How are people with liver mets doing?
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Welcome home artist.
>Z<
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How awesome, Artist, that you will be able to access a workout room and pool easily. Now you just need a workable schedule, right? And how fun to explore your new neighborhood!
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It was fun Shetland to get out and walk the dog. We have rolling hills and beautiful vista views here. Then later we went to the hot tub which is sooooo soothing and therapeutic. Plus we met a new chatty neighbor! I will try and get out to walk everyday and then I have the summer off so laps in the pool and the elliptical will be my new goal!
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After Sono and BT and urineanalysis the best they could come up with is that it's a UTI due to some moderate blood in results. In the meantime D is kinda back to herself, on the downside the sono mentioned that nothing changed in the liver in comparing to last scan if anything, it got larger. That makes me very anxious.
Did anyone here hear of a Blood test called the Lactate Dehydrogenase, it's showing up as quite high, almost 10000 and I was reading it's not good. Being that communication is so poor with these ppl i have to guess. Again just have to wait and see.
Thank you so much for your concerns, everyone. it was scary, specially after last month with all the issues with the low blood counts.
It's actually been very crazy in the interim my Uncle, 95 mind you in quite a good shape, was Dix with an aggressive bladder cancer. He never had children and we definitely take that roll. So now it's been running to Onco and major decision making. BUt it seems that not much will be done because of his age and he is weak. My sister and I we gotta be there for him. Just need to have things under control with Dani so I could be with him a bit. Freaking unbelieveable.
Shetland hope you feel better soon.
Babs what a great time in your life seeing your daughter now, good for you. Yes that phone call was scary.
Zar keep up your good work. This week is the 2nd round for D, on Thursday and one more next week then I'll ask for scans, they would want it in another round but it will be too long for her, let's see.
Letmywifelive thanks and how are things by you?
Hi JFL- as far as I know MO should be cover but you gotta check what coverage you have.
MJH- sure hope the markers show that things are working.
To all feel good
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Mom - Thank you for the update. It's still early for significant improvement, I think or at least I hope. Always amazed how you keep going. You are the Mom All The Time.
>Z<
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Me too Mom, seems like yo have been on a very long marathon with no in between breaks. I hope things settle down for Dani and your Uncle so you can just breathe for a spell....
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Momall. It just never stops for you !!!! Please try to find some breathing time!!!!
Babs
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Momall, Now you are helping care for your uncle, too? Geez, you deserve a break. I don't know how you keep it together. Sending prayers for you and yours. I would be remiss if I didn't add my usual warning that you need to take care of yourself.
Lynne
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Thank you thank you my dear Gals. Well, I set up a separate folder for each, and I try to write things down. And I have you guys. And I don't know. Sometimes I do think something is wrong with me that I didn't have a a nervous breakdown. But I always go to Plan B anyway, so I'm kinda of ready. Like my SIL says what else is new. I guess I am being carried after all, you know from the Footprints in the Sand. Someone gave it to me a long time ago, it kinda nudges at me. BUT really, look at all of you. The creme de la creme. We aim for the good parts, and Dani helps with that so we all have no choice.
Artist I just reread, oh, my what good times. Have loads of fun.
Ziz thanks. Lynne thanks.Yep Zar always here if you need. Babs right? Is there such a thing? My Uncle is a truly special person, he was always there for us. It's our turn now. Waiting on some action now.
i didn't even go to the other threads yet, aghh, hope everyone is holding on.
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Momall. Wishing you and yours a happy Passover. Same to all who celebrate Passover!!!
For the first time in my life, I'm not going anywhere or doing it. So weird, but after the wedding and then chemo Friday night I'm just too tired. And my dd is in Strasbourg with her husbands family-so strange to say that. My son of course could not make time for us!!! It is what it is!!!!
Enjoy your family
Babs
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Hello. I have a question about my liver mets that are widespread (scattered pattern and lesions). Have you guys found that widespread mets totally disappeared after succesful treatments? MO (and 2nd opinion MO) said CT scan can show (1) shrinkage of lesions, (2) "disappearance" of tiny scattered mets (3) but cannot show active vs dead lesions that have not shrunk. I have had 4 cycles AC, followed by Ibrance/Letrozole. After AC, CT showed subtle regression of liver mets. After 3 months of Ibrance/Letrozole, CT showed 60% reduction. PET scan will not be ordered as MO has no justification other than our curiosity about alive vs dead lesions on CT scans. Liver MRI also would not add to CT result. In addition to CT, MO looks at TMs and liver enzymes. There seems to be no clear answer..can anyone speak to this?
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Sandi - there is never a clear answer. I am glad your doctors are willing to be precise and honest about the diagnostic tools and their limitations. However, with a 60% reduction in liver mets after 3 months, you can be sure you are responding to Ibrance. That is the key.
>Z<
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Thanks Z! My granddaughter's name is Zorana and I called her "Z" today. I thought that was funny.
Sandi
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Mom,
I have heard of Lactate dehydrogenase, or LD. It is an enzyme found all over the body. Back in the day, two types of LD were used in diagnosing heart attacks. Two others of the five "subtypes" are implicated in liver disease. It can also be very elevated when a blood sample is extremely hemolyzed (blood cells rupture) due to traumatic collection. We would call that falsely elevated and would not report the result to the physician. We would request that the sample be redrawn.
If there is some disruption in the liver, LD could be elevated, but could it also mean that the mets are being blown to kingdom come? I see that LD can also be used as a tumor marker, but I have no laboratory experience with that. Sounds like Dani's clinicians are not explaining this to you? Were there other abnormals seen in the blood work? It might be good to wait till the next blood work and see what the LD result is.
Sorry to hear about your dear Uncle. Some of us just seem to be caregivers in life; I am certainly one of those people. Remember the instructions for oxygen masks on airplanes: "fit the mask on yourself first and then assist the person next to you!" Good lesson!
love to all, may the force be with MJH
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Momall, bless you for taking care of everyone. Wishing you the rest you need.
Babs and others, Happy Passover!
Sandibeach, about the scans. Your description of what the CT can show is accurate. I also had widespread, multifocal liver mets. At my three-month scan (on Taxol) many lesions were still seen, but since it was a PET/CT we knew there was no longer any metabolic activity; i.e. the tumors appeared dead/dying/dormant. My TMs were still above normal, but had cut in half and in half again, eventually hitting normal for a whole year. During this time my PETs were normal, but the shapes never disappeared. What has happened with your TMs? Of course, they are accurate for some people and not accurate for others -- but if you see them dropping impressively, that would feel good. In any case, as Zarovka and your onc both say, you are obviously responding well to your drugs. Do you happen to have ILC as I do?
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Sandibeach, I see a lot of women around here responding very, very well to treatment and having major improvements (myself included). I can't think of anyone offhand who went all the way to NED with widespread liver involvement but I suspect there are women on these boards who have done that. Sometimes there is residual scar tissue with extensive liver mets that will never fully disappear on the CT scans. I have found PET scans valuable because extensive mets typically go inactive more quickly than they shrink. Also, in my case, they have shown increased metabolic activity despite my tumors shrinking, which eventually led to a progression episode about six months later. It was nice to have a heads up to monitor more closely - I temporarily moved from 6-month scans to 3-month scans at that time.
Mom and MJH, yes, some of us are just caretakers by nature and can never really fully escape that predisposition! However, we must try to put ourselves first here and there for sanity's sake! I am guilty of forgetting to do that (or just plain ignoring my own advice) . . . .
Artist, your new home sounds fabulous!! Enjoy.
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Thank you for the feedback regarding widespread liver mets and if responding lesions would ever disappear on CT scans. It seems from your responses that even if large lesions are inactive, they can still appear on CT scans and might even shrink. My CA 15.3 has declined since Oct 2016; from 400s to current 65. Liver enzymes normal. I have IDC according to my MO and path report. I had recurrence of DCIS in 2007 and MOs suspect it was really IDC. Guess breast cancer has been hanging out in my liver these past 10 years with no symptoms, then recently spread to lung arterioles. Bones, brain are fine and AC took care of lung issue.
I admire all of you who are carrying incredible burden from both your disease and personal life. I read your stories and my soul aches. Thank you for taking time to share your knowledge to help all of us.
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That's right, Sandi, even inactive tumors can still appear on CT scans. Your dropping TMs is very good news.
JFL, I have had a similar experience, with increased SUV (accompanied by slowly rising TMs in my case), well before the size of some lesions increased. It was not a dramatic SUV increase, either. How often do you scan now?
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Shetland, I waver between scans every 3 months to every 6, based on how things are going. I am currently at 6 months because my blood work has been good. My various bloodlevels rarely go out of normal range but when they trend up, even within normal ranges, they have been spot on. Have a scan coming up in a few weeks . . . Scanxiety!
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I think I'm joining you all here. I've been Bone only for 5 1/2 years so it's a little unnerving. I'll be having a biopsy soon. They changed from a CT guided biopsy to an Ultrasound guided biopsy. Does anyone know the difference, and why one might have one over the other? Then they'll send the tissue to Foundation to get the genetic coding to determine my best course
Stefanie
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Stefanie, ugh, I'm sorry to read about possible liver mets for you. Is there any question at this point? All I know about CT vs. ultrasound is that ultrasound would be cheaper and less radiation for you. Probably less complicated for the doctor, too. It will be a very good thing to get the F1 testing.
JFL, I would like to do the same with scans. Since my TMs have proven so accurate, I would like to use them to guide the scanning schedule in the future. In other words, to go longer than three months if the TMs don't change. I have a PET/CT coming up, too. This will be almost three months after switching treatment. My markers have not dropped, so I am a bit worried. I know it could be caused by tumor flare, but it didn't happen that way last time, with Taxol.
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Stefanie - very interested in the F1 results and how they inform you treatment. Please stop by when that conversation is going on.
The ultrasound biopsies are generally easier and cheaper. I was scheduled for an ultrasound biopsy, but the radiation oncologist wasn't confident he could see the lesion well enough to get it done with ultrasound. It just depends where it is.
>Z<
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Stefanie, I am sorry you may be joining us over here but it is good to hear from you. 5.5 years is a good run. I don't know about the biopsy issue but am interested in hearing from the others in case I ever get one . . . .
Shetland, good luck with upcoming scan. I hope it is flair.
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Ultrasound guided biopsy really is the only way. They likely can see mets on CT scan but it's pretty difficult to freeze your skin and stick a needle into the area of concern using CT...it would be more of a blind biopsy. They haven't perfected stereotactic CT biopsies yet as far as I know. It is sorta the same with MRI. They can't crawl into the machine and biopsy things. Until they have an ability to do it stereotacticly they are blind too.
I had an ultrasound guided liver biopsy to confirm mets at diagnosis in 2015. Using the ultrasound they can watch the needle enter the area of concern. My lesions are now visible only on CT and not even contrast ultrasound (not sure it that's a good thing or not) You will do fine! Just practice holding your breath for 20sec. The pain is minimal.
Good luck and hopefully the results are benign and you won't belong here 😉
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MJH your warm thoughts are so special. Thanks. The mask, yes Ma'am I'll keep an eye out for it! Very interesting what you mentioned about the LD, there was no trauma, it's taken with the rest of her BT. Her ALP has been inching up, tom she will get new Blood Tests. I dont'want this liver thing to get out of control, that's my fear. But I will only know the new results in a few days. So I'll keep an eye on this one. From what I read on Dr Google, yes, it was disturbing. And no, they are not there to really explain, she doesn't wanna ask. I did not go with her, I will not go tomorrow, and I thought I would wait one more time, if it's still up I will email them. Would you know from any other #s that are liver directed that I should watch for? Ast/Alt are still in the low 60's. So I can't tell. Her 15.3 and the CEA have been going up, but I am still optimistic that this Trial could do something. How are you coming along?
Babs, you know you were running on a full tank, all the adrenaline from the past few months, it could exhaust anyone. It's so gratifying for you to know your DD is with her additional family and comfortable, that's the best gift for you. I am sad to hear that your son is not available to be with you, as they say it happens in the best of families. Thank you for the best wishes for the Holiday. Holidays are hard on everyone, you just have to do what's best for you. Yes, we were at my DD's home, and had a nice time. Tomorrow she is due to continue with the Trial, so she won't be able to be with the kids, she hates that. This thing is always invading in the moments of life. But we'll be with the kids, and try to distract them. D's sisters are taking the day off and going hiking with them. Not bad. I hope you are coming out of your funk soon. You also miss your daughter, these things are not easy.
Stefajoy sorry you are here, but it's good they are doing a biopsy. Dani's lesions are visible on the US, they were originally detected in the Pet/CT, but just now she had a scare, so they finally did a US, and they got measurements seem to me very precise. So go for it, it takes a little time to get the results, I even called F1 directly after a week or so, and got the results from them, by the time they sent the results to doc and doc called us, I had it already.
Everyone else take good care,
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Thanks JFL. I am indeed loving the smaller, cozier simplicity of this new house.
Oh Stefajoy, Not the news anyone wants. I hope the 5.5 years points to slow moving mets in all areas and you are an exceptional responder. Biopsy was pretty easy....
babe, I'm not doing much either. All the kids are scattered and my family hasn't said anything about anything going on. Which is fine since it is a 4 hour drive anyway. Weird for me too, I miss all the kid stuff at Easter.....
And yes, Happy Passover to all who celebrate!
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does anyone know how long it will take for me to feel good after my liver biopsy? It's on Wednesday and I have dinner plans with friends on Friday. Should I cancek
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ou should feel well enough to go for dinner on Friday. The liver has little pain, just the outer capsule. You will just have a dressing on the puncture site and a little superficial discomfort at the site! Have fun at dinner!
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when my wife did her liver biopsy, she was fully active by next morning. Just felt a little worn out after the biopsy for a few hrs
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I just wanted to add my two cents that you should be fine to go to dinner on Friday. However, I had a liver biopsy over a week ago and I'm still having muscle pain in my side off and on. Not enough to stop me from doing anything, like dinner, however I have had to take Tylenol to sleep at night cause it hurts to breathe when I'm in certain positions. I think it has to do with the fact that they went between my ribs through the intercostal muscles which are now sore and trying to heal. Not to scare you, but I wish someone had told me this was a possibility before I went in so I could have been better mentally prepared.
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