How are people with liver mets doing?
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Ugh, sorry to hear that Left. Sending positive thoughts your way.
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thanks. I try not too.
My tumor markers have never been high. actually they rarely are out of the normal range. Two are actually in the normal range but one went from less than.5 up to 2 g highest I've ever been) and oneissosorcis at 23 and that one has always been around 12. Last one is at 53. That one doesn't concern me. It's more that the other two jumped so much. They've been so steady for two years.
But my last scans were in January and were clean. But in my world things change fast. I get scanned every 3 months so if things change its always caught early.
I am sure I'm fine but it's unsettling at best
Thanks
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left , sorry for your tms wnd ughhh it is. If your scan is far from now maybe you should ask to do ot immediately. But like artist said do not stress before you know what is really going on. I hope it is something of no consequence which could be solved promplty. Praying for you.
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unsettling is right Leftfoot. Everything about our lives with this disease is unsettling but hopefully it's just a blip and your last scans showed the true picture. Had my bloods drawn just now so will get news on that tomorrow. Have felt really tired and a bit nauseous all week so thinking that something is going on. Yuck and ug
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ok so I just read that menstration/ovarian cysts can elevate levels. Lucky me I stil get my period and had it the week before. So I am going to say the results are due to that . Staying positive.
Hugs and hopefully good results to you isy
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Great to hear! I do hate all these little things that set off our worries but how can we help ourselves but go there. My lower legs are covered with tiny red dots. I'm guessing my platelets are still getting kicked down by gemzar even after the reduction so this is disappointing.
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LF-sorry about your TM's. Did you Dr. order scans now? Try not to stress out-easier said than done! We're all here for you!
Babs0 -
It must be tm and blood test time for all of us! Went to onc yesterday, my bloodwork was low, but enough to restart Ibrance, should get tm test results today, and now a PET is scheduled for tomorrow, a whole week of anxiety! My 1st pet determined the stage 4, the next one showed improvement, this will be the 3rd one. Hoping for good results and happy vibes for all of us!!
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Oh leftfoot, hearing that TMs are up must be very scary. How are you feeling (physically) and when is your next scan?
My experience has been similar to kaayborg's, in that my husband and I feel better now that we can talk about it. The social workers at my cancer center, after much conversation, convinced us that trying to protect each other would keep us apart emotionally, while talking would help us stay close.
Woody and artist, I'll be wearin' the green to my next scan also. "I am not having scanxiety, I am not having scanxiety, I am not having scanxiety..."
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Mama2twins, I'm just feeling that your next PET will show continued improvement!
Isy, try to remain neutral. Your results are not back and you don't know that anything is going on. I am trying to do this myself, since every twinge right now tries to scare me. Leftfoot, I know. Even with TMs in normal range, a few points up worries me, even though it does not worry my onc.
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Isy, i hope your tms are ok. Maybe the tiredness and nausea is related to stress. I think all of us feel tired and nauseated from time to time. Before my last scan i felt the same and bloated and i expected my PET to show something , it did not. I hope all is well , please keep us updated.
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Mama2, I hope your third scan will show more improvement, you are in my prayers.
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Shetland, No scanxiety , no scanxiety , no scanxiey , just scan symptoms
Praying for all of us
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Woody...scan "symptoms"...now that's a new one :-) Thanks for the support..oh jeez, what-truly-would we do without each other!!! My mind went back to first dx, too, when I would only cry in the shower, not wanting DH to worry. I typed that in my Sept 09 Chemo Sisters blog. When another sister said she did the same, I knew I was in safe arms...still wrapped in understanding! I had pt on my neck...really messed up muscles...not a tumor after all...ugh. I've always been aware of what my body needs to work well...now, it's such a Corp shoot for all of us. BC makes heightened awareness a nasty word!
Leftfoot...I'm so relieved there may (has to!) be an "acceptable!" explanation of raised TMs...and all my young sisters...I'm totally po'ed that you have to deal with periods & bc...or bc & periods!!! My TMs are right on for me..and my C spreads fast & furious like yours, Left, so I would get the concern w/January being "a long while ago"....but then my prozac kicks in & says, "it's really only 30+days!" So...hoping that stupid cycle is messing w/numbers. My blood draw yesterday showed low neutrophils..outta nowhere...fine white & red...just a blip that's weird.
Kaay...Don't know how many lower doses you've had, but is it possible the spots are higher dose reaction & just "clearing out?" Hoping they aren't itchy or painful.
So many scans, tests this month...I'm also thinking, praying, hoping for good results for all. And I tell myself if they aren't the best, we'll just do what we need to do...cause that's what we do. Off to the last bb game for GS...XOXO
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Shetland, I'm trying to chant the same mantra, "no scanxiety" but have some some stabbing rib pains in the last week or so concerning me. (OK freaking me out) Had a big stitch this morning and it sent me into a spiral. (So much for my advice leftfoot! Easy to say when it's not us right?) Still two weeks to go for "green day" scans. Think I just need a big fat hike somewhere with some fresh air to shake this off but the bad weather is kicking in and we are supposed to get a boatload of snow by Sunday...I too try to limit how much I dump on my DH. I think a part of me feels afraid that he will get war weary. Or I just feel so bad turning his world upside down with mine. I should know better as he says I AM his world. But never the less......It is sort of like Mommy guilt, always trying to protect the kids.
Ronniekay, I envy you going to BB with GS! Such a cute pic of you two! Thanks for letting me vent gals. Feeling better already. Thinking of you all...0 -
Wanted to share some more good news with my wonderful BC sisters. My CA 15-3 went down from 234 to 128. Last month they went down about 20 points-this is just so amazing.
I am hoping for similar news for all of my sisters here. And if not, we'll all be there for you as you've all been there for me.
Babs
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Support is right, I just don't know what I would have done without you guys on here and you are all so amazinglyknowledgeable. Over here in Oz the docs don't seem to like to tell us too much, and whilst we do get some choices in our care it's mostly taken out of our hands. Perhaps they feel we're too delicate to make decisions! So the outcome of my tests is that my liver is "slightly irritated" - see, not much technical info there. My liver function was spot on and blood counts border line so had chemo today. Thinking the "irritation" and nausea may be down to nsome new painkillers (naproxene) so going to try something else.
Was nice to see a new junior doc today, apart from the unsettling fact that she looked about 12, was full of enthusiasm and new knowledge. She felt my liver was less lumpy and softer than last week so I'm taking that with me as a positive and put the "irritation" (I presume that means elevated enzymes) at the back of my mind.
Hang on in there everyone and have a great weekend!!
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fantastic news babs!
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Yes, great news babs! And you as well Isy! It is very annoying to me when the docs treat you like a kid.....I have a right to know EVERYTHING!!!
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Great news babs , i hope they keep dropping.
Isy , anti-inflamatory drugs causes enzymes to go up , so yayy you liver feels better on touch.
And Artist , the stabing pain may mean nothing , i have had it for a while and nothing is showing on scan ultrasound or xray.
All of us let's get ready for our scans , tests and so on and hope for the best, like Ronnie said that's what we do. Prayers to all of us.
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Thanks for all the kind words guys!!
Great news babs!!
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Hey ladies, wow, lots of scans, tests and activities. Great news, babs. Sending my best wishes to all of you. I agree about scan "symptoms", I can't tell you how many times over the years I've developed pains leading up to a scan that I was convinced were something new, only to be proven wrong (thankfully) and the pain would disappear as fast as it started. It goes to show how powerful our brains are and a good reminder that not all pain is cancer.
On a different subject, I learned a little trick from my oncologist yesterday and thought I would share if it helps anyone now or in the future. She prescribed the drug Reglan to help with stomach emptying. My liver mets are so huge these days, they push on my stomach and I can barely eat. I took a dose of Reglan last night with dinner and it seemed to help a little.
I am making an appointment with Palliative Care for next week, so I'll let you know what I learn.
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Hi Nancy H.,
I too have large liver mets causing pain and pushing on my stomach. Together with the ascites this leads to much discomfort and also nausea.
Reglan has helped, but a combination "cocktail" of split doses of reglan and zofran and addition of the homeopathic remedy nux vomica has really eased the nausea and hiccuping that was making me walk like a drunken sailor on a pitching boat. (the word root naus comes from the Greek word for sea).
Sending a warm hug and healing wishes for all here, Stephanie
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hi all. Good to see good news on this board, congrats. Have 6 more rounds to go. Last week liver enzymes were 40 and 50, this week went to 86. Ugh. Dr does not appear worried said they flucuate. Also have had ache in liver side by ribs off and on. Sigh..
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Thanks Woody and Nancy, I value your experiences very much and that helps me relax a lot! Nancy and Stephanie, I wish there was a way to take all these super helpful tips and tuck them into a folder on here somewhere for future reference. Nancy, I am glad you found something that helped a little and hope palliative care will add even more tricks to your arsenal. Ronnie IS right Woodie. Scan away I'm ready and hoping for the best. Take care all!
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Thank you all for your continued support!!!
Babs
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Nancyh , i hope palliative care succeeds in giving you more comfort and rest from large liever mets. My prayers are with you for a better quality of life.
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Hello,
I am new to the liver mets site. I have been over in the Ibrance site and just wanted to come over here to show support and also to receive support. I was diagnosed with bone mets in 2013 and liver mets about 6 months ago. After liver mets were discovered, we tried Afinitor/aromosin and although my first scan after that was clear, my TM's and liver enzymes continued to rise. Then about a month ago a liver MRI showed lots of growth on my liver so we changed meds to Ibrance/faslodex. I have been on this combo for a little over a week. I am tolerating it pretty well. I have my first blood draw since being on this med next Tuesday. I am a bit scared because my numbers have been really high. I have read some peoples numbers on here and also on the Ibrance site and mine just seem scarey...Last blood work showed AST 172,,,ALT 143.....LDH 778....CEA 567.......CA27-29 11,907 and CA15-3 1654. Anyone else have scary high numbers like this before?
My cancer has always behaved strangely. I was diagnosed at 35, I am now 40. In 2011 I had 6 tumors in one breast. In 2013 I had innumerable tumors in my bones, I had my ovaries removed and there were cancer cells in my ovaries. I am not genetically positive so it is strange for it to go to my ovaries. Then in September 2015 I had innumerable tumors in my liver. By December I had clear scans..No tumors anywhere...but numbers continued to rise. Then in February innumerable tumors again in the liver.
I am just scared. I have two young children and I pray that the new meds are doing something. I do have some liver pain. Nothing too terrible just an ache every so often. I try to stay positive, and I pray a lot. I just need these scary numbers to come down and for the tumors to stay at bay for a bit.
Just trying to buy as much time as I can.
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Sonya, i am really sorry you are here. I am not familiar with ibrance /faslodex but i do know for some it is working very well. Your numbers are intimidating , true, but it does not mean this treatment will not work for you. One week is very short to tell if it is working or not, it may even raise your numbers a little more. This happens sometimes when you start a new treatment. But if it is working it will bring back down. So have faith and a little patience and give it time to work.
I know you are axious and scared but it is the only way to tell if a treamtent is working is to wait at least three months , during which you will be monitored and your doctors can tell if they should stop or continue.
I, like you run towards praying, prayers are very helpful and give us hope. So i will add my prayers to yours and wish you good response . You are young and it is very hard when you have young children , i hope you have a long time with them and that your next blood work show promise. God be with you and all of us.
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Woodylb. Thank you for the prayers. I do expect my numbers to go up the first few blood tests. That is what they did with my last chemo pill. It is scary to watch them go up, but I was told that it's normal in the first few months. What isn't normal is them doubling and trippling 6 months after the start of treatment and unfortunately that's what happened with afinitor. I really pray that doesn't happen again. I need something to work for an extended amount of time. I haven't had that for a long time. Arimidex worked for 2 years and since then nothing has really worked for any amount of time. It was really strange when I was NED one PET scan and then that went away really fast. just really praying this works for more than just a few months.
What meds is everyone on to keep the liver mets away? What is working for people?
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