How are people with liver mets doing?
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Holeinone, no info for you but I will surely be thinking of you today and hope you hear from your onc something that helps..
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Hello. I am new to this thread. Dx in 1999. Going through my 6th battle with BC now. Liver mets dx in 2014. Currently on Navelbine treatments. The hardest part for me has been the nausea and vomiting. I was on Gemsar and then Ibrance. The liver mets progressed when I was on the Gemsar. I couldn't tolerate the Ibrance. Just been having problems tolerating any treatments lately.
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Hi ladies, thought it was about time I checked in.
Welcome to Melanie and Cjanet and all the other newbies!
Holeinone, I am so sorry! I am glad you are getting in to see the onc quickly though. I will keep you in my thoughts and prayers this morning.
Things are going ok around this direction. I just completed my 9th cycle of Ibrance last night and then see my onc next week, hoping for a new set of scans. Just wanted to let you all know I am always thinking of you !
Alissa
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melanie
Hang in there. Sorry you have had s run of bad luck. We are all here for you.
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Hi Melanie,
My name is Melanie also. Welcome to the boards. You will find a wealth of information and support here. I have liver and bone mets. I am about to start the Ibrance/Faslodex combo.Why could you not tolerate Ibrance I hope your medical team finds the right treatment for you soon. Keep us posted!
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Hi ladies,
I just came off Ibrance. I found it easy to tolerate but my cancer grew on it so not working for me.
Am I reading right, that some of you w liver mets are working? I hope so, as I currently work and hope to continue to do so.
Holeinone, I hope you can line up new treatment today to give you hope.
Melanie, I find it interesting you were on chemos and found Ibrance, which isn't chemo, hard to tolerate. Just goes to show how individual we all are.
Is anyone on Xeloda here? That's what I'm thinking of going on. Liver biopsy tomorrow.
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Cjanet, I still work, I have to as long as I can since I am the one that holds our insurance. I also chase 4 littles all over the place too!!
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Cjanet- I've been in Xeloda since December of 2012. Works well go me . Ask me urstions or check out the Xelida thrad
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Cjanet I'm still working and on second round of Xeloda. Funny, I had side effects after first round, diarrhoea, watery eyes and sore, cracked lips. Those side effects now completely gone! Just feel very tired (what's new!) and feet are feeling a bit tingly today, though I did a lot of walking yesterday. So, so far so good, and much easier to take but shame I only just got round to getting a port put in and now I don't need it!
kaayborg,what is the chemo you have lined up next? I know we went on gem/carbo about the same time and both have liver mets triple neg. have you considered Xeloda. You get to keep your hair!!
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Holeinone- big, soft hugs. Glad you see your onc soon. Praying for something to get those spots out!
Hi melanieW! 6th round with Bc? You are my hero! Sorry to hear about the tummy troubles. I hope they can find something that Semites the cancer and is easier on you.
Cjanet, I am working with the liver mets. There are days (today!) when I wish I didn't have to get up and go in, but the reality is that I'm a single parent and I provide my insurance. I think that work helps me take the focus off of the cancer sometimes. My week is more than just treatment, recover from treatment, etc. I am very blessed to have a job that is somewhat flexible and I work with tremendous people. That makes a huge difference
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Good Evening,
Interesting day. Oncologists was much more concerned about the bone met then the liver. I told her the way I read the report, it seems new tumors are emerging. She said the dying one causes necrosis, and also leave scarring. The report stated that the tx was working on other nodes, pre-tracheal & hilar & a few others.
The report did not say that about the liver. My liver #s have continued to go down, so that is a good sign. MO wants me to have a PET scan next week ( if insurance will pay ). She said it will tells us more about the spine met & liver. She gave me the choice to have chemo today, or wait until after the PET scan. I chose to recieve the Taxatere.... I would go bonkers if I did not. it is working on some levels.
Thank-you all for the well wishes & support. You are my rock. Oh, do you need a port to receive Navelbine.?
Kaayborg, I could do the Neulasta shots, gave them to DH after hip replacement. MO said they could attach one today that would self inject tomorrow afternoon. I live close to the hospital, easy to get there. So, I declined. Not feeling very confident right now, and I know those shots are very expensive. Would not want to rip it off in bed.
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Holeinone, I am so glad your onc is working on getting you a PET scan. That should give you a lot of information. I would have chosen to go ahead with the Taxotere, too.
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Holeinone, I think your news from the onc sounds a little less scary. Hopefully the PET will tell more good news. Also, I do the Neulasta on body injector and love it. You won't rip it off. It saves me a 20 minute drive the day after treatments. I call it my little lightning bug since it flashes a light. You don't see it except in a dark room.
Cjanet, working here too. I hold the insurance and am sole income earner (hubby stays home with kids but is trying to figure out jobs now...ugh).
Isy, Xeloda was lined up next for me but my onc now really wants me to do an immunotherapy trial. One in combo with Abraxane looks most promising. Abraxane will cause the hair loss which I have only recently realized with disappointment.
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cJanet, good luck with your liver biopsy. Mine was easy. Let us know.....
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Yes CJanet, my liver biopsy was fairly easy. Best of luck on that, I hope it is easy on you and the results are promising for you. I still work full time as well as I am also the sole provider of our health insurance. Also, like Mattie I think it helps me take my mind off of cancer for awhile. I also work with a pretty great group of people who are very supportive. When I can no longer work we will have to figure out a new plan. The fallout from all of this is endless........
Mattie, I like the quote about the 10% liver function too. It does bring some perspective. I also like your attitude onthe hair loss. I'm afraid I am a like kaayborg in that regard, where I realize I am rather self conscience about my appearance. Not only do I worry about putting other people off, I worry about looking horrible. Ah vanity....hard one to get over for me.
Holeinone, That is good that your Onc is not so concerned about the liver met. Hang in there and I hope they figure out a good next treatment for you!
Welcome to the thread Melanie. I sure hope they figure out a treatment to get you back to feeling OK. Constant nausea is a rough road and my heart goes out to you. 6th time around tells me you are one tough woman! Hang in there.
Jeez Mama! 4 little ones to chase around and working!!! I thought I was getting tired.....Kudos to you as well!
Leftfoot, 4 years on Xeloda is awesome to hear. May you continue forever....
As for me, my TM's jacked up this time around by 100 points each. Disappointed in that as they seem rather reliable so far. Don't have a scan until mid-June. At that time my Onc is going to add Ibrance back in at a lower dose regardless of results. The 125 dose seemed to elevate my liver enzymes so hopefully at 100 they won't.
kaayborg, That is pretty interesting to hear about immunotherapy trials. I'll be interested in how that goes.
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Just wanted to note that there is a wide range of experience with liver mets.
In my first year-plus with known liver mets, I was asymptomatic, then ascites kicked in early 2015, finally leading to an implanted drain in August 2015.
My liver began to swell a little before then and is increasingly painful. I hear the pain is due to tumors on the liver's outside and the liver capsule swelling.
My liver markers didn't go up when I was still getting blood tests (stopped at autumn equinox). And I'm still not jaundiced.
I've had three scans of any type during the past 2.5+ years of multiple liver mets and have never had a liver biopsy.
There seems to be some variation in how liver mets present, progress and are addressed (sorry, rhyme attack).
Also, I first was diagnosed with a lung tumor in 1999 and have never had it biopsied. Nor did I have it regularly imaged until 2008 when pleural effusion became problematic. More variation. May be regional or historical. I think monitoring and biopsy are far more aggressive now than in the past. There've been many changes in treatment options too. Different oncologists treat differently. And different patients demand different treatments. (I'm conservative and others are more aggressive.)
When I was on palliative care (2011-2015), I continued to get infrequent imaging tests (mostly chest x-rays - less radiation) and monthly blood tests. Now that I'm on hospice, I get neither. It works well for me. Used to need to know everything. Now I have some idea how much I don't and can't know and am in acceptance.
Change and variation, Stephanie
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OMG! Kaay! That is exactly how i feel in my ears..a heart pounding feeling...it comes for a few seconds and then subsides. I was dreading something sinister in my brain. THANK YOU SO MUCH for being here..love you.
hugs to all other warriors. Im praying for a NED for all.
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Holeinone,
I am sorry about the results of you scan. But i am happy you are seeing your onc soon. A patholigic fracture , is a fracture without obvious reason usually it is seen with people with osteoporosis and bone mets. I hope it is not the latter. I hope your onc will find soon a good tx for you.
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Sonyarrizo,
IBRANCE/Faslodex has been helpful over the last 10 months in reducing the size of my tumor and my tumor marker numbers have dropped. Before that Femara kept the tumors away. I am very sensitive to estrogen and removing it from my system has worked on my type of tumor. Of course I became aware of my tumor after taking Hormone Replacement Therapy for only 9 months, tumor just ballooned up. Our tumors are all so different and its hard to know what is the best for our own personal tumor. Good luck in your search for finding a good match.
Nina
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OK. I am revisiting the question of using RFA, liver resection, or laparoscopic liver tumor removal, to treat a single liver met . It's been 10 months since I started the IBRANCE/Faslodex combo and even though the markers have come down to 51 and the tumor has shrunk to 14mm x 12 mm I'm considering surgery/ablation, I think it's time. Tumor Board says I can do whatever I want including continue on just the medication.
I have talked to Boo, Denise, Longtermsurvivor, Leftfoodforward and Barb but was wondering if anyone else out there has anything to say about RFA (RadioFrequencyAblation) or laparoscopic removal of liver/tumor, or a liver resection for a BC liver met. I know the RFA could lead to a resection if the blood supply gets compromised. I know there are ongoing studies at the moment but none really aimed at which procedure might be the best if a procedure is chosen. My gut (or my fear of pain) tells me try least invasive first.
Thanks for all the information you share and post on this website. It's great knowing there's a pool of sisters out there ready to help with her experience.
Nina
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Nina- I'd say if you have options go with your gut. RFA is a very successful procedure. I know people have had great results with it. Worst case is that you have to do RFA again or have to do surgery. Best case is that the RFA is successful and you are done. There is never a right answer, just the one that feels right. If your gut is saying RFA then go with that.
Good luck
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Hi Nna, it was great to hear from you. I am so pleased that you are heading to a position where you can have the RFA. Very soon you will be NED and that will be a reason to celebrate! Love Boo x
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Nina, there is a proton therapy trial for liver tumors. I don't know if that would be an option for you to consider as well.
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I was just diagnosed with mets, I had an MRI of my liver spot and my Rad Onc is suggesting possible Cyberknife. I see him on Monday so will keep you all posted. I am starting chemo as well so not sure how the process will work but if I can do systemic treatment and zap it that's what I will do!
Kathy
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Thanks Boo, Sheltland and leftfoot. I now have a new toy to look into, proton therapy. When I quickly looked it up, it didn't mention liver but it sounds like a promising form of radiation therapy for difficult to reach tumors.
Kathy, are they suggesting you start the chemo and see if the tumor shrinks before giving it the cyberknife? I just looked up a comparison between cyberknife and RFA to see what the difference was. I never really knew about cyberknife but see it has some good uses "CyberKnife® detects minute body movements and fine-tunes the irradiation angle using a seeker." It's newer than RFA and all the comparison studies are about Liver cancer, not metastatic breast cancer. Don't know if the results apply to both cancers. They showed no difference in outcome between the two procedures but cyberknife, more expensive of course, had an edge with difficult to find tumors.
Nina
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my RO who treated my brain mets with cyber knife said I could do the same for my liver met but not until after I had one RFA. I'm fuzzy as to why but seem to remember it had to do with both insurance and accuracy. Something to do with placing the gold markets that cyber knife would have required. Glad to see it is becoming more mainstream and more of a option for people.
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Thanks for the link Stephanie. Always looking for new info like everyone else. Helps me remain optimistic.
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Thank you for this posting. Gives me hope!
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hello ladies. Well I am ready to claws my eyes out as they will not quit watering. Tried 3 diff scripts and nothing. They water down my face all day long and I hate it. On another note my onc had talked about a liver embolization. What's a cyber knife?
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