! Wish he would just go out, do his business and come back in! :) Spring is only about 30 days away.....that gives me some hope!


  • ronniekay
    ronniekay Member Posts: 657
    edited February 2015

    Can't say it better than Jaytee & Woody...love to all...peace & rest. XOXO

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited February 2015

    Freebird and Joy - I admire both of you and will keep you in my prayers. This roller coaster ride stinks.

    Jaytee - Have you ever tried having your husband giving you the neulasta shot? I get mine through a prescription delivery service and my husband gives me the shot the day after chemo (in instances where I'm on a treatment that calls for neulasta). But my oncologist is over an hour away, so it's worth it.

    Prayers for everyone, every day,

    Penny

  • Woodylb
    Woodylb Member Posts: 935
    edited February 2015



    Freebird, sorry if i sounded in any way bothersome to you. I just wated to tell you to take care of yourself for the time being and know we are all here for you for support . Yes the rollercaoster sucks you are right but somehow , we always find the strength to pull through and you will too.

  • Woodylb
    Woodylb Member Posts: 935
    edited February 2015


    Jaytee, i like Penny get my shots done to me by my husband heheheheh and he gets yelled at everytime. I hope your shot will keep your blood under control so you can get your treatment. Stay warm. Love and prayers.

  • Jaytee
    Jaytee Member Posts: 738
    edited February 2015

    My husband would probably be terrified of giving me a shot! Were your's that way at first? I am going to ask my nurse if anyone there does it that way. Since they closed their local office, it is just about an hour's drive now depending on the time of day. I should be keeping a mileage log, dh said some of those expenses are deductible....Just more details to keep track of! sigh! I




  • ellamilana
    ellamilana Member Posts: 59
    edited February 2015

    Jaytee, I do it myself. Its only scary the first time, but really no big deal. My nurse trained me

  • Jaytee
    Jaytee Member Posts: 738
    edited February 2015

    Thanks Ella....I am going to ask them about it.

  • Woodylb
    Woodylb Member Posts: 935
    edited February 2015



    Jaytee, my husband was in the red cross so he knows how to give this shot as for me i hate needles and i wouldn't accept for them to teach me. But it is actually given like the insulin shot for diabetes , people lesrn to do it themselves.

  • freebird53
    freebird53 Member Posts: 141
    edited February 2015

    Well just got a call from my OC going to start next Thursday on Halaven (Erbulin)...Can I get some advice and se on this treatment please...Thanks... and for all of you helping me and others to stay focus I love you with all my heart...Carla


    Any information would be appreciated... :)