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How are people with liver mets doing?

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  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    When discussing how fast a tumor grows we need to take into account the proliferation index of the tumor, which is how fast the cancer cells are dividing (as Shetland said, the genetic makeup of the specific tumor). The faster the cells are dividing, the faster the cancer grows. An aggressive cancer grows dramatically faster than an indolent one. The most commonly used measure of proliferation is Ki67, anything above 20 is considered high/aggressive. My Ki67 has been in the 60-70 range every time we biopsy, and my cancer grows much faster than someone who has a Ki67 of 10, for example. I have described it as if someone had flipped a switch, it just takes off running. 10 years to grow 1cm? Many of mine have grown more than that in less than 6 months.

  • Rt_chicago
    Rt_chicago Member Posts: 42
    edited September 2019

    I really need to update my treatments. Sorry for the confusion but I was originally diagnosed stage 3 2015. I’ll update you guys after I speak to oncologist today. 🙏🏼 Thanks for all the responses.

  • Frisky
    Frisky Member Posts: 1,686
    edited September 2019

    LoriCa, but how would you know that the cancer wasn't there all along? And it showed up in the scan only when the scanner was capable of detecting it?

    I find it really hard to believe that the three lesions in my liver grew in within a three month's time...and doubled in a month's time, after four years of laziness.

    It's more reasonable for me to believe, that the cancer was growing undetected all along, the medications never worked, and it showed up when it took enough sugar to lit up....

    surprise, surprise....they go for an MRI guided biopsy and can't find enough cancer cells....hummm....do we need Sherlock Holmes for this case?

    Everything is explainable if we start with the premise that maybe, just maybe, these medications are useless after all, you know, with stage four they admit it's all palliative....all they have to do is admit its the same with every other stage...but wait....they actually do....they give everyone a 5 years survival rate, no matter what the cancer is


  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    Frisky I don't know the answer to that. If you have an indolent cancer it is very likely that it was there for a long time before it was detected. My only point is that we can't make generalizations about the growth rate of cancer without differentiating between an indolent cancer and an aggressive one. They grow at very different rates.

  • candy-678
    candy-678 Member Posts: 4,166
    edited September 2019

    Chiming in here on tumor growth.

    I had a CT of the abdomen in Jan 2015 for something totally unrelated. Nothing abnormal about liver. Then CT of abdomen in Sept 2017 showed an 8 CM tumor in the liver !!!!!!!!!! So it definitely grew faster than over several years. My Ki67 index was 24.

    Also, my MO says anything over 1mm can be detected by CT scan. I have a 3mm lung nodule we are watching. No biopsy of lung so unsure if malignancy so we just watch.

    Just sayin.

  • Frisky
    Frisky Member Posts: 1,686
    edited September 2019

    I hear you both...and yes, it's likely true that cancers grow at different rates...what I understood, from the lecture that a doctor gave—maybe it was a TedTalk— was explained as such: based on how small cancer cells are, allowing for a constant and uninterrupted doubling of cancer cells, it would take 10 years to produce the trillions of cancer cells that make up a 1cm tumor....I'll try to find the original source...maybe I'm missing some important detail...

    You probably know what they say about chemotherapy, how it makes the cancer more aggressive as it fights for survival? I believe that chemotherapy simply makes these stealth tumors visible...finally appear, as the furiously feed on the sugary contrast to survive. But, this of course, it's only the conjecture of a crazy Italian....so take this last bit with a grain of salt..

  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 23
    edited September 2019

    my mom she have also mestas bone and received the scan she have mestas in his liver 2 spot 1.5 cm and the doctor say she will take armosen hormone and after 15 days if the hormone is not respond she will take chimo ...........she have 71 years and i m scary to take kimo what s ur opinion of my mom please i m scary

  • lulubee
    lulubee Member Posts: 903
    edited September 2019

    I have ILC. The most effective treatments out of the 7 or so I've taken in the past decade have been Xeloda (3 years) and Taxol (2 years). Xeloda got me to NEAD for a long time. Taxol (after emergency heart surgery) quickly and totally dried up the rampant MBC mets in my pericardium and saved my life.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited September 2019

    ZZZAAA. The right treatment for your mom depends on so many things. Where does she live? What Cancer Center does she go to? Is it a big one? If not is there any way she could go to a big one for a second opinion? Does she have other health concerns?

    Most important is what the pathology report said. She, or you ,can get a copy from her medical oncologist. If the tumor was ERPR + HER2- she should be able to take Ibrance and Femara. It works really well. And it’s a pill. There are several other pills that her doc could prescribe. Yes, liver mets are much scarier than bone mets. There are lots of treatments for those. Some are pills and some are local procedures.

    There are plenty of options for your mother. She probably has many years of life to live.

  • Frisky
    Frisky Member Posts: 1,686
    edited September 2019

    lulubee, thank you for confirming your more than positive results with chemo...I feel better about my prospects now, knowing that chemo could work for me as well. May you continue to get great results.

    One less useless discussion when I see my MO next week!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited September 2019

    Lulubee, you are my hero. You have navigated so many murky ILC waters. How are you feeling on Verzenio and Faslodex? I would be very interested to hear more about the bile duct stuff you dealt with. I just added Halaven to Xeloda in an effort to reach the point where the stent can be removed before it becomes infected again. There are just two lousy tumors, but the location of one is a real problem! My onc thinks it is next to and not in the duct, but I don't know how certain that is.

    Good luck, Frisky,and let us know how your appointment goes.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited September 2019

    LoriCa...I was looking back at my liver biopsy...at the KI-67 after reading what you wrote above. Mine says

    Ki-67 FDA approved Ventana close 30-9 RESULT: 70%...

    is that what you meant when you said yours is 60-70? I am also a grade 3 like you. Would that mean most people with a high KI would be a grade 3?

    Lori in May of 2018 I had a CT of my abdomen my liver was clear (I was not yet re diagnosed) I had it for something unrelated. At that time though and 6 months prior I was having pain in my hip and sacrum (had a CT scan they found nothing, but the cancer was there found out later it was probably just too small to see). In Feb 2019 I get re diagnosed (from my stage 0 in 2014) and what happens...I have 2 lesions or 3 in the liver. My point...lol those tumors grew in about 9 months or less... Grade 3..... so I guess I am like you in that sense.

    Nicole


  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    Nicole, they usually but not always go hand in hand. Anything above 20 is considered high, those of us above 50 are super high and are almost always Grade 3 (but not all Grade 3s have a super high Ki67). I see that you are also PR-, so you're Luminal B like me. And I have IBC (and am HER2+), so my cancer is about as aggressive as it can get on every measure.

    I've been dealing with resistance issues and getting scanned often, so I have good comparison numbers as to how fast mine grows (not just when they are first detected). For example, I have one tumor (not my liver) that was 3.2 x 6.2 x 5.5 cm in November 2018 before chemo, and two months later in January 2019 was 5 x 7.3 x 6.9 cm. TWO months!

    Lori

  • nicolerod
    nicolerod Member Posts: 2,877
    edited September 2019

    Lori wow on that growth :(:(

    Yes when I was first re-diagnosed they said I was ER and PR+ HER2- but then after the Oncotype I came up like ER+ and 1% PR + so they basically counted that now as PR- but I believe I am still HER2- or I was a few months ago.

    Lori what is IBC?

  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    Nicole IBC is Inflammatory Breast Cancer. It is rare (only 4%), always at least Stage 3B when diagnosed (a very high percentage are Stage IV de novo like me, I believe it is 40%), and it is super aggressive, the deadliest type of breast cancer. It starts in the dermal (skin) lymphatic system of the breast and grows in sheets/layers, not a lump (it can form a lump when it's advanced), so it usually isn't detected by a mammogram.

    Lori



  • nicolerod
    nicolerod Member Posts: 2,877
    edited September 2019

    Lori... I am so sad that you have such a rare and serious BC..not that all of ours is not serious but wow.Thank you for explaining to me what IBC is. :( I am going to pray so hard for the Lord to cover you and your doctors to find something to SLOW THIS DOWN!!

    (((hugs)))

  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    Thanks Nicole, I will take all the prayers (and hugs) I can get! It's been challenging, that's for sure, but you're right that all of ours are serious. This disease really sucks. :(

    We get it stable or slowed down in one place and it just pops up somewhere else. Right now I'm in the midst of yet another round of scans and consults because now it's all throughout my lymph system too, multiple clusters from supraclavicular down through abdomen, and we're trying to figure out what to try next. I'm trying not to panic since the lymph system is one of the primary ways cancer spreads through the body and I know that if I get mets in yet another organ it really won't be a good sign. And you see how fast mine grows, so there's always this huge urgency to find something that will at least slow it down. On the up side, my doctors don't waste any time whenever I have a new symptom, they usually have me in for a scan within 24 hours.

  • trishyla
    trishyla Member Posts: 698
    edited September 2019

    Good morning, ladies. I'm sorry to barge in on a stage IV thread, but I have a question for a friend with stage III ovarian cancer (possibly stage IV, but she's in denial)

    She has been having these crazy reactions to chemo. They had her on Taxol, high dose, every three weeks. She ended up in the hospital for a week with intense abdominal pain and a high fever. No infection.

    She convinced her doctors (with a little prodding from me) to switch her to a lower dose weekly Taxol. First infusion she had a ton of pain, but no fever. Second infusion she had pain and a fever of 104. Rushed to the hospital. After two days, she had what her husband calls "a brain code". Now she cant use her limbs and is having trouble speaking.

    My question has to do with something I read on one of the threads a while back. It had to do with the chemo killing the tumor off too quickly, causing the liver to be overwhelmed with dead cancer cells. For the life of me, I can't remember what it was called. (Damn you, chemobrain!)

    Does this sound possible? No infection, but a really high fever? Intense abdominal pain?

    She's at a very Cedars Sinai here in LA, so they should know what they're doing. But she's in no shape to advocate for herself and I just don't want her to fall through the cracks.

    Thanks for your help.

    Trish


  • JFL
    JFL Member Posts: 1,373
    edited September 2019

    Trishyla, it is called tumor lysis syndrome or tumor die-off syndrome. I don't know either way whether your friend has it but it is certainly a possibility.

  • trishyla
    trishyla Member Posts: 698
    edited September 2019

    Thank you so much, JFL. I'm with her right now. I'll pass the info on.

    Trish

  • funthing42
    funthing42 Member Posts: 236
    edited September 2019

    Hi everyone. All Of us have been through so much.

    I wish I had encouraging words. I will get there. Keep strong.

    For the ladies with liver Biopsies issues is there any other places they can biopsy?

    My new Onc was confused to why I Biopsied my liver when I had a huge lymph node.

    Anyways there was of course mixed opinions.

    I had my first treatment Thursday. Gemzar no carboplatin because of the toxicity.

    I'm experiencing severe epigastric and arm pain where the large node is. Bloated and can barely move. I was fine Friday.

    I'm not sure if it is because it is working or its because its angering it. This is what happened with halaven and Xeloda. (Angering it that is)

    Any ways. I'm very tired of the no remission.

    We are all so strong here. Truly amazing.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited September 2019

    funthing. I started a new thread called Gem/Cairb. Hop on and you'll get to read about my SE and a couple of others. I'll start my third cycle on Wednesday. I just re read your post, you are not on Carbo. Is that just for this cycle or always?

    What pre meds do you get? I opted not to have is the anti nausea meds or the Dexamethasone. The anti nausea meds caused constipation . Gemzar does cause tiredness. Especially, without steroids, I usually sleep the rest of the day after chemo.

    It seems like every cycle I have different SE. Surprises always surprises. 💞

  • bsandra
    bsandra Member Posts: 1,027
    edited September 2019

    Dear LoriCA, dear Frisky and others,

    I'd like to chime in and to explain how I understand ki67 from my research and MO explanation. So, firstly, k67 is a proliferation index, which tells us what percentage of tumor cells are mature, or in other words, in a phase of dividing, at the time moment. So, say, if you have a tumor of 10 cells and your ki67=70% (which was my wives on last biopsy), it means that during nearest division 7 cells will divide, and you tumor will become 17 cells. And here comes another tricky part - the period until cells get matured and divide. These periods vary according to one Swedish study from 7 to ~400 days. So, an extreme example would be: division period is ~7 days, and ki67 is 100%, which would give you a doubling of tumor in volume in just 7 days! I have noticed when there was a progression in my wives left breast, that her tumor (redness) was almost doubling ~every 25 days, so I believe her period is ~25 days, and with ki67=70% her tumor can grow +70 % in just 25 days. Very unlucky and very aggressive. Sure, not all cells divide at one time moment but it is pretty close. So for others, who's C is very slow and let's say its ki67 is 10% and period is ~ 1 year, they can be growing very slowly for years and years until we see metastasis on PER or MRI or CT. But then wait wait wait... When does chemotherapy work? When C cells are dividing and they are immature, so that is why high ki67 and short division period tumors are killed by chemo very very effectively. My wives 7 cm tumor in her breast was wiped out completely after only... 3 chemos, and after mastectomy NO C cells were found in that place (but were found in another)! So, when cancer is very slow dividing, if chemo is injected and is still very active and cells are not in division phase (or just a few % of cells divide), chemo does not do anything... This is why chemo is ineffective in slow dividing tumors, which are quite often ER+/PR+/HER2- tumors:/ So this is why targeted therapies are so important for these tumors. I believe if good and well directed targeted therapies existed, slow dividing C would be very easily made a chronic disease... Fast dividing C is already very well controlled with chemos and then later with targeted therapies. Another thing is, for sure, drug resistance but that is another topic. Hope my explanations were OK, or if anyone has to add to them, it'd be amazing, as I am no doctor (but Ki67 and division cycle correlations with effectiveness of chemo was very obvious in my wife and few other patients I know)...

    Saulius

  • Frisky
    Frisky Member Posts: 1,686
    edited September 2019

    thanks Saulius, your clear explanation has helped me understand better how cell divide, and has wiped away some of my ignorance on this topic...it sure explains also why chemotherapy is so inconsistent with the ER and PR positive people....our cancers too must move at different speeds...do they know what affects the speed of the cell division

  • nicolerod
    nicolerod Member Posts: 2,877
    edited September 2019

    Saulius...thank you for that explanation. My husband and I read that together.

    I have a question though... What about someone like me whose KI67 was 70 but yet I have a Grade 3 (rapidly dividing) yet I am ER+ HER2- ?

    I was told when first diagnosed with Stage 4 that if there was only 1 good thing about GRADE 3 it was that it does respond well to chemo (which you did basically mention above) but yet my doctor did not do Chemo first they I had a double Mastectomy thinking I was Stage 2B (recurrence from stage 0) and then they found it in liver/bone. Yet they went to Targeted therapy first? Based on what you mention above, and I have wondered this anyway but shouldn't they have went to chemo first?

    Nicole

  • anotherone
    anotherone Member Posts: 555
    edited September 2019

    nicole , I am in no way an expert. My thoughts for what it worth- I can see your doctors rationale. If less aggressive therapy works surely but steadily as it have chances to do in your case and no life threatening emergency than no need to deploy harmful one. I even pondered H&P only without chemo in my case where it is life threatening according to my oncologist ( sceptical about being so as I feel better now than during original ds and tests showed no progression in 2 months. If you look again at very clear Sauliis' explanation ( thank you for that , Saulius . Hope you do not mind me asking where you from as I am born and bread in eastern europeand the your name ring the bell of Baltic states.) Although yours is grade 3 ( many cells in division stage at any given time),they may take long to divide so chemo may not be as effective as it acts on a certain stage of that division and most of them may not be in that stage as it takes long to go from one stage to another and in any case once once one lot is wiped with one dose of chemo there may be no further recruitment for division for a while so other doses will be wasted ( or better sying doing more harm than good).

    Checked with you MO now that you have a bit more info as my understanding above may be wrong. Have you had any scans as yet since initial diagnosis ?

    Xx

  • bsandra
    bsandra Member Posts: 1,027
    edited September 2019

    Dear Nicole, Grade is a bit another thing than ki67: GRADE incorporates two factors, i.e. size and how different cells are from normal tissue cells (let's say the duct if it is IDC), and how fast they divide. I don't know the correlation between how different they look and how fast they divide but they for sure define grade under the microscope. Now Ki67 is a bit newer, I think... So, at least here in my country, anyone who gets ki67 > 14 % goes on chemo first, at least for stage I, II, III. Again, I am no specialist... btw, by "targeted" do you mean hormonal therapy (or some more modern inhibitors like Ibrance)? If it is stage IV and changes in liver/bone are still very small (1 mm lesions, for example), and MO hopes targeted therapy can help, then I think it is possible... but from my wives example, I know how fast changes happened in her liver. First they found 1 multiple things on MRI, and then in two weeks liver was almost full of 5-8 mm lesions, that were confirmed by biopsy, and her liver markers were rising every day... crazy. I am sure if not chemo, she would not be here... but then again, with low ki67, and low grade we wouldn't have had that situation...

  • bsandra
    bsandra Member Posts: 1,027
    edited September 2019

    1 mm multiple things on MRI, I meant...

  • nicolerod
    nicolerod Member Posts: 2,877
    edited September 2019

    Anotherone..yes I am sure they didn't want to jump to chemo because of what you said...I just kind of wonder if that would have helped just "get rid of them" then do the targeted therapy....

    Well I am thinking mine are big then... on PET scan in August here were the measurements..but it is in CM not MM:

    The size and intensity of the hypermetabolic liver metastases have decreased since prior examination. Representative measurments include a lesion in the anterior liver, which currently measures 1.7cm x 1.4cm, image 147, and previously measured 2.2 x 1.8cm, image 148. Currently, the standard uptake values range from 3.3 – 3.8, and previously measured 3.5 – 4.5. An additional example is an ill-defined low-attenuation lesion in the infrerior right lobe of the liver which currently measures 2.2 x 2.1 cm, image 173 and previously measured 2.7 x 2.3 cm, image 172. Currently the standard uptake values range from 3-3.4, and previously measured 4-4.9.


    I thought they said mine were small....

    Can anyone tell me what the uptake means?



  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    Nicole the Standard Uptake Value (SUV) is commonly seen with FDG PET scans and is a measurement of the metabolic activity of the cells, determine as a ratio of the radioactivity concentration in the tissue at a period of time. These are the areas that show as "hot spots" on a scan. An SUV above 2.0-2.5 is more likely to be malignant, but it's important to understand that areas of infection and inflammation can also have an elevated SUV so it has to be interpreted within context of what else might be going on in the body ( for example lymph nodes showing metabolic activity/elevated SUV could be due to infection in the body, it does not necessarily mean the cancer has spread to the nodes). A cancer that is not responding to treatment usually shows a pattern of increasing SUV, and after a successful treatment the SUV typically decreases, so the report for subsequent scans will comment on the SUV in relation to the SUV on the previous scan.