How are people with liver mets doing?
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Hi
Thank you for your answers.
Grannax and Miaomix: I have asked a couple of oncologist about y90 - they both said that I'm not a candidate for this treatment.
My liver numbers have been rising the last 6 months - the naming of these is not the same as in US, so I don't know what they're called in English. I've had quite many liver pains for the last year. Two months ago I started up on tramadol. The mets are pressing on other organs and now the pain is constant. Other than that I don't have any symptoms - I think.....Occasionally I'm very tired, but it may also be a SE from xeloda.
From the very start of my diagnosis my mets were "innumerable and undefined" - so I have never been a candidate for surgery. This last year they have been very aggressive - latest scan (January) showed that the largest has been growing from 1 cm to 7 and several others growing to around 3-4 cm (since May 2018). There were no growth in the largest mets (from November scan), but several of the smaller mets had been growing. Oncologist said this might indicate mutation, but she wanted to wait until next scan to change my treatment. I'm in for a new scan in April - but I'm quite sure that they have grown since January, as my liver pain is now constant and I have to take tramadol every day.
I haven't been explicitly told that there is nothing more to do - but I fear that this day is approaching very fast as so far nothing has been able to stop the growth.
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lisbeth....I truly hope and will pray that the next treatment coupled with an updated genetic profile will resolve or slow down the lesions and liver pain. I'm so sorry for your suffering....please keep us updated on your next treatment. Fatigue is definitely associated with X, although in my case I have less fatigue now than when I was on the hormonals.
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Lisbet, I'm sorry this is happening. Three thoughts. First, can you get your scan sooner so they can take action sooner? Waiting seems risky given your symptoms. Second, is it possible to do some genomic testing via tissue biopsy (Foundation One, Caris) or liquid blood biopsy (Guardant 360)? I'd vote for Guardant because it is easy and accounts for tumor heterogeneity. A certain number of Her2 negative metastatic ILC cases have a Her2 mutation, and there are drugs such as neratinib to treat it. This is different from Her2 amplification as in Her2 positive; Her2 mutations are not detected by standard IHC or FISH tests.
Relapsed Classic E-Cadherin (CDH1)-Mutated Invasive Lobular Breast Cancer Shows a High Frequency of HER2 (ERBB2) Gene Mutations
http://clincancerres.aacrjournals.org/content/19/1...
Nonamplification ERBB2 genomic alterations in 5605 cases of recurrent and metastatic breast cancer: An emerging opportunity for anti-HER2 targeted therapies
https://onlinelibrary.wiley.com/doi/pdf/10.1002/cn...
A clinical case of invasive lobular breast carcinoma with ERBB2 and CDH1 mutations presenting a dramatic response to anti-HER2-directed therapy
https://academic.oup.com/annonc/article/27/1/199/2...
I have more if you need them. Can you get your oncologist to investigate this?
Third, we have a long-time member here on BCO who had been through many treatments for liver mets, and was getting quite worried, when they did a biopsy to re-check Her2 with a sensitive test called CISH. The cancer had changed to Her2 positive (amplified)! So she got to go on herceptin/perjeta/taxol and it turned things around for her.
https://community.breastcancer.org/forum/71/topics...
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Does anyone if chemo (Taxol) increases liver numbers ALT & AST?
Thanks
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Leee, I have read that up to 30% of people on taxol experience increase in liver numbers. They usually return to normal once taxol is stopped. I have never read an explanation for the phenomenon, but there are so many mysteries in this disease and it’s treatments!
I hope this helps.
Hugs and prayers from, Lynne
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Hi
Thank you for taking the time to answer. I don't know what options I have. I don't have my own oncologist - but the hospital has a team of doctors, so I never know which one I'll talk to. Unfortunately we don't have the same options here to choose our own treatment. I have looked into trials. I'm Her2- and ER+. Trials available at the moment are for tripleN and HER2+ . *And I don't think I can move my scan at the moment, as there are waiting lists. I'll ask for a new biopsy when I see my doctor again.
It does scare me that you, Shetlandpony, think that waiting is risky. And I had hoped that there were people here who had been in my situation and had the picture turned around. This is a terrible disease - and I know that I have read about persons here where things went very quickly. I fear this is my situation. It's really difficult to be hopeful and optimistic.
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Lisbet, although difficult to accomplish, try to relax and not obsess about what might happen. Pessimism doesn't help our case. It's important to minimize stress at this time, which leads to inflammation, which leads to pains and fatigue.
If you can, take a relaxing warm bath by adding 4 or 5 cups of Epsom salts. I hope that helps you feel better...
How wonderful to see all the treatment options Shetland Pony has kindly and generously posted for your benefit...I'm going to review them this weekend to see what I can learn...
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Lisbet, I'm just another patient and am not in a position to say it is risky, but that is how I would feel. Maybe at least ask if it is behaving badly, perhaps it has a Her2 mutation or amplification and would they let you try neratinib which could work for either. (Herceptin probably only works for Her2 amplified.) Maybe give them copies of the articles. Or maybe the oncologist will have a new treatment in mind.
It scares me, too, when I see how quickly things can go downhill. I try to think about friends here who had a scary time and then the right treatment turned things around. I hope your doctors can find you that treatment. Sending love.
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What you know....wonders never cease...
New Study Says Breast Cancer Is 11 Different Diseases, Allowing Researchers To Predict Relapse
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Lisbet,
I am heavily pretreated, having been doing this for 7 years now. My last two chemos were Navelbine and Doxil, and they just held the fort steady, and then Navelbine completely failed, leaving me with a partially collapsed spine and high disease volume in my liver.
It's scary. My liver went from functional to "let's talk about liver failure" in about two weeks time. After the liver values jumped up, they shoved me into a PET/CT, and it showed diffuse tumor progression. This meant that I wasn't a candidate for radiation, as that much radiotherapy could cause liver failure as well.
I was very scared.
My MO put me on Gemzar/Carboplatin, and if I didn't respond to it, I was in deep manure.
Luckily, I responded. And how. At the beginning of my third cycle (two days ago, Tuesday), my liver values are all in the normal range (Bilirubin went from 2.6 to 1!). TMs have gone from 1400 to 329. The second cycle was effected by getting the flu, so I had to have two weeks off and a reduced dose.
Now, if I could just get my silly gallbladder to cooperate, I would be in clover. I'm hoping when Spring comes, I'll be fit enough to garden.
With the right chemo, things can turn around quickly. If you haven't done a platinum therapy (like Carboplatin), they tend to work pretty quickly. Like Shetland Pony, I think that if the disease is on the move, waiting around is not the best move.
I was looking over your treatment list, and it looks like Taxol is the only "chemo" you've gotten? Halaven and Xeloda were great for liver tumor suppression too. With Halaven, I was actually NED for about 6 months. That never happens with me. And Xeloda is pills you take at home. So liberating.
You've got lots of options. I'm kind of jealous!
Let us know what you decide on.
Jennifer
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Blainejennifer Congratulations on the great results....I loved reading your story. It gave me so much hope because I’m so scared of having to do, what I consider heavy chemo, if and when xeloda fails me.....now I feel so much better and I’m sure Lisbet will be lifted by your story as well....
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I just started a thread called Stage IV ILC -- Let's Share Research, News, Treatment Options
https://community.breastcancer.org/forum/8/topics/...
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Wow, great post, Jennifer.
Miaomix, I'm quoting the last paragraph of the article you cited here:
"The team is currently developing an affordable test for use in hospitals and investigating better personalized treatment options for breast cancer patients based on their findings. They hope to eventually run clinical trials using the test to stratify women onto better treatment protocols fitting the precise genetic makeup of their tumors."
It's about time, eh?
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Lisbet, Y90 is not surgery but rather interventional radiology. It’s use in breast cancer is cutting edge and many doctors are not familiar with the recent research done in breast cancer patients. You can have it done even with innumerable, poorly defined liver mets, as mine are. I had Y90 last year. The first IR I spoke to said I wasn’t a candidate and it was risky. Then I went to a specialist in oncology IR with experience with Y90 in breast cancer patients and was told I was an ideal candidate and the procedure was low risk. My tumor load has ranged from 10% of liver to 70% liver involvement, mostly blobs and areas of infiltrating cancer among liver cells that eventually converge into bigger blobs as the cancer grows. Y90 is the first local therapy used in patients with a high tumor load. It is actually not used in people who have only a few liver tumors. Radioactive beads are wired up through the artery in one’s leg to the hepatic artery in the liver. The radioactive beads are then released into the artery and are selectively drawn in to the tumor cells with very little impact on healthy liver cells. Liver tumors high-jack the hepatic artery blood supply and account for 85% or more of its use while healthy cells primarily use the hepatic vein for blood supply. The tumor cells suck up the radioactive beads and then the beads release the radiation once inside the tumor. Y90 may not be an option with your healthcare system but you may want to try investigating further
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Thank you so much - all of you who have taken the time to encourage me. Yes, I know that I'm heavily depressed. Usually not a person depression prone, but as none of my treatments so far have worked, I'm scared.
I'm in Denmark - and our system here is quite different. I cannot get Y90 - that's for sure. I have asked about it several times. I may be able to get it in Germany - if I pay out of my own pocket. I don't know the price exactly - only that it is heavy! I'll search the matter and call to hear if they think I'm a candidate - and then try to raise the money.
Unfortunately my latest treatment, xeloda (capecitabine) hasn't had any effect on me at all. I did have so high expectations to this knowing that it has been a game changer for so many with liver mets + it's very convenient. After my next scan I know I'm going to have one of the "heavy chemos" - and I'm almost as scared of them as dying. I know so many who have lost almost all QOL on these chemos.
I'll spend the weekend looking at the links. Thank you so much for providing these.
I wish you all a wonderful weekend. I'll report back when I know what's coming.
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lisbet, I know how frightening this disease can be. Depression is common, especially when it seems that treatments are not working. Although many people do see response from xeloda, my liver Mets also progressed while I was on that treatment. Like you, I was reluctant to begin IV chemo. I thought my life would go through a dramatic change - full of nausea, vomiting, diarrhea, or worse. I have been on Taxol for 5 weeks now, and I have been pleasantly surprised. I had achy legs the first week, but I feel quite strong and normal now. My blood counts have dropped a bit, but so far not low enough to need to skip treatment. I have lost my hair. I realize that hair loss is a major concern to most of us, but if taxol works, I would gladly trade my hair for stability or improvement in my liver Mets. Of course there are several other IV chemos, and many of them do not cause hair loss. Maybe IV chemo won’t be as bad as you think it will be. If you try it and cannot tolerate it, you have a right to ask for or something one thing else. Please keep us informed about how you are doing and let us know if you have questions.
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Lisbet, I`m sorry for what your going through. I don`t have liver mets.that I know of (resultat of latest scan pending), but I`m also in DK, and know our rigid system. I go to Herlev and have learned from experience that if you are really persistent it is possible to get the MOs to think a little outside the box and also speed up things - including scans. If you feel that you have the strength you could try to challenge “the system” by being annoyingly persistent
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lisbet you have been on my mind. I'm so sorry your healthcare system won't pay for you to have a y90. It worked so well for me. I still hope you can get an appointment with an experienced expert in Germany just to see if you are a candidate. First things first. Also, I'm wondering how old you are. I've had almost every strong chemotherapy that's out there. Yes, they were when I was younger. I have 27 years of experience with BC and MBC. Yes, I lost my hair 3 times, not fun. During the hardest chemotherapy FAC, I continued to work the whole time. It is not the scary, life altering, quality of life altering TX everyone one talks about these days. I will do it again in a heartbeat if it's the thing I need to do. In fact I may be doing it again within the next month or two.
Keep hoping for something that will reduce your liver mets. Know that many of us are in the same boat.
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lisbet, I know it's going to take a bit burocratically wise but I am pretty sure you have the right, as a European citizen, to access other countries' facilities within the EU. It needs to be a public clinic/hospital but it can be arranged. Once you have authorisation on your end (Denmark), insurance will cover it. There are certain departments that deal with that in every big hospital. I am pretty sure some countries in Europe offer y90 for breast cancer.
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Hello everyone, I've been mostly reading and not posting much lately so I will give a brief replay of my situation: last scan I had showed cirrhosis and ascites. I don't have any risk factors for that so I figured most likely liver Mets. I started abraxane and after one treatment the ascites went away. Yay! Tm went from 2200+ to 139 in 4 cycles. This Monday I will start the 5th cycle. Well for about a week now I have been noticing the ascites returning. Today my lower legs were very swollen. The marker that was 139 was only 3 weeks ago. It seems unlikely for the chemo to stop working that abruptly. I'm sure it does happen but still. I'm starting to thing this isn't liver Mets but maybe heart failure. When I first got the ascites I was doing a lot of things to try to help it, like lemon/baking soda water, milk thistle and other supps, watermelon.....when they cleared up I stopped doing those things. I wonder if they really did help and the chemo was a coincidence. I don't know what to think now. Guess I will know more when I see doctor Monday and then see the tm friday.
Lisbet, hang in there. It's very scary when things don't work. I agree with the others; there are lots of people I can remember that had a complete turn around. I just wish they would start you on something! Even if it's before the scan.
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Suggestions please
I just found out y90 didn't work. Yet again progression in my liver and possible lymphatic involvement in my abdomen. I see MO Monday to discuss results further. His preference is taxol.
I just can't get my head around taxol and complete hair loss again with no end if it even works. Then on to others that are even more horrific. I feel mutilated by this disease.
I was diagnosed in 2015 with stage III. HR/PR + Her2 -
TAC
Double mastectomy
33 rounds of radiation
Hospitalized for infection
Failed implant (basically my skin tore open because of radiation.)
DIEP FLAP reconstructive surgery
May 2018 recurrence with mets to my liver
Y90 to right lobe February 2019
Scan shows progression March 2019 in liver and possible lymphatic involvement
I am devastated and tired of fighting this beast. My family has been through enough. My gut says go live life while I feel great and deal with the symptoms when they come. I feel selfish and afraid. Though my faith is strong and I'm not fearful of death it this suffering part that messing with my mind. 😢 I'm grieving the loss of not being part of my kids futures and for my sweet husband I have no words. Thanks for allowing me to see into each of your battles.
Michelle
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RT-Chicago, ask your MO about Doxil. I had Y90 to right lobe of liver in May 2018, it worked and things were stable(with Xeloda) until liver MRI Feb2019 showed progression. Have involvement now with adrenals, spleen, and one lymph node. Had first Doxil infusion on March 8th-had a bit of a reaction which was quickly brought under control. Am now over a week out and have had NO SE's! Yay! also will not lose hair. WBC's will tank so must be careful with exposure to germs mid cycle. MO expects a good response and will scan after 3 cycles. Oh, also infusion is once monthly. They will do echocardiogram before Doxil to make sure your heart is strong, as Doxil can cause some damage. however, as Doxil is a liposomal form of adriamycin, which means it's a bigger molecule coated with fat that does less damage. If you had Adriamycin before, maybe your MO doesn't want to use Doxil?
Best, Mary Jane
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lisbet-Doxil for you, too? see above! Yeah, how 'bout a round of Doxil for everyone! On me! (Sorry for the twisted humor-it must be chemo brain)
Best, Mary Jane
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Michelle,
Have you had a biopsy? I assume you were on endocrine therapy when you progressed, but have you had a CDK4,6 inhibitor? There are a lot of targeted therapies out there that can act as fast as chemo, have longer control and fewer side effects. It's definitely time for a second opinion...
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RT_Chicago (Michelle), I'm sorry that you're going through so much and the future is uncertain. I just wanted you to know that your post touched me and I'm thinking of you.
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RT Chicago. I totally understand the mutilation comment as I tell folks that I have had 4 sets of breasts; one natural set, two silicone sets and 1 prosthetic set.
I also understand your emotions. For me, the emotions are peaks and valleys and the valleys are so very rough.
But I am here, 2 1/2 years after Stage IV with widespread liver mets dx. This journey is hard and we are here to listen, hold your virtual hand and give you positive energy. There are those among us, who spend precious time researching and educatiing us what is out there in the trial world. That is helpful for future reference..keep a folder.
If you can update your treatment profile, it would help us see exactly what meds you have been on and your latest biopsy results.
There are good treatments still available, you haven't used up your "book of tricks" yet as my MO (medical oncologist) would say. I guess it depends how quick your lesions are growing, and if you need to hit it hard to stabilize, then transition to targeted and/or anti hormonal therapies..assuming you are still ER+. Is it possible to repeat Y90 on the newest lesions?
Keep us updated.
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Unlike AC CHEMO where I went completely bald, I have had 10/12 Taxol and didn’t lose all of my hair. It did thin a ALOT but have kept a thin layer of hair. Eyebrows have thinned at the ends but have kept most of them.
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Michelle, sorry to hear about your struggles. BC is the gift that keeps on givinv. I would make sure the Y90 did in fact “not work”. Typically, one month is much too early to scan for Y90 results. IRs will say it takes up to 5-6 months to see results. Y90 often causes the lesions to swell at first when it is working and appear larger on the scan. Also, there is often a ring from the radioactive material around the lesions that will light up on a PET at first. It looks like progression but it is not. On my first scan a few months after Y90, the radiologist interpreted it as progression and wrote up a bad report. My MO then spoke to him to remind him I had Y90 and my report was edited to state it appeared to be changes were associated with response to Y90 treatment. That would not explain the lymph node(s) but you may be in a better position than originally thought. Please make sure to push your doctors and confirm this is in fact progression and not post Y90 swelling
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I'm writing for a friend who has ascites in his abdomen due to liver mets from ocular melanoma. He is contemplating whether or not to have the ascites drained. Can anyone share their experience with having ascites drained for liver mets? I have lung mets and draining ascites from lung mets can really improve breathing and overall quality of life.
Rt_chicago (Michelle), your post touched my heart too. I'm so very sorry for what you are going through. I also find the prospect of leaving my children and husband to be the hardest part of this diagnosis. I'm praying that your next treatment will be effective against your liver mets and that the side effects will be tolerable.
Hugs! Theresa
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Hi!
My mother has stage IV BC with liver mets. She has had a lot of ascites in her abdomen the last couple of months, and she’s had it drained maybe four times? For her it really helps. She says it’s not painful, it’s effective and it improves her breathing and appetite. She always feels much better after.
Hope that helps. Good luck to you and your friend!
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