How are people with liver mets doing?
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sonyarizzo,
I know how hard it is to wonder what the best course to take might be. A lot depends on the size and number of liver tumors, probably, in your doctor's mind. If there are just a few, he might be happy to let the hormonal try to work longer, but if he is worried about the liver getting out of hand, I can see why he would want to hit them with an effective chemo. In this case, if you trust your doc, I'd probably lean toward his suggestions, as he has been on this road a few times, as they say. On the other hand, you can always get another opinion if you have doubts about his recommendation.
Your results on Wednesday may make it easier to make a choice. If things have stayed stable, he probably will be ok with letting things go a bit longer.
I am sort of in the same position with Xeloda. I was on Faslodex for three and a half years for bone mets when the cancer moved to my liver. I went on Femara/Ibrance for three months, and my tumors increased in size. So off that I went, and on to Xeloda. So far, the scans have showed they reduced in size and are stable (eight months on this drug.) He may want to take me off of the chemo to try another hormonal that I haven't tried yet, but I wanted to stay on Xeloda awhile longer, as it was working. He agreed since my tumor markers have settled (they had been slowly rising, even with the stable scans) but his idea is that a hormonal can work longer generally than a chemo, although a chemo can kill off a lot of cancer so that a hormonal can be tried again.
Maybe if you have 12 weeks of Taxol, and your liver tumors regress, he would be open to going back on a hormonal to keep things stable. This whole thing is an art as much of a science, I think, and there often is no one right answer. Good luck to you!
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sandilee. I agree it is an art and a science and God. It's all in His plan. I'm just so tired of being in limbo. The thought of an IV chemo again scares me really bad. Sometimes we beat our bodies up so bad with chemo that we can't fight any longer. I want to save the big find as a last resort. I haven't tried xoleda yet. I would like to try it before we bring out the big bad IV chemo. My onco keeps trying to tell me that the IV isn't any worse than the oral. I don't buy it. I'm trying really hard to avoid it for as long as I can. I was stable for 2 years on arimidex when I was first diagnosed with mets. I would love an extended stable again. I have been on a continuous roller coaster for over a year now. Cancer loves the liver and it a hard to get it to stay away. This life is so hard. It's exhausting. It never gets easier and you never get used to it.
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Oh jeez...I've been away from this thread too long...breaks my heart when I log on & see so many new names & faces. At the same time, I'm relieved we have each other, with so much experience (is that a good thing?), but love & support, understanding & empathy.
Artist...I'll be praying for good scans on Thursday...you know we'll be right alongside you! JFL...I went through turmoil trying to get xeloda approved. My onc wanted it w/navelbine & herceptin, but the ins powers that be (no oncs!), decided there weren't enough million dollar studies to warrant the 2 together. I ended up with perjeta in its place...which ended up being a very good trio of meds for me. I'm so happy the stars aligned (divine intervention) to get you the meds & make it to the airport in time! I'm wondering what conference you're attending...hope there's great info & support. Being surrounded by sisters at this tough time will surely give you hope!!!!
Sonya...Sandilee has great advice...there truly are iv chemos that you can have success: qol & life, with. I was on navel/her/perj for nearly 2 years & lived pretty much my normal life...yes, being more careful w/keeping a healthy immune system & yes, being reminded constantly of the disease & being frightened, but it worked well. I pray you can reach Ned w/out iv chemo, but just know that if it becomes necessary....there are drugs that you can have qol with.
Im sorry I don't recall who is getting a port (if I go back...I'll lose what I've typed)...I had my first removed when I was "cured"...I said it was the best day of my life. When I got my port w/3rd, stage 4 dx, I said it was the best day!!! I can't believe getting accessed somewhere outside of the cancer center will mean they need to use veins...ugh.
I also have aches & pains, but they're mostly due to muscular exertion, even though I always fear it's due to lurking bc cells. I am lucky to be doing well, but I take prozac, do acupuncture, walk & am going back to yoga to keep my mind sane. I pray earnestly for everyone, all of us, living with this disease.
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Rodeogirl,
I do not know how high they mean hear . But anything higher than the normal is considerate high some alarmingly high ans some just a tad or a bit higher. But when the doctor says it is very high this would be in the 700 and above and normally the billirubin will climb high as well which will mean the liver is not functioning properly and the problem should be addressed
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Sonya,
I am sorry you are in such a turmoil. But let me tell you your onc is not wrong iv chemo is not much worse than pills or any other. It all depends on each individual and how we respond to it. I had four courses of chemo and lived pretty much a normal life without the hair of course but the quality of life was ok. As for xeloda my feet were hindering my daily life . If you still have some place where you still progressing and others no then the treatment is not fully benefitting your cancer. Taxol is a good chemo for cancer , i took it weekly on low doses for 6 months along with other meds and it worked wonders for me. There is also another lady who did only taxol it got her to NEAD for one year. It really all depends on what your doctor believes , he still knows best. And do not be afraid of chemo . Our bodies are beaten every day by different things not only chemo. This is the reality of cancer.
You have to be comfortable with yourself , keeping your strength has nothing to do with the meds. It is you inner strength which will fight your cancer not your body on his own.
I hope you soon find your way and find peace in the decisions you make.
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Ronniekay..Thank you! QOL is important to me even if do end up bald again..I really do hope that this med combo starts to work!
Woodylb...Thank you! It is good to know that people tolerate IV chemo well. I didn't realize that when you have mets that the dose is lower. I would love to be NED again! I am trying to find my inner strength again. I feel like I lost it when I started Ibrance. It took all my energy its making me depressed. I am thinking of starting an antidepressant, but I don't know if I want any more crap passing through my liver. I need my inner strength again, I just needed to put the boxing gloves down for a bit. Sometimes you just get tired of the daily fight. I guess I just need to mentally prepare myself for the fact that IV chemo is coming soon. Maybe I will go try on my wig..LOL
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saw the oncologist today. I am no longer going to receive Herceptin. I might be able to use it again somewhere down the line but probably not. We had s long discussion on what to do now. Tykerb is out at least for another 6 months or longer. Since my last scan was NED I am not eligible for any trials. TDM1 is an option but is also Cardiotoxic so not something I can start now until heart function gets better. Plus it has its own set of SE which are stronger than what I'm dealing with in Xeloda. So I'm in a weird place. I could stop taking Xeloda. As well and see what happens. I think I decided to keep taking the Xeloda and go without s targeted therapy for now. We will scan frequently to watch for changes.
I'm a little scared which is why I will stay on Xeloda. Might take a chemo holiday over the summer. I am not comfortable not taking anything. We will see how well Xeloda does on its own.
What a roller coaster.
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lefty, I agree. A scary, nauseating roller coaster.
I got my tumor marker test last night online. Drum roll............dropped by almost 1/2. Happy Dance ! My liver still is huge, but not as hard. My tumors are innumerable, so I know this takes time. I have a belly ache most of the time. The CAT scan my stomach & bladder were compressed from the liver. Also curious if this will change soon ?
In your pocket, whomever is getting tests this week. Trying to keep up, figure out who has what going on, it's a new language here.
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Sonya lolllll ths is the attitude at least with wig you can look any way you want. Seriously now , i know what you are feeling , it is a tough roller coaster and quality of life is a big part of it. But if Ibrance is depressing you maybe it is a good idea to take a mild anti depressant a lot here on board take one. Discuss it with your onc and maybe he can give you something mikd just to help you get ou of this impass. I hope you soon go back to your old self again with you boxing gloves and fight the damn disease and meet NED again. We are here always ready to listen. Hugs
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Left, i am sorry tou are stoping all targeted therapies for now but if it is for your heart health than it s worth it. I breake never hurt anyone. Staying on xeloda alone is not bad and who knows it may be able to hold it until your heart is better and psychologically you will not feel unprotected. God be with you . Keep us informed. May you stat NED no matter what.
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Holeinone ,
Yayyyyy half is not bad at all , it is better fir the treatment to work slowly the fast thus enabling the tumors to return fast and stronger. It will take some time but you will get to a good place
Still you desrve a happy dance ! Awaiting more good news.
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Leftfoot-I'm on X alone and it is working-hopefully it will for you!
Hole in One- 1/2 is great! Happy dance time!!!!
Sonya and woody-yes, it is a roller coaster ride-one we'd all like not to be on. X has been working thus far but last week my liver enzymes went up a lot (more than double) which scared me since they say X effects the liver and I was nervous I'd have to stop the first txt that worked for me. I had a blood test today and the liver enzymes went back to what they were-within the normal range! Yippee! But my HFS is so bad! So many ups and downs on this ride!
Babs
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Some more good news to report here. With reduction and delay for 2 treatment cycles, we still have shrinking tumors. By only a few mm but moving in the right direction, feeling well, and keeping counts where they need to be...well, this makes me quite happy. I actually feel it as the best news I've gotten yet. Nothing on my brain MRI either. Yip, yip, yippy!
Keep good news coming from all and to those at the bottom of the track, may you zip directly to the top of the biggest hill and breakdown there. Normally a terrifying place to be stuck, but on this roller coaster, stuck on the up is grand. Perhaps the biggest hill should be named Ned.
I did get some info from my onc about TMs and why changing treatment at the earliest progression is not often best. First, she defines early as just a few mm of progression. She also thinks the risks of changing treatments prematurely and developing resistance to treatments faster, outweigh any risks of waiting a bit and watching more closely to be sure if something is really up or not. She doesn't use tumor markers but has begun to use them a bit more with patients who desire it or are used to it in other practices. She thinks they are most helpful with bone mets. Of course she offered to do them for me, but I declined. I'm not sure I would be able to take much stock in them. I'm not sure I'd want the false worry. What do you think?
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Kay, I bugged my MO to do them when my first round of tx was completed. NO ! Against protocol, not a sure science. She has run them twice now, since becoming stage 4. It's the CA-25 one. (? Not sure, have to look that up). My first test came back crazy high, in the 400s. The number I got last night was 240. Still crazy high. But makes me more positive that I am enduring more chemo for a chance to get a few more years. I think the normal range is under 40.
I still cannot get over what a short time you got before the new dx. My stage 3 was aggressive, and I was told by numerous Drs. that my odds were strong to have this progress. So my 2 years post treatment, I never believed I was cured. Of course I wanted too, or have this pop up in 10-15 years, when I was older. Did you go through a angry spell?0 -
Babs, Xeloda does increase the liver enzymes but if your liver is healthy dispite the tumors the enzymes will come back down and yours did . So yayyyyyy! I whope Xeloda will keep working for you for a longtime.
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Kaayborg,
Yip yip for more and more good news! I am thrilled you are well and your tx is working on killing your tumors . I hope you soon get to a good place.
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Holeinone and kaayborg,
Not all doctors check TMs but it is never against protocol. But in or order to check them and get more or less accurate results, you have to have a baseline. Tumor markers should be checked at the beginning of a dx before treatemt starts then the doctor will know if they are reliable or not. If you do not have a baseline than you would have nothing to compare it too. With some people it is a very good indicator with others not so much. I check mine but i do not rely on it completely, while with other sisters here and friends it is very accurate. The breast cancer marker is CA15-3 and in some liver mets cases they check CA27-28 . Ca125 is for uterine cancer.
So it s a choice whether t have it done or not. Depending also on the onc if she/he believe in it or not. It depends on each indiviual cancer if it produces this particular protein or not.
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like someone else said, sooo much to catch on when you haven't been on for a while!
Kay, glad to hear you're still doing well on our favourite gem/carbo. Feel I'm going to be moving on soon. Liver is good but pain in ribs and pelvis tells me that bones need attention. Scans tomorrow but feel like I know what they're gonna say. My body is talking to me loud and clear! Hugs to all,
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woody, thanks for the info. You are a wealth of knowledge.
Isy, In your pocket for those scans tomorrow. Let us know.
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definitely feeling more like my self these past few days. Maybe I went back into denial. Hey it is better than anger and sadness. I swear I have been through all the stages of grief so many times. Denial is great! Little dose of reality today with blood work. Hope my TMs have gone down. I sometimes want to ask them to stop doing the TMs. It is so stressful. Especially with how high mine are. I get mine monthly and have watched all 3 of them rise to a very scary place over the past year. So fortunately, or unfortunately...mine are accurate. It is usually a sign that the cancer is either on the move or it is getting worse where it is. It would be nice if CA 27-29 would get out the 18,000 range.
To all of the ladies who got some good news recently YAY! I love hearing good news. It gives hope. And may you stay at the top of the roller coaster for a long time. It is a good feeling. I hope to join you there soon. It has been awhile.
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Hi Sonya,
Yes, denial can be a good place, especially if you're feeling well enough to enjoy it!
When I mentioned the stress that rising tumor markers caused me to my oncologist, she suggested not using them and just making treatment decisions based on how I felt and what she saw. An imaging exam could be used for more details. That was a couple years ago and I stuck with the tumor marker tests for a while, because I did want to know.
Now that I'm on hospice, I don't get any blood or imaging tests. I'm pretty anemic and they check my fingernails, palms and lower inner eyelids for paleness to confirm. Then suggest I take more iron pills.
Not an exact science, but how I feel is more important than any measurement they make.
Taking it one breath at a time, Stephanie
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hi everyone. ...on March 4th found out about liver metastasis with CT scan of chest; March 17th had pet CT scan that showed lymph nodes and 2nd smaller tumor in liver. I'm scheduled to start treatment until April 26th! Should I ask my Dr about doing another scan to have a good baseline to determine if chemo is working? I'm afraid it has grown a lot over this month and 10 long days...
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gramen, sorry for your recent dx. Is this your first dx with Breast Cancer, or is this a progression to stage 4? I would guess the 2 scans you just had will be used as a baseline.
Did you have a liver biopsy?
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hi Holeinone, 2nd dx, had chemo +1 year herceptin/surgery/radiation/reconstruction in 2014/2015. Every Dr kept telling me to live my life but I felt fatigued and that something was off, breast surgeon finally agreed to scan in march. Sigh. Scan from March 4 showed tumor to be 4 cm, March 17 was 4.5 cm liver biopsy march 18 confirmed is the same nasty her2+...so scared this thing is growing exponentially and I'm not getting treatment soon enough.
Thankful for this blog. Lots of good info and experiences.
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Hi and thanks Woody, Thanks for the positivity on treatments and I pray the same for us both! My enzymes were AST 535 and ALT 740! Very high apparently.....After I quit both Femara and Ibrance they are normal again. It took about 2 1/2 months to slowly come down. sonya, When I first started that combo I saw improvement in TM's and scans in first two months. I hope the same for you and you can stay on it a very long time. WBC's are the thing that could derail some but they can lower doses too. Best wishes ladies!
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graymen- hang in there. My liver Ws full of mets to start with. Very soon after I started treatment I was NED. You are at the scary part now. But you can live life with stage 4 cancer.
Hugs
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Thank you for your words leftfootforward.
I've been wondering how I'm going to keep it together until the start of treatment and today ended up taking a puppy that my little brother couldn't keep at his apartment. Is going to be a good distraction in the months ahead!
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Holeinone-I cannot get over how quickly my cancer recurred either. I knew tnbc's recurred more often and on average within 2.5 years, but being stage 1a, I figured my chance of landing in the 30% or so that do recur, was even less. I don't think I really even had to time to fear it much. I had in mind a 5 year plan to do all I could to live life and prevent recurrence. Then to rejoice, that the 5 years meant most likely I was done with cancer, that I'd made it. What can I say? I'm talented at being unfortunately special. Angry? Yes. None of it makes much sense, does it?
Gramen-Sorry you have to be here with us but glad you found us. A puppy should adequately distract. Post a pic if you can. I'd love to see that adorable face!
Who is the dancer? I remember that someone is a dancer. I'm thinking Artist or Shetland, maybe Isy. Anyhow, I am looking forward to see this tomorrow evening. I have recently been in contact with Susan in the video. She is a family friend of a friend. I love her!
Watch "Our Hour: Cancer Research through a Dance Community" on Vimeo: https://vimeo.com/161667993
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Gramen a puppy is a wonderful distraction I'm jealous I love dogs and would have one if I didn't work!
Kaayborg. Great news. Do your happy dance!
Holeinone. Happy to hear TMs are going down. You should also do the happy dance!
Isy. Hoping for good results for you tomorrow
Woody. Thanks for the positive vibes
Night all
Babs
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Isy,
I am sorry for the pain in your bones. But you know even though i am currently NED Ihave bone pain all over the body. My ribs, pelvic area, coaxis and all my vertebrae. Still no activity on any of them and an xray on the ribs showed only sclerotic bones and osteoporosis. I do nt take meds for it except rarely some solpadeine. My doctor told me these are healing bones and also treatments do this to our bones they degenerate. Of course you check it out with your onc but don't be so worried m it maybe just the side effects of chemo nothing less or more.
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