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Comments

  • el_tigre
    el_tigre Member Posts: 453
    edited June 2022

    thank you nicolerod! I will hopefully that will allow me to get to the next scan when it normally woudl be and not before.

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

    hello loves, just want to say I had chemo last Thursday and got 2 blood transfusions yesterday. I'm improving and hope to write more and share details. Hugs

    moth

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited June 2022

    Moth!!!! Hello

    Such good news. Keep getting stronger.

    Awesome news

    Thanks for pos

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

    Moth,

    Hope this new chemo works for you!

    Hugs, Susan

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

    Wonderful to see your post Moth and to hear that your liver is improving! Such good news. We’re all here holding our collective breaths hoping for good results from the chemo. Sending a big virtual hug!

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

    Started on Enhertu last Friday. Some serious fatigue yesterday and constipation since day 1. Nothing I can't handle but I sure miss the SE-free days on ARX-788!

    Hugs, Susan

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

    Dear Moth, we are all so happy to "see" you here. You are a real warrior, we hold our fists for you. We'd also want to hear from BAP!

    Dear Susaininsf, congrats on starting TDXd - many people say side effects subside over time. Uh, you guys are so blessed to have these options. I don't believe Enhertu will be approved here in LT before mid/end 2023...

    Saulius

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

    So i spoke to the IR today. We are going to do ablation to the 1 liver met that keeps growing (that previously had Y90-1/2 dose) I didn't realize you go under general anesthesia for this. She also answered my question that she does biopsies and treatment for lung mets she prefers cryo for lung mets.

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

    Well it's me again. I'm crying. I messaged the IR's asst to see if they scheduled the ablation and she said that the IR has to talk to my MO first and they already spoke Friday about everything the only thing they didn't speak about was my MRI from last week bc the IR didn't see it...now she did which I am fairly positive means she saw more tumors bc she mentioned that if there was more growth in liver she probably wouldn't do procedure.


    I know you all probably think I am wrong I don't feel in my gut I am...and I haven't really been wrong often ..I am so sick of this..I am sick that nothing has ever worked for more than 12 weeks and even that only happened 2 times I'm so angry right now I'm so upset and mad....I just want to scream and cry and cry and yell and just..ughhh


    I'm sorry. I feel so alone right now. I wish Sam (Ragasrabbit) were alive I would be talking to her. No one understands this crap except all of you

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

    nicole: I don't know what to say. It really is a terrible place to be in. I hope you are wrong.

    moth: Good to see you posting. Thank you for the synopsis of that link. I got kind of bogged down trying to read the whole thing.

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

    Dear Nicole, we are with you, we do understand what you go through. If IR refuses the procedure, and if you feel that you should get it, can your husband or anyone help you find an IR who would do the procedure (I am choosing other people to take load off you)? Saulius

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

    Nicole, I hope you’re wrong too. Could it be just a formality that IR wants to touch base with your MO?

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

    Thanks Rosie and Saulius. Well my MO and IR had spoke in depth a few days ago. My MO was actually the one that told me the IR would prefer MA over Y90 for this one... but turns out...I don't know what happened..but the IR scheduled the procedure....its July 20th...so all must have looked ok with the MRI... I am HAPPY and GLAD I was WRONG!!!!!

    This disease and the Scanxiety is NO JOKE its REAL....

    I am sorry for venting to all of you I know I must have sounded negative but thank you for listening :)


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

    Nicole, Great news!

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

    Nicole- Hoping all good for you and they zap that bugger and you will achieve stable for a while. I will be watching for your posts.

  • rk2020
    rk2020 Member Posts: 697
    edited July 2022

    Nicolerod - I’m so glad you were wrong. Vent away. We are more then happy to help you ride this roller coaster. I’ll be in your pocket on July 20.

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

    Thanks again Rosie...

    Candy and RK thank you so much. That really means a lot to me. Candy you have known me since my journey began when I was ER+...and nothing every working....thanks for sticking by me.

    Seriously you all "get it".... Thank you


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

    Dear Nicole, I am so happy you got the procedure. Yay to 20th of July - we'll be holding our fists for you. Saulius

  • s3k5
    s3k5 Member Posts: 411
    edited July 2022

    Nicole, glad everything is sorted out and a date has been fixed for the procedure. This time I am sure everything will work out fine. Do you have to take a break from systemic therapy? For how long?

    I am way past all procedures., too many liver Mets for radiation, MA or Y-90. None of the chemo seems to working. So my MO has put me on anti-androgen therapy since my liver tumor cells showed 80% androgen positivity. Will wait and see how this works

  • malebreastc
    malebreastc Member Posts: 96
    edited July 2022

    I was diagnosed with Bone, Liver and Lung mets, after 6 months of Ibrance +Fulvestrant + Xgeva I am NEAD. My pathological reports have always been normal even during diagnosis.

    Anyone knows if this means the affected organs can go back to normal function ?

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

    hi Salius , thanks for checking in. I’ve been off for the last two weeks bc I was on vacation. We had to drive 3 days to get to our destination , spend 8 days with family and then the 3 days back. I’m exhausted. Me and boat rides do not mix well. Otherwise the trip was uneventful health wise thank goodness. I was nervous I’d get stuck up there in the hospital. Just got home today and I’m exhausted

    I’m about a week behind on treatment but that’s okay. It was a nice little break from reality except having to drain daily and do my dressing changes.

    Nicole , I’ve had blood in my urine too. First the culture came back positive and I took fofomyosin for it. But it continues. So I’m having a urology appointment Monday and they will be doing a scope of my urinary tract. Not looki bc forward to it as it involves a freezing needle to the lady parts and they go up the urethra.

    Anyway my pet scan is at the end of the month. Hoping for stable or shrinkage of course.

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

    S3K.... No break in treatment for Microwave ablation...that was one of the reasons she picked it. I don't think the Trodelvy is working anyhow...but as long as things stay very slow maybe I can somehow get to stable.

    I did ask my MO about the chemo Venorelbine.... she said it is an option but it works the same as Eribulin/Halaven..which I have already had so ....yea.... I am thinking it probably wont work then... I also asked about Lxempra combined with Xeloda (I did Xeloda for 3 months when I was ER+ and I progressed) she said she wouldn't do it in combination even though I mentioned I know some TNBC Stage 4 that did it and it worked well...she said that would be a in a trial??? So that would only leave me with a trial of some kind or GEM/CARBO or Abraxane. I am PDL1 neg now and AR-

    Is there a Gem/Carbo thread I wanted to ask some questions about it?



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

    Dear BAP, it is so great to ear from you! I am sorry you are experiencing these difficulties but I am so happy you could travel. Getting out to see the world heals your soul, and I hope your exhaustion will pass soon. Big hugs, and you know... these forums for a few weeks without you and we begin to care:D Saulius

  • husband11
    husband11 Member Posts: 1,287
    edited July 2022

    My wife just got back her latest scan results (MRI and PET) and it shows continued stability, and quite wonderfully, a reduction in her ascites. She can really feel and see the reduced ascites. Why it reversed, we have no idea. It wasn't too long ago (maybe 2 months) that she had it drained. It's believed to be caused by the portal hypertension brought on by her cirrhosis of her liver. No sign of malignant cells in the drained fluid. Must have been some healing. Thank God, and thank you for your prayers.

    She continues on with Abemaciclib at the reduced dose (100 mg 2x daily) and exemestane. She is also taking enobosarm on her own (started less than a year ago), and takes all sorts of supplements (lactoferrin) and medicinal mushrooms (maitake and recently added chaga). Can't attribute her healing to anything in particular, as that would just be speculation.

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

    Nicole,

    We have all been there. You will come out on the other side. Letting go and crying can help you get through it. My Psycho Oncologist told me that, since I have already gone through that dark place, the next time won't be as bad. She was right. When I progressed so soon after starting ARX-788, I was able to handle the emotional disappointment much better.

    Hugs, Susan

  • lulubee
    lulubee Member Posts: 903
    edited July 2022

    What exactly does TUDCA do?

    ~ Lulubee

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

    husband ,

    That’s great to hear ! I can only hope my ascites goes down like your wife’s but I doubt it. I’m quite jealous yet happy for you guys. I drain everyday so going two months is quite the feat. I have portal hypertension too so I can only wish that it would go away so I can get rid of the fluid. I hate it so much.

    Happy for the stability

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

    husband,

    So happy for you and your wife! Still keeping Enobosarm in my back pocket.

    Hugs, Susan

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

    Husband!!! YAY ANSWERED PRAYERS!!! AMEN!!!! So happy for you both.

    Lulubee please google about TUDCA it helps the liver function better.

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

    Dear Husband11, huuge congratulations, you guys deserve it!

    Saulius

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