How are people with liver mets doing?
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Daughter Lov-hoping& praying that the trial does the trick for your Mom and brings her to NED. Keep me posted on her progress.
Babs.
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Thank you Babs! Will do.
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I'm new to post but love to read and find others with similar dx. and their stories. I know I'm not alone in this journey. I've been fighting br cancer for 15 years. I'm blessed to be able to share as many others. In 2007 had mets to bones and 2013 liver. We've tried various chemo drugs including Ibrance, and now I'm starting Gemzar/carbo Monday. Taxol/xeloda was my last regimen & it worked, NED, but 3 months later & I now have 8 new small liver tumors and the vertebral lesions are active again. So I guess im looking for any info from actual patient testimonies. My hair was finally coming in... Don't know if losing it again for the 4th time. And just wondering about SE this time. Happy and blessed no matter what. I'm still here and moving ahead. God is gracious!
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advanced metastatic breast cancer
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Aghhhhh, welcome to Breastcancer.org. Sorry you're dealing with mets again, but glad you've found this group to share your feelings and experiences and learn from all these wonderful ladies here.
Good luck with new treatment. Please, let us know how you're doing!
Best,
The Mods
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Aghhh, first I really like your username. Second, I can speak positively toward gem/carbo. I have been on it a year and it is working very well for me. 10 cm liver tumors have been reduced to half or less in size and are currently staying stable (or so I hope - latest scan results due in today). No hair loss! Yay! I feel very well on gem/carbo as far as side effects go. I'm fatigued but functional on days 3-5, and am also a bit moody on those days, which drives me the most nuts. I've had trouble with white counts and have added Neulasta and later Neupogen to help with those. Currently platelets are really struggling and I've missed several treatments. We're looking to drop gemzar to help as it is perhaps the carbo that is most effective since I'm triple negative. It is encouraging to read how well you have been doing since dx is 2007. So glad to have you posting here. Let us know how everything goes with gem/carbo.
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Hi. I'm new on this forum and posting on my mom's behalf. Recently diagnosed with bone and liver Mets. Multiple lesions in liver with largest 11cm. Had 3 doses of Taxotere. But i feel it's not working. Liver has enlarged a lot and she doesn't eat much with nausea and wierd stomach sensations. Going for evaluation tmrw. Really worried.
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Viktorb, I felt similarly when I was diagnosed. I took 5 mg of oxycodone (10 mg made me dizzy, nauseous, and very sleepy) to help with pain and pressure from swollen abdomen until chemo quickly reduced inflammation and I felt good as new. I think it was after my first cycle of gem/carbo (2 treatments and 1 week of recovery) that I felt suddenly better and have felt great since. I hope you get good information at the evaluation. If taxotere doesn't work, there are many other things to try. I had taxol with my initial stage 1 dx and I don't think it worked at all given I had loads of cancer in my liver just 7 months later. Let us know how the eval goes. Thinking of you and your mom.
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Greetings! !!! I could use some encouragement :-( last week our kitchen/living room flooded (stupid washer) and we had to take the hardwood floors out so the slab dries and now my hubby is almost done putting them back/replacing the damaged sections. ...
so that means a lot of take out/ eating out for almost a week and you know how it goes, even though I try to make good choices it is really hard....
And I guess I'm in such a slacker mode that I just ate a banana nut bread and coffee while waiting for my weekly infusion :-(
Geezzzzzz
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Gramen, doesn't anybody know that when you have breast cancer your kitchen isn't allowed to flood? Grrr! As for the food, I hate getting stuck eating out so much also. I think it's okay to give yourself a break, though. You'll get back on track. You will! You will!
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Thanks kaayborg! Is funny how this illness changes our perspective 180 degrees. Other than the food little meltdown, because I don't want to feed this nasty c, im very proud of how the house mess doesn't bother me that much anymore!
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Aghhh, I also did really well on gem/carbo with no side effects to speak of. I was bald when started due to abraxane but hair soon came back thick and fast, and really curly! I had loads of energy, did a couple of holidays and wish I could have stayed on it for ever but although it was doing great things for my liver, after six months it was moving into bones so have since moved onto Xeloda. Feeling much more fatigued and sore feet mean I'm not as active so putting on weight. Grrrr! Hope you go well on it, let us know
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Viktorb, I first presented at docs with discomfort, swelling in liver area and very weird gut behaviour. A few doses of anti inflammatories (Brufen?) put that right before I even started on chemo, so you might like to give that a try. Like kaayburg I also found low dose OxyContin to be a godsend and still do. All the best to you and your mum
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Thanks Kaayborg and Isy. Encouraging words. Our preferred radiologist was on leave today. Now have to wait till tmrw to get the results and new regimen. I find it really hard to convince my mom to take painkillers. She absolutely hates taking painkillers unless very bad. If the chemo works how long before one sees decrease in liver size?
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Hi everyone. Babs, Artist you guys know me. I did not get to read the previous posts. I needed and wanted so much to be BCO but I got a substitute full time job and to be honest the stress got to me.
It's been a rough night. Yesterday we got the Pet/CT and Brain Mri for Dani back. So that everyone could follow, in brief, she is my daughter, a vivacious young mom. She has had Mets to the bones but yesterday the results came back, according to this Radiologist there is one spot in the liver 1.5cm, also the mesenteric thingy that has been growing on the left side of the abdomen, is getting bigger every time we do the scans. Some lesions on the skull got a few mms bigger. And the whole skeleton is still acting up, but not really getting bigger just not really smaller. So they call that part stable, so he thinks some of the stuff she is taking is working. Hmmm hard to think.
Ladies, I will be speaking to doc in the morning, If you see this, what's your opinion on "one small lesion", does it make a difference if it's small, or once it invaded the liver it's a different "monster". Doc told me last nt, oh, it's so small, maybe they will just radiate it. But should a biopsy be done? I really don't know how I am going to tell her, she deals with what she has to, but she was so hopeful. She does not want the details. In her everyday life she is a force to reckon, but this is just too hard (that's where I come in, she relies on me, looking out for her, doing research and getting her to a good place).
The lesions on the skull, were supposedly stable after some Gammaknife, but now it started growing again. Yes, not by much, but growing. He is considering Proton therapy for this. (to some of them)
She is now on Ibrance/Letrozole, Tykerb/Herceptin. ER+PR+(less than 1%), and HER2+ (FISH +++) Her status of HER2 changed from the original HER2- to HER2+ on biopsy a year ago. Could it have changed again??
Maybe he is thinking of adding Immunotherapy to it.
She has been on everything already, besides some very new ones. WHAT is going on?? She will be devastated, I really don't know how to tell her.
All info and opinion on this is so appreciated.
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BTW her AST/ALT are not high, at least not on the last BT, the next one is next wk, is that what liver enzymes is? I am trying to stay ahead of the doc, to be able to ask him the right questions. Thank you so much
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HI momallthetime,
I hear your concern and worry for Dani...your love too. Count me among her/your cheerleaders!
Want you to know there's considerable variation in how liver tumors are assessed and treated. I've never had a biopsy or local treatment other than my indwelling drain for associated ascites (diagnosed with liver mets in January 2014, ascites since January 2015 and indwelling drain since August 2015). Also, my liver function blood tests were normal until last autumn when I went onto hospice and stopped getting blood tests.
I know that local/topical treatment via radiation, surgery or other means, can be done for a single or few mets to the liver (aka oligometastatic disease), but it sounds like Dani's disease is all over, not just a single spot in her liver. This website may give you some ideas? http://www.beatlivertumors.org
Oh yes, liver involvement was a game changer for me (I've had pleural mets dx. February 2008 and lung mets dx. July 1999). The liver feels much more systemic as my ability to metabolize toxins and nutrients decreases.
As you will soon see, each of us has a unique experience and it's impossible to predict for another just how it will go.
I'd put the trust in Dani's doctor(s) and seek second opinions based on her unique experience, rather than trying to follow in our footsteps.
Momallthetime, sending warmest healing wishes, Stephanie
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Stephanie, thx so much. But you not in Hospice anymore right? Also, that's what I am trying to avoid. The idea that it got to the liver, being in the bones for 3 yrs, it's bothersome.
There is so much to ask and find out. Thx for the support. Stephanie,The right tests would be ast/alt? anything else?
Babs thank you for caring.
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Hi Momallthetime,
Oh, I am in hospice for 7 months now. Still waiting to die, but enjoying the slow ride out. I feel like I'm on the milk train, moving slow and stopping at every station along the way. I try to report back on my dying path via the Dying and Death topic, since I've a unique vantage point. I apologize, if I or my experience scares you!
Remember, I've had liver mets for at least 29 months now - so it's not an instant death sentence!!!
And many with liver mets have gone on far longer than that...I hope others weigh in about which blood tests to get. And which treatment options worked for them.
healing regards, Stephanie
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Oh I know, Mom had it. It's a slap to the face. I (we) knew the other shoe is gonna drop sometime, you just never want it to be so. Thx so much for the input.
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Anyone ever get ascites AFTER starting chemotherapy? My wife developed ascites at the end of her first cycle of xeloda. She has completed 3 cycles, getting good response in both tumour markers and as shown in the MRI. It seems like the response to treatment is triggering the congestion of her liver. It is only getting worse, as the cancer gets smaller. She might take up the onc's offer to take two weeks off xeloda and see what happens. There seems to be a slight trend between her cycles of xeloda and the rate of fluid accumulation. I fear that the xeloda, or some interaction between the cancer (dieing off) and xeloda is producing this venal occlusive disorder. They are puzzing over her latest MRI, and talking about narrowing of small veins, blood clots, scarring, pretty much everything and the kitchen sink, which makes me wonder if they really can pinpoint what is happening or if they are just guessing. But it seems 90% clear that treatment, not disease brought this on.
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Mom. AST/ALT is liver enzyme levels. It is good they are not high as that means something is inflaming her liver. So sorry for all of the complicated symptoms Dani is dealing with. She is lucky to have you on her corner. Try and do a few things to take are of yourself too though. Jeez, gramen sorry about the floors. That bites. But you are right how everything is put into perspective and we don't sweat the "small stuff" as much anymore. kaayborg, that is awesome to hear how well your tx is working for you, besides the platelets issue. Hope the change up turns it around. I too have been pretty lazy about meals and getting take out. I hope having the summer off will get me motivated to get going on cooking and exercise. It will, it will! LOL! Aghhh, your spirit and attitude make me smile and uplift me. Stephanie, you are quite a character, I love it.
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Hi everyone. Got the preliminary test results ystrdy. Ultrasound showed partial resolution of the main tumor(11 liver). But still liver dotted with multiple lesions of 1-2 cm. Minor ascites is there and liver is still enlarged. Liver enzymes (SGOT level has gone up from 90 to 130. SGPT is normal. Wbc count has shooted up to 25000. Doc said chemo is working although bloating and other symptoms persist. As it is a progressive disease, we can only try to control it. But deferred the 4th chemo cycle for few days as wbc count is very high. He will do a CT scan just to be sure if Taxotere is working. Nevertheless he is planning to proceed with 6 cycles to extract the maximum benefit from it before switching to a different drug. Anybody got a high wbc count after chemo? It's puzzling me.
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Victorb, I had my "5th" infusion of Taxotere last week. It really shut down the liver buggers. My WBC has been high, but I have gotten a Neulasta shot after each infusion. I have one more infusion, then onto the next tx.
While Tatxotere has done a fantastic job, my spine is popping up with Cancer in numerous vertebra. Also ribs.
Hoping we all get some quality time after all we go through. Do you have horrific fatigue?
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Hi Holeinone. Yup there is severe fatigue. Added up with bloating and weakness. That's what I am puzzled about. Even without any Neulasta, the count is very high. Now awaiting CT results. Hope the symptoms subside. my best wishes and regards with you. Hope ur bone Mets subside and we can all put these bad days behind..
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Victorb, that is odd, no Neulasta & high WBC. You are so right, weakness & unbelievable fatigue. I spent 3 days this week in bed, bone pain. It could be the Neulasta & Zometa. Since the bone mets are spreading like dandelions, I got an infusion of Zometa. Feeling like Humpty Dumpty. My thumb nails are very sore, looks like I hit them with a hammer. Was at a BBQ tonight. Close, good friends. "What are planning to do / go after chemo". They ask. Ah, well I need back surgery & then possible radiation on my spine. Scared as shit by then the liver buggers will come marching in. Been a tough week, sounding like Debbie Downer. Tomorrow is another day. Beautiful moon out, look for nature to cure the blues
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Sorry Holeinone, Hope your week gets on the upswing...
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Thanks Artist, appreciate the support. I think next week will be a better week.
Wonderful to be able to come here, be honest & open when life gets hard due to all we go through.
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Well, scans were not great. Have slight progression in liver tumors. So I have to change meds again. I am not a happy camper. I feel like I am blazing through meds too fast. She is taking me off of Faslodex already which I had high hopes for and putting me on Anastrozole with ibrance added back in. So now I am the Debbie Downer! Yes Holeinone, this is the first place I come to vent and get advice and hopefully offer support and next time good news.....
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Artist. Ugh, I was really hoping for a great report. Why not Aromasin since it is different from letrozole/Femara and anastrazole/Exemestane, which are both nonsteroidal aromatase inhibitors? And afinitor can be added to it. Do you think it is time for a second opinion from a major cancer center?0
