How are people with liver mets doing?

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  • lucia42
    lucia42 Member Posts: 45
    edited September 2018

    Thought this sounded interesting

    https://nationalpost.com/news/canadian-lab-takes-a...


    Canadian lab takes a shot at producing cancer-killing treatment dubbed the 'rarest drug on Earth'

    Actinium-225 has shown promise as an actual radioactive medicine that can kill cancer cells — and only cancer cells — by delivering an intense but hyper-local blast of energy

    Canada's particle physics laboratory TRIUMF is making a push to be a future world leader in the production of a special radioactive isotope nicknamed the "rarest drug on Earth," which can deliver devastating amounts of energy to single cancer cells, without harming nearby tissue.

    Most nuclear isotopes in medicine are used for diagnosis, by allowing scanning technology to see certain aspects of organs, bones, blood flow, and tumours. But Actinium-225 has shown promise in experimental uses on late stage cancer patients as an actual radioactive medicine that can kill cancer cells — and only cancer cells — by delivering an intense but hyper-local blast of energy.

    The problem, as researchers at Vancouver-based TRIUMF put it, is that Actinium-225 is the "rarest drug on earth," produced only as a by-product of nuclear weapons production, or in tiny amounts in TRIUMF's own laboratory. Each year, the entire world only makes an amount equal to the weight of a few grains of sand.

    To illustrate its promise, they point to the successful treatment of a German man in his 70s identified only as Peter, whose metastatic prostate cancer appears to have been sent into complete remission after being treated.

    The idea is that a particle of Actinium-225 can be bound to a particle of a drug that selectively attaches only to cancer cells. When that happens, a sort of trigger prompts the Actinium-225 particle to decay in a cascade of "daughter" and "grand-daughter" isotopes. As it does, it releases a burst of energy that Paul Schaffer, TRIUMF's associate lab director for life sciences, compared to firing a cannonball into a pool.

    "Basically you're taking a heavy particle from radioactive decay and shooting it into the cell," he said.

    That puts a lot of energy into a very small space. A particle passes through the cell, doing damage as it does so, but because its energy is expended so quickly, it only gets through one, two, maybe four cells before it dissipates. DNA and other critical parts of the cell are destroyed.

    The strategy is unproven and largely untested, and it has only been used as a last-ditch effort in places such as Germany, where experimental treatments like this are allowed. But slowly, medicine is building up anecdotal evidence from Actinium's use against leukemia and prostate cancer, with likely similar applications for pancreatic, colorectal and breast cancer.

    "I can't overstate how much I get excited when I talk about it. It sends a chill down my spine, to be honest with you," said Schaffer.

    The problem is the production process and its reliance on nuclear weapons waste. Schaffer's project is to find another way to make it.

    The solution has been to use the element thorium, make it into a disk, then put it at the end of a high energy particle beam, and then slam protons into it. That causes a cascading shower of smaller elements, one of which is Actinium-225.

    Schaffer is a chemist, and therefore accustomed to taking stable compounds out of fridges and combining them in glassware. Now, in the nuclear world, by "moving beyond the bottles" to proton accelerators, he is "transmuting" one element into another by smashing particles together.

    He calls this nuclear chemistry a kind of modern "alchemy," and though he means it as a metaphor, he works with equipment that literally can turn lead into gold (though not in economically viable quantities).

    For Actinium, the plan and hope is to partner with the reactor at Chalk River, Ont., with the goal of building a production line that could contribute perhaps a couple of kilograms of Actinium-225 per day, enough to make a serious play at the potential global market.

    "We wouldn't need a new accelerator. That's the beautiful part of all this," Schaffer said.









  • Tennille76
    Tennille76 Member Posts: 79
    edited September 2018

    Has anyone here had a significant increase in tumour markers after radiation?



  • Grannax2
    Grannax2 Member Posts: 2,387
    edited September 2018

    As you know, I'm on a fascinating vacation on the Eastern Shore of Maryland. We're staying on Kent Island, in the middle of the bay. I'm not in Texas anymore for sure. Ha

    I've been reading but not posting everyday.

    In regard to my scare this month, being on vacation has definitely cleared my brain. Now, my decision seems so simple, where as before ,it seemed complicated. I feel completely at peace with my decision to stay on Ibrance. I think my new "liver met" was not a met at all.

    As usual, for all of us, it does feel like I'm playing with fire. Well, if a real fire does show up, then I'll have it burned with rads or doused with a different TX.

    I'm thankful there's more than one way to attack.

  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited September 2018

    Grannax, I can't imagine how difficult it has been with the conflicting reports, but am glad you are at peace with your decision. It's probably what I would have done too. Keeping you in my prayers, hoping you have a wonderful vacation!

  • JFL
    JFL Member Posts: 1,373
    edited September 2018

    Grannax, sounds wonderful! Glad you are enjoying yourself and clearing your head and glad your has become crystal clear. It is kind of hard to argue with an MRI which is the most sensitive scan of the usual suspects - PET, CT and MRI. I think you are making a good choice.

    Lucia, the “rarest drug on earth" sounds very promising. My only dread when I hear its nickname is that rare = heinously expensive, even for a cancer drug. Let's hope this research leads to good things.

    Tennille, I haven't had traditional radiation but one of my tumor markers increased after radioemolization to liver.

  • Scwilly
    Scwilly Member Posts: 232
    edited September 2018

    Thinking of PrincessPincushion, who is in all our thoughts.

    I myself had a Pet scan last Friday and sadly it shows growth in liver spots and a lymph node by stomach/lungs which we have been watching now showing activity. So moving off Carboplatin and on to Abraxane.

    I'm off to Europe for a two week trip at the end of September to Bristol, UK - where my family and friends are and where we moved from in 2010. Also got a long weekend in Amsterdam - as my DH has a conference there.

    Just had my blood tests done and my liver markers are very slightly raised but two still range. For me, most importantly, my Bilirubin is still only just above top range. (1.3 vs 1), and my blood markers similarly slightly lowered but hanging on.

    Onwards, and Onwards (want to say upwards but this journey sometimes feels to me to be a one way slow route down spiral stairs with lots and lots of platforms where I linger for a while :(

    Feeling not too bad - perhaps I'm getting used to the roller coaster life of a Metzer!

    Wishing everyone well. Sorry I don't post much in support but I do think of you all the time.

    Sarah

    Hug

  • hartrish
    hartrish Member Posts: 290
    edited September 2018

    scwilly: sorry about your news. I hope you have a wonderful trip and enjoy visiting with your family. Prayers and hugs your way.

    Praying abraxane is successful as a treatment for you.

  • Daniel86
    Daniel86 Member Posts: 207
    edited September 2018

    Sorry about the progression Sarah! Hope Abraxane will treat you well.

    Also, have a good trip to Europe.

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited September 2018

    Hello, ladies. I don't know protocol here so I'm sorry if I'm breaking some rules.

    This is PrincessPincushion's husband, Tristaan the Ogre, posting on her behalf.

    We took her to the ER again today and it was determined at this time, with her white cell count, platlet count, bilirubin, AST, ALT, and all sorts of other combinations of letters are at a point where there is nothing more that human medicine can do at this time.

    She has been enrolled in hospice care at the hospital and we are leaning heavily on our faith as we wait for when she goes home. We firmly believe it won't be "good-bye" but "see ya later".

    I'm so sorry to be the bearer of this news. You ladies have been a wonderful support for her these years. Thank you so much.

    Blessings to you all.

    Tristaan

  • JFL
    JFL Member Posts: 1,373
    edited September 2018

    Tristaan, thank you for your post. I and many others have had PrincessPincushion in our thoughts and have been worried about her. I am devastated to hear the news but agree with you that this is not goodbye but see ya later. I will be praying for Princess, you and the rest of your family during this difficult time. Blessings to you too.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited September 2018

    in my prayers Tristin. Thank you for sharing. It is see you later but that doesn’t make it any easier. Lots of love to you, princess, and your family.

  • Scwilly
    Scwilly Member Posts: 232
    edited September 2018

    Tristaan

    No rules broken. I am so sorry to hear this news. Your wife has so brave posting here about her journey with metastatic breast cancer. We have all been thinking of her. I wiil keep her, you and all your family in my heart. Whilst medicine is fantastic, sometimes it cannot bring the solution to this ferocious and persistent desease. That it cant help PrincessP is something I truely regret.

    With love and support.

    Sarah


  • Scwilly
    Scwilly Member Posts: 232
    edited September 2018

    Thankyou Hartrish and Daniel for your thoughts and best wishes for me. This site, and this thread in particular, is a comforting home for me.

  • Daniel86
    Daniel86 Member Posts: 207
    edited September 2018

    Tristaan,

    I am really sorry about your wife. My heart goes out to you and your family.

    Daniel

  • Minnie31
    Minnie31 Member Posts: 494
    edited September 2018

    Tristan, thanks for letting us know. Hope it is see ya later. Sending lots of love and support

  • Raven4
    Raven4 Member Posts: 92
    edited September 2018

    Hi Girls,


    I wanna hear from those of you who have taken Xeloda. I am finishing my first week today. i am on week on and week off. I have had some lower back pain about 4-5 on the pan scale, took advil 200mg morning and evening for it. which took the edge off blood work ANC normal. But last night I had chest pain. felt like it was right in the middle of my chest. I took a codine tablet (just codine ) no tylenol and managed to sleep. I am wondering are these side effects or should I go to the cancer unit and have them look me over. I am also on Navelbine. every 2 weeks. I am having a CT scan next thursday and seeing my onc on monday october 1.

    How long will I been on this chemo it´s been non stop since may 30, 2018.


    Need advice,

    Raven

  • Kattysmith
    Kattysmith Member Posts: 688
    edited September 2018

    Dear Tristaan,

    My heart goes out to you and that lovely girl you married. I'm wishing you all of the peace and comfort and lovingkindness that can be found on this hard road. May she pass peacefully. I'm so sorry.

    Katty

  • candy-678
    candy-678 Member Posts: 4,166
    edited September 2018

    PrincessPincushion/Tristan-

    You are in my thoughts and prayers as I am reading your post and crying as I type this.  Yes, it is "see ya later".  And I will get to meet her when I move to my eternal home also.  We can laugh and joke how we met on this site.  Remember Psalm 23.  I love that she posted this on her profile.        See ya later. 


  • 50sgirl
    50sgirl Member Posts: 2,071
    edited September 2018

    Tristaan, I am so sorry to hear the news about your lovely wife. It must have been so difficult to type your message for us. Thank you for taking the time to keep us informed.

    This disease has no mercy, and it is painful to see how it has affected so many people here. Your wife has a special spirit within her that always comes across in her posts. I will keep her (and you) in my thoughts.

    I pray for peace and comfort for all of you as you wife enters hospice. May God hold your wife in his loving arms as he gets ready to welcome her into His kingdom.

    Hugs and prayers from, Lynne


  • Grannax2
    Grannax2 Member Posts: 2,387
    edited September 2018

    imageThis sunset is for PP. We all face a sunset of our lives here on earth. It's not goodbye.

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited September 2018

    Tristaan, thank you for writing to us. My prayers are for calm and comfort for her and all of your family.

  • blainejennifer
    blainejennifer Member Posts: 441
    edited September 2018

    Dear Princess Pincushion and Tristan,

    Nothing about this is fair. Here's to seeing you on the other side.

    Jennifer

  • blainejennifer
    blainejennifer Member Posts: 441
    edited September 2018

    Raven,

    There's an outside chance it's the Navelbine giving you some sincere acid reflux. It is notorious for causing digestive upset.

    Hoping you are feeling better now,

    Jennifer

  • Lynne
    Lynne Member Posts: 368
    edited September 2018

    Tristaan-I'm so sorry for you and your family. Thank you for letting us know. I pray that she is comfortable and at peace. Hugs and prayers to you and your family.

    Sarah-So sorry that you have to change treatments. I hope the next one helps, and the side effects are few. Enjoy your vacation. It sounds wonderful!

    Grannax-I'm glad you are enjoying your vacation and have made your decision on treatment. Beautiful picture!

    Raven-The only side effect that I had on Xeloda was the peeling of my hands and feet. I would call your oncologist.

    Hugs to all.

    Lynne

  • daywalker
    daywalker Member Posts: 77
    edited September 2018

    Dear Tristaan, I am so sorry for this hard hard journey you are walking with your beloved. I pray that you will know the peace that 'transcends all understanding', as Jesus said 'My peace I give you, not as the world gives, but my peace I give you'..Lots of love

  • bigbhome
    bigbhome Member Posts: 721
    edited September 2018

    Princess/Tristaan,

    Thank you so much for updating us during this difficult time. My heart is heavy hearing the news, but I know that God is holding you close. I am praying that hospice takes gentle care of Princess as she transitions to her eternal life, and I am praying for you and your family during this difficult time.

    Please know that you are welcome here anytime. We will be lifting you and your family in our prayers everyday.

    Hugs and prayers,

    Claudia

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited September 2018

    On September 20th, 2018, at about 3:30 PM, my sweet princess, who was most certainly my queen, went home to Jesus.

    Tristaan the Ogre

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited September 2018

    Tristaan, Words cannot express the sorrow I feel for your loss. I know that nothing can ease your pain right now. Your queen is at peace now. You shared life with a special person, and you will see her again. I am lifting you up in prayer. I hope you can find comfort in the wonderful memories and love that will remain in your heart.

    We were blessed to have had her in our lives here,however briefly. She will be missed.

    Hugs and prayers from, Lynne


  • bella2013
    bella2013 Member Posts: 370
    edited September 2018

    Tristaan, my heart is breaking for you and your family. I am praying for comfort and peace. Princess was a precious sister in Christ. It helps to know she is with her Savior.

    In His name,

    Barbara


  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited September 2018

    Tristan, I'm so sorry for your loss. Will be praying for you and your family.