How are people with liver mets doing?
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Thanks for the reply candy. I guess I feel a little better knowing you have had that soreness too and didn't necessarily mean it was progression so thanks for that . I did message her.
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Hi
Chiming in. I do not look swollen but omg. It feels like I'm being stretched from the inside out. Also feels like back labor with waves of pain sometimes.
Pain under left rib in front.
Sorry to regurgitate, but at my witts end . I cannot figure out why I should go on Gemzar when I was on Xeloda and progressed. No cool combo drugs. Hmmmm.
Initial dx 6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2- node Negative.
Tamoxifen for 8mos then Lupron.
Hormonal Therapy Arimidex (anastrozole)
Surgery 6/5/2009 Lumpectomy: RightRadiation Therapy 8/1/2009 Whole-breast:BreastHormonal Therapy 11/1/2009 Arimidex (anastrozole)
2nd dx
Dx 11/1/2013, IDC, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+
Surgery 1/1/2014 Mastectomy: Right; Prophylactic mastectomy: Left
Targeted Therapy 2/1/2014 Herceptin (trastuzumab)
Chemotherapy ,Carboplatin (Paraplatin), Taxotere (docetaxel)
Dx 10/1/2014, IDC, <1cm, ER+/PR-, HER2-Hormonal Therapy 11/1/2014 Aromasin (exemestane) finished herceptin in July-Aug 20153rd dx
Skin mets Right side locally Sept 2015IDC, Right, ER+, HER2-Metastatic treatmentTypeExternalSiteChest wall radiation 3/2016 was finished .
4th dx
4/2016 Pet scan then revealed left lymph node involvement and chest wall . Her2- estrogen + progesterone-
Ibrance and fasoldex 2yrs almost
Masses shrunk to nothing markers normal no Ca.
But allowed liver mets to develop.I never had any imaging prior to 10/2018. Oncologist was relying on tumor markers to indicate growth. But never noticed them going up on Ibrance or rather was not concerned.
10.10.18 markers up 187
Liver mets 5 masses liver biopsy . Her 2-, Estrogen +,progesterone +.
Lupron stopped -Xeloda 11/2018-5/2019
Markers over 1000 /15 masses biopsy lymph node her 2-,estrogen +,progesterone +. 50% proliferation.
Dioxl anaphylactic reaction stopped.
Now on Halaven thrid cycle markers still going up. Liver enzymes up. Well over 1000.
Now told to stop and will put me on Gemzar.
Needed to purge,reset.
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FunThing,
Are you being seen at a large teaching hospital? It sure sounds to me like you need a second opinion as to approach at this time, and from what you've described, it doesn't sound like your oncologist is "all in" at all with your case. Wow.
For what it's worth, many oncologists, to my limited knowledge, do not do scanning but instead rely on tumor markers, as your doc did. My former oncologist did the same thing -- I was not scanned from about 2006/2007 until 2018, when my TMs started climbing. There are obviously risks involved in too much radiation from scans as well.
But what jumped out at me were your tumor marker numbers -- how the heck could your doc ignore such a climb in your TMs? Even the 187 should have set off alarm bells -- and what happened after that and before you were over 1000? Was the doc still doing TMs? That is the odd thing, if the answer is yes.
I'd get another opinion to see if there's some other combo that could work for you. Just my thoughts.
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Ref: Tumor Markers...mine have never changed from Day 1 Diagnosis. They are exactly the same...... so I tend to go with the doctor I saw in California at City of Hope and say they are not always reliable at all.....
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Unfortunately
I left the comfortable facility because they did not tell me my markers were a concern. I was there since 2009. I always went for second opinions with each advancement in my dx.
Everytime I asked they told me everything was good every month. No scans necessary. Until in Oct of last year.
Then I went to another facility that was reputable.
But the Xeloda only lasted until April. Markers climb to 600 plus.
Left went to another top contender. Kept me on Halaven until my markers went up and over 1000 plus. They said I did not want to burn thru my options. Lol Now finally changing.
I really do not know what to think or do. I'm exhausted.
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Grannax2 hope your port infection continues to get better and your treatments are smooth.
Kathysmith you have been through a lot! I'm sorry and admire your courage. I hope you get some very useful information from that biopsy.
NicoleRod,I've had sporadic liver pain for the first 6 months or so of I/L. My MO felt like it's wasn't concerning and likely flatulent or digestion.
Bev/Jen, I'm happy to hear that someone else MO doesn't scan every 3 months. My MO uses my TM and lab values each month and feels like for me they are accurate. I'm a little uneasy with this but he doesn't want to use radiation if we don't have too. If I request a scan he will order one. Glad to hear my MO isn’t the only one who treats like this.
Funthing42, I'm sorry for your situation right now. I've read Gemzar can really help with liver mets!
Wish I could participate on here more as topics move so fast and don't always have time to contribute but always appreciate all the support that happens in this community
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Funthing. I would be in a heap of trouble if my docs had only gone by TMs. Mine don't react at all, even with a liver full of mets, lung mets and mediastinal mets.
Also, X failed miserably for me. Now I'm on Gemzar/Carboplatin. My MO thinks it's much stronger than any of the other TX I've been on ( I/L, AA and X). I started a new thread Gem/Carb that describes my SE so far.
Anewbreath. My port incision is still red. Grrrr. Even after finished two different antibiotics. But, two cultures have not grown anything. I'm really frustrated with it. I don't know what my IR will decide to do next. I'm doubtful that it's really an infection. It's not sore or oozing anything anymore, I haven't run a fever or had, any SE that indicate a systematic infection. Maybe it's just scar tissue from being poked at so much. But, why is it red? Puzzling💞
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Anewbreath,
You will note that I said my FORMER oncologist didn't like to scan -- when my TMs starting going up (they seem to be accurate for me) she finally ordered scans. But then, when a CT and nuclear bone scan didn't show anything, she said -- all clear. At my next visit, TMs were up again. She did the same scans, at my insistence (these were separated by 6 months). When nothing showed up again, I emailed a couple of well known docs and asked them what they would do -- one suggestion: get a PET/CT. I also went to a breast surgeon and had an exam (my BS had retired) and asked for a breast MRI. Still nothing showed up, but I felt better that I at least had these two additional tests to look at things. Six months after all of those tests, something finally showed up. But it was really on an abdominal MRI, which I had never had before. So kinda flukey, but at least I now had an answer as to why my tumor markers were going up. I no longer go to that oncologist. I wanted someone who was more on top of things than I felt that she was.
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Can any of you recommend specific vitamens and/or herbs to help my liver heal from its surgical trauma? It feels like they used an ice cream scoop to remove the tissue.
I know it has awesome regenerative powers, but feel it may need a little help, along with the rest of me. Thanks!
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Kattysmith, If I were in your position I would eat sautéed calf's or beef liver with onions.
Organic, if you can get your hands on it. Difficult to get these days even at the farmer's market, unless you talk to a farmer.
The alternative would be to get desiccated liver pills imported from New Zealand-where animals are treated humanely—and supplement with that.
The other option would be to eat bitter greens....liver loves dandelions, if chewing is too much, maybe an extract..
Reduce all unnecessary medications that the liver has to cleanse
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Grannax2, good to hear no fever or SE related to infection. Hoping it’s scared tissue or skin irritations.
BevJen, thank you for writing out details of your TM situation. I know that situation must of been stressful figuring out “Why” but I’m glad your TM were accurate that something was array inside you. Information that will be handy for me as time moves on. Unfortunately, I don’t have access to a major cancer center. Initially, I was able to consulted with Mayo Clinic to see if they agreed with my treatment plan. When I was diagnosed @46 with MBC 12/17 - I started IV taxol and carbo. I was scanned every 3 months and my TM correlated with scans. I then started 6/18 - I/L. I still have monthly MO visits with CBC and TM that I view results on my phone. My TM had dropped from initial chemo and have continued to decrease each month since beginning I/L. If my TM rise, liver values increase or feel Change in me I will request a scan. I know TM reliability can change for various reasons and my situation can change over night so I value everybody’s experience here. 😊
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Frisky, I love chicken livers, onions, and any and all kinds of bitter greens, so maybe I can start with those.
Thanks for the suggestions!
I think I might start taking my turmeric again for inflammation and some vitamin C.
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I keep hearing that lemon is good for the liver, so you might want to look into it and clear it with your onc.
You know what I love, and what I was drinking on my last vacation before I had the best TMs ever (just saying)? Strong organic ginger lemonade sweetened with agave. Real ginger and lemon. There's an anti-inflammatory for ya.
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Grannax, I had a major allergic reaction to the glue put over my port incision a few months ago. I would have thought mine was an infection but my DH recognized the issue right away and told me that my hospital switched to a cheaper surgical glue and the same thing happened to one of his patients. If you question whether it is an infection, it may be worth considering.
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JFL- I was thinking same thing. Allergic reaction.
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I'm living a nightmare! I went for my scans yesterday. I met with my oncologist for results. He had not received the written report from the radiologist but looked at the scans himself. He told me I was stablewith possible reduction in the liver mets.
I had my taxol treatment then went home thankful. BUT HERE COMES THE NIGHTMARE! He emailed me later in the evening saying the report actually shows progression again in lymph nodes in my stomach and chest. As well as progression in the liver.
I have not had a new biopsy since last July prior to all of the following treatment. Last one was ER + her2 negative
I've had 23 rounds of weekly Taxol
With only two weeks off for a trip in June.
Before this is was on Xeloda for 4 months
Before Xeloda I was on Ibrance and letrozole
I'm going to contact mayo to find out about biopsy and trials I guess. I know I can't start another chemo or I won't qualify. How long does it take to find out etc..
Has anyone taken Alpelisib/piqray with fulvestrant?
There is a part of me that just wants to stop all treatment and just wait until I need hospice to end this nightmare. I don't know what to do next...
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Gosh, I guess your MO needs to take a refresher course in radiology! How frustrating. I'm on Gemzar and Carboplatin because the same TX you had before failed me. Plus AA. But, I haven had taxol I don't know anything about the two you mentioned. I have had two liver BX and they were both the same ER, PR + HER 2-. Have you had your genomic testing done? Mine showed ESR1, so that explains why AI don't work on me.
JFL and LFF. I'll check w my IR. But, the incision right over my port did not get red. It's the incision above it where they thread the tubing down. So, I think they use the same glue on both. 💞
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Rtchicago, so sorry to hear about the progression I'm in the same boat...I was wondering if you have IDC or ILC type of breast cancer...ILC kind of sneaks up on doctors, because it doesn't present easily on scans. ILC is also believed to be resistant to chemotherapy. There's an ongoing clinical trial called ROLO for a specific medication for ILC. That's something ILC patients are hoping might help us ....
Whatever you do, I wish you the best of luck! We are all in the same boat....these medications don't work consistently
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Rt_ Chicago...I am not where you are at yet with treatments but I just wanted to say I am praying you are led to the right treatment.
Were you diagnosed Stage 4 to start or did you have a recurrence that led to stage 4? I noticed that you were diagnosed just about 1 year ago and Ibrance failed, how long did it take to fail? Did you have the foundation testing done if so what did that say the tumors would be sensitive to? If you didn't have that done maybe they can do a new biopsy and do that testing?
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I have ILC and it is not resistant to chemotherapy.
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grabbed- maybe your body doesn’t Lin the plastic of the tubing from the port? Just guessing at this point. Hope it gets better soon.
RT chicago. Hugs is all I have to give. I hope there is sone new plan for you soon. Hard to have the rug pulled out from under you. We are here for you.
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Shetland...didn't you have progression while on xeloda? Wasn't the cancer spreading to other areas while you were told you were NED? I'm confused....
It takes years to grow measurable cancer lesions....
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Frisky, here is how I understand things. With metastatic breast cancer one does not expect a treatment to work forever; that would be a cure. One expects to have periods of NEAD or stable, when we say the cancer is responding to treatment. Then one expects the cancer to outsmart the treatment, tumors to grow, and that is progression. So then one changes to a new treatment.
So was this cancer resistant to the chemotherapy Xeloda? No. After my very first cycle of Xeloda, my tumor markers, scan, and symptoms demonstrated a dramatic response. It held for two years. I do not call two full years of NEAD on Xeloda a failure (in the current sad state of mbc treatment). Two years on a treatment is pretty good with mbc (especially when it is not Her2+ and treated with anti-Her2 drugs). After two years two tumors showed up, and my onc describes them as appearing quickly. I don't think it takes years to grow measurable lesions with mbc. It's more like dormant cancer waking up than the early stage ER+ breast tumor the surgeon says was probably growing for years before you found it. In fact, considering how many tumors have not reappeared, I agree with the oncologists at tumor board that Xeloda is still mostly working, and I should continue with it while adding eribulin/Halaven to treat the two rogue tumors that acquired new mutations to outsmart Xeloda.
As a second example from my history, when I was first diagnosed with liver mets five years ago, there were many, many tumors, large and small, in both lobes. My PET-CT was shocking and scary. After one cycle of Taxol, my tumor markers had plummeted, my symptoms abated, and my PET-CT showed no metabolic activity. Chemotherapy worked.
So that is why I say chemotherapy works for ILC in my case. As I have said before, metastatic ILC has morphed into a different beast than early stage ILC. I feel this may be true of early stage ILC that has shown the ability to spread to lymph nodes as well.
As you say, medications don't work consistently. What works for one person may or may not work for another person. So I wouldn't want an ILC patient to refuse chemotherapy in the belief that it will not work, because it might work really well for them. By the way, I have also noticed that the length of time treatments work seems to vary from person to person. I seem to get about two years per treatment, and believe that is the particular character of this cancer, perhaps related to grade. I should see what my onc thinks about this theory.
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My mother is 71 years old she have a breast cancer with mestas in the bone from one year and now she have a mestas in the liver 2 spot 1.5 cm and she doesn t have chimo before she always take hormone armidex and after 9 months with hormone the doctor stoped hormone and she starts armosen 25mg after the doctir discover mets in liver and armidex stoped ....i m scary for my mother any opinion or experience thanks ??!!
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ZZZ, sometimes using a different kind of aromatase inhibitor, such as switching from Arimidex to aromasin, does work. If not, perhaps your mother's doctor will recommend Faslodex/fulvestrant, which is a different kind of hormonal therapy from those other two, and often works when Arimidex or aromasin has failed. Targeted therapies such as Ibrance can be added to hormonal therapies to make them work longer, so you could ask about that. After hormonal therapies, a typical next treatment would be a chemotherapy pill called Xeloda/capecitabine, which for many women is the easiest chemo, and seems to work well in the liver. Best wishes to you both!
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Shetland thank you for the explanation...chemotherapy has definitely worked for you and continues to serve you well, I'm hoping it does something good for me as well.
And you're right when you say that we react differently to the same treatment regardless of what the genetic makeup of our disease is...
In my case, my gut and the progression of my disease tells me that letrozole was the only effective cancer treatment, I believe that when I developed a resistance to it, my fragmented and lazy ILC kept on advancing —God knows where by now—undetected by the 3 months pets scans....and definitely not stopped by all those medications I took
it became visible—to the pet—four years later, when it started becoming voracious and lit up...finally revealing itself...
I don't know where I read this, but apparently it takes 10 years to develop a 1cm tumor....
A quick search....Scientists have found that for most breast and bowel cancers, the tumours begin to grow around ten years before they're detected. And for prostate cancer, tumours can be many decades old. "They've estimated that one tumour was 40 years old. Sometimes the growth can be really slow," says Graham.Oct 18, 2018
With most breast cancers, each division takes one to two months, so by the time you can feel a cancerous lump, the cancer has been in your body for two to five years. It can certainly seem like a lump appeared out of nowhere – especially if you or your doctor have recently examined your breasts and not felt anything suspicious – but in reality, the cancer has simply doubled that one last time necessary to be noticeable. By the time you can feel it, a breast tumor is usually a little more than one-half inch in size – about a third the size of a golf ball. It has also been in your body long enough to have had a chance to spread.
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Yeah, another thing that varies among ILC patients is how well it shows up on scans and which scans show it best. I asked an expert radiologist about this at an ILC symposium, and he said that if it shows up on a particular kind of scan, he expects it to continue to show up that way. Sometimes MRI is better for ILC. Have you tried MRI to compare? Letrozole is supposed to be a good one for ILC. I was on it for two years along with Ibrance, but I think there was slowly building progression during the second year. They tell me that is typical when Ibrance starts to fail. But I also think in my case this ILC is slow but relentless. It plods along like some huge beast in a LOTR battle scene. Not fast but eventually it will get me. Have you been able to get a biopsy to see if there are now mutations that confer resistance to hormonal therapy?
I would think the length of time a tumor takes to develop depends on the genetic makeup of the tumor and on the microenvironment (seed and soil). Did the info you found discuss early stage vs. metastatic?
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MSK performed a liver biopsy and apparently took six cores...MSK took one core and performed their own genetic profile, but after months of waiting for the results, I was told that there couldn't find enough material in the core to determine anything...meanwhile they had let Pfizer use my other cores during the clinical trial I underwent, so now I am screwed, and as you've noticed, my trust in our doctor's abilities and intelligence is at an all time low...
The fact that they went straight to the lesions in my liver, guided by an MRI, to get the cancer cells and end up with nothing worthwhile, leads me to believe that my cancer is truly disconnected, or the more likely scenario, these doctors are bothcomplacent and corrupt....
My gut feeling about my ILC is that I have nothing to lose if I throw at it everything I got! Traditional and unconventional, since conventional offers NO HOPE or way out....
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How frustrating to have the tissue wasted. My recent liver biopsy did not get enough material for anything more than ER, PR, Her2, AR, and e-Cadherin. So we did a liquid biopsy, which returned almost no info, probably because not enough cancer DNA is being shed. Piffle.
My hope is that they will find our herceptin, something that will give ER+ Her2- patients long-term remission the way herceptin has done for many Her2+ patients. Also, now that patients and researchers are cooperating to put ILC on the map, I hope we will get some ILC-specific treatment. I’m referring to the lobular breast cancer alliance.
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Yes, I have the same hope for an herceptin type medication for us...sorry to hear about the lack of results from your biopsy...In a way, I think it’s good that our cancer cells remain disconnected....maybe they can wreak less damage...good luck with your treatments Shetland
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