How are people with liver mets doing?

I continue to be very scared once I found my liver mets progressed after having to go off doxil. I am hoping to find some support in alleviating my deep seated fears by hearing other stories of people living and dealing with liver mets. My onc says I have such a petite frame (105) that an enlarged liver will definitely cause me some pain until chemo takes care of it.

How are others doing and getting through this with a positive attitude?

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Liver metastasis

Comments

GracieM2007

Hi ladies! Will be going back and reading through the posts but looks like I am joining you. Ibrance and Faslodex have quit working.

GracieM2007

Hi ladies! Will be going back and reading through the posts but looks like I am joining you. Ibrance and Faslodex have quit working.

Celebrate_Life

Max_Otto, yes to your question. I took verzenio in Dec. 2017. After 4 weeks, my liver enzymes jumped to over 600. Both alt and ast were very high. We stopped the verzenio, because I also got a blood clot. I started doxil, and that didn't work, so I am back on verzenio at 75 mg twice daily, 3x a week. A baby dose! But we are running out of options. Noticed this week, liver enzymes are starting to go up. So, navelbine will be next. Getting a liver biopsy next week. I am hoping we can find drugs that are not so hard on the liver.

Love hearing the good news Hartrish!

JFL, thanks for the idea of the ginger candies. I will look into those.

Therese

grrifff

Saw onc today, got results from MRI. Looks like I'll be joining you all. No mass, seems to be heterogeneous liver, suspected infiltration, inflammation. Some areas are lighter, some darker. LFT's continue to rise slightly. Enlarged spleen. I guess all of this adds up to diffuse liver mets. Confused though because report doesn't say definitely one way or the other. Stopping Taxol, I start A/C on 6/29. I'm scared it won't work. I was strong at dr. office but broke down when I told my three children the new plan and what to expect. Dr. said “mixed response"-Taxol killing off cancer in bone marrow but progressing to liver. Anyone had success with A/C and their liver mets? If not what has worked for you? Thanks-Jill.

Scwilly

Celebrate_Life: you were wondering if there were any chemos not hard on the liver.

A few months ago my bilirubin levels shot up, first to 12 when <= 1 is normal. Scans showed >20 spots in my liver. My other liver markers were. I have higher than previously too. Whilst completeing radiation for my femur (ano story my femur developed a crack near the top which were caused by new bone mets and I had an emergency rod and pin were out in) My bilirubin shot up again to 16 (actually 19 when I was admitted) I had a procedure to insert a stent, however this didn't bring my bilirubin down.

According to my MO Cisplatin is the only chemo I could take with such high bilirubin. I then started it (every three weeks) and within the first dose my bilirubin leaves had come down to 2.5, and now are 1.5 in the blood tests after my second dose. I am staying on Cisplatin for a couple of more rounds. But can now take other chemos. Cisplatin is hard on the kidneys and so you take it with 2 hours of hydration before before and after the dose., takes around. Side effects are hearing loss/tinnitus. I have this slightly, thoughI don't think it's getting worse. Also - I was given all the leaflets for hair loss but don't seem to have any - my hair doesn't seem to be thinning either. I'm quite tied but no nausea due to good drugs to take alongside.

From being very ill with jaundice and scared and facing only having one option I am so relieved to back to normal for not only bilirubin but all my liver markers.

jensgotthis

Gracie, sorry to hear the Ibrance failed. Your intuition was telling you that, I think. Hug

Max_otto

Celebrate, Thanks for your response, I'm reading about V and the impact on bibliubin and enzymes which are concerning after Y90.

Scwilly, You do have positive news, bili and enzymes are normal which should help clear the jaundice. I can identify with being scared, every time they run another MRI, I am a wreck prior to the results, I try to control this but the dark thoughts creep in.

-k

leftfootforward

CT scan Monday. First one since I was out back on Xeloda and Added Tykerb. Previously I was only on Xeloda and the tumors came back so I have to have faith that the addition of Tykerb is eniugh to keep the liver tumors at bay. I am convinced Xeloda is whatvjeot my brain tumors stable so hoping this combo works on both my brain and liver tumors. Scared as I am running out of options.

zarovka

great news. Hartrish.

Max Otto - We have a dedicated abamaciclib thread where the Abamaciclib experts hang out ...

Grannax2

Gracie so sorry to hear about your progression. The ladies here have a lot of knowledge about liver mets. Mine are still inactive one year post y90.

GracieM2007

Thanks Grannax! I hope I can say the same some day

Celebrate_Life

SCWilly, thanks for the info. I am scared too, right now. Having that little bit of hope helps. I am having a liver biopsy on Thursday. I know they will get a tumor sample, as the stinking thing is almost 5 cm. Hopefully, from there, we will get more info and more choices of drugs.

lisajo6

I see the doctor tomorrow. Since I have morphed into triple negative, I don't see any options. I am on doxil-but I do not believe it is working. I went to the triple negative site-but quickly got off because most of these lovely women are no longer with us. I wonder if I should just quit treatment. I have no quality of life. I am scared.

GracieM2007

Lisajoam sorry you are going through such worry! Am having a liver biopsy tomorrow to see if mine has morphed to triple negative because hormonals have not worked. Totally get being scared!!! Sending you cyber hugs and saying prayers for you!!!!

Lillymillie

lisajo. Sending you hugs and positive vibes. See your doctor and have a look at whats on the table. There has to be more options.

hartrish

liajo6: I am TN. There are other drug options to consider. I have been on carbo and Gemzar for 10 months with a great response. Did you have any genomic testing done on your TNBC? Maybe there is a trial you can get into. Also, there are saveral chemos that treat TNBC.

I try to focus on one day at a time. I too have moments of despair and anxiety about having TNBC. Keep moving forward the best you can. Hugs and prayers your way

GracieM2007

I have my liver biopsy tomorrow. Am pretty nervous about it.

babs6287

Grace. I’ve had 2 liver biopsies and they were pretty easy. I hope yours is too!

Bab

momallthetime

lisajo everyone here knows I am no Pollyanna, yes, TN is tricky, but it's not a life sentence. Many ladies do well for a very long time. I can't possibly tell you medically, everything that you took is enough or you did not take enough. But i do know there are many treatments still out there. Maybe a 2nd opinion would be good for you to hear more ideas or different ones. Is that at all possible for you? Make sure you got as much info you can. Thinking of you.

GracieM2007

Thanks Babs, I sure hope I can come on tomorrow and say gosh I don’t know what I was so worried about😊

Grannax2

Gracie I bet you will. I was the exception to the rule because of my lung mets. They had to intubate me, that's the only thing I had SE from. The BX is soo important for your TX. I wish the pathology didn't take so long to get back. Waiting is not my strong suit.

bigbhome

Gracie, I am wishing you peace with the biopsy. You will get so much information from the results! I'm sure you will do great! I'm sending you special prayers and gentle hugs today!

Claudia

lanagraves

Good morning ladies. I'm kind of a passive participant on the thread. There's so much great information here but unfortunately my brain fog won't let me comprehend very much of it at one time. I have a couple of questions I'm hoping you ladies can help me with. I have extensive bone mets, a (mostly resolved) pleural effusion in my right lung, and extensive liver Mets. Of course we are focusing on the liver. I'm taking letrozole and verzenio. Two months so far on the letrozole. A little over a month on the verzenio. The only liver symptoms I had in the beginning were nausea, loss of appetite, amd dark urine. After starting letrozole, the dark urine became normal appearing very quickly. When I began the verzenio the urine became somewhat darker again and I developed mild jaundice. It went away. Then at the end of my first month of verzenio I was out of it for five days because of some mixup with the specialty pharmacy and my insurance. Ive been back on it for five days now. Today I woke up with mild jaundice in my face and moderate in my eyes. Everything else seems to be better. Any thoughts?

blainejennifer

Lanagraves,

Please call your MO and report the jaundice. Very soon. There could be some sort of blockage the requires immediate attention. Best to be paranoid and safe here.

Jennifer

GracieM2007

just got out...am in recovery. They couldn’t get to the liver, the spot is very close to an artery. So they went to the hip and got a rather large Chunk of a new lesion. Enough to store some!!

AnimalCrackers

lanagraves - I agree with blainejennifer / call your MO and report the Jaundice and dark urine. They are not side effects they are symptoms of a possible blockage in the bile ducts.

Let us know how you make out

MuddlingThrough

Gracie, I'm glad you're in recovery!

babs6287

Gracie. Glad you’re in recovery!!!!

Bsb

Lynne

Gracie-Glad your biopsy is over. Hoping you recover quickly. Hugs!

Lynne

sharmal

Hello everybody !! Thanks for providing lot of help through the discussion here. My mom has extensive bone mets. The disease is in lungs and 4 months back it was in liver too. In last 2 months the disease showed progression in liver. We have done liver biopsy. The results is ER >95 % strongly positive, PR is weakly 5% positive and cerb B2 is negative. We have scheduled onc visit today.

Since last 2 months, my mom gets very tired just walking few steps ..The same happened while getting up from bed and chair as well. Her stomach is bloated...Although she is regular with her diet. She gets swollwing in her legs and feet. She breath heavily and fast during sleep. I can hear it. Her hgb is around 8 at present...She gets blood transfusion in between therapies. Is this fatigue due to low blood count? She had low blood count in past too but this time she is very down as compare to past.

Thanks you so much again for your valuable comments and suggestions. Hope and prayers for all.

Lalit.