How are people with liver mets doing?
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Grannax2, that is so awesome!!! We will pray that nothing interferes with this wonderful opportunity!
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Thanks Aussie Cat. Love your name. I hope so too.💞
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Grannax-So happy for you! I hope you can make it!
Raven-I'm sorry that you haven't been able to take your chemo for 5 weeks. I've been on constant treatment (4th chemo currently) for 6 1/2 years. You can do it. They said I could take a two week break at most. Which I have done, for vacation, once. I pray the med they give you boosts your bone marrow. Big hugs!
I hope everyone has a nice Thanksgiving!
Lynne
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Grannax! Texas does the Big Apple! I can't wait to hear all about it!!!
HAPPY THANKSGIVING ALL!
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Thanks, Grannax2.
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Wow one thing leads another! That's so exciting! Hmmmm I wonder what will be next. TV commercials maybe?
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The designer goes to Paris and London but the survivor models have not gone there yet. I think Suzanne Lindley does a lot of fund raising. That probably decides who and how many get to go. Samina Mogul is the designer. Her gowns are heavily beaded evening gowns. Beautiful, and her models are the tall skinny ones. Stamina lives in Dallas.
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Hi girls,
Saw my onc this morning. He says the lymph nodes under my left arm where I had the Mastectomy 5 years ago, plus 6 clean lymph nodes all clean. Have disappeared, also the lungs are clear, and mediatinum. Bone is sclerotic but I take Zometa every 4 weeks, ioinixed calcium is still high 1.55 he asked me to stop taking vitamin D for next CT scan. Liver has no visible tumors but have turned into areas that are regression.
Liver bloodtests are still high, whih he doesn´t understand. TM for ca 15 has gone up 1,000 from 2 weeks ago. He says it could have explanation. I was in hospital running low grade temps for 3 weeks.
I am happy could be alot worse. But now starting tomorrow I go back on chemo. Xeloda low dose 500mg in morning and 500mg in evening. MY feet were bad lost 4 nails. peeling te whole package. And Navilbine lower does every 2 weeks starting tomorrow.
Happy thanksgiving
Raven
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Raven, that sounds like a good report! Hopefully those numbers will get back in line soon.
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Lynne,
I was taking the Navilbe missed one round due to low low wbc. I had to stop the xeloda my feet were a mess. I stoped that for 5 weeks am starting tomorrow, but only 1000mg a day 7 days on and 7 days off. He is also cuttig the Navalbine wants me on it every 2 weeks, Then zometa every 4 weeks my iodied calcium is 1.55 normal is under 1.32. it´s been going up.
Raven
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Hi everyone, I got my port today and it went very well. The doctor and everyone else in that dept are wonderful. I felt like I was so pampered. I got conscious sedation so I was awake the whole time. I did feel the lidocain shot but after that nothing. Then I had to stay for 2 hours to be monitored and they gve me lunch and coffee! Now to just sleep off the meds and go to uncle Bill's for thanksgiving tomorrow!
Happy Thanksgiving everyone!
Raven. My CA 27-29 is up to 2000+. Before Xeloda it was 5000. X brought it down to 180 something in 2 months, then right back up again. All that is ever found is progression to bones. Something is going on with the liver but no one can seem to figure that out. Hopefully chemo will take care of that part.
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Hope everyone is well (given that we are here). I have a statistical question to ask and am not sure where to ask it. I know that a fair number of us BC "survivors" end up with MBC. Yet I think most people in the general public feel like that is fairly rare. I was reading the other day that about 20% of BC pt's being stage IV de novo. And we have all heard that about 30% of early stagers become stage IV later. For the first time, I thought 20% + 30%... even with shifting proportions, that is darn close to 50%. But no one ever says 50%. Maybe the 30% already includes the 20%. I'll do some research on statistics but just wondered if anyone had heard this? Thanks.
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I often wonder the same thing. When they do those statistics are they only going to 5 years after initial dx? I am starting to think that the younger you are and the more time left to live, the more likely it will come back. If you don't die of something else I think everyone will get it
I used to look at pubmed stuff when I was early stage. I remember one of the papers started with "most women with early stage dz will eventually develop Mets" . I was like WHAT?? I didn't look into too much then bc it was too terrifying to consider. Yet here we are. *sigh*
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I would also like to see some accurate reporting on how many breast cancers eventually end up at stage IV. In looking over some charts on the number of people who progress after an early breast cancer diagnosis, it doesn't hit a strong plateau at three or five years, it just keeps
drifting" downwards as time goes by- to me, it looked like there might be a plateau out around 50%, and ever since then I have wondered if it really isn't that uncommon to get a metastatic diagnosis. Does the 20% or 30% number they put out there have a time limit (like they are only including the number who progress within five years after early diagnosis?), because if so, it is very misleading. They do meta-analyses and quantation of so many parameters, but it seems that this is one case where they are happy to just use some old statistics?PS Love the mom stories- my mom is not inclined to swear, but you can tell she's losing it when you hear "Hell's Bells!" No idea where that phrase came from; never heard it from anyone but her
PPS And in case you did not realize, apparently there are bells in Hell
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I have always wondered about those statistics as well. I was diagnosed as stage 1/ 2 because I have bilateral breast cancer, but didn't have progression until 6 years later. Does that mean I'm not counted? And from what I've read, they don't even count us as stage IV, we are always counted as our original stage but "with mets"
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GG I think it is after 5 years you are cured. I got Mets 8 years after initial st 2 treatment so I'm pretty sure you and I are both cured. Isn't that great!!!?
Hells Bells is a song by AC/DC. Just kidding lol don't know where the saying came from but it's older than acdc.
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I had DCIS in 2006 and 2007. A oncology nurse practitioner back in 2012 asked me why I still came for my annual check up as it really wasn't necessary for DCIS patients to come back after 5 years.
I felt embarrassed, but ignored her and continued my annual check ups. Stage IV occured 9 years later, med onc suspected it had traveled via chest wall probably in 2006 and landed in the liver.
So..do the checkups. Stupid statistics.
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Sandibeach that is pretty ignorant for an oncology nurse. My oncologist did the ca27-29 for the whole 8 years between my stage 2 and stage 4 dx. I'm always thankful for that because it was not part of the recommendations or standard of care at the time, and was rejected once by insurance. I did not have any symptoms at all, so how long would it have been if I simply waited for symptoms? I probably would have needed some kind of spinal surgery.
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Looking at it with simple statistics note: If 100 people have breast cancer. 20% Stage 4 De Novo - so 20 people, leaving 80. Of those - 30 % goon to develop mets. So 24. A total of 44 people, 44%, of people diagnosed stage 4/with mets.
I often use the 100 people in a room analogy to try and visualize stats and risk.
I now have mets so I leave behind those stats. I sometimes worry how long I have left. I have had just over 2 years with mets so I'm just past the average survival time. However, I do think any survival stats are not important. Wha will be, will be. I 'm having a little of a bad time recently, horrible chemo side effects, raising liver markers, terrible chest cough, changing chemos and significant dehydration caused by current. And not being able to keep my TG dinner down. I try to keep positive (hard recently) and think Statistics are overall population based on evidence - but not an individuals direct forecast.
Really hope to be able to see improvements in all the numbers soon. we deserve to be freed from these hard treatments!
with love
Sarah
PS: I am (well was) a data manager so numbers are always a great love of mine.
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Cross posting here-
Ugh! Where to start? I saw my oncologist today, monthly appointment. LFT's mixed-ALT, AST up to 73 and 80 from 32, and 40. My ALK PHOS down 6 points though. Scariest thing is my tumor marker. Had gone up from 182 on 9/28 to 632 on 10/26. Now 4 weeks later it's more than doubled to 1,311. My doctor wants to keep me on Ibrance even though I was only on it for 2 weeks before I had to stop due to low ANC. Started 100mg today. Blood tests in 2 weeks, may have a scan in December. I feel great, no pain anywhere to speak of. Could tumor marker be ahead of scan? More sensitive? Doctor said if liver were in bad shape bilirubin and other liver tests would be off. He wants me to stay on it for at least another monthto "give it a chance" How long do tumor flares last? So sad and confused. Onto Halaven if this fails.
Jill
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Sarah, thank you!! see, that makes sense, plus it means a lot more mets than people make it out to be. Plus, there is still the question of whether that is total number of cases or within a 5- to 10-year timeframe. It's great to hear from you (!!) but I'm sorry to hear about everything you are being put through!! Is there a chance, after the chemo or between chemos, to go onto something like Abemaciclib with some Keytruda? You do hear about them mixing it up, and/or going back to anti-hormonals after a chemo break, so I wonder how they make those calculations. I agree about the two year survival and try not to look at any of those statistics, although I thought I saw an MD Anderson comment about 40% survival to year five, well that may be the average among their patients. But it points out that in addition to stats being outdated, it can also vary depending on where you are treated, etc...
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Jill, I have had high markers for over two years now. I was on ibrance/faslodex for 16 months. I had two scans during that time that were both showing improvement. At 16 months the 3rd scan showed progression (just still in bones) and at that point the ca27-29 was over 5,000. I went on Xeloda and in 2 months it was down to 183, then right back up again to now over 2000. Now there's something up with my liver but no one seems to know exactly. Liver numbers have all been slightly high ever since ibrance but never enough for him to be concerned and they are not as high as they were months ago. He says all phos is high due to bone Mets. Tbili has always been normal though. The other 3 are high. Before ibrance the marker were a very good indicator, always well under 100, and I would get scared if they got to 100. After the one good scan with it in thousands I just tried not to worry as long as I felt good. Now with this liver thing I'm wondering if I was too complacent and everything is going to crap very suddenly. Start abraxane mon and just hope it fixes whatever is wrong.
I do remember many others telling me that ibrance can take a long time, even 6 or more months to work, and it was true in my case. 2nd scan during it was better than the first with markers higher every time. I ould definitely stay on longer than 2 months.
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Grrifff, just to give you my data points. When I was first diagnosed with mbc extensive liver mets, my tumor marker was high but my liver numbers were within normal range. In my case, tumor markers are ahead of scans. Your situation requires good judgement and experience, and frequent monitoring. Are you confident about your onc? I wouldn't want to abandon a treatment too soon, and I wouldn't want to wait too long and let things get out of hand, either.
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HLB-I love your " and everything is going to crap very suddenly" That's exactly how I feel. When first diagnosed in 2017 de novo my TM was 581. Letrozole for 6 months brought it down to 167. Great, this is easy, I can do this I thought. February 2018 TM started creeping up. And so did some gnarly dark bruises. My onc knew immediately-bone marrow involvement. Confirmed by biopsy. Started taxol April 3rd same day as port placement. Taxol was always 1 step forward 1 step back. Started A/C on June 28th and boy did I feel good. Ended up in the hospital with pneumonia twice from low ANC, WBC but I knew it was working. A scan during this time showed a wonky shaped liver, highs and lows not a smooth uniform appearance. Did CT, MRI and PET nothing showed definitive mets to liver. Diffuse mets he said. I just feel like I can't catch a break.
Shetland-I do trust my oncologist but I asked him the same thing yesterday. Can I be on Ibrance all the while this rising TM is getting out of control to the point that chemo can't rein it in? I'm worried that while he wants me to stay on Ibrance/Faslodex and give it a chance that my grade 3 tumor is having it's way with my organs, especially my liver. He said he will do a liver biopsy to see if it's mutated. Mine was highly ER+ PR+ so hormonal therapy should be working. I'm 45 with 12, 15, 16 year olds. My oldest two I know will be fine. My youngest and I have always been close and she is transgender. I'm sad I won't be here to guide and protect her. I need something to work more than 6 months.
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Grifff, I always have the sudden decline in the back of my mind because I see it occasionally happen to people on here. And also a friend of mine had it happen. Had a scan that looked good and felt good, working FT, two weeks later felt dizzy, found brain Mets as well as lung, liver, lymph nodes, bile duct. It was shocking.
I was the same way, started on letrozole which was great, a tiny bit of joint pain but that was it. That worked for almost two years. After that, every treatment brought markers down drastically for 2 months, then up again, although I did stay on all of them at least a year. First he wants to see trends, not just one high marker. That takes months. Then when we see the trend we get a scan to confirm because "we don't treat the marker" . I sort of got used to this and sometimes I would be the one to say let's wait one more month. Of course I depend on him to tell me if it's dangerous. I think I should have a biopsy too of the liver because it apparently looks like cirrosis but he highly doubts it and doesn't seem convinced it's Mets either. He is more focused on getting the treatment started because of new bone areas. I am panic stricken about the liver and am totally focused on that. New bone Mets is nothing new to me. The problem is I'm driving myself crazy researching because if I don't know what's wrong I don't know what to do. Most likely cancer, which I'm starting chemo soon for, but what if it really is cirrosis? In that case I'm afraid of just about any treatment because I want to protect the liver! I think I need to stop thinking about it altogether and bring up the Christmas tree! Very frustrating.
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Grriff I just had a port wed and it's so sore! I'm worried about using it Monday. How was it to use yours on the same day? I was nervous about getting it but I have to say everyone in the department was so excellent, I felt like I was having a spa day!
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HLB- similar diagnosis, cirrhotic liver. Had a PET scan on 9/28 still no definitive liver mets. Circled CLINICAL HISTORY says not apparent on CT, ultrasound, this MRI or the PET I later had. So confusing, I think I’d feel better if I had the biopsy to know for sure. Maybe it’s mutated.
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Hmmm very interesting and confusing. It looks like everything is stable but that the MRI was not meant to detect Mets? Wish I knew a bit more how to interpret these things. I decided to not look at mine until doctor appointment because I will get all worked up for no reason. It is encouraging that other imaging tests did not show anything wrong. Would be nice to know for sure.
My pet said "worsenIng cirrosis" and ultrasound said cirrosis. Apparently a lot of scarring. The longer I live with this dz the more I think my gosh these people don't know what to do, they're just guessing at everything!!
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Hi all,
HLB I'm not sure really what to do with my liver. My function is good. My enzymes only went up after my Biopsy. I finished my first round of xeloda.
Its crazy to think I am going to be taking some form of chemo for the rest of my life.
Im really thinking about your hero doc. My only discouragement is if its in my liver now is it just a matter of time before it moves to other spots or does anyone think if you knock some spots out this a cure. Im sorry Im confusing myself.
It goes back to when I asked my Docs to remove the one and only lymph node that had cancer, before I ended up with liver mets but said it didnt matter because it was already in my blood but of course > They gave me rads for the local skin mets and cured it.
Anyway I appreciate the knowledge that is shared . I am so happy for this forum otherwise I would be a panicky basketcase.
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