How are people with liver mets doing?
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Good morning dear Shetland Pony,
My case is in no way parallel to yours, so likely not useful to you. I hesitate to even comment on your questions, because my liver mets are both in and on my liver. Also, I have ascites (fluid in the abdomen) and peritoneal mets. It's impossible to separate the horse from the carriage. What causes different symptoms? Which mets cause ascites weeping?
I will note that CA125 has been a remarkably effective marker for my ascites/peritoneal mets of just over a year and also for pleural effusion for over 8 years.
I spent several hours reading about how the test works and still don't understand it well enough to explain it.
Aside: CA125 is known as the blood test for ovarian cancer patients and there has been some thought that it should be used to screen for ovarian cancer in asymptomatic, low- to average-risk women. Because of false negatives, false positives, risk of over diagnosis, invasive treatments, complications, etc. studies don't support CA125 as a screening method for the general population. Aside, neither are pelvic ultrasound exams for ovarian cancer in asymptomatic, low- to average-risk women. The controversy is remarkably similar to breast cancer screening and prostate cancer screening - do these tests help more than harm?
This is probably more than you ever wanted to know about CA125 and ovarian cancer screening, but as humans in a medicalized world, it really does help to understand the territory we travel.
Sending a hug of light while you puzzle this out, Stephanie
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Shetland and Isy, I do hope they get to the bottom of things for you both. There is nothing worse than the anxiety and worry of new symptoms and waiting. So far I only get some mild stabbing sensations in my ribs. Occasionally enough stomach upset to not have an appetite. I have also had pain in my right shoulder for a few months. My Onc said it was probably arthritis. But it does not feel like arthritis and I have had it no where else. So have to wonder if symptoms are being discounted? My TM's rose slightly last time but scans showed stable with slight improvement. Shetland, my understanding is that it can take 4 to 5 months for Faslodex to kick in full strength. I so appreciate your observation that we are victorious every time we face the day with courage and a smile. No one but a cancer patient knows what a lonely and dark "battle" we face. Thinking about you ladies today and hope things look better soon.
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Hello all! I am back from a nice vacation in SC to visit family. I forgot I had cancer maybe not for a whole entire day but for most of each and every day.
I have scans on Thursday and I am feeling just fine about it except for the fact that I just cannot wait to know the results! I think this is mostly the case for me...not fearing results as much as impatient for them.
Shetland, fear of original symptoms is something that definitely sets me back from time to time. Even had some extra scans thrown in there once because I absolutely convinced myself I was going down the inflamed liver path again. I was not, which I say not to minimize your suspicions in the least, and I love that my doctor ordered up those scans, even though she thought I 'd be fine to wait and see. Anyway, I still find myself in that place, thinking "Oh, no! I didn't eat that much and I feel full already." Or, feeling uncomfortably bloated, etc. But, I've decided to push it aside as far as I can will myself to do so. I take some comfort in what my onc told me at the time of my last moment of hypochondria (something that absolutely never ailed me prior to cancer dx). She said that many women highly attuned to their own bodies often can detect progression before she can clinically detect it. However, detecting progression earlier doesn't give cause for changing treatment earlier...there's no advantage changing earlier. So, I'm trusting in that and figuring that if things are indeed going south, I'll figure it out eventually, worried or not. Hoping you find peace in whatever happens. That's my prayer for myself.
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kaayborg, Something about your posts bring me great calm. SC sounds heavenly right about now. I believe that is where Kandy's beautiful yard is that everyone wants to go party at! We'll be thinking of you on Thursday!
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kaayborg,
Good luck to you on Thursday, we will be waiting for the update . Hugs.
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Shetland ,
I have had your symptoms before , during and after treatments , the last one being a month ago before my scan. Nothing turned out wrong , even though every time i thought it was back . My onc did not disregard my symptoms either but all looked normal and was seen normal. I have only fatty liver infiltrations but no lesions or activities are seen. But i understand how all these symptoms make you nervous and worry you. Hopefully they are only what they are, SEs from cancer and meds also. My colon has never been the same since the first cancer treatment and the bloating sometimes is part of it, as well as reflux and a tiny pain on the upper abdomen but it comes and goes. I feel it specially after my herceptin /perjeta.
I hope you soon put your mind at ease by knowning what it is. But i would not worry much specially that your Tms are ok and other tests. Hugs.
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I got a phone call from a different oncologist then the one I see this morning. Scary. but I was told that my oncologist was on vacation and that my CT scans showed NED! So relieved. Thanks for the support
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HAPPY DANCE Leftfoot! That is fantastic! May we all experience the same someday soon....Whoop whoop! Woody, It is very comforting to hear someone else talk about their bothersome symptoms and know it was nothing too serious. I know we are all different but sometimes I just need to hear that not everything is impending disaster....And Kandy's house is NC not SC! Oops...
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Hi all. Question do tms risr and fall? What if tms are up 85 points?? Ugh. Waiting on call from nurse.
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thanks Shetland. Sorry hasn't been on in awhile. Here we are and hopefully here we stay for another five.
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ugh. Dr just called and is ordering a scan for this week. I'm freaking out!! Tms r up 90 and liver enzymes are up a little. Oh no please don't let this be happening. I feel like I just got punched in the stomach.
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Livn, i am so sorry you have to deal with anxiety again. I am sure you will know soon enough and probably you doctor will have another med option. My prayers are with you, please keep us posted.
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Left i am doing the happy dance for you yayyyyyy! May Mr. NED stay with you for a lng time
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Lvin, so sorry that the panic is setting in and your ship is rocking. Breathe deep. It's not the end for sure. Maybe time for a change but also maybe not. Lots of uncertainty which is where we live. Hating that for you and all of us and wishing you the best on your scans. May all alarms be false and if it's time to change treatment may the next be long, long lived.
Leftfoot...yay! Spread it around!
A question for all: So it seems so many of you are watching tumor markers. My onc doesn't look at this or at least I think she doesn't as it's never been mentioned to me. I never know what you all are talking about number wise, though I know what tumor markers are. Are any of you aware of reasons this may not be part of my equation? Plan to ask at my appt. next Tues but just wondering in the meantime.
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my last onc, when I was stage 3, never did tms. He said not reliable. My new one gets then done, maybe becuz if stage 4. Not sure.
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thanks woody.. I'm really scared....
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kaayborg,
Maybe your TMs are not reliable, not all cancers produce this protein. I checkedsince the beginning but they were never very reliable except a little when my cancer mutated to her2 they rose a little. You can ask your doc next time
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Thinking of you LVin, and wishing you the best. My TMs were up before my last scan, and the scan still showed stable disease. TMs are just an indicator, but not the final determinant of progression, but i know how anxiety producing it can be. {{{{hugs}}}}
Kaayborg, Some docs don't put much stock in TMs and others do. I think that they may take them but if they don't really reflect your own cancer situation, they stop. Mine used to take a couple of different ones, but the only one that has ever been consistent for me is the CEA. The others look normal even when I'm progressing- so now he doesn't bother with them. I'm sure your onc has a good explanation for you.
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Livin- TM do fluxuate for many many reasons. I am hopeful that your scans are good. if not, I I am keeping it positive and saying that there is another treatment option that will help you stabilize. I know what it is like to worry about tumor markers. I worried over mine the other day. Just go back a few pages. Mine are abnormally high for me, but my scan was good. So I am hopeful that your scan comes back as stable.
Kaayborg- these are the most common TM tested
CA 15-3 ( normal range is <31 U/ml ) but this marker is elevated the first 30-90 days of treatment so best tested after 2-3 months of treatment
CA27.29 (normal range is <40 U/ml)
CEA ( normal range is <2.5 ng/ml for non smoker or <5 for smoker) cancer
CA 125 (normal range is 0-35 U/ml) - this is used for ovarian cancer but my previous oncologist used it for me.
TM are not an exact science. Mine have almost always been in the normal range even when diagnosed with metastatic cancer. What we watch is for an increasing trend upwards. If they continue to rise, or stay high for me then the oncologist will order my scans before the normal maintenance time. there are lots of things that can increase the TM including cancer cells dying, PMS, inflammation, etc. So high markers can be due to non cancerous things.
Hang in there
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Leftfoot, so very, very happy for you! Thank you for sharing good news.
Livin, I'm so, so sorry for your stress and worry. I know that feeling and to me it is just the most helpless feeling ever. I'll be praying for you and hoping the fluctuation is due to cancer cells dying!
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Lefty, happy for you, we all need a little good news.
Lvin, sorry for this new scare. I am still learning about TM, my MO said they were not reliable, but they did run it a month ago when I was dx.
I am having my 2nd Taxatere tomorrow. Ugh, I need to think this is worth it, cause right now I am having doubts. I did spend 3 nights in Calif. Over the weekend with my family. Nice hotel on the beach. Maybe overdid it. So sore today. I walked about 4 miles Sunday morning, in the sand. My gut & abs are screaming at me. Also swelling in my ankles. The swelling I think is common with most chemos, also flying back & forth.
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Leftfoot- great news- do your happy dance!!!!!! NED is pretty amazing!!!!
Livin-sorry for this scare. Every dr feels differently about TMs. For me the CA 15-3 is spot on and the CEA is totally not reliable. TM's are used primarily as an indication of what could be going on. But it is the scans that are most important.
Holeinone-sounds like you may have done too much!!!! Take it easier this time and see how you do.
Babs
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Leftfoot, so so happy for you, congrats!!!
Livin, I am so sorry you are going through this. My 1st 3 months of Ibrance, my tm's went up, every single month!! And i ended up with good scans. So don't let this get you down! We are here for you no matter what!!
Alissa
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Just got my TM results. CA15-3 went down from 128 to 70. MY CEA went down too from 24.4 to 18.1. I'm thrilled since my CA15-3 has always been spot on with what's going on with my MBC!!!!!
Babs
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wonderful news babs! Wishing more and more decrease ! Splendid awaiting more good news in the months to come.
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My TM's seem to be a good indicator so far except the last round they elevated slightly even tough my scans were good. Get another lab draw on the 18th so we'll see. My Onc does them once a month but does not put TOO much stock in them yet. Lvin, Trust me I know it is hard to not freak out, Sooooo easy for other people to say. However, try not to get too overwrought as it could very well be nothing, something small that might mean change in treatment that will work wonders. I have a feeling it will be OK. Keep us posted, we'll be thinking about you. Holeinone. A four mile walk on the beach sounds like heaven to me right now but would also kick my ass! I Need to start working harder on the fitness.....Yay Babs! Every victory is a thrill!
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Great news, Babs! Cheering with you!
Thought I'd also share another quote I came across reading last night. It's a bit different than the phrases I typically record in my journal but it may be one of the most profound and helpful to me in the daily casting aside of fears. I have a feeling I'll be saying it to myself a lot. "Stop worrying about shit that ain't happening!" Okay, I'll try.
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Congrats Babs!!! Loving all of the good news lately! And the good quotes!
Alissa
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I am so sad and angry right now. I had been told I would start clinical trial chemo on 4/8. Just got call from nurse that she forgot biopsy had to go overseas and be looked at by lab. It takes 5-7 days from arrival to be certified. She told me it still had not arrived.
Beyond the kick in the gut that the cancer is just sitting there, growing, I spent the last week re-doing my schedule for a 4/8 start. That required getting people to cover my chemo days and moving literally @ 10 full court days around.
I feel so helpless and defeated. I have to work. I need the insurance and the income. Intellectually, I know everything will work out, but emotionally I am lower than a snake's belly.
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