How are people with liver mets doing?
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true story- just confirmed with my husband I have a hole Through the septum of my nose. Explains my bloody noses lately.
I assume it’s from one of the many chemos I’ve been on over the past 9 years. Small price to pay.
Some days I hatemy body and all its gone through.
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Shetland, I too have had trouble getting off the couch, although I do run brief errands. Whee. It is warm enough where I live that most afternoons, I can take a book and sit on my deck for a bit, let the sun warm my bones (I am perpetually chilled), and watch the birds and squirrels. It soothes me.
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LFF. That's terrible. Can it be repaired? Does it bleed all the time?💞
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LFF, how awful...you have had such a hard time and I'm so sorry.
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JFL....grapefruit is not allowed on chemo?? Do you know if that is the case on Xeloda? I thought only on Ibrance/Letrozole...
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seeking opinion of ENT. I b hear most jokes you can just leave but I will wait to find out,
It’s a small thing but annoying. My husband said the only people he had ever seen this in were cocaine addicts. Missed that boat but at least it made me laugh. Guess we will add chemo patients.
have a great day.Thank you everyone.
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Question about tumor markers for those how have them taken by their MOs -- my tumor markers have been dropping on Ibrance (in cycle 6). Had my blood pulled last week after having a nasty stomach virus the week before (think both ends at the same time.) Everyone in my family got it -- it was very contagious. And when I went to see my MO last week, my neck glands were still slightly swollen from the virus.
So today the results posted on my patient portal. CEA dropped a bit, but CA 27-29 was up by 14 points, after steady drop since I started on Ibrance in late July. Should I panic or just hold tight until next month's blood tests? My white blood cell count was up as well, so I'm wondering if the virus was still in my system.
Thanks.
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BevJen, I wouldn’t lose any sleep over TM, they are unreliable even when everything is consistent, and you’ve been sick...
Wait till you’re back to normal and for the next tests..hopefully, you’ll find everything is a okay!
My best wishes to you!
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hi everyone. hope you all had a wonderful holidays and that 2020 is off to a good start.
I wanted to see if anyone has any knowledge of or experience with what I am experiencing. Quick recap: After failing off chemo and learning that my mets now show ER+ again, I started Faslodex/Ibrance in December. First cycle was relatively uneventful. Yesterday I had Lupron/Xgeva/Faslodex again. ~5 hours later I got super tired and developed what I assume is liver pain (right side of my body under the ribs, floating ribs, etc. hurt w/ deep inhales, full exhales, coughing laughing, movements, etc). Then I got chills and developed a low grade fever. I went to bed and the fever went away, but the liver pain has persisted today, cycling through improving, then worsening again. My MO thinks it's tumor flare, though I didn't experience the sudden onset pain in December with these shots. Anyone experience liver pain? In response to treatment? Heard of or experienced tumor flare? Thanks in advance...
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mama I have had liver pain but not in response to TX.. it's usually right where you described or referred pain in my right shoulder blade area. I am on fazlodex now and have been for four months. IL failed for me over a year ago but I never had the response you're describing .
Sorry I'm no help but someone will chime in, I'm sure.💞
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hi grannax - thanks for writing me. did you find anything helpful for managing the pain?
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" Fortunately, it was not consistently intense. I do take Tramadol. I only take one in the AM because it makes me kinda hyper. I take Tylenol in the afternoon and evening.
Maybe your pain will only be temporary. I sure hope so.💞
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Had Doxil #2 today and learned my cA 15-3 tumor marker went down from 34 to 17 after #1. It is not a perfect predictor but positive progress. 👏🏻 Tuesday the IR doctor said he saw growth 😟 so I won’t know for sure until the next MRI
Heading back to Houston for a week at the end of Jan for scans to first check the doxil progress , then have the y-90 procedure. Thanks for the heads up about feeling cruddy afterward. I hope I can feel good enough to fly home 2 days after.
My MO called me today to discuss next line options and answer some questions- she is great and listens to me
if Doxil is not working, Afinitor & aromasin may be next while waiting for y-90 to do its thing. It is supposed to work well with Neuroendocrine tumors. She also mentioned a few chemos that are more fast acting since the tumors are stubborn and multiplying. I will know in a little more than 2 weeks!
I feel like I have some hope. I have been going through lines pretty fast and need one to work longer. Y-90 will reduce the tumor burden in the mean time.
Hope everyone here is getting some answers, relief from SEs and hope!
Dee
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Thrivingmama, if your onc thinks tumor flare, that is a good sign. I did experience big liver pain when I started Xeloda, and it was because it was just clobbering the cancer. I was NEAD on it for two years.
BevJen, a one-time rise of 14 points with a virus does not sound concerning, except that everything is concerning to those of us living with this disease and watching our TMs like sports fans watching the scores. Only for us it’s a cruel game. If you can’t stop worrying, maybe ask to recheck at the two-week point.
Dee, that TM moved in the right direction, anyway. We are in a similar situation. I will probably have Y90 this month, then go on new drugs. We have hope.
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Shetland,
Thanks for thinking of me. My MO has not responded to my note through the patient portal, so I'm thinking that she thinks it's a non-issue. At the same time that my CA27-29 went up 14 points, my CEA came down some. So who the heck knows? I may call the MO this week and have them do another blood pull later in the week to check.
Please let us know what happens re the IR procedures. Good luck on figuring that out.
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AlabamaDee
Do you have BC withNET features?
I do and am about to have my first scan since starting the Afinitor/Aromasin.0 -
BevJen, my CA 27-29, ALT, AST and alkaline phosphatase will often flare up when I am sick and then go back down a week or two later. My CA 15-3 doesn't really ever go out of normal range for any reason.
Thrivingmama, I do get liver pain, usually when I start a new treatment and it is working. I found that it is worse later in the day many times but no always. Apparently, the liver expands by 50% throughout the day and mine seemed to hurt more once it was full from eating/drinking during the day. I get a general soreness and then also some specific soreness in certain areas of the liver.
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JFL,
Thanks for that info about your blood work. My MO finally responded and said that a 14 point rise would be considered stable or a very slight rise, and that she is not concerned yet, given the nasty virus I had just had. She said we will test markers again at the end of January (my next appointment for bloodwork) and if it's still elevated or goes up more, we will scan before the end of February appointment, Makes sense to me, although it is pretty scary to see things going in the wrong direction to any degree.
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I've heard of referred pain,and understand what it is, but is it considered to be a bad thing, a good thing, or just a thing that doesn't mean much. I ask, because I've had some right shoulder pain the past week or two (but no liver pain). It could also be due to lying on the couch constantly, as extreme fatigue is kicking my ass.
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Leee
Yes! Someone like me. This is awesome. I have tried to do some research and they don’t even know what to call it. Primary Neuroendocrine BC or IDC BC with Neuroendocrine features. It is rare and not a lot out there on how to target that feature.
My MO wants to try all the normal breast cancer lines and so far the liver mets have been stubborn. I was a surgery candidate but SO said no until we find systemic treatment that shrinks the tumors so I am heading to Y-90 for local treatment instead.
Europe is Looking at PRRT (Lutathera) as a novel therapy for Neuroendocrine BC. It targets the somatostatin receptor that our tumors express. MD Anderson said it is not approved for BC but could possibly be a clinical trial or off label compassion in the future.
Please let me know how it went on A/A. Have you had any local treatment?Looking forward to helping each other with experience and support.
Dee
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Katty, pain in the right shoulder is a thing, and is related to liver problems. I've had this pain for a while that I relieve with magnesium and omega3 in the morning and at night.
but I have also bone cancer in that area.Why would magnesium and omega 3 be so effective? I don't know...but I'm glad it allows me to use my right arm...no help whatsoever from my mos or pain specialists....they are remain stupefied when I tell them...
When the pain is really bad I rub oil of magnesium
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Shetland you're going to have y90? Yay you. 💞
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So, even though my petscan seemed like a good report in December.....my tumor markers continue to rise, and the Gemzar is killing my counts (platelets, especially). Last cycle we had to take a 2nd off week due to platelet counts, and I started this cycle only at 108 so not really thinking they will be high enough to get it this coming Tuesday. My MO wanted to try for a true 3 week cycle this time, but if too low next week we will just switch to every other week. My tumor markers have always been pretty accurate; so, a scan quicker than normal may be happening if they continue to rise.
Shetland - hope the y90 goes well!
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NBNotes --
I hope that the tumor markers in this instance are less accurate than your December scan. Good luck with adjusting the Gemzar dosage as well -- hopefully all will go well on Tuesday.
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Thanks BevJen!
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Hi all.
Just popped in to say I keep up with this Thread and will chime in to the discussion as needed. Next scans in Feb- no date yet.
Hugs to all.
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Candy...you and me both...mid Feb! ((((hugs))))
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Y90 is in the works for me. I posted details on the thread “Liver mets...Y90...” thread.
Leftfoot, that’s terrible about the hole in your septum. And amazing you and your DH can joke about it. We are pretty tough, eh? Maybe the ENT will send you to a plastic/cosmetic surgeon?
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GUMDOCTOR...how are you ?? Have not seen you in a bit?
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Shetland. Do they have any idea as to the date for y90? Will it be done prior to replacement of your stent?
Tomorrow is my AVF repair. Then, maybe I won't be in the hospital for anymore procedures. I've had four starting in November. I'm getting to know all of the anesthesiologists. Lol. My son, the anesthesiologist, laughs at me because I'm rating all of them. Hahaha My favorite one works with my IR on Wednesdays, maybe he'll be there tomorrow. Nothing better than a good anesthesiologist, except maybe a good IR.💞
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