Support for our sister ABeautifulSunset!

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  • Jsniffs
    Jsniffs Member Posts: 65
    edited July 2019

    Sunset - Sending lots of positive thoughts and vibes your way. Smile when you can, lots of people are here for you.

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  • Micmel
    Micmel Member Posts: 9,450
    edited July 2019

    a beautiful sunset~ Stopping by to give you some

    Hug and kisses and give you my

    Strength! Much love ! image

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  • jackboo09
    jackboo09 Member Posts: 920
    edited July 2019

    Thinking of you Sunset. Very best wishes.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2019

    Thinking of you, my friend.

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  • bigbhome
    bigbhome Member Posts: 840
    edited July 2019

    Hi beautiful sunset!

    I was sorry to hear of your struggles with the pain. But now you will be starting a new treatment and I am praying for you to have spectacular results!

    Hugs and prayers,

    Claudia

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited July 2019

    ABeautifulSunset, hoping your pain eases substantially, and that you respond well to your next treatment.

    ShetlandPony, thank you for alerting us so that we can cross our fingers and toes in the hope that everything smoothes out for sunset!

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  • ann273
    ann273 Member Posts: 209
    edited July 2019

    Best Wishes with everything Sunset!

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited July 2019

    Thanks for all of the good wishes. The chemo last week did indeed tank my platelets. Down to 41!

    Waiting in office to see what is the next step.


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited July 2019

    tomorrow will get platelet infusion plus an injection of NPLate (very expensive and not covered by ins u less platelets are under 30k..... yikes.)

    After that hope I'm ok to do chemo on Thursday.


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  • JFL
    JFL Member Posts: 1,947
    edited July 2019

    I hope the infusion and the other drug can boost up those platelets so that you can do your next chemo. Can the MO's medical staff appeal the insurance coverage? I get a lot of things initially rejected but my MO's office appeals and my MO will often speak to the medical director making the coverage determinations at the insurance company.

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  • jobur
    jobur Member Posts: 726
    edited July 2019

    Thinking of you tonight ABeautifulSunset and hoping that platelet infusion goes well and you can get chemo Thursday. As Bestbird says, all fingers and toes crossed for you! Is your pain any better?

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited July 2019

    Joining your tribe of supporters ABS

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited July 2019

    Hi Beautiful (Sunset).

    Did they ever figure out why your platelets dropped? You might have said already and I missed the post.

    So glad you are getting platelets so you can get your treatment. This is just a blip..you will get stable soon.

    You have a huge cheering crowd just for you!

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited July 2019

    Oh no! I wrote a whole long text (not my usual style) venting and I lost it!!! 😩😩😩

    Waaaaaaa..... my days.

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  • Jaylea
    Jaylea Member Posts: 478
    edited July 2019

    Sending a prayer up right now, Sunset, that platelets rebound perfectly for Thursday chemo, and that insurance sees the wisdom of coverage of NPLate. Wail away, we are here for you.

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited July 2019

    I had a platelet infusion today.... immediately jumped the platelets from 40 to 109 ! Plus I had NPlate (generously sponsored by my loving husband) . So I am pretty positive I'll be able to have chemo on THURSDAY. also, I am finally having a consult with my ONC, whom I haven't seen in over a month due to a (his) family emergency. I feel like, by the end of this week, I may start to have some kind of answers to all of this pain (which I still have).... and at least some of my otherquestions. Thank you for all of the sisterly thoughts and support. Mine are also with you, every day.

    Sunset



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  • Andi67
    Andi67 Member Posts: 423
    edited July 2019

    Sunset, as I write this I am watching a Beautiful Sunset from my house, which I do almost every evening. My favorite time of day. Joining everyone else to send you more strength, love, hugs and positive vibes. So glad those platelets are up and that chemo will probably be a go on Thursday. Fingers crossed that it does the trick, and the pain and discomfort goes away SOON.

    We are all here for you!

    XO

    Andrea

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  • JFL
    JFL Member Posts: 1,947
    edited July 2019

    Glad the infusion went well! Onward and upward to chemo. Ahh, the things we end up wishing for as metsters.

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2019

    wow. SO good to be "home"! I have been terribly mismanaged at the alternate hospital I was in. Because of that I have suffered weeks of potentially unnecessary pain. And probably set backs in treatment. At least I feel I am currently getting back on track. Hoping to have a game plan for next week. Looking like spinal compression. I don't even care, I just want the right thing to be treated. I should have updates and a game plan by next week. Maybe I'm not dying this summer after all.

    Sunset


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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited August 2019

    Sunset, the mismanagement is inexcusable! So glad you're home and will get back on track with treatment. Hoping those platelets stay up and the chemo kicks the damn cancer back! Thinking of you and sending vibes of strength; you've been through too much and need some relief and rest.

    Shetland, I just came across this thread today and thanks to you for starting it.

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  • Micmel
    Micmel Member Posts: 9,450
    edited August 2019

    So glad your home darling.. NO you’re not going anywhere this summer. Ya hear me ?

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2019

    NEW IFO:

    No spinal compression. Just a lot of Mets up and down spine and a fracture at T 5. I don't know what this means for me. Plan is to just keep doing Vinocap and hope for the best. There isntmuch left for me after that. I'm pretty resistant and not a candidate for any trials. Trying to get the pain under control so i can have some life in my life, so to speak. Doc wouldn't give me a timeline, but said at 18 and 22, it was definitely time to have a real conversation with my kids. I guess they should be prepared mom ain't gonna be around forever. Sad for them.

    Sunset

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  • Anotherone
    Anotherone Member Posts: 633
    edited August 2019

    Hugs to you.

    They are going to be fine , you know they are. I was 40 when my mum died and I still missed her and miss her even now. But it is unavoidable.On another hand 18 is better than 14 and much better than 10 ..

    Talking about you - there may well be something. Have you looked into all the alternative /complementary stuff ( I hope you will forgive me if I am teaching granny to suck the eggs 😘). Wishing you to sort the pain first and foremost. Hugs again.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited August 2019

    Hi Beautiful Sunset. Do you think you can physically manage a second opinion at a large cancer/NIH facility? Who knows..maybe you can recycle the antihorminals or when you are stable from pain (and platelets are behaving), you can try other txs not listed on your bio?

    You must be so tired, disappointed and worn out. I just want to reach out and hold you. But since I can't, I will put all my positive thoughts towards vinocap working its magic.


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2019

    thanks Sandi. I am at an NIH Cancer Center. I have already recycled some of the anti hormonals thru in different combos. I've really had an amazing 8 years, full of fun and family memories and great life experiences. Some don't get even that. I'm so grateful for it. My ONC seems to think a harder chemo at this point could kill me. That my body is just too inundated and weak. I do have one more possibility to try the when the time comes. Dr Nagourney assay seemed to suggest possible success with metformon and Envirolimus. If onc thinks I can tolerate it, that's my next go before going In to hospice. All I want now is a few months of Maybe feeling ok, ...to spend with my kids and my friends. This back crap has really dampened my spirits. I wish I had more definitive answers, but Really do any of us?

    Sunset

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  • candy-678
    candy-678 Member Posts: 3,950
    edited August 2019

    Sunset- So sorry for everything. I hated to read your posts, but I guess we will all be there someday. My prayers to you and your family. God help us.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited August 2019

    Sunset you might want to know about Dr Keith Block in Skokie, Ill. He has some very innovative ways of giving chemo such as a very low dose of chemo, but dripped in constantly over a whole day from a fanny pack, or other kinds of dosing/administration techniques and couples them with IV nutritionals. He sees a lot of people whose MOs say there are not any treatments left for them and is often able to help them and rebuild their systems to allow for more treatment. He gets great results.

    PS I admire your gratitude for the last 8 years. Its a beautiful, strong attitude and I am sure that it sets a great example for your kids. Gentle hugs to you and your family.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited August 2019

    Sunset beautiful sunset our hearts are all with you as you navigate these waters. You have always been one of my favs on these threads and I love your grace and kindness and wisdom. I am glad that you are able to say that you can look back at 8 years and feel complete. So many folks cannot say that. You are a beautiful and amazing sister and soul and you are being loved and held by so many. We are here for you 💜💜💜💜

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited August 2019

    Sunset, I know this is a difficult time for you, and I admire your strength and attitude. The conversation with your children will not be easy, but they might know more than you suspect. They will be okay, but you know in your heart that they will always remember the love and joy your have with them. I hope you still have more good times to share. Eight years is a long time, but I feel like no time is really enough. I have hit four years, certainly more than I expected, and I call them my bonus time. I try to breathein every moment, every experience, every smile, and every hug. I also try to do some little thing every day to brighten that day for someone else. I don’t always succeed, of course, but it feels good when I do. I will continue to think good thoughts for you.

    Hugs and prayers from, Lynne


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  • ann273
    ann273 Member Posts: 209
    edited August 2019

    Sunset, my onc mentioned a few times that chemo may not work as well on bone mets as anti hormonals. Is there a chance you could try afinitor at a lower dosage?

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