How are people with liver mets doing?
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Ella,
Thank you for telling the story of this lady! It is wonderful , this goes to say that no one can actually predict when it is time for us to leave unless the order comes from above. I am happy the lady got to know the child inside her and gave him life. Amazing and a hopeful story.
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Oh Ella...what a heartwarming day you had!!!! Thanks for sharing :-). Thank heavens that young Mama found your dr...one who obviously gave her hope & healing! And thats's the wish for you too...that you feel good & this chemo does the job!!! Did I miss what you're on now?
Woody.. Interesting that biopsies aren't the standard when mets are found. I spoke this am w/a childhood friend that was dx w/bone mets in '12. Last year it went to her liver & it's now progressed to lungs. She's been on arimidex (after xeloda & a few others she couldn't remember). I asked if she'd had a biopsy when they found liver mets..she said no. She'll start taxol next week but I said to discuss it w/her onc....who told her she could have 6 mos-1 yr. Of course, I wish she knew first hand of the stories of sisters here...but I told her of you & others. So...again, thank God for this place...she thanked me over and over again.
I'm getting her/perj and the nurse just said my kidney level is high...normal for me is .7 & it's 1.19. Getting fluids & giving a urine sample-either dehydration or bladder infection...gott go pee in a cup
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Thanks RonnieKey,
I was so emotional, holding my tears back. You should see her, her eyes, so happy
I am on Tykerb/navelbine 8x2 weeks, he wants me to take Tykerb 10 pills the day before, the day off and the day after chemo-30 pills. I trust him, but looking for some kind of incide experience. I posted a while ago, but did not get any response, I guess not a lot of woman getting this combination. Thank you very much for asking, feels good to know someone cares
Cheers
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RonnieKay, are the most effected when we get those treatments chemos or others. This is why every 2or three weeks i get my Creatinine level checked . But do not worry about it . Perjeta causes water retention , and others cause dihydration , they will fix it as long as your kidneys are functionning normally no worries. They may perform more blood tests though. I hope your mind will be put at ease soon my friend . Keep me informed. Xoxoxoxoxo.
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Ella ,
All the people who went on tykerb on this site, did not continue with it, most of them got highly allergic on it. So i hope you will be able to continue and it does a good job for you. If anything Sloan memorial is the place to be. They are good , do i know you are in good hand. Prayers for you and the lovely lady with the precious bundle she was carriying.
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Hi All,
I am new to this site and I am so happy to have found it! I had my 1st Cancer in 2008 ( Stage 1) but was diagnosed with Stage 4 in 2013.Mets in bones, peritoneum lining and liver.I am 45Y. I have been taking Capecitabine since Oct 2013. It reduced my biggest met in liver by 40% ( Now 1.4cm). I feel very good and can still run and swim.( I really believe any form of sport helps tremendously) I have some feet and hands symptoms but this is not bad.I have just started a discussion on another forum, about selective radiotherapy of the liver (SIRT)and Chemostat ( high quantity of Chemo directly in the liver) . Has anyone experience any of these treatments? Many thanks
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Welcome Torridon (sp?) and AliceBE to this site as you will really find it comforting through the weeks/months/years you go through your cancer journey.
I can't get Penny out of my mind, I'm really feeling her emotional pain for some reason. Please everyone let's send good thoughts to Penny while she is in the hospital waiting to see if her bilirubin goes down.
My wbc were again too low this week, but my Onc said since they were right on the border lets go for a lower dose of Halavan so we did. We decided that we will continue on this low dose until I move on June 11, and will be 6 blocks away from a beautiful satellite hospital and can get tx their and see him once a month which is about 20 minutes/half hour depending on traffic. Then we will really take it up to full dose this summer as I will do neupogen (?) shots if I have to, to keep the wbc in line. I just can't believe that in a matter of weeks I won't have to do the 4-5 hour round trip that I have been doing for six years....I'm really surprised at how stressful that trip was and I didn't realize it.
Happy Thursday everyone!
Laura
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Benjnate,
I am glad you got a closer center where you can get your chemo wothout having to drive hours. It will take the edge of a long ride. I had the same problem with taxol, from the first dose. So i continued the whole on weekly lower dose and i did well. At first since my WBC were low i had neupogen but later i quit neupogen all together and i am doing fine. I still have one dose and i will finish with taxol yayyy. I will co tinue though on hercept/ perjeta every 21 days.
I hope halaven keeps working for you with ease and few side effects.
I have been praying for Penny , she is not sleeping too much , and worried her billirubin is down but not enough yet. If it keeps lowering till monday she will get her tx. I really hooe she does. Prayers and orayers for our dear Penny.
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AliceBE,
Welcome to the thread and not to liver mets
. You will find this thread very useful, helpful and friendly. The ladies here our wonderful and caring. Xeloda seem to be holding you stable and i hope it continues. Stable is good in stage IV . The only one who can advise you about SIRT and ablation to the liver is Penny and she is presently at the hospital. But to my knowledge not many people woth liver mets are canditate to invasive procedures. Even though one tumor disappear another one comes out instead. So i will advise you to see more than one opinion before you cnsider such procedures. I hope you get inspired and a good onc who will advise you correctly.
Welcome again and hope to see more posts from you with the same lively spirit as this one.
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Woody - good to hear that you were able to get off neupogen. You're doing so great now, you're my inspiration. I did Taxol for 6 months and am glad you are on the homestretch!
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Ellamilania- I am on tykerb and xeloda. but I only take 4 pills of tykerb a day , every day. They are 250 mg tablets. I take them at bedtime. I have been on tykerb since december of 2012 and have done well. NO new brain mets and no new liver mets. So this combination is serving me well. I hope it works for you. Just thought I would post since I am having good results.
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Hi everyone,
I've been reading this thread a lot lately, as my bone mets of four years have moved into my liver. Lesions are still small, four of them so far, in the millimeters, but I've been having some pain in that area, so they may be going like gangbusters, for all I know. My doc took me off Faslodex and put me on the new targeted therapy, Ibrance, with Letrozole. I just finished my first cycle and am waiting to get blood work done to see if I can continue on schedule.
I have a couple of questions. Do you all tend to have pain with these mets? I can't understand why I have these little sharp stabs if my mets are so small. Also, has anyone else not had chemo when their cancer moved to the liver? While I'm glad that I have another chance for hormonal and targeted therapy, I'm a little concerned, also, that we may not be aggressive enough in slowing this down.
I'm glad this thread exists. Best wishes to all.
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These postings are so helpful everyone. Learning about how others with liver mets are doing gives me hope. I too hope Penny can get her treatment. Been praying like crazy for her. I am still trying to get to know all of you.
Sandilee. I am a newby and also had some liver pain. Before scan which showed 2.1 cm lesion I thought something might be going in there. I also had biopsy on liver met and then got chemo a few days after biopsy and I think the chemo irritated the biopsy area. Be sure you ask onc about biopsy on liver spots as often the pathology changes when it gets into liver. My onc is doing Fish test as biopsy was leaning toward Her2+ which opens up more treatment options. Talk to your onc about your concerns about treatment
I am only wishing best outcomes for all.
Diana
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Leftfoot,
Good to hear from you it has been a while. I am glad you posted about tykerb since the only few people i know had allergy on it, it will put ella's mind at ease. I am also of course happy you are doing well , i hope you will keep doing for a long time. Hugs
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Thank you Benjnate, I am doing well thank God and wish it to you and everyone on this thread. I think getting a lower dose is helpful while increasing the number . For me it was either 80 per m2 every 21 days or 60 weekly. I went for the latter and cut down on neupogen after a while. After next week i will be on tamoxifen and herceptin/ perjeta as i took before aromasin , i didn't work and femara for three years, arimidex is the same as femara so my on. And I decided to try tamoxifen rather than faslodex. I hooe halaven is doing a god job for you . When will you scan ? Hugs and prayers.
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Sandilee,
I am sorry your bones ets spread to the liver, but unforunately it is either the liver spreads to the bones or the other way around. Some have pains on liver mets snd some don't. I didn't . But your pain could be caused by the bones rather than liver mets. I had chemo , then anti hormones then back to chemo and targetted therapy and now i will stop chemo and maintain with anti hormonal and HER2+ tagetted therspy. I hope your doctors find the right xpcombination for you. We are all here to help each other go through this. Keep us posted.
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Hey ladies,
Penny is out of the hospital and is doing ok , thank you all for all your prayers. Thank you Lord !
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Diane50,
I am glad you are doing the FISH test , i do not want to wish you a more aggressive cancer but HER2+!targetted therapies seem to be working. So i wish you what would help you to fontrol the beast.
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I'm so very glad to hear that Penny is doing better!
Hello, Everyone, I think it's time I introduced myself. I have been reading this topic since I was diagnosed with liver mets several months ago. It really helped me to read your stories and learn that it wasn't necessarily the end for me yet. I had had some URQ pain on two occasions, but my blood tests were normal and the doctors mentioned possible gallstones. Nobody thought I was in much danger of recurring. But the ultrasound and PET-CT showed a liver full of tumors. I cried for a week, then got busy dealing with weekly taxol. I had complete metabolic response to it! Now I'm on Ibrance + letrozole.
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ShetlandPony,
It is only normal to be scared and devastated when your worst fear becomes a reality. But thank God you seem to have responded well to taxol and got a great response. I hope Ibrance will keep this result for you for a long time . The important thing is you are well , keep your spirit high so yur body will be well in order to fight this . We are here whenever you feel like talking or venting. Keep us posted.
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Everyone has had so much going on - Penny, hope you feel better & get out of the hospital soon. I apologize for not addressing everyone individually; I've got a lot going on besides cancer, imagine that! Not stuff I care to deal with, either.
Unfortunately, I'm done with Halaven. After a great initial response, the beast has outsmarted it, some of the liver mets have grown in size. Will be trying Gemzar next. My understanding is now that I've been on IV chemo for almost 2 yrs the chance of me having a positive response declines rapidly. I've blown through 3 chemos since September; very depressing. We had "the talk" - not being encouraged to stop treatment, but given the reality of anything being effective at this point.
Hope you all have a good weekend. For the new folks, hang in there, you ever know what might work, we are all so different.
Anyone with Gemzar experience?
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Oh hugs to you SyrMom. No one ever wants the talk especially since we all think about it every day. I pray that the new medicine works for you and that the " talk" faces away in the distance.
Penny- glad you are out of the hospital. Rest now.
woodylb- thank you. I read posts but don't usually have time to resopond as I am busy chasing my 4 littles around.
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Thanks leftfootforward, I hope it continue working for you. Mine is doze dense in combination with Navelbine and I did not see anybody taking this combination. Can't say I'm worried, but hmm...
Have a good weekend everybody
Cheers
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Syrmom,
I am sorry you had to quit halaven and sorrier you had to listen to the "talk". Nobody realyy knows what works and does not work. I hope Gemzar will be the right one.
I had Gemzar upon my liver dx, side effects are mainly fatigue and low blood count and weight gain. It is mainly used in liver mets and uterien cancer. Hoping you will get a good response. My prayers are with you, keepus posted.
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Oh SyrMom, I'm thinking & praying Gemzar works! My favorite go-to-girl is Denny 123...I found her when first dx w/liver mets. I logged on & saw, "10 yr anniv of liver mets." She was on Gemzar...I'm thinking for quite some time. Then, there's bhd...I think she's done 16 different tx. Faith, sister...hope other things in your life settle down...wish I was close enough to help.
Shetland...very happy for good response to taxol! May you be forever clear!!!
Sandilee...hmmm...don't know much about ibrance, but it seems, just reading the posts here, it must be something good. Shetland, however, sounds as though she's getting it as a stable insurance. Is it used for tumor activity? Maybe others have more info. Wishing you healing!!!
Ella...sounds like tykerb must be a good piggyback drug! Hope it works wonders! Leftfoot....glad to see you...is a good example of it working! And I'm a fan of Navelbine!!! Double whammy can't hurt :-).
Laura...hoping your counts are working up & you're feeling good. So happy for your upcoming move...I'm thinking your house sold quickly (missed that scoop), hope boys are happy & the fact you're close to care...awesome!!!
Good Morning, Woody...hope you have a beautiful weekend. I think DH has headed back to Saudi Arabia. Take it easy...I know he showers you with tlc when he's there...soon your energy level will be bouncing upward when taxol clears out...jumping for joy!!!
Love to all...DH and I are going to swim laps in the 1/2 salt, 1/2 chlorine pool that's wonderful. Sending hope for healing...Penny....you're always on my mind. XOXOXO
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Love to all...so much going on...glad to hear Penny, that you are out of the hosptital and feeling better.
Thrilled that Woodylb is showing NED!!!! WooHoo!!! I am doing the dance of joy and then some for you.
Welcome to all the newbies, you will find this a a source of rest, comfort, knowledge, humor and great caring. I know I have lots more catching up to do with everyone. Had my CT scans today, so will get back Monday evening after I've gotten the results. Praying for a wonder filled weekend for all of us. I'm looking forward to just sitting on my back patio and watching the birds and the butterflies for a few hours and resting my soul. See you on Monday!
Debbie
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So happy to hear Penny is doing okay!
Welcome newbies. I have found so much information in this thread.
For all of you, my doctor told me yesterday that we only need 10% of our liver to function. I didn't realize it was that small of a proportion. Loved hearing that. Feel like I have some breathing room with this whole liver mets thing!
Sandilee, I am sorry to hear about your liver mets. Chemo was not in my treatment plan, except that I had to do one "bridge" dose of weekly taxotere before I had the baby out because they can't give hormone therapy during pregnancy. I was switched to hormone therapy immediately after delivery. I had the same question when dx'd and was told that liver mets are treated just like any other breast cancer - wherever it travels in the body, it is still breast cancer.
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This thread is suddenly more active. I apologise if I don't address all of you personally. There are a few new names here, so first of all hello to the newbies on this thread.
Penny, I think of you often. I am glad you are home and hope you are getting plenty of rest. Praying for lower bilirubin levels on Monday.
Ella, thank you for the story of the young mother. It was uplifting. I met a lovely young woman when I was having radiotherapy treatment for my primary. She was pregnant with her first child when she discovered a lump in her breast. Her doctor insisted it was related to the pregnancy but she knew instinctively it wasn't. She finally had a mammogram just before she was full term and they discovered a large tumor. Her pregnancy was induced, she had a lovely baby boy, and days later she had a mastectomy. She was frankly terrified that she would not see her little boy grow up but just two weeks ago I ran into in the cafe at the hospital. She is doing well on tamoxifen. Seeing her again made me so happy that day. I haven't heard of anyone doing navelbine and tykerb together. Have you thought of starting a new thread asking if there is anyone else? There could be someone who is just reading here and missed that you are doing this combo. They might respond to a more direct topic header.
SyrMom, I am on gemzar/carboplatin combo. I am on a 3 week cycle. First week is both drugs and second week is gemzar only. Third week is no treatment. I have just started my 8th cycle and have to say that the gemzar only week is much easier. I am on my 3rd line of chemo since being diagnosed with mets a little over a year ago and this one has proved the most effective so far. I have had regression on my last two scans but I cannot tell and neither can my doctor which of these two drugs is proving to be the most effective.
Benjnate, Hurray for getting rid of that stressful journey! It must have been terrible last winter when you had all that snow to deal with too. I hope the move goes smoothly.
Sandilee, So sorry to read of your progression to liver mets. They seem very small from your description and should not really be giving you too much pain. I have been told by several people the hospital that most liver pain comes from the liver capsule being stretched. When Xeloda failed me completely, it never worked, my mets grew to several cms and caused a lot of pain in my URQ both front and back. I could also feel how hard and rigid my liver had become. The edge of it was palpable. However, each of us are an individual and it could be this is how your body is responding. I should also add that a couple of days after starting my current chemo combo (gem/carbo) the pain increased substantially. Happily that was the chemo doing it's worst on the mets.
Shetland Pony, Wow! Complete metabolic response to taxol. Congratulations!
Debbie, good luck with those scan results on Monday. I hope they indicate a good response.
JFL, In addition to the liver being able to function with quite a low percentage of normal tissue, it also has an excellent capacity to regenerate itself if there is not too much scarring involved!
Not much news from me. I had a phone call from the hospital late Thursday evening to ask me to call in the following day as my magnesium was a bit low and they wanted to start me on supplements. Looking at the dose they have given me It was more than a bit low! I'll find out for sure next week when I meet with my onc.
I'm taking advantage of the steroid buzz and having one hand free while I am moving around the house now to get a few jobs done that have been outstanding and which only I can really deal with.
Sorry again if I missed anyone out.
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I love reading all the posts from you all. Happy Penny is doing better too. Our bodies are amazing; they are designed to heal and after these treatments and how we rebound is a gift from God.
Spring, I have been taking ️Slow Mag for supplement. Avoid regular mag b/c it is rough on stomach and intestines. If you are low on magnesium you will feel more aches and fatigue. Magnesium regulates muscles (heart) and blood pressure. I take 2 ️slow mag in AM and 2 night. I have had to get IV mag when my levels drop to 1.5.
Good luck to those having scans. Happy for everyone responding to treatment. I pray for all of us that our oncs can find medicine that works on these liver invaders.
I am on holding pattern. Waiting for results of Fish test and then week off of tx for my trip to nephs graduation in minneapolis. Only had 1 lxempra (@3 weeks) and am not getting it before I fly June 1. Will start cAncer killing with Lxempra june 8. I guess I am on vacay. Lol. Best wishes and no harsh side effects for all.
Diana50
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Thank you, Woodylb and all for the warm welcome.
My "liver pain" if that's what it was, seems to have abated- just lasted one day,but it was pretty constant. I'm hoping it was a temporary flare up from my new hormonal meds working, and thanks for reminding me, Springwatch,that it could be the case. Makes me feel better, anyway!
Ronniekay, Yes, Ibrance is a new drug used with the hormonal Femara. The trials showed great promise in extending time to progression, so many of us using it are hoping for a miracle.
I just completed my first cycle, and am now waiting for my blood counts to rebound so I can start again.JFL- comforting to know that not everyone with liver mets gets immediate chemo. One always wonders when the cancer progresses, even if we have trust in our doctor, if we're being treated aggressively enough.
diana50- Yes, thanks for the biopsy reminder. I've been wondering how big the tumor needs to be before they biopsy it. Right now I'm on a new med, but as soon as it seems to not be working, I will want a biopsy.
I have a fortune from a cookie I got last year up on the mirror in my bathroom. It says, "You will have good health for a long time." I wish you all my "fortune."
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