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Comments

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

    I’m saddened to hear about Bev. She’s always been a beacon of hope and information around here. Crazy how fast things change.

    Nicole, my bilirubin fluctuates a lot and it’s never been Mets except when I was in failure last year and had a recurrence. In may my Bili was 62 (this is in Canada which is why the values are different) with the upper limit of normal being 20.5. Everyday it was going up when I was hospitalized in May. They had no idea why. My latest blood work showed it went down to 25. BUT my other enzymes are up which they are a bit concerned about. I see my GI to discuss next week though I doubt we will get far. No one ever has answers for me.

    The way I understand cirrhosis is that once you take away the cause , it should stop progressing. Mine just keeps progressing regardless of what I do. I don’t get it. And no one will work hard enough to find out why.

    My pet scan is on the 25th. Hoping for stability


  • bsandra
    bsandra Member Posts: 1,037
    edited July 2022

    Dear BAP, so gald to hear from you! Hey, holding fists for your PET but it will be good! I am awfully disappointed by your team not finding chirrosis solution:/ I completely agree with you (and science says) that if you find reason, you can halt it. Your reaction to drugs has been so good and all this chirrosis thing:/ Ehh.

    News about Bev totally killed me:/ She is so "me"... and so kind, and so wise, and so professional... I know we all think of the worst but I still believe God has good outcome for her. We all deserve this... like radical remission or smth... I talk like a mad man but... not our BevJen, no:////

    Saulius

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

    thanks for the confidence Salius. i spoke to the Locum today since my oncologist is on sabbatical and she told me the CT I had of my chest last week to check for a PE due to my travels , showed spots on my ribs that might be healing. But apparently they were there at my last pet in April and was never reported bc they were too small to be detected. When she looked at the scan with the radiologist, they did see teeny tiny Mets. Apparently they are still tiny and appear to be healing. So I guess we will see what the latest pet says. Hopefully they are dead and not fdg avid.
    I also have extreme itching in my legs from the liver enzymes being elevated. It’s so annoying. My legs are cut up from my nails. But she prescribed something to hopefully help. I just don’t get it. Something is causing the elevation and cirrhosis. I wish they could figure out what.

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

    BAP that is how my arms use to get my "bites" as I called them ughhhh SOOOOO FREAKIN ITCHY!!!!

  • bsandra
    bsandra Member Posts: 1,037
    edited July 2022

    Dear BAP, I do believe your next scan will be encouraging. Your liver problems are hard to tackle, and your MO being absent does not help:/ I know you do so much to turn things around and hope you and your team will find the reason. Best is as soon as possible.

    Dear Nicole, when BAP wrote about iching I directly thought of you. Can you both be having simmilar rare reaction to elevated liver numbers?

    Saulius

  • nkb
    nkb Member Posts: 1,561
    edited July 2022

    I am heartbroken to share the news that Shetland Pony passed away on July 16. I will post this on a few other sites she was known on.

  • rk2020
    rk2020 Member Posts: 697
    edited July 2022

    Thank you NKB for sharing the sad news about ShetlandPony. May she Rest In Peace.

  • candy-678
    candy-678 Member Posts: 4,176
    edited July 2022

    ShetlandPony-- May you rest in peace.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited July 2022

    Hello everyone. I'm posting this on moth's recent forums.

    Moth announced on Twitter that she posted a detailed update on her Tumblr blog (in her signature). Unlike IG, you don't need an account to read it. Essentially, she's still hoping the treatment will work, but her liver is a big problem.

    https://www.tumblr.com/blog/view/nevertellmetheodds2017/690346753584676864?source=share

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

    Yes i have Moth on IG...she posted today that her liver is not good. I am so sorry to hear about SP.....

  • bsandra
    bsandra Member Posts: 1,037
    edited July 2022

    Oh no, our dear Shetland... we had so many beautiful discussions together... I will miss her so much:/ RIP..

    Dear Moth, if you hear us, we are by your side, with prayers and hopes. Sorry that I and Sandra can do not much. Big embraces,

    Saulius

  • s3k5
    s3k5 Member Posts: 411
    edited July 2022

    So sad to hear about Shetland. She was such an active person on these forums.

    Bev and I had exchanged a lot of private messages. In Oct2020, both of us had microwave ablation to the liver. Since then, I don't think she has recovered. I hope her days in future are pain free.

    It is so sad to see so many of our friends passing away.

  • s3k5
    s3k5 Member Posts: 411
    edited July 2022

    For those of you who were on anti-androgen therapy, did your tumor markers rise while taking it? I started Enzalutamide (Xtandi) two months ago. Today my CA 15-3 increased from 580 to 1854, CEA and CA-25 also increased but not that drastically. Is this due to anti-androgen therapy or should I be concerned that the liver mets have gone haywire? I just need to know the correlation of anti-androgen therapy to tumor markers if anyone has seen this during your time on treatment.

    By the way I have extensive bone mets in the spine and liver mets that kept progressing on all chemo. My blood counts (WBC, Platelets) were dropping so my MO decided to give me a chemo break so that my bone marrow would recover, hence I am on anti-androgen therapy (my kids are not happy about it).

    Thank you for your support and as always this forum is a great resource of knowledge!

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

    s3k5: I am sorry to tell you that BevJen passed away a few weeks ago. I can't recall the date. We seem to be losing so many in such a sort time.

  • nkb
    nkb Member Posts: 1,561
    edited July 2022

    Oh no!! No BevJen, I am quite heartbroken.

  • cure-ious
    cure-ious Member Posts: 2,926
    edited July 2022

    Arrgh!!! Horrible news, BevJen and Shetland Pony both!!! We have to get more strong options open so much faster, this is so, so sad...

  • moderators
    moderators Posts: 8,740
    edited July 2022

    Oh no! We are devastated to hear of the terrible news! Our thoughts and prayers are with friends and family, including the BCO family of BevJen and SP. Together we are stronger!

    -The ModsMedicating

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

    I’m so sad to hear about BevJen. On July 13th Nicole let us know that they stopped treatment but I hadn’t realized she passed. So sad…

  • candy-678
    candy-678 Member Posts: 4,176
    edited July 2022

    So sad about BevJen.

    So many losses on here. I know this is a Stage 4 forum, but in the "real" world are we losing MBC patients this fast?! Seems our percentages are above the norm for losses.

    Scary.

    BevJen Rest in Peace.

  • s3k5
    s3k5 Member Posts: 411
    edited July 2022

    Oh, no! Not BevJen too! As someone said she had just stopped treatments and we are hearing she passed? This is so quick. Hope she wasn't in a lot of pain. RIP BevJen.

    Elderberry thanks for the news even though it is a sad one.

  • anotherone
    anotherone Member Posts: 555
    edited July 2022

    I think it is relatively good - shetland managed about 6 years since ds and bev a few years as well - I think you just forget how long we have been in it , candy !

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

    Hi. I may have misspoken about BevJen. She appears to still with us, but in hospital and stopping all treatment. That was as of July 13. If anyone has the REAL news, please let us know. I am sorry for any upset I caused.

  • candy-678
    candy-678 Member Posts: 4,176
    edited July 2022

    Elderberry- Do we have any more news about her? Last I knew she was going to start Enhertu. Where was her progression? Another Thread said she had an eye issue and they thought she had new brain mets.

    Does anyone know how to get a message to her or her family and get us an update?

    Anotherone- Maybe you are right. I have been MBC for 5 years now. Time flies. I am only on my 2nd line of therapy, but I do wonder how long I will last, with the median survival times. I wonder if when things turn for me, they will turn fast.

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

    Candy, it was Nicole who spoke to BevJen’s husband on July 13th. He let her know that she had progression to the brain, ascites, was very confused and they were stopping treatment.That’s the last post I have seen with a status update. Nicole might be able to provide more information but I noticed she hasn’t logged in for a few days.

  • candy-678
    candy-678 Member Posts: 4,176
    edited July 2022

    Sadies- Thanks. I will PM Nicole and see if she will answer when she next checks in. Maybe she will have an update.

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

    Ummm...Elder were you in touch with Bev's husband? I don't know of her passing...her husband told me a few weeks ago she stopped treatment but that was it.

    I had ablation yesterday (my first time) to my 1 alive remaining liver tumor. Went well very very tired today.


  • Rosie24
    Rosie24 Member Posts: 1,026
    edited July 2022

    Nicole, I’m so glad to hear your ablation went well. And I hope the work lasts a long time.


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

    Hi to all: Again, I must apologize and fall on my sword for misspeaking. I misread another post and thought perhaps, some had missed it. No one missed anything. It is all on me. I am so sorry to have caused people on BCO grief and pain. I hope she is comfortable, not in pain and feeling at peace.

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

    Elder don't be so hard on yourself...its all ok... no worries!!! Bev may have passed we just don't know..but things were heading in that direction according to her husband. I know they were making her comfortable.

    Thank you Rosie!!!

  • pirate_girl
    pirate_girl Member Posts: 31
    edited July 2022

    I’m sorry to report that Bev did in fact pass away back on July 14, obituary was posted online.
    https://www.echovita.com/us/obituaries/dc/washington/beverly-petersen-jennison-14941494


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