How are people with liver mets doing?

1384385387389390679

Comments

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited September 2019

    Grannax2, did your port infection get better?

  • anotherone
    anotherone Member Posts: 555
    edited September 2019

    Thank you for that , Frisky ! Easy cheap harmless and tasty - what can compare with it?! This morning during my good shopping I bought a massive ginger root - somehow my aversion to it has changed after diagnosis and I started using it more so thought I may as well buy a big chunk - now I know what I will do with it :)

    (tiptoeing out of the liver thread )

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

    Anotherone...it has to be the dried powder .....it's much richer in the compounds that kill cancer cells.

    I read someone's experience....he said to take enough ginger till you'remildly nauseated....that's how you know you're killing cancer cells.Repeat for four days and than take a 3 days break....can cook with it...heat brings out those compounds

  • DianeEliz
    DianeEliz Member Posts: 24
    edited September 2019

    I have a question for anyone who has gone down this path - I have liver mets and ibrance and xeloda haven't worked. I am going to Halaven next week. The scan showed the lesions are growing and suspected pelvic nodal involvement. I asked the doc about local treatment like y90 but was told it was probably not an option for me because of the nodal involvement. I changed to this health system because of their expertise but finding it hard to believe I wouldn't be a candidate for local ablation. Wondering if anyone got this and how they got there.

  • nbnotes
    nbnotes Member Posts: 338
    edited September 2019

    DianeEliz -- I'm not sure how extensive your nodal involvement is, but maybe check as to whether SBRT would be an option for you. I had a 6cm liver met with 3 lymph nodes nearby, and they did SBRT this past May. At my 3 month scan, those were completely gone, but the xeloda failed me and a couple of new lymph nodes & a small liver area popped up. We are in the process of doing SBRT for those spots now and then adding a new chemo.

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

    Sandi Beach. No, it's not healed yet. But, I am on another antibiotic. I think it might be a tiny bit better today. It's very noticeable because it's bright red.

    I was able to get chemo yesterday, my counts were up after having a week off. Then I slept all afternoon and night. Gemzar is the one causing the tiredness.

    Diane. I was a candidate for y90 even with other mets in lungs and lymph nodes. Lots of MOs still think y90 and other local TX are not appropriate for us. Go straight to an IR and let him tell you what his opinion is after he looks at your scans. 💞

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

    DianeEliz, come over and see us on the thread called “Halaven Day 1”. I just started Halaven myself.

  • DianeEliz
    DianeEliz Member Posts: 24
    edited September 2019

    Thanks Grannax2, ShetlandPony, and nbnotes! Don't know what I'd do without you women. And I will visit the Halaven thread too.

  • bbpie
    bbpie Member Posts: 28
    edited September 2019

    Ibrance and Letrozole combo failed me after only 4 cycles. My 3 month scans show progression to bone and liver mets. No surprise since I had slight progression with last scans and tumor markers continued to increase since January. Liver tumor increased 1.5 to 1.8 cm in all dimensions and covers most of right lobe

    I met with my MO today and I have three choices for my next line of treatment. Xeloda (2 weeks on, 1 week off), Doxil once a month or a clinical trial (starting with H3B). With my overall tumor load and size of liver tumor I want something proven to work. So clinical trial not for me and the fact there was a lot of extra work along with two additional liver biopsies within the first two cycles did not appeal to me. I knew from these boards that Xeloda worked for some, but a horrible response for others like Gumdoctor. I am going to choose Doxil.

    I will head over to the Doxil thread for more information. Any preplanning you all would recommend to prevent the hand foot syndrome? I've also read some polish their nails like in use with Taxol.

    Thanks for so much valuable insight and sharing your experiences. I have learned so much!

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

    bbpie....I’ve had three Doxil infusions so far and no SE to speak of. I was reassured by JFL and by my MO that it was relatively easy, and it’s true...so far it has been a very manageable treatment.

    The best part? The infusions are every 28 days....may you experience great benefits and may they last for a very long time....

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

    bbpie. Sounds like you made a wise decision, X didn't work for .net e either. My MO told me to take B6 for HF. I still take it because I'm still having trouble with my feet on Gem/Carb.

    Wishing the best for you Diane. Glad to help, anytime. Please keep us posted on how you are doing.💞

  • ann273
    ann273 Member Posts: 122
    edited September 2019

    Diane Eliz, I was one of those people who Ibrance failed very quickly. Can you check if you have a P13k mutation and that would open up PIQRAY and maybe even afinitor? I know afinitor is not everyone's favorite treatment but I was one of those lucky ones to have a very easy time on it after adjusting dosage and taking probiotics. It kept me in full remission for 3 and a half years.

  • s3k5
    s3k5 Member Posts: 411
    edited September 2019

    bbpie, others have already mentioned their experiences above but I just want to chime in here to add that after failing Ibrance, I was on Xeloda for less than 3 weeks when my hand-foot syndrome got worse. My MO immediately stopped it and suggested I go on Taxol. I get low dose Taxol every 2 weeks and one week off. I have been on Taxol since April2019. So far, the side effects have been manageable. My tumor markers dropped from 120 to 50 within the first 6 weeks, the liver mets are reducing in size and bone mets are stable. The only cumbersome thing is cooling scalp, hands and feet during the infusion. But I am getting used to it!

    I have no experience with Doxil but if that is also equally efficient with no SE, I'd definitely go with it. Good luck with whatever you choose! Hope the treatment works quickly in reducing your liver mets.

  • DianeEliz
    DianeEliz Member Posts: 24
    edited September 2019

    Ann273 - Unfortunately I did not test eligible for Piquray. I am glad you are having such success! I wondered a bit why we skipped Afinitor but I think they wanted Halaven to get out the "bigger guns" maybe? My last appt was a little more urgent than usually, I know they need to arrest the liver progression.

  • DianeEliz
    DianeEliz Member Posts: 24
    edited September 2019

    We took my daughter and her friend to Hersheypark. Proud that I lasted all 12 hours, feeling mighty beat up now. I am such a perfectionist and control freak, under the best of circumstances I am unforgiving of myself. I am learning how to go full on when I can, sit back when I can't. I still miss when I could control it all much, much better. Here is a pic of all of us in line for a rollercoaster. Eeeeek! But such a fun day

    image

  • cure-ious
    cure-ious Member Posts: 2,871
    edited September 2019

    An interesting difference between lobular and ductal breast cancers:

    Most DUCTAL breast cancers contain normal (not mutant) E-cadherin, a protein that controls how cells move and stick to each other.

    A new a paper in Nature this week shows that E-cadherin is required for metastasis of most ductal breast cancers. This new finding completely up-ends previous dogma, and will hopefully lead to trials with E-cadherin inhibitors:

    https://www.nature.com/articles/s41586-019-1526-3

    By contrast, 90% of lobular cancers (and many TNBCs) have mutant E-cadherin.

    This mutation should make these cells sensitive to Crizotinib, which as discussed above is being tested in the ROLO trial in the UK.

    Interestingly, Crizotinib inhibits c-Met, which is activated to turn on CDK2 when cells become resistant to Ibrance. Therefore Crizotinib with Ibrance-Faslodex is a potential combination for all types of MBC:

    https://www.ajmc.com/newsroom/palbociclib-and-criz...



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

    thanks for the explanation Cureious, do you have information on how the ROLO trial is going and when they will publish their findings? It would be great if they got jyggy with it....

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

    Cure-ious..thanks...that relates to this too right....?

    Drugs for breast and lung cancer 'should be used TOGETHER to treat a range of tumours': Combination is more effective than either medication given on its own, scientists discover

    Breast cancer drug palbociclib was used with lung cancer treatment crizotinib

    Duo therapy blocked cancer cell division and made them lose their 'power'

    It could be used to overcome resistance to treatment for breast cancer

    Crizotinib targets the protein that causes palbociclib resistance

    By ALEXANDRA THOMPSON SENIOR HEALTH REPORTER FOR MAILONLINE

    PUBLISHED: 19:01 EDT, 11 July 2019 | UPDATED: 22:19 EDT, 11 July 2019

    Two drugs that are used for breast and lung cancer could be combined to overcome tumour resistance in several types of the disease, new research suggests.

    A study found that breast-cancer medication palbociclib was boosted when combined with the lung-cancer treatment crizotinib.

    When tested on both cancer cells in the laboratory and mice with a range of malignant tumours, the duo was significantly more effective than the individual drugs.

    The combined treatment both blocked cell division and induced senescence, which occurs when a cell loses its 'power' to divide and grow.

    ADVERTISING

    While palbociclib has been described as one of the biggest treatment advances for advanced breast cancer in the past two decades, some tumours develop resistance to it.

    This is often driven by a protein that crizotinib targets, with the two drugs together helping to overcome cancer cell resistance.

    +1

    Two drugs that are used for breast and lung cancer could be combined to overcome tumour resistance in numerous forms of the disease, research suggests (stock)

    The research was carried out by The Institute of Cancer Research (ICR) in London and University College London's (UCL) Cancer Institute.

    It was co-led by Professor Paul Workman, chief executive of the ICR and Dr Sibylle Mittnacht, professor of molecular cancer biology at UCL.

    Professor Mittnacht said: 'Our evidence shows that existing medicines could be used to overcome resistance to treatment in a frequent form of breast cancer in women.

    'In addition, use of a current breast cancer medicine together with these other medicines could be a new, promising route for the treatment of lung and several other cancers.'

    Professor Workman added: 'Cancer's ability to adapt, evolve and become drug resistant is the biggest challenge we face in creating more effective treatments for the disease.

    'We have shown the potential of combining two precision medicines for breast and lung cancer together to create a two-pronged attack that strips cancer cells of their resistance.'

    Breast cancer affects one in eight women at some point in their lives in the UK and US, statistics show.

    When it comes to lung cancer, 47,235 cases were diagnosed between 2014 and 2016 in the UK, Cancer Research UK statistics show.

    And in the US, around 234,000 people were told they had lung cancer last year, according to the American Lung Association.

    Palbociclib is used to treat hormone receptor-positive breast cancer. These tumours come about as a direct result of the many hormone receptors on the surface of breast cells.

    In the case of oestrogen receptor-positive breast cancer, the cancerous cells receive growth signals from the hormone.

    Palbociclib blocks two proteins called CDK4 and CDK6, which promote tumour cell division and cancer progression.

    Tumours can become resistant to palbociclib by activating a molecule called CDK2, which drives cell division even if CDK4 and 6 are inactive.

    CDK2 is thought to do this via a signalling pathway that involves the molecules MET and FAK.

    Crizotinib has been shown to block MET.

    The researchers therefore speculated whether combining the two drugs could overcome CDK2's tumour-fueling mechanism.

    The treatment combination was tested in both cancer cells that were grown in the laboratory and human tumours that were transplanted into mice.

    These cancer types included everything from breast and lung to bowel.

    Results - published in the journal Oncogene - revealed the duo therapy worked together to both stop the cancer cells dividing and induce senescence.

    The combined treatment's effectiveness across a range of cancer types suggests palbociclib has potential beyond just breast forms of the disease.

    In a second part of the experiment, the researchers set out to uncover how palbociclib resistance comes about.

    Robotics and sophisticated imaging were used to identify how CDK2 is activated to allow rapidly-dividing cells to avoid CDK4 and 6 inhibitors.

    The researchers discovered MET and FAK are critical molecules in the signalling pathway used by tumours to survive and develop palbociclib resistance.

    Before the combined treatment can be used in patients, the safety and effectiveness of combining CDK4 and 6 inhibitors like palbociclib with MET inhibitors like crizotinib must be studied, the researchers said.

    If these studies are successful, it may be possible to develop laboratory tests that identify which patients would benefit from using crizotinib in this way, they added.

    And looking further into the future, CDK4 and 6 inhibitors could be combined with drugs that block FAK.

    FAK was shown to be critical in the activation of unwanted CDK2. Inhibitors against this molecule are already being tested in clinical trials.

    'We still need to do more work to understand the full potential of combination treatment to increase the effectiveness of these drugs,' Professor Workman said.

    'But the approach looks highly promising and has the potential to be effective against several cancer types.'

    Combining different drugs with varying modes of action is a central strategy of the ICR's research programme to combat cancers' ability to adapt, evolve and become drug resistant.

    The ICR is raising the final £15million ($18.6m) of a £75million ($93.2m) investment for a new Centre for Cancer Drug Discovery to house a world-first programme of 'anti-evolution' therapies.


    Someone posted that about a month ago...maybe it was you? I don't remember but I remembered that drug name Crizotinib when I saw your post.

  • ann273
    ann273 Member Posts: 122
    edited September 2019

    Sorry to hear that Diane Eliz. Maybe Afinitor + Hormone therapy can be considered once chemo stabilizes things for now?

    S3K5 - Does cold capping help to prevent hair loss effectively?

    Has anyone tried oraxol (oral version of taxol). Its in phase 3 trial (but mostly in South America only it seems) https://clinicaltrials.gov/ct2/show/NCT02594371. I wonder how that works with FDA approval. From all accounts Ive read the side effects are a LOT better than IV Taxol with better efficacy as well. I saw that someone on bco has been on it for 2 years with minimal side effects. Sounds like a better option than Xeloda to me..

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited September 2019

    DianeEliz, great photo of you and the girls. 12 hours is definitely an accomplishment. I bet you walked a ton. Hoping Halaven is tough on those liver mets!

  • Kattysmith
    Kattysmith Member Posts: 688
    edited September 2019

    So the CT-Guided liver biopsy on Thursday was supposed to be day 1 of Hell Week - what I was calling a full week of pre-trial qualifications leading into the actual treatment scheduled for 9/10- but it went badly. Instead of taking core samples from one liver tumor; they took several samples from two- which added up to a LOT of liver tissue. The IR doc told my husband not to worry, that I still had a lot of good liver tissue! I think the extra tumor sample was for an ancillary study I'd agreed to. When I was in recovery my blood pressure kept dropping, so they took me back to CT and discovered bleeding in my liver. They did an angiogram to seal up any areas. Then they sent me to ER where I developed the worst pain I've ever had 9-10. If I tried to roll on my back from a position on my right side, it felt literally like somone was stabbing me repeatedly in my left side. I was screaming bloody murder and the nurse told me to "breathe." They gave me morpihne which didn't help until they gave me more much later. They kept wanting me to roll onto my back, so they could get an accurate blood pressure and or put me on the bed pan. It was brutal. One of the nurses said the reason for the severe pain is that when blood fills the sac surrounding the liver, it doesn't lessen until the blood is reabsorbed. I was there for 24 hrs waiting for a room in the hospital. I had no appetite to put it mildly and had been fasting since Wed night and ate next to nothing for days. Once admitted, things got better, but my hemoglobin kept trending downward. They kept me hooked to a heart monitor and on morphine and antibiotics and Sat they gave me two units of blood.

    I was discharged Sunday, but it took all day to get out of there. Now I have to watch for shortness of breath, increased pain, fever over 101f.

    Today I withdrew my consent to enter this trial. I do not want any more invasive procedures on my liver and in addition to the weekly injections under sedation, it requires another biopsy at some point.

    NOPE.

    I'm going to check into some standard care chemo that I haven't tried and will be open to a trial that doesn't require more invasive procedures. At this point, I don't think Y90 would be a good idea, either.

    I am going to chill for the next few weeks and heal.

    Traumatized.

  • BevJen
    BevJen Member Posts: 2,341
    edited September 2019

    Ohmigosh, Kattysmith. This sounds like a complete nightmare all around! You are right to just heal some now -- no question about it!

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

    wow Katty I am so so sorry for all that you had to go through that is just awful. I pray you heal quickly with no complications. (((Hugs))))

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

    Kattysmith, I feel your pain. Your vivid description of the fkdup liver biopsy and resulting suffering and stress is what I fear most about cancer care.

    I'm so sorry you went through all of that. I too have decided to not proceed with Y90....I just don't think our doctors are that talented...except for Travis Van Meter...I would trust him because of Grannax's positive experience.

    May your next treatment be painless and effective!

    sending you a big hug


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

    Katty, your experience sounds awful and traumatizing. Bleeding is the key risk with any liver biopsy. My DH (who is a surgeon) freaks out every time I get a biopsy due to that risk. So sorry you had to deal with this and glad you are on the up and up.

  • cure-ious
    cure-ious Member Posts: 2,871
    edited September 2019

    Kattysmith, I hope they get some useful information from those biopsies, I've never heard of these complications but have read of an awful lot of screw ups in terms of amounts and what they do with biopsy material, hope you heal quickly!!!

  • cure-ious
    cure-ious Member Posts: 2,871
    edited September 2019

    Nicole- Yep, the Crizotinib is a tyrosine kinase inhibitor, and the lab studies indicate that it could be added to I-F upon progression for ER-positive ductal MBC, but for lobular cancers it would be working in two different ways, first to kill the E-cadherin mutant cells, and second to get rid of Ibrance-resistant cells.

    I don;t see any trials for MBC with Crizotinib, but keep checking with Memorial Sloan Kettering, UCSF, UCLA, MD Anderson; these places are often first to offer specific trials

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

    Dear Katty, my heart goes out to you. Scary stuff. I would be traumatized, too. Morphine does not work for me either. It's frustrating when the procedures are almost as life threatening as the cancer. There's something wrong with this picture. I'm so glad you are home and withdrew from the trial.

    I do wish my Dr. Van Meter could be everyone's IR. 💞

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

    Hi Can you all help me.

    Today was appointment with my new MO. We talking about so much stuff. In between it I mentioned that I have been having a little pain in my liver or what I believe is my liver because its the area that was sore after my biopsy months ago. It's a fleeting pain like a soreness it is not constant and doesn't last long. She didn't say anything about it. However I just went on the portal and saw my

    Bilirubin is high? it's 1.5 (the range Max is 1.3)

    AST 26 range is 0-50

    ALT 19 range is 0-50

    ALK POS 43 range is 0-120

    Also my WBC is usually a little low but on today it says

    WBC low

    RBC 3.83 (the bottom of the range is 3.85)

    I am concerned that maybe the Ibrance is not working now? I have been off it for 12 days due to the mouth sores. I am suppose to resume it end of this week. I would say I have been having this pain for about a week maybe 2. Today I had the pain and yesterday I had it too and the day prior. Last week it was like once or twice a day every few days. I just feel like could the tumors be growing and that is why I am feeling the pain and why the RBC is low and the bilirubin high?

    Should I send her a message in the portal if so what should I say should I be concerned about this?

    TIA for any help.

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

    Nicole- I too have had episodes of "soreness" in the liver area. Right side, under breast, and under rib cage. I have had this all along (2 years now). Comes and goes. I have mentioned to my onc before. She doesn't seemed too concerned. Once she said something about scar tissue from the large liver met (8cm at first but shrunk to 2 cm now). My liver enzymes on monthly labs are within normal levels. My RBC low at 3.78 last lab test and runs like that all the time. I thought the low RBC was from the Ibrance use. You definitely could message her with your concerns. That is what she is there for. Maybe others will chime in with the liver pain concerns.