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Comments

  • susaninsf
    susaninsf Member Posts: 1,099
    edited July 2022

    s3k5,

    Can you share with us what anti-androgen therapy you are on? I thought that anti-androgen treatments were deemed ineffective but that, surprisingly, androgen agonists (i.e., stimulators) like Enobosarm are promising.

    Hugs, Susan

  • chicagoan
    chicagoan Member Posts: 1,056
    edited July 2022

    Here's another obituary that tells a little bit more about BevJen's remarkable life. https://www.tributearchive.com/obituaries/25365197...

    May she rest in peace.

  • candy-678
    candy-678 Member Posts: 4,171
    edited July 2022

    BevJen----May you Rest in Peace

    Nicole-- Glad you are doing well after your ablation.

  • rk2020
    rk2020 Member Posts: 697
    edited July 2022

    What an amazing life our beloved BevJen had. May she Rest In Peace.

    NicoleRod - I’m glad to hear your ablation went well.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited July 2022

    Nicole,

    So happy for you! Have you heard from AlabamaDee?


  • susaninsf
    susaninsf Member Posts: 1,099
    edited July 2022

    chicagoan,

    Thanks for sharing the link about BevJen. So nice to see that she lived such a full life.

  • divinemrsm
    divinemrsm Member Posts: 6,614
    edited July 2022

    Pirategirl and Chicagoan, I appreciate that you posted the obituary for BevJen. She dealt with bc for 20 years! I am heartbroken about her passing and so close to ShetlandPony’s passing. It’s a gut punch. And it gets all lumped in with the bungled forum change which has made it harder to keep track of members.

    As you said, Susan, BevJen did live a full life and that is something to be grateful for. Still, the loss is hard.

    My condolences to her family and loved ones.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,273
    edited July 2022

    I echo divine’s post. Even after the decade plus that divine and I have been here, losing members is always painful. One gets used to many things in life but not this, never this.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2022

    Susan..SO IRONIC you asked about Alabama Dee she just messaged me today and asked me to post this here for her:

    I have had a very rough go with repeated UTIs, weight/muscle loss, abdominal pain and other SE. In palliative care and PT.

    I'm currently on 3rd cycle of Navelbine. Scan on Aug 10. Trodelvy is approved by insurance and will be next if progression. Not much in my bucket after that.

    I have my good moments and look forward to special events with kids and grandkids. Learning how to "just be" since there is not much I can do. Hubby is a fantastic caregiver but he is getting burnt out. Living each day for the gift it is.

    Thanks,
    Dee


  • sondraf
    sondraf Member Posts: 1,684
    edited July 2022

    Nicole - thanks for posting that message, so glad to hear Dee is still trucking!

    As for Pony and Bev, I was going through my PMs last night and noticed I had exchanges with both of them last summer about this time. How fast time flies and how fast this disease can take you. Thank you for posting the obit for Bev, she sounded just like the wonderful person she was on here.

  • cure-ious
    cure-ious Member Posts: 2,891
    edited July 2022

    Miss you, Dee!!!! Hope you find a treatment that works!!!

  • moth
    moth Member Posts: 3,293
    edited August 2022

    Hello friends, still have mets inside the liver and the liver failing all over.

    Still here though 😊🤞

    I'm quite weak. Blood work on Wed and we hope the liver is healing for chemo on Thursday.

    I'm confused from the the big liver damages affecting my brain but I can try to pm here, IG, Tumblr or email 🤗 sending you all the best

  • candy-678
    candy-678 Member Posts: 4,171
    edited August 2022

    Thinking of you Moth. Post updates when you can. Hugs.

  • rk2020
    rk2020 Member Posts: 697
    edited August 2022

    Moth -Sending good vibes and prayers for courage, strength and comfort. I’m rooting for the best possible outcome. Hugs.

  • elderberry
    elderberry Member Posts: 1,068
    edited August 2022

    moth: so good to see your post. Hope your bloodwork is good for you to continue with chemo.

  • bsandra
    bsandra Member Posts: 1,030
    edited August 2022

    Dear Moth, we are with all our hearts and prayers with you! You are an inspiration to so many of us here... Who if not us all will believe that you can do it?

    I just came back from short holidays, and... so much sorrow here. Sometimes I think it is so sad that we get to know each other only from obituaries:/ So many beautiful people, with whom we talk every day but don't know how amazing and accomplished they are. Sad.

    Saulius

  • susaninsf
    susaninsf Member Posts: 1,099
    edited August 2022

    Thanks, Nicole, for sharing the update from AlabamaDee! So wonderful to hear that she is still alive and still has treatment options. I wish she would rejoin the board here. Please tell her that we miss her!

    Hugs, Susan

  • weninwi
    weninwi Member Posts: 782
    edited August 2022

    nicolerod,

    I was interested to see that you received ablation treatment. I asked about this treatment option recently for a new liver lesion and was told it was not an option for me as it is usually used only to debulk a large tumor that is causing a blockage and has limited effect on survival. Seeing your post makes we wonder about that explanation. Were you offered this treatment or did you have to request/advocate for it? What explanations and expectations were you given? Thank you.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited August 2022

    For those of you who do not visit Mel’s living room thread, I’m sad to say that Moth posted that she has stopped treatment. I’m devastated as I so hoped that they could turn things around. 😔 Hopefully she will be able to post again soon but I wanted her friends on this thread to know….

  • bsandra
    bsandra Member Posts: 1,030
    edited August 2022

    Dear Sadies, thank you for letting us know. Very sad news. Too many sad news lately:/ But we never can loose hope, we simply cannot.

    Saulius

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2022

    Wen.... I have had Cryoblation in liver back in 2019 and then Y90 in 2020 and 2021..the one from 2021 we only did a half dose so the 1 tumor didn't fully die...and it kept growing it was causing me some uncomfortable -ness in the capsule of the liver so I asked to have it treated. But I have had my IR for over 2 years now so we know eachother and she knows my oncologist so they talk and I talk to them...So i asked for it to be done. I don't know how many tumors you have in liver but I believe if there are a lot they wont really advocate to do stuff bc just killing 1 or 2 really wont make a difference (or thats what they usually think) unless (like you said) its in a duct or causing a blockage and pain. The ablation went well It was over a week ago now I am feeling a bit of fatigue.

    So sorry to hear about Moth I messaged her on IG today.


  • susaninsf
    susaninsf Member Posts: 1,099
    edited August 2022

    Oh no! I hope Moth will be able to find peace.

    - Susan

  • B-A-P
    B-A-P Member Posts: 409
    edited August 2022

    well guys sad to say my Pet wasn’t what we’d hoped. Ibrance has failed already so I’m going back on chemo until and if a PARP inhibitor is approved by my insurance. Right now I’m Canada there is limited access and usually for ovarian cancer. I’ve developed 17 new bone Mets along my spine and hips in three short months and my liver, while they can’t see a mass , the uptake was higher this time around so they fear it’s brewing. Chemo almost killed me last year so send all the good vibes. Will be restarting zometa once I get in to see the dentist. Sigh

    I just need this to work. Hoping I don’t lose my hair again. Apparently people on havalen usually experience thinning rather than complete loss. But that’s just what they say. We will see where I fall I guess

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited August 2022

    B-A-P, I’m sorry to hear that Ibrance has failed. I understand the challenges of trying to find a treatment that sticks given my last year. If it helps, I was on Halaven and while it didn’t work for me, I had no hair loss that I noticed. Hope it beats back the Mets with minimal side effects.

  • bsandra
    bsandra Member Posts: 1,030
    edited August 2022

    Dear BAP, I am sorry there's suspicion that Ibrance failed. It is just crazy how well you did on it in the beginning, and how short did it work.What chemo do you think will be introduced/reintroduced? As for PARP inhibitor, I just hope it gets approved by your insurance but also wanted to ask if you have BRCA1/2 mutations? Hugs,

    Saulius

  • B-A-P
    B-A-P Member Posts: 409
    edited August 2022

    Thanks SS. Hoping it works.

    Salius, I am brca2 positive. Hoping treatment works in the meantime while I wait cause it seems to be going through the bones fast. I had high hopes for ibrance bc it did work so well but I got less than a year on it. I feel like if it worked the way it should, we wouldn’t see such fast progression. Sigh

  • d37
    d37 Member Posts: 73
    edited August 2022

    BAP, I’m so sorry to hear of your progression. I hope your insurance approves your treatment soon and it works for you. You are in my thoughts and prayers. Denise

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2022

    BAP so sorry for your progression...and sorry to say you will probably need to shave off your hair unless you have immensly THICK THICK LOTS of hair it will be so sparce it will look better shaved... it will grow in but sparce..I was in the halaven group on FB and everyone that tried to keep their hair...to be honest...it looked bad..... I hope for the best for you...but you should prepare for the worst...


  • B-A-P
    B-A-P Member Posts: 409
    edited August 2022

    Nicole ,

    I have super thick hair but don’t worry I’ll know my limit and shave it if it’s looking sparse. I rather be bald than look funny. I honestly think it’s just gonna depend. They told me 35-45% will lose or have thinning so I’ll see where I land and do what I must.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited August 2022

    BAP,

    So sorry about your progression.

    There's a woman in my support group who had a fantastic response to Lynparza. Is that the PARP inhibitor your MO is trying to get approval for?

    Hugs, Susan

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