How are people with liver mets doing?
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Husband 11 Bravo to your wife!
Babs
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wondering if anyone had any success with liver mets while on letrozole and Ibrance. Thanks!
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Letrozol and Ibrance pretty much wiped out all the mets in my liver in about a year. But then 15 months from diagnosis the cancer evaded the combo and all hell broke loose in my liver last summer. By September I had 30-40 mets and 20-30% liver involvement. Works for many people for a longer time but I did not even make the mean time to progression from the phase III trial. YMMV. Worth a try.
>Z<
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Z- Your comment about the tribe of morons cracked me up!!! A lot of funny comments today about the idiots out there in oncology.
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Z, what treatments are you on right now? Is it working? Love the photo of you...it looks like it's what we are all striving for!
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The Ibrance / Letrozole combo seems to be working on my wife's liver mets. The diffuse nature of the metastasis in her liver gives her liver a permanently cirrhosis like appearance, and while the MRI's have confirmed some shrinkage, the imaging isn't likely to change for the better, even though the cancer is knocked back. Her tumor markers went from 300-400 prior to treatment, down to 20-40 range on xeloda, and are now down to 10 and 17 on ibrance / letrozole. For her, the tumor markers may be more accurate than the imaging, unless the imaging shows growth, as the imaging will always shows a swiss cheese like liver that they say image wise, doesn't even look like cancer, it looks like cirrhosis.
So, be hopefull. This combination can work well on liver mets.
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The photo was me finishing my last half marathon, pre-diagnosis and pre-treatment although I probably had mets at the time. I don't look that way at the moment. It's what I am striving for as well...
My main treatment is immunotherapy, specifically adoptive cell therapy with NK cells. I am doing rads and xgeva in support of the immunotherapy along with a complimentary protocol. I am doing lupron (ovarian suppression) to play it safe and keep estrogen levels low. I'll probably be back to the standard of care in a couple of months, likely faslodex and/or abemaciclib. This is a brief intermission/experiment.
>Z<
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thereishope-I had a very similar experience to Zarovka with Ibrance/letrozol. I am currently on Falsodex and will not know until March scan if it is working.
LaLady-ancestry.com?
Z-tribe of morons?
I am audibly laughing here on my couch! You two crack me up!
Husband- I think those two imaging techs should be relieved of their jobs.
I do have to end with the statement that there is at least one good MO on the earth and I have him. Maybe he is a genetic mutation?
May the force be with all of you. MJH
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thereishope-I had a very similar experience to Zarovka with Ibrance/letrozol. I am currently on Falsodex and will not know until March scan if it is working.
LaLady-ancestry.com?
Z-tribe of morons?
I am audibly laughing here on my couch! You two crack me up!
Husband- I think those two imaging techs should be relieved of their jobs.
I do have to end with the statement that there is at least one good MO on the earth and I have him. Maybe he is a genetic mutation?
May the force be with all of you. MJH
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I also have an oncology team I trust. I feel very fortunate.
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I too think my MO has my back. Early on we had a Aha moment where I told her what I expected and from that moment on we’ve been aok. She understands that I choose to live my life and cancer care etc must be worked around it not that I live in Cancer land full time. QOL is what matters to me.
Bab
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I went back to look for your photo Z and didn't find it. I wonder what would happen if our MO's got on this thread and read all the comments?!?! Would they fire all of us? Or would they listen, learn and change their attitude? Interesting to think about.
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Good question, Grannax. My take is they would probably be annoyed, ego bruised, and it may force them to look in the mirror. However, unless they go through it with a spouse, family member or themselves, they will never fully get it.
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I believe we're talking about the photo that appears by my moniker with each post ... that's the only photo of me out there.
Here's to all the good practitioners out there!!! I have several who have my back; however, the local cancer clinic that I have depended on for routine care does not have it together. Will be driving a little further this year and see if things improve...
>Z<
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Yes, there are certainly good doctors as well, Z! And they deserve a shout out.
Good news. I was able to have my Abraxane treatment on Friday after all. I didn't need to postpone it due to being sick this week. By Friday morning I felt good. Better than I have felt in two months, honestly. My DH didn't think I should even go to my MO appointment or get the chemo. However, I figured I would go, see my bloodwork, tell my MO about my recent sickness and see what he thought. My labs were all normal on the CBC and liver panel, which was great! Usually when I am sick, my liver enzymes temporarily go out of normal range, particularly if I have a stomach bug. They were slightly above normal last infusion, when I was also sick. However, they are now back to normal. I told MO about stomach flu this week and the respiratory infection the week before and he thought it was fine to have treatment, given that I felt good now and had normal labs. I am back on track.
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Congrats JFL! Good job going with how you feel and getting yourself to the clinic. We are the ladies who know our minds for sure, and it pays off. Again and again.
That's interesting about your liver enzymes. Mine have been out of range for the first time ever these past two months. I figured the cause was either mets devouring my liver tissue or response to treatment. I've been sick as a dog with virus' but I did not think that could raise my liver enzymes. Are your liver mets slightly over or do they ever get way over normal with illness?
>Z<
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Usually my liver enzymes only go slightly over normal with flu/virus and the like. However, there was one occasion when they doubled when I had a stomach flu with violent vomiting for several days. It took several weeks for them to return to normal then. I was panicked, worried I had progressed at that point but it was a false alarm. They have not been going out of normal range due to BC, despite my large tumor burden, but they are very sensitive to illness. I have wondered if everyone's liver enzymes go up when they are sick (such as in healthy people too) or if this is more of an isolated thing with me due to the nature of my liver mets.
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JFL, glad to hear you are over being sick and back on track with Abraxane. Husband11, so happy to hear of your wife's success with I + L.
Here is my shout-out to my good onc. I believe she really cares about me and will not abandon me to hospital residents in the future. (Let's hope we both get very old together.) I still keep track of all my reports, check up on what techs or nurses are doing, and do my research so can bring up ideas to my onc. She is smart and is just fine with my musings. She values my sense of my own body. We are a team. My big fear is one day having to change insurance and not being able to stay with her, or not being able to access the tests and treatment she recommends.
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Has anyone had a liver biopsy during Xeldoa treatment? And anyone have hemangioma's as well? I have quite a few and RO said biopsy would be difficult because of them and the position of the lesions.
Z, I went to Mayo for my second opinion and found the whole system to be very organized and well worth my effort. Good Luck with your appointment.
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Robin-Sorry I am just now responding. I have had tumor markers done but not recently. I have treatments two weeks in a row and then off one week. I will have one Thursday and then PET next week.
MJH- I do live in OKC but I am not very confident with the hospitals doing the trials. The only one I am interested in is the immu132 and I don't believe that is being done in OKC.
Kaay-So my tumor is too big for the trial?
Yesterday I started having pains again around my ribs. Last night I took a sleeping pill, restoril, and didn't wake up until 5:30 but when I did, my ribs hurt and I couldn't really take a deep breath or it was worse. I am at work but took a tramadol to help with the pain. Eating remains an issue. I'm holding it together but all I really want to do is cry and curl up in a fetal position...except that hurts.
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Babs- Oh man that drives me crazy when they can't find a vein and keep prodding and poking. Most of the time, I am fortunate to have the same woman who gets it the first time but she was sick for two weeks and some guy tried and was terrible! I finally told him to stop and got somebody else.
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Kaylynne, Thats the same schedule I did when we added Gem to the Carbo. I only lasted 2 treatments with the Gem. So my Carbo treatments are weekly, 3 week on and 1 off. I am also having pain behind the ribs on both sides. The left side is very sharp pain and hurts to breathe in. Now I am worried it my be my spleen. I will be praying for a good scan next week!
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Has anyone ever had a problem with their spleen due to bc? I know my MO periodically checks to see if its enlarged, but she hasn't lately and I woke up today with terrible pain just under my left ribs. The pain radiates to the lower back and when I take a deep breathe it is extremely painful. I do have an appointment tomorrow with my MO, but was wondering if anyone has had any spleen issues.
Robin
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Robin, I am sorry you are dealing with the pain too. Do you know how many liver lesions you have and the sizes? I am trying to get my head wrapped around how much room I have. When I asked my onc, she told me it's okay to ask questions but she thinks it does me more harm than good mentally. NOOOO! I have to know what is going on in my body. My liver is 19cm and one of the lesions is 7cm and there are at least a half dozen more. I think knowing how much room I have left is pretty damn important.
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Kaylynne, I have 3 larger ones that all measure around 3cm and my last report said extensive mets. So Im guessing I have a lot. My mets are listed as 27x29 mm and then I do the conversion. Are your listed as cm on your report?
I understand about wanting to know...so do I. That why I always want the PET along with the CT with contrast, so I can see how active they are. I also get my tumor markers checked weekly.
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Kay - I am concerned that you are in pain. I am concerned that you are working through the pain. Do you feel like you can seek treatment or care for this before the scan, or do you feel you have to wait for the scan? I would like to hear that you are getting medical attention sooner.
Robin - I had an enlarged spleen at diagnosis. It's either gone or not reported anymore. It takes a bit of work to figure out which, I have learned. Let us know what your onc says.
>Z<
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Lindalou - I had a liver biopsy during Xeloda. But I cannot remember if they told me to discontinue for a week or if I was off a week or what. So I am no help. And I have nothing good to say about liver biopsies. Except if you can use their drugs to relax, use the drugs. hahaha. And encourage them to go in from left or right side and not diaphram. Seriously I am not a help.
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Z: I will discuss with my onc nurse on Thursday. The tramadol helped but my ribs are still sore when I breathe deeply. I had tests done 10 days ago that showed progression in my liver. My onc knew I was having pain then. I’m not certain anything can be done.
Robin: my tumors are cm not mm so they’re pretty big
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Kay - Thinking of you. You got it covered.
>Z<
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Kay could the ast/alt #s have to do with treatment? I learned that sometimes it does. Of course we don't have a crystal ball, but there is a lot more I think you could do and not get defeated. So sorry to hear about your pain. Dani is also having pains she did not have b4. The other night she thought it was the appendix that's how bad it was. How obnoxious from Onco to pat you in the head. If you ask it's because you want to know.
Re: the lesions, I hate to tell you but I think the liver kinda pushes into other organs and swells up if there is too much there, the other lesions are probably smaller, they usually mention the larger ones, I saw D's PET and it's unbelievable the amount of lesions the liver could hold. If it's ascites they could drain it.
Robin don't get ME started. You are absolutely on the right. Yes, they are Human. But they are careless. Dani pre-Y90 had was told to take Protonix. The bleeding and her not feeling well, she read the interactions of Y90 and Neratinib and lo and behold it cannot be mixed. And also the Neratinib causes bleeding!! She kept saying to the former Onco, she had massive nose bleeding, like an hr and big clots coming out of the nose, and he never thought it could be the tx. New Onco, told her to get off e/t. And the nose bleeds stopped. Definitely be looking out for yourself.
Robin what ideas can you give us how to get the platelets up. You say you work a lot for it. Dani's platelets are also in the 40's 50's and Onco wants to keep the chemo at a lower dose because of it and it becomes an extra worry. Thank you for the info re:platelets, Onco does not want her to get platelets at the 40's mark either, I thought for sure, but he asks if she is holding up then he does not.
Lindalou I remember someone here had hemangiomas in the liver. You could imagine what this word strikes in me. What chaos do Hemangiomas cause in the liver? Does it bother you?
Babs sweetie, ughh I think this is Dani's biggest pet peeve, she gets so mad when she tell them this area is not good, or do it this way that's how it works, oh and if they ignore her and she gets a good bruise boy oh boy.Babs life sure matters! You wrote so well, sure you are a person with much to do not a tissue!
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